Current research kc ivz 2016 2017

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CURRENT RESEARCH 2016-2017

CENTRE FOR INNOVATION IN HEALTHCARE



CONTENT

RESEARCH GROUP CHRONIC ILLNESSES

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RESEARCH GROUP DEMAND-DRIVEN CARE

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RESEARCH GROUP LIFESTYLE AND HEALTH

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RESEARCH GROUP PROCESS INNOVATION IN PHARMACEUTICAL CARE

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RESEARCH GROUP SPEECH AND LANGUAGE THERAPY

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OTHER

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PREFACE

With this digital book of abstracts, we aim to create ever more ties and links between education and research. Therefore, the Centre for Innovation in Healthcare is honoured to present the research projects which are in progress in the academic year 2016 - 2017. In this third annual edition, we present our work to lecturers and students of the Faculty of Healthcare and of course to everyone who is interested in our research. In the following pages you will find abstracts of research studies within the areas of functions and structures, activities and participation in society, the physical and social environment and personal factors. A connoisseur recognizes in this the knowledge framework of the International Classification of Functioning, Disability and Health (ICF). Reading the abstracts, you will find a rich palette of research studies that all focus on promoting the autonomy of people, in their roles as citizen, patient and/or caregiver. Providing effective knowledge for promoting autonomy is at the core of our mission. Traditionally, in health research, an emphasis on impact studies is maintained. However, we regard the development and implementation of interventions as equally important for healthcare practice. We aim our research projects to be meaningful for practice. Questions and demands from professional practice are at the base of our research. After all, the results of our projects are implemented in that same practice. Working with a common methodological model, the Medical Research Council (MRC) model, provides for this. While reading this compendium of abstracts of research studies, you will find it is organized per research group with an extra category ‘research outside the research groups, within our knowledge centre’. With the glossary in the back the abstract can be found by researcher name. Readers might be interested in a specific topic or they might have questions about an adjacent area of research, and find answers or examples in the approach of certain research projects. Lecturers and students are invited to look for a possibility to participate in a research study. Whatever your motives are for reading this publication, you are invited to find any opportunity and possibility this anthology of research studies might offer you and will bring up ideas for cooperation.

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I am looking forward to successful and long-term cooperations between you and our research centre. Roelof Ettema PhD, senior researcher and principal lecturer Institute of Nursing Studies and Research group Chronic Illnesses, Centre for Innovation in Healthcare

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RESEARCH GROUP CHRONIC ILLNESSES Professor Marieke Schuurmans


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The research program of the chair Chronic Illnesses focuses on prevention and early detection of preventable or reducible generic effects of disease and treatment that affect daily functioning. Daily functioning is defined in terms of activities of daily living (ADL), such as washing oneself, dressing, eating, and exercise. But it is also defined in terms of instrumental activities of daily living (IADL). These include the activities that a person can carry out, such as independent errands, phone calls, dealing with money, and travel. Research is being conducted into loss of daily functioning and factors that induce loss of daily functioning, such as pain, infections, depression and delirium. Optimum daily functioning is the main outcome measure. Self-management and autonomy are increasingly in the centre of attention. Research is not limited to a specific domain or a specific disease patient category. Within the research, there is relatively much attention for older people with complex problems because of multimorbidity. The general research programme is made up by two lines of research.

Prevention of loss of daily functioning due to ‘Ageing & chronic conditions’ This line of research focuses on preventing loss of daily functioning due to ageing and chronic conditions. Within this line, research is primarily directed at people who live at home and are supported by family, primary care and home care nursing. The relevant functionality problems stem from chronic (multi) morbidity issues as polypharmacy. Self-management support is an important aspect within this research.

Prevention of loss of daily functioning due to ‘Acute events’ The second strand is aimed at preventing loss of daily functioning due to acute events. This line of research is primarily aimed at people who are hospitalised, and are at increased risk of loss of daily functioning. People's problems stem from multimorbidity or cardiovascular disease, including stroke. Besides these two lines, a third line of research is developing, aimed at professional development and leadership within the nursing profession. The research of the chair is conducted within the framework of the World Health Organisation International Classification of Functioning (ICF). It follows the Medical Research Council’s approach for development and testing of complex interventions. The research is initiated and conducted in close collaboration with patients, professionals and students. Results aim at improving clinical practice, enabling nurses to realize evidence-based effective patient outcomes.

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RESEARCH GROUP CHRONIC ILLNESSES Preventing loss of physical functionality

Author: Title:

Provisional end date:

Debbie ten Cate RN MSc Early nursing nutrition intervention to prevent malnutrition before and after hospitalization in older community-dwelling people 2019

Background and research question The prevalence of malnutrition in elderly is high and ranges from 0% to 51% in community-dwelling elderly and from 3.1% to 51% in hospitalized elderly. Malnutrition is a frequent and major problem and is associated with negative outcomes such as infections, lower functional status and mortality. Therefore it is important to prevent malnutrition when older community-dwelling people are indicated for hospital admission, hospitalized or discharged from hospital. For this purpose an optimal nutritional status is important. It takes time to reach this. Homecare nurses can make an essential contribution to this. They can provide that older community-dwelling people in the period before and after hospital admission at home achieve an optimal nutritional status to prevent malnutrition. An effective nursing nutrition intervention could be used. However evidence is lacking for such an intervention in the preadmission and postadmission period. In this PhD program an early nursing nutrition intervention will be developed and feasibility and effectiveness of this intervention will be tested. For this purpose the guidelines for development and evaluation of complex interventions of the Medical Research Council (MRC) will be followed. The goal of the intervention is to prevent malnutrition in community-dwelling elderly before and after hospitalization. The intervention will be used by homecare nurses. The PhD program is part of the Dutch project “Basic Care Revisited�. A total number of ten intervention studies in nursing basic care are performed to generate scientific evidence to inform nursing practice, because nursing interventions generally still lack scientific evidence. Design/methods Study 1: Interventions to prevent malnutrition before and after hospitalization in 10


older community-dwelling people: A systematic review of the literature. Objective: In order to establish a base for developing an effective early nursing nutrition intervention, existing evidence in literature should be elucidated. Study design: Following the PRISMA-statement guidelines the literature will be systematically reviewed and critically appraised using the Cochrane appraisal lists and graded using the GRADE-system. Study 2: Development of an early nursing nutrition intervention to prevent malnutrition before and after hospitalization in older community-dwelling people: development study following phase 1 of the MRC guideline. Objective: To develop an early nursing nutrition intervention to prevent malnutrition before and after hospitalization in older community-dwelling people. Study design: In a team of researchers, nurses, dieticians and patients, the revised guidelines for developing and evaluating complex interventions of the New Medical Research Council (MRC) will be followed, including identifying existing evidence, identifying and developing theory and modelling the process and outcomes. Study 3: Feasibility of an early nursing nutrition intervention to prevent malnutrition before and after hospitalization in older community-dwelling people: feasibility study following phase 2 of the MRC guideline. Objective: To test the early nursing nutrition intervention to prevent malnutrition before and after hospitalization in older community-dwelling people on its feasibility to detect possible problems with the acceptability, compliance and delivery. Study design: Following the MRC guidelines concerning testing the feasibility regarding testing procedures, estimating recruitment and retention and determining the sample size. Study 4: Effectiveness of an early nursing intervention to prevent malnutrition before and after hospitalization in older community-dwelling people: preliminary randomized controlled trial following phase 2/3 of the MRC guideline. Objective: To investigate the effectiveness of an early nursing nutrition intervention to prevent malnutrition before and after hospitalization in older community-dwelling people. Study design: Randomised controlled trial design. Main results to date We are currently conducting study 1, the systematic review and two substudies under study 2. The aim of the first substudy is to determine the feasibility and clinical relevance of food diaries in older community-dwelling people. The aim of the second substudy is to explore the current opinion and beliefs of nurses working in homecare and hospitals about prevention, diagnosis and treatment of malnutrition in older community-dwelling people. 11


RESEARCH GROUP CHRONIC ILLNESSES Preventing loss of physical functionality

Author: Title:

Provisional end date:

Roelof Ettema PhD The PREDOCS-programme for predicting and preventing postoperative decline in older cardiac surgery patients: A multi-centre cluster randomized stepped wedge trial February 2017

Background & research question Given the growing number of vulnerable, older cardiac surgery patients, the preadmission PREDOCS programme is developed to reduce the incidence of postoperative complications. Also, the programme appeared feasible for patients and nurses to use in clinical practice, and it is estimated that its use is already cost effective when only 0.6% to 1.6% of the patients would benefit. The programme should be built into the hospital’s cardiac surgery pathway or applied in home care. In this study, the clinical effects of this complex multicomponent intervention are evaluated. Design/methods In a stepped wedge design in 444 patients of 65 years and older in three cardiac surgery centres in the Netherlands, the PREDOCS programme is tested on its clinical effect. The three centres are randomly assigned to start the intervention. The period before this start is de control period. Patients receiving the intervention will receive usual care and the PREDOCS programme. Patients in the control group will receive usual care only. The PREDOCS programme is delivered by a nurse in a consult in the hospital outpatient department four to two weeks before the hospital admission. Main results to date It is expected that the current incidences of postoperative occurring delirium approximately 18%, depression 15%, pressure ulcer 11%, and infection 8%, can at least be reduced by respectively 5%, 4.5%, 4% and 3.5%. Following the intention to treat principle, multilevel regression analysis will be performed, adjusted for baseline differences between the groups. To evaluate the costs, the total invested capacity of nurses will be measured, and costs will be calculated 12


and compared with health revenues in all patients in the intervention centres, by calculating the decrease in care demand with the accompanying costs saving. Discussion Older patients should be adequately prepared before an elective hospital admission. Despite the fact that this is in accordance with the fundamentals of nursing, this notion is unfortunately not common in nursing practice. This stepped wedge trail is an adequate approach with relatively low costs for measuring the effect of the PREDOCS programme. Such a design is particularly relevant in cases where the intervention will likely do more good than harm. In such a study with a complex design, careful planning and monitoring are required in order to ensure that a robust evaluation of the effectiveness of the intervention is undertaken. This will support the notion that older patients should be adequately prepared before an elective hospital admission.

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RESEARCH GROUP CHRONIC ILLNESSES Preventing loss of physical functionality

Author: Title:

Provisional end date:

Yvonne Jordens MSc. and Roelof Ettema PhD The PREDOCS-programme for predicting and preventing postoperative decline in older cardiac surgery patients: An implementation study in twelve cardiac surgery centres in The Netherlands, using the Behavioral Change Wheel February 2017

Background & research question Given the growing number of vulnerable, older cardiac surgery patients, the preadmission PREDOCS programme is developed to reduce the incidence of postoperative complications. Also, the programme appeared feasible for patients and nurses to use in clinical practice, and it is estimated that its use is already cost effective when only 0.6% to 1.6% of the patients would benefit. The programme should be built into the hospital’s cardiac surgery pathway or applied in home care and the clinical effects of this complex multicomponent intervention are evaluated. In this study the enablers and barriers in the context of different hospitals is studied. Design/methods In twelve of the sixteen cardiac surgery centres in The Netherlands the PREDOCS programme will be implemented in the hospital’s cardiac surgery pathway, using the Behavioral Change Wheel. In each hospital the team of nurses and doctors decide upon the inmplementation strategy and bring it in line with the directions of the BCW. In a learning community enablers and barriers are determined and hospitals will measure these in practice. Each six month a process evaluation will be executed by interviewing nurses in the hospitals. Fourth years bachelor of nursing students do the interviews. Furthermore, the incidence of postoperative complications in these older cardiac surgery patients will be measured and monitored.

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Main results to date The project is recently started and the first process evaluation has been done, showing a wide variety of mainly barriers for implementation. In October 2016 the first national learning community meeting will be organized. Discussion Older patients should be adequately prepared before an elective hospital admission. Despite the fact that this is in accordance with the fundamentals of nursing, this notion is unfortunately not common in nursing practice. This stepped wedge trail is an adequate approach with relatively low costs for measuring the effect of the PREDOCS programme. Such a design is particularly relevant in cases where the intervention will likely do more good than harm. In such a study with a complex design, careful planning and monitoring are required in order to ensure that a robust evaluation of the effectiveness of the intervention is undertaken. This will support the notion that older patients should be adequately prepared before an elective hospital admission.

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RESEARCH GROUP CHRONIC ILLNESSES Preventing loss of physical functionality

Author: Title:

Provisional end date:

Sigrid Mueller-Schotte OD MSc Old and well functioning: determinants of (visual) functioning and preservation of functioning in the elderly (PROFIEL /VFPROFIEL) Summer 2016

Background Being able to function and live independently at older age is an important factor in keeping good quality of life (QoL) and vitality. Vision affects several domains of functioning, such as mobility, the ability to perform (instrumental) activities of daily living ((I)ADL)), mental and cognitive state, and QoL. The process of gradual deterioration of the (visual) function is often not detected but considered a normal ageing process. However, early detection and timely treatment can delay the progression of disease, restore (visual) function, or affect cognitive abilities, thus preserving (vision-related) QoL (VRQoL). The aim of the PROFIEL/VF-PROFIEL study is to gain insight in factors (visual and non-visual) contributing to physical, cognitive, and psychosocial functioning in the elderly, to enable them to stay independent. Design/methods The PROFIEL-study has a longitudinal study design. Information was collected on medical history, lifestyle, somatic, cognitive, functional and psychosocial status in 1999-2002 and 2010-2011. The vision-related study (VF-PROFIEL) is an extension of the PROFIEL-study with a cross-sectional design. Research question 1: Study design: Population: Study parameters/endpoints Endpoint:

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Ocular straylight: a determinant of QoL in the elderly? A cross-sectional population-based study. 120 men and women aged 50-89 years. VRQoL measured by the National Eye Institute Visual Functioning Questionnaire (NEI-VFQ25/NL).


Main study parameter: Data analysis:

Results: Research question 2: Study design: Population: Study parameters/endpoints Endpoint: Main study parameter: Data analysis:

Results: Research question 3: Study design: Population:

Study parameters/endpoints Endpoint: Main study parameter: Data analysis:

Results:

Ocular straylight (Oculus C-Quant instrument). Linear regression models will be used to assess the association between SL modelled continuously and cut off at the recommended fitness-to-drive value (SL ≼ 1.4 log(s)) and VRQoL, adjusted for confounders. Pending. Visual functioning and cognitive activity engagement in community-living elderly A cross-sectional population-based study. 120 men and women aged 50-89 years. Florida Cognitive Activity Scale (FCAS) and Mini-Mental State Examination (MMSE) Visual acuity, contrast sensitivity, and visual function (VF) compound score. Linear and logistic regression models, adjusted for confounders, will be used to assess the association between VF and FCAS/MMSE. Pending. Risk factors of disability and the relation with limitations in IADL after 10 years A longitudinal population-based study. 537 men and women aged 40 to 79 years at baseline. Number of limitations in IADL and mobility performance Risk factors of disability. Multivariable (Poisson) regression and logistic regression models, adjusted for confounders, will be used to assess the association between IADL/mobility performance. Pending

Discussion Our study results contribute to elucidating the epidemiology of functional decline and provide the opportunity for a multidisciplinary care approach for older adults. They will provide starting points for interventions to preserve visual function, cognition, mobility and (I)ADL. All domains are equally important to maintain self-management, self-efficacy, and autonomy at older age. 17


RESEARCH GROUP CHRONIC ILLNESSES Preventing loss of physical functionality

Author: Title:

Nienke Bleijenberg RN PhD Early Detection and Prevention of Functional Decline in Older People in Primary care and Home Care.

Background Maintaining independence as long as possible is the ultimate goal for older people. Nurses provide a key role in achieving this goal. Being able to live independently at home requires the ability to perform activities of daily living (ADLs), such as bathing or dressing, instrumental activities of daily living (IADLs), like shopping, preparing meals, and managing finances, and mobility tasks such as walking moderate distances and climbing up stairs. Disability, or functional decline, defined as difficulty or need for help in carrying out these activities, affects quality of life, is associated with hospital and nursing home admission, caregiver burden, mortality, and high health care costs. Due to the global population aging, especially in the oldest old, preventing disability is a high priority for older people and their caregivers, our health care system and society. This stresses the importance of early detection of older people at risk for functional decline and the development of successful (preventive) interventions that may reduce of delay decline and improves quality of life. Nurses, especially in primary care and home care need to be adequately trained and prepared to be able to early detect functional decline and provide evidence-based interventions. To date, successful preventive primary care programs to prevent or preserve daily functioning in older people are lacking. An important impediment to the development of preventive interventions is an incomplete understanding of later life disability. Knowledge regarding the distinct trajectories of functional decline, effective tools to early identify people at risk for decline and the causal mechanism of preventive care programs. This knowledge is essential for nurses in order to provide optimal tailored care. Therefore, this research line we are focusing on the following questions: 1. Better elucidate the epidemiology of functional decline in older adults and older people with multimorbidity. 18


2. Unraveling the working mechanism and successful components of existing preventive interventions in order to preserve daily functioning and improving its methodology. 3. Development and evaluation of multicomponent interventions aimed to preserve daily functioning and maintaining independence in older adults. 4. Developing and evaluating an interprofessional proactive training program for professionals in primary care who provide care to frail older people at home. Design/Methods To answer the research questions, different methodological approaches will be used. To better elucidate the epidemiology of functional decline in older adults several studies will be conduct studies with various research designs such as etiological, prognostic and intervention research. Both existing longitudinal datasets such as the Dutch Nationally TOPICS dataset and data from the UPROFIT trial as well new datasets will be used. The Medical Research Council (MRC) Framework for the Development and Evaluation of Complex Interventions will be used as a theoretical framework and guidance. Main results to date In the Utrecht Proactive Frailty Intervention Trial (U-PROFT) (in Dutch Ouderenzorgproject Midden Utrecht – Om U) a comprehensive multicomponent nurse-led primary care program for older people was developed and evaluated. This program aimed to preserve functional decline was evaluated in a large three-armed cluster randomized trial. Over 3000 older people (aged 60+), and ≼ 350 caregivers participated. At one-year follow-up people in the intervention group showed better preserved daily functioning compared to people in the control group. Moreover, high-educated persons significantly improved daily functioning. Older people, practice nurses and general practitioners highly appreciated the program. Based on the U-PROFIT data, we examined the onset and development of (I)ADLs, and showed that the impact chronic conditions on the each (I)ADL was substantial. In another study, we investigated the development, content and delivery of existing Dutch nurse-led primary care programs. These programs were evaluated within the Dutch Nationally Care for the Elderly Program (in Dutch NPO). The content of the care plans as well as the training of the nurses will be compared in relation to the outcome of the trial results. The results of the interprofessional training program will be expected mid 2017. Discussion To provide efficient and evidence-based care to the rapidly increasing group of older people, effective nurse-led primary care interventions are needed to preserve daily functioning.

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RESEARCH GROUP CHRONIC ILLNESSES Preventing loss of physical functionality

Author: Title: Provisional end date:

Linda Smit RN, MSc. Early detection and Prevention of functional decline in older people in primary care. September 2019

Background Within an ageing population, the number of older adults with multimorbidity is rapidly increasing. Most older adults prefer to living independently at home as long as possible. This requires being able to perform daily activities such as bathing and dressing, and instrumental activities of daily living (IADL) such as shopping. To date, successful intervention programs of early identification of those older adults at risk for functional decline and a subsequent care program aimed to prevent functional decline are lacking. Therefore, the overall aim of our research is to determine successful components and unravel working mechanism of proactive primary care programs for older persons aimed to maintain independent living. To achieve our overall aim, several specific aims were determined: 1. To examine the complexity, components and underlying mechanisms of several multicomponent nurse-led care programs, and to explore which elements older people find important in future programs. 2. To examine commonalities and differences of the individual care plans developed by the nurses/interventionists, to explore the perspectives of older people on the care delivered in the programs and which elements of care (plan) older people find important in future programs. 3. Development and evaluation of an interprofessional training "proactive comprehensive primary care for older people. 4. Determining risk factors & long-term trajectories of functional decline of older people. 5. Developing of a proactive primary care program for older people with mulitmorbidity based on the above standing building blocks.

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Design/methods The Medical Research Council (MRC) developed a framework to guide researchers with the development and evaluation of complex interventions (Craig et al, 2008). In the current study, this framework is used as a guidance to better elucidate the effective components and mechanism of complex interventions such as a proactive care program. Different methods will be used such as quantitative and qualitative data collection, as well as the combination of both methods (i.e. mixed-methods design). A mixed-methods design will be used for aim 1 and 2 with data from the TOPICS-MDS questionnaire. Aim 3 will consists of a qualitative as well as a quantitative approach as knowledge and attitude of students will be measured before and after the interprofessional training. A quantitative approach will be used for aim 4. For aim 5, the MRC Framework will be used as guidance. Main results to date The results will provide knowledge regarding why and what type of intervention components and ingredients are most promising within proactive primary care programs for older people. These elements will be incorporated in future preventive nurse-led programs to match the individual needs of older people.

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RESEARCH GROUP CHRONIC ILLNESSES Rehabilitation after a stroke

Author: Title: Provisional end date:

Mariska van Dijk MSc Detection of depression in the early stage of stroke: opportunities in nursing care September 2016

Background & research question In the Nursing Rehabilitation Guideline Stroke (NRGS), 21 recommendations focus on early screening, detection, and nursing interventions for post stroke depression (PSD). However, implementing clinical practice guidelines into clinical practice often proves difficult. Nurses state that they need recommendations provided in a more practical form to be able to use them in daily care. Therefore, a toolkit including screening of PSD and nursing interventions was developed and tested on its feasibility. However, no standardised instrument is available for screening for depression in patients with communicative impairments after stroke. After careful review of the literature, the Signs of Depression Scale (SODS) was identified for the assessment of PSD in patients with communicative disorders. However, evidence for the psychometric properties of the SODS is lacking. Therefore, the psychometric properties of the SODS were investigated in the second study. Design/methods Study 1: Detection of Depression in the Early Stage of Stroke: feasibility and sustainability of the Post Stroke Depression toolkit Study design: a concurrent embedded strategy of mixed methods, pre-test post-test design, in which qualitative data are embedded in a quantitative design. Population: nurses working on the participating neurological wards. Study parameters/endpoints The main study parameter: the percentage of nurses using the PSD-toolkit. Secondary study parameters/endpoints: nurses' perceived barriers and facilitators to provide PSD care; the clinical utility of the PSD-toolkit; the level of team learning; the level of expertise of nurses concerning PSD. 22


Study 2: Detection of Depression in the Early Stage of Stroke: psychometric properties of the Signs of Depression Scale Study design: a cross-sectional multi-centre study, using a census approach. Population: patients in the early stage post stroke admitted to neurological wards of a university hospital and two general hospitals and their proxies, as well as the nurses responsible for the care of the participating patients.

Study parameters/endpoints Index test: The Signs of Depression Scale revised (SODS-R). Reference tests: 1. The Composite International Diagnostic Interview (CIDI) 2. The Barthel Index (BI) Main results to date Study 1: 150 nurses were included in the study. Data on the use of the PSD toolkit on 1,100 patients were collected, 30 nurses were interviewed, 3 focus groups were organised, patients’ perceptions on the PSD toolkit were investigated, and the use of the PSD toolkit in daily practice was examined by participating observation. 80% of the patients were screened on depression and interventions were deployed at an average of 67%. - Data analysis in progress. Study 2: 116 patients and 107 proxies were included. - Data analysis in progress. Article 1. Identifying depression post stroke in patients with aphasia: a systematic review of the reliability, validity and feasibility of available instruments - Provisionally accepted May 2015 Article 2. The Dutch Version of the Signs of Depression Scale: Validity and Reliability in Patients with Aphasia after Stroke - Under review 23


RESEARCH GROUP CHRONIC ILLNESSES Optimizing self-management

1st author: Title:

Provisional end date:

Yvonne Korpershoek RN MSc, PhD student Development of a mobile action plan to enhance self-management including early detection of exacerbations in patients with COPD (M-ACZiE). October 2018

Background & research question COPD is one of the most prevalent chronic diseases worldwide and the fourth leading cause of mortality. The natural course of COPD is interrupted by exacerbations: a sustained worsening of patients’ baseline symptoms, which are beyond normal day-to-day variability, and may warrant medical treatment’ . These exacerbations have a serious negative impact on quality of life, are associated with accelerated lung function decline and increased mortality. Selfmanagement skills are important to detect exacerbations in an early stage and take prompt actions to reduce the impact. However, detection of fluctuations in symptoms appears to be difficult for patients and results in inadequate reactions. Supporting patients in early detection of an exacerbation and teaching selfmanagement skills by a written action plan has shown to decrease the acute impact of exacerbations on health status and to accelerate recovery time. However, no effects on health-related quality of life and healthcare utilization were observed. A more comprehensive and individualized strategy is needed to enhance self-management of exacerbations. It is important to develop a strategy that fit patient’s needs, perceptions and capabilities towards exacerbation management. Mhealth creates possibilities to add several accessible and essential elements on regular care and, subsequently, to target and tailor self-management interventions. A more individualized strategy is expected to be more effective on quality of life and healthcare utilization. The primary objective is to develop a tailored mHealth intervention to decrease the impact of exacerbations by enhancing self-management, including early detection, of exacerbations in COPD patients. More specific, a mHealth

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intervention that is: safe and patient friendly, able to manage different manifestations of exacerbations in/between patients and is meeting patient’s needs, perceptions and preferences. Design/methods An iterative user-centered development design is used for the intervention development being in accordance with the development-phase of the MRC framework. This phase is extended with building blocks as described by Van Meijel’s evidence-based nursing intervention development model. In this design several steps may be performed parallel in time and it may be necessary to return to previous steps based on the results. A literature review has been performed to identify strategies to reduce the impact of exacerbations, followed by a Delphi-study in which consensus was reached between international leading experts on the most relevant and feasible self-management behaviors. Furthermore, a problem-and-needs analysis has been performed with qualitative research methods. Individual indepth interviews were performed to identify patients perceptions, needs and capabilities regarding exacerbation-related self-management. Furthermore, focusgroup interviews were organized to identify patient and healthcare providers perspectives towards potential benefits and barriers of mHealth. In addition, a current practice analysis was performed to examine the value of the intervention in comparison with regular care. Finally, identified knowledge will be translated into target behaviors resulting in a first draft of the intervention. Main results to date Literature review & Delphi-study: Overview of most relevant and feasible self-management behaviors. Qualitative studies: • Conceptual model describing factors influencing exacerbation-related selfmanagement. • Overview of potential benefits and barriers regarding mHealth to support self-management (patient & expert perspective)

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RESEARCH GROUP CHRONIC ILLNESSES Professional attitudes/leadership

1st author: Title:

Thóra B. Hafsteinsdóttir, RN, PhD Leadership in Nursing Research

Background & research question Nursing has been an academic discipline for decades. Due to the growing evidence for the impact of nursing on societal and patient outcomes and the fact that nursing accounts for a large part of the health care work force it is important to invest in the career development of nurse researchers in nursing faculties. Although nursing moved into higher education years ago, the research capacity and infrastructure for nursing research is still fragile and struggling. Nursing research is a continuing priority in nursing academe, but the lack of academic positions and increased competition for funding makes it difficult for nurses to develop a sustaining carrier in nursing research. The recognition of the complexity of these different roles and organizational contexts demands strong leadership and mentoring competencies to meet the health challenges of the future. Leadership entails influence, occurs within a group setting and involves achieving goals that reflect common vision. Although our systematic review showed inconclusive evidence for the positive influence of mentoring on research and research career development, postdoctoral nurses experience mentoring, leadership and peer-support as essential in supporting ongoing research activity. Based on this background we set up the following studies aiming to: • investigate the impact of the newly developed Leadership Mentoring in Nursing Research Program on postdoctoral nurses working in research and taking part in the program (study 1). • identify leadership skills of Dutch post-doctoral nurses and to investigate if leadership skills are related to faculty stress and job satisfaction and (preliminary aim) to investigate the psychometric properties of the Dutch Leadership Practices Inventory, Faculty Stress Index and Job Satisfaction Scale (study 2). 26


• • •

explore post-doctoral nurses’ experiences of their leadership and career development in research functions in the Netherlands (study 3). investigating leadership skills of nurses in clinical practices in the Netherlands (study 4). investigate leadership skills of postdoctoral nurses in the Netherlands (study 5).

Design/methods • Study 1. The Leadership Mentoring in Nursing Research (LMNR) leadership program was developed and the impact of the program is explored using a mixed methods study using a qualitative and quantitative methods. • Study 2. A survey is conducted among Dutch postdoctoral nurses working in research. • Study 3. A qualitative study is conducted among Dutch postdoctoral nurses working in research. • Study 4. A survey will be conducted among postdoctoral nurses working in clinical settings. • Study 5. A survey will be conducted among postdoctoral nurses in the Netherlands. Main results to date 1. Study 1. The LMNR program is ongoing and data collection of phase 1 is finished. 2. Study 2 and 3. The results are to be reported. 3. Studies 4 and 5 are in progress. Discussion To meet the global health goals and challenges of the 21 century, more emphasis needs to be placed on leadership and mentoring training for nurses in nursing education, clinical practice and research. Strong leadership and mentoring skills of nurses working in all arenas of the nursing workforce is highly important for the further development of nursing science as an independent scientific discipline. 27


RESEARCH GROUP CHRONIC ILLNESSES Professional attitudes/leadership

1st author: Title: Provisional end date:

Jeroen Dikken RN MSc Development and validation of the Knowledge about Older Patients Quiz for nurses 1 September 2016

Background & research question Literature shows that nurses have a knowledge deficiency about, and negative attitudes towards, older patients. Increasing nurses’ knowledge (part of attitudes) may affect hospital nurses’ attitudes and improve the quality of care provided to older patients. A first step towards this goal is understanding nurses’ current knowledge. This can be achieved by using a measurement instrument with good validity and psychometric properties. Previously developed instruments measuring nurses’ knowledge about older patients are considered outdated or too country specific. Moreover, some measure knowledge in combination with aspects such as opinions, beliefs and experience, instead of knowledge solely. Some do not include a patient focus or a caring perspective. Furthermore, a clear description of content development is often not provided, which is a serious omission in developing a valid measurement instrument. Last, psychometric testing was not performed at all, or using analysis techniques based on classical test theory, which has several limitations compared to the item response theory approach. Therefore, we chose to develop a new instrument, the Knowledge about Older Patients Quiz (KOP-Q) for nurses. Design/methods Given the paucity of methodological rigor in the development of measurement instruments, the criteria as described in the Consensus-based Standards for the selection of health Measurement INstruments (COSMIN) were followed, providing transparency and reproducibility. First, the construct was defined using qualitative interviews with 7 experts, 10 nurse specialists and 5 older patients. Second, questions were conceptualised and generated from literature.

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Third, to reduce the number of questions, a Delphi round was organised with three nurse specialists and two researchers. Fourth, two pilot studies were established on readability (n=7 nurses) and face-validity (n=22 nurses). Fifth, content validity was assessed, using 12 nurse experts. Sixth, psychometric properties were assessed, using item response theory (IRT) with 107 first year students, 78 final year students, 148 registered nurses, and 20 nurse specialists representing a hypothetical wide range of knowledge. Last, classical test theory was applied to complement the results of IRT for use in clinical practice. Main results to date Initially, 185 items were generated. After reduction of questions in the Delphi round, 52 items remained eligible for initial testing. No items were deleted after the readability and face-validity studies. Nine items were deleted as a result of low content validity. In the psychometric assessment, two items demonstrated ceiling effects and 11 items were found to measure different dimensions than knowledge solely. Item characteristics were assessed for the remaining 30 items. All demonstrated good discrimination and difficulty parameters based on the fitted model. Analysis based on CTT provided understandable results for easier interpretation in clinical practice. Discussion The KOP-Q is a psychometrically solid, brief and comprehensive (self-reported) measurement instrument to assess hospital nurses’ knowledge about older patients. The instrument can be implemented in clinical practice, education and in research. Cross-cultural validation will be assessed in a future study.

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RESEARCH GROUP CHRONIC ILLNESSES Professional attitudes/leadership

1st author: Title:

Provisional end date:

Pieterbas Lalleman MA BN RN Nurse middle managers’ daily work and the hindering and helping influences of nursing habitus on their leadership: an ethnographic case study in four hospitals in the Netherlands and the U.S. May 2017

Background & research question Nurse middle managers (NMMs) are considered key players in new models for improving the quality and efficiency of care. Due to their hybrid identity as ‘professional’ managers, they can relate to both managerial and professional worlds, and span boundaries between these worlds. In this study, we use Bourdieu’s theory of practice to describe NMM’s daily work in hospitals. By focusing on the notions of habitus, capital and field, we are able to demonstrate how nursing habitus as a system of dispositions and as an output of the professional socialisation of nurses in various fields influences NMMs’ daily work. We also show how differences in fields, result in different appreciations of capital. By using Bourdieu’s work, we are able to go beyond the individual competencies paradigm of nurse leadership and provide a more dynamic portrayal of NMMs’ work. Moreover, we are able to go beyond the ‘two window metaphor’, as we demonstrate that NMMs use a wide variety of dispositions rather than just limit themselves to ‘two windows’ of the professional and management world. Spread over various articles we address several research questions: 1. What is nursing habitus as seen in NMMs’ daily practices? 2. How does nursing habitus help or hinder the leadership of NMMs? 3. How is nursing habitus articulated and nursing leadership portrayed in the context of the four different sites? 4. How do NMMs experience being shadowed? Design/methods This study is based on a Bourdieusian perspective and rooted in the Managerial Work and Behaviour Approach (MWB). In order to observe the dispositions of habitus in action in Magnet and non-Magnet hospitals in both the Netherlands

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and the U.S., a total of four in-depth ethnographic case studies were carried out. In total, 16 NNMs where shadowed (i.e. four at each site), a method common in MWB research which is particularly suitable for the in-depth study of organisational practices. The researcher closely followed each participant for four days and spent approximately 560 hours observing over a period of 19 months in 2010-2012. Main results to date Eight dispositions of nursing habitus are found. They are caring, clinical, collegial, teaching, professional, scientific, administrative and control dispositions. Together, these dispositions play an important role in the behavioural repertoire of nurses and in the daily practices of nurse middle managers. The frictions and compromises between the dispositions varied at each site. The eight dispositions were not a static representation of habitus. Some dispositions gave more capital than others, depending on the field they were articulated in. Answering the call for help, a manifestation of a caring, and a clinical disposition are seen as an essential elements of a nursing habitus and helped nursing leadership, as did a scientific disposition.

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RESEARCH GROUP CHRONIC ILLNESSES Prevention of complications related to medication

1st author: Title: Provisional end date:

Nienke E. Dijkstra MSc, RN The early recognition of drug-related problems in community-living elderly. October 2019

Background & research question The Dutch aging population and a growing number of chronic illnesses will cause an increase in medication use in the elderly. People aged 65 and older consume three times more medication than the average Dutch person, and medication use in elderly aged 75 and older is five times higher than in the general population. Besides positive health outcomes of medicines, drug-related problems may occur. The consequences of drug-related problems are: reduced quality of life, morbidity and mortality, hospital admissions and increased health care costs. The HARM study (Hospital Admissions Related to Medication) have shown that approximately 5% (41.000) of all hospital admissions in the Netherlands are associated with drug-related problems and almost a halve (46%) is preventable which means 52 preventable admissions per day. These admissions corresponds to annual cost of 85 million euro. Several risk factors of drug-related hospital admissions have been identified, including: impaired cognition, multimorbidity, polypharmacy, non-adherence to medication use, dependent living situation and impaired renal function. These factors are common among homecare patients. Homecare professionals have therefor an important role in the early recognition of signs and symptoms of problems related to medication use in the home situation. The early recognition by homecare workers is possible with the validated HOME-instrument (in Dutch: het Rode Vlaggeninstrument). This instrument allows homecare workers to recognize signs and symptoms of drug-related problems so that problems can be treated earlier by support of general practitioners and pharmacists with the aim to prevent decline in health.

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In this project we focus mainly on the role of nurses in the early recognition of drug-related problems but also how other healthcare professionals (homecare workers, general practitioners and pharmacists) can contribute to the early recognition to prevent further decline in daily functioning. Design/methods Study 1: In this study an electronic version of the HOME-instrument was developed. The eHOME is an Iphone and Ipad application and contains signs and symptoms of DRPs based on evidence and practice and has the ability to forward signs and symptoms and solutions. Based on experiences of homecare workers experiences (n=12) and a pharmacist (n=1) the instrument is clear and ensures privacy of homecare clients. Study 2: The feasibility of the eHOME-instrument will be tested on a large scale, including 241 homecare employees of 3 Dutch homecare organizations, 8 general practitioners and 11 pharmacies. We are interested in the signs and symptoms of drug-related problems observed by homecare employees, the subsequent healthcare interventions of homecare nurses, general practitioners and pharmacists. Furthermore we will identify facilitators and barriers of the eHOME.

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RESEARCH GROUP DEMAND-DRIVEN CARE Professor Helianthe Kort


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Enabling people to live independently for as long as possible, to remain active, and to make their own healthcare decisions: this is the aim of the Demanddriven Healthcare research group. The social necessity for this aim is clear: the number of ageing adults is increasing, capacity shortages are looming, and the cost of care is rising. But it is not simply a matter of money and capacity. Many elderly people and chronically ill people also actively prefer to live at home for as long as possible, and technology is enabling them to remain independent. Technology The research group examines the opportunities and limitations of technology in healthcare. The model homes that the research group has realized together with the installation sector form a good example: www.technologiethuis.nu. With some architectural and technological adjustments, people living with dementia, COPD, diabetes or limited vision can continue to live for longer in their own homes. Task reallocation The research group is also investigating the role of the reallocation and delegation of tasks. Thanks to clear and unambiguous treatment procedures and the use of technology, new professions, such as that of the optometrist, are emerging. An optometrist is well positioned to take over some of the work of an ophthalmologist. Other examples include skin therapists, physician assistants, dental hygienists, and elderly care workers. These professionals cost less than physicians, but are able to deliver the same quality of care. All this means that task reallocation and technology are lowering healthcare costs. Sharing knowledge The professor and the researchers of our research group share their knowledge with students, lecturers, researchers and policy makers. But also with professional practitioners working in healthcare institutions, in the technology sector (e.g. product designers), and within the building and installation sector. This dialogue works in both directions: all these parties are also helping to work on our research. In addition, the research group incorporates its newly generated knowledge into teachings for bachelor’s and master’s students. The minor in Public Health Engineering and the annual summer course in Health and Engineering also serve as platforms for knowledge transfer. Research for the Demand Driven Care is structured accordingly to: 1. Autonomy and selfmanagement; 2. Smart Care; 3. Smart Business; and 4. Smart Environment.

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RESEARCH GROUP DEMAND-DRIVEN CARE Smart Care

1st author: Title: Provisional end date:

Marianne M. Sinoo MSc Visual functioning and light conditions for visual comfort in care facilities for older adults 2016

Background & research question The prevalence of visual impairment is high in people aged 50 years and above, according to the “2010 global data on visual impairment” (World Health Organisation). The highest estimated prevalence (> 40%) has been found in the subgroup of residents of nursing homes and residential care facilities. The roles of care professionals and the environment of the nursing home are described by the framework of the ICF (International Classification of Functioning, Disability, and Health).

Objective This project aims to investigate visual comfort, light conditions and the contribution of assessment of vision impairments. Integration of visual functioning is promoted by creating awareness of environmental variables by professional caregivers and by paying attention to information in client records. Research questions • What are the light conditions in Dutch nursing homes? • What age-related eye pathologies do optometrists report after eye examinations? • What is the status of recording of information on visual problems or other eye-related data in client files? • How do nursing home physicians practice eye care in Dutch nursing homes? • How to assess the visual environment in nursing homes? Content validity of an observation tool for the indoor visual environment. Design/methods Light conditions in Dutch nursing homes were assessed in terms of horizontal 38


and vertical illuminances and colour temperature. The measurements include the contribution of daylight and reflect the light situation as encountered at the moment of observation. In these nursing homes, 259 residents underwent an optometric examination, and their client records were analysed for information regarding visual functioning. The optometric examinations and recorded visual problems were combined with illuminance data. Furthermore, a digital online survey was developed to describe the eye care activities of nursing home physicians. Additionally, an observation tool for assessing the indoor visual environment was developed and tested on content validity. Main results to date Results showed that, in seven nursing home buildings, vertical illuminances in common rooms fell significantly below the 750 lx reference value in at least 65% of the measurements. Horizontal illuminance measurements in common rooms showed a similar pattern. A significant difference in colour temperature was found between recently constructed nursing homes and some older homes. Of the residents, 50% had problems with cataracts, retinal problems (21%), suspected glaucoma (13%), and other pathologies (16%). The information was not up-to-date in 56% of the records. The quality of light conditions in the nursing homes was low or moderate. 23%, 33% and 45% of nursing home physicians almost never or never examined the visual field, near vision and distant vision. The observation tool was validated by eight experts in eye care and building engineering, and structured into the following environmental parameters: ‘light’, ‘colour and contrast’, and ‘furnishing obstacles’. Conclusion and discussion The studies showed that the light conditions in common rooms and corridors in all nursing homes were of low or moderate quality. In 50% of the referred residents, the main reason for referral was related to problems with cataracts, retinal problems (21%), suspected glaucoma (13%), or other pathologies (16%). No information on visual functioning was found in the client records of 67% of residents who were referred by the optometrist for additional ophthalmologic consultation. Furthermore, nursing home physicians did not structurally examine relevant visual aspects. Professional caregivers in the nursing home can be seen as an important environmental factor in diagnosing eye pathologies and controlling light conditions. The nursing home staff should be aware of visual problems. The developed observation tool might raise this awareness. 39


RESEARCH GROUP DEMAND-DRIVEN CARE Smart Care

Author:

Title: Provisional end date:

Mirjam van Tilborg MSc BOptom FAAO PhD candidate, Cardiff University, School of Optometry and Vision Sciences Management pathways for dry eye disease in the Netherlands January 2017

Abstract The high impact on daily life from decreased visual functioning as a result of dry eye disease (DED) is the focus for this PhD. The Chronic Care Model will be used to position the roles of the general practitioner (GP), optometrist and occupational healthcare physician (OHP) in the management of a patient. Background & research question DED is a multi-factorial chronic condition, with a strong impact on visual functioning and daily life. The condition is difficult to define in one symptom or to diagnose by current investigative techniques. Most importantly, no single treatment works for all. GPs, optometrists and OHPs all have a role in the management of DED in primary healthcare. Estimates for the worldwide prevalence of DED span a range from as low as 0.1% to as high as 33%. For the Netherlands, no prevalence data are available, partly due to a lack of consensus in defining DED. However, in 2013, there were 573,540 persons using prescribed artificial tear products, which can be used as an indication. Non-prescribed artificial tears by self-management were not taken into account. The prescription of artificial tears, which is often inappropriate and ineffective, cost â‚Ź 26,635,300 in 2013, an increase of 35% since 2009. The high impact on daily activities, particularly the impact on decreased visual functioning and the difficulties in accurate diagnosis between reported 40


symptoms and investigative technique outcome, prompted the research question: How can the diagnosis and management of visual functioning by DED patients be improved? Design/methods Phase 1: dry eye management in primary healthcare in the Netherlands The design of this study was a cross-sectional, web-based survey that focused on the management of DED by GPs and optometrists. Areas of agreement between them in the definition and diagnosis of DED by symptoms were determined. Phase 2: eye related problems in daily activities at work The design of this study was a cross-sectional, web-based survey that investigated the impact of (dry) eye problems at and near work with the use of VDU in office workers at three locations. Phase 4: tear film characteristics and modern office environment This research will focus on the investigative techniques for DED and other eye related problems by office workers in a modern digital office and their perception of the quality of the indoor environment. Phase 4: comparison of approach to DED by healthcare workers Using a Delphi method, this research will focus on the attitude of GPs, OHPs and optometrists towards the diagnosis and management of DED, with the aim of determining recommendations towards a chronic care model by defining the roles of these professionals in co-management of DED. Main results to date There are fundamental differences in the methods for diagnosis of DED, interpretation of dry eye-related symptoms and possible cause of developing dry eyes between the GPs and optometrists in the Netherlands, with a potential impact on consistency of patient care. Article: Agreement in dry eye management between optometrists and general practitioners in primary healthcare in the Netherlands Mirjam M.A. van Tilborg, Paul J. Murphy, Katharine S.E. Evans Publication stage: In Press Corrected Proof Contact Lens and Anterior Eye Published online: April 18, 2015 41


RESEARCH GROUP DEMAND-DRIVEN CARE Smart Care

Author: Title: Provisional end date:

Marijke Luijten, MA Collaborative eye care: the role and attitude of the eye care professional 2021

Background & research question In the last decade patients in the eye care practice have become more articulate and informed. They have high standards of quality and demands shared decision making. This is a result of social and technological developments. The government responds to these developments with policies to strengthen the position of the patient. Establishing rapport and collaboration with the patient are important conditions for good quality of care. The changes in society, policy and care require additional changes of the eye care professionals but the consequences of these changes for the role and attitude of the eye care professional remains unclear. The aim of this study is to redefine the role of the eye care professional and gain insight in the necessary attitude of eye care professionals in collaborative care in the Netherlands. This study also contributes to the theorizing about productive interaction between care professionals and the patient in decision making. Main research question is: Which role and attitude are necessary for the eye care professional in collaborative eye care and how can that role be defined? Design/methods In this study only qualitative research will be conducted. 1. Literature review 2. Analysing policy and how the policy was made (discourse analysis) 3. Analyzing interviews with eye care professionals 4. Analysing the education of eye care students

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Main results to date First results are expected in the summer of 2017. Discussion -

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RESEARCH GROUP DEMAND-DRIVEN CARE Smart Environment

1st author: Title:

Emelieke Huisman MSc Creating a healthy nursing home environment via lighting interventions: a theoretical approach

Background & research question Dutch long-term care facilities (LTCFs) are investing in improvement of wellbeing of residents and in support for healthcare professionals (HP) in their daily tasks. LTCFs become more aware that technical and architectural solutions support activities of daily living and quality of life (QoL) of frail elderly. Also, they support and optimise the work process of HP and professionals in facility management. Light is one of the technical solutions that might support the QoL of frail elderly in LTCFs. Insufficient or inappropriate light exposure can disrupt standard human rhythms. This may result in adverse consequences for performance, safety and health. Several studies found that the amounts of light in LTCFs are insufficient to meet the visual needs of residents, and the majority of the measurements points fell below of the threshold of 750 lux. Given the influence of light on human health, lighting quality has become a complex issue. The objective of this field study is to get insight into the amount of light in the common living room (CLR) in a long-term care facility (LTCF) in the Netherlands. This insight is the departure point for investigating possibilities to enrich the current environment from a lighting perspective, in such a way that it supports activities of daily living and QoL of frail elderly. Design/methods The study was carried out in two locations of a Dutch LTCF. Period of measurement was in April 2014 (location A) and in July 2012 (location B). Light measurements were performed in common living rooms (CLRs) of both locations. The point measurements included the horizontal and vertical illuminance (E) and the colour temperature of both daylight and electric lighting at different positions and for different orientations in the room. The horizontal 44


values were measured at table level (0.75m). The vertical values were measured at the same point at eye level of a sitting resident, in the viewing direction of the resident (1.10m). To explore the possibilities for enhancing the light conditions in the CLR, four counselling sessions were organised by the project team, with the above mentioned light measurement outcomes as input. Three researchers, three staff members of the LTCF, and one facility manager participated in these counselling sessions. The sessions were used to evaluate and modify the proposal of a new light plan for the CLR. Main results to date In both situations, the values of 750 lux were mainly reached on measurements points relatively close to the window area. At positions further away from the window, the illuminance decreased (<1,5m). The new light plan in the CLR of the LTCF is based on the light measurement outcomes and the counselling sessions. Based on the outcomes the following starting points for the new light plan were formulated: • Sufficient light through the entire CLR to support daily activities such as reading and eating. • The light system needs to be placed in a way that assures flexible use of the CLR. • Use of static lighting system that interacts with daylight through a sensor. Discussion Sufficient or appropriate light exposure can support older residents in their daily tasks and reduce falls. In expected concordance with earlier studies, the outcomes of the light measurements in this field study fell beneath the threshold of 750 lux for CLRs. Furthermore, the preliminary results of this field study showed that the improved light situation by a static lighting system might affect the QoL of frail elderly and support HP in their daily tasks. Further research is needed to investigate how the new lighting conditions contribute to the QoL in order to define light guidelines for LTCFs. 45


RESEARCH GROUP DEMAND-DRIVEN CARE Smart Environment

1st author: Title: Provisional end date:

Jikke Reinten MSc Healthy environments in hospitals: acoustics January 2019

Background & research question Health, well-being and behaviour of people are influenced by auditory stimuli. This influence can be altered by a direct physiological change, such as the destruction of inner ear hair cells when exposed to a very loud noise. This can cause hearing loss and may also lead to a direct behavioural action: covering our ears. The influence can also be less direct, for instance as the sense of safety a child might experience when it hears its parents speaking softly in the garden on a summer evening. The design of a building influences the acoustic environment and therefore affects our well-being, comfort and health. There is only a small amount of studies available on the influence of room acoustics on hospital staff. Nurses are the largest group of hospital staff members. This is one of the reasons to focus this research on healthy acoustic environments for nursing staff. However, the aim is to provide a general framework on how the sonic environment influences people. Within this framework, existing knowledge can be placed, and it can systematically guide future research. The framework should be applicable for any type of environment or target group.

Research question What is the influence of room acoustic parameters on health and work performance of nurses? Design/methods The project will start with a literature phase, to expand knowledge about the topic and to build a framework to guide this research. The second work package consists of a systematic review of the current knowledge on how 46


auditory stimuli influence people in a professional setting. The theoretical model will be used to analyse literature and identify knowledge gaps. The third part of the project will focus on the characterisation of the sonic environment in specific hospital areas and the role that room acoustic parameters have. Measurements and analysis of the acoustic environments in several Dutch hospitals (additional data from other countries may be of interest) will be performed. Besides this, an analysis of the working environment in general will be carried out through observational studies. This will provide insight in which tasks might be influenced most by the acoustic environment, the coping mechanisms of hospital staff, and other important contextual factors. The results of the acoustic analysis and the observations are needed as input for controlled laboratory studies, which will be conducted to measure the influence of possible changes in auditory environment as a result of room acoustic modifications. The main focus of outcomes will be on staff performance. In the final phase of the research, an intervention study is foreseen to evaluate the findings and find evidence on the influence of room acoustics on health. Main results to date Currently the project is in the start-up/literature phase. Observational studies are being planned and prepared.

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RESEARCH GROUP DEMAND-DRIVEN CARE Self Management

1st author: Title:

Provisional end date:

Thijs van Houwelingen RN MSc Educational preparation of nurses using technology as a way to provide healthcare remotely September 2017

Background & research question Within the next decade, the number of care professionals (in The Netherlands) will no longer be sufficient to deal with the increasing demand for care. eHealth, for example screen-to-screen contact instead of regular face-to-face, offers older adults a solution to age in place, and is claimed to be a solution for the increasing demand for care. Despite the apparent positive effects of this technology, there are several barriers to implementation. One of the main barriers is largely caused by the lack of knowledge and skills of healthcare professionals as to how to use this new technology. The primary aim of this doctoral research is providing evidence-based knowledge, skills, and competencies required for the use of eHealth technologies with patients living at home. Design/methods

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Phase 1 Gerontechnology

Phase 2 Medical education

Phase 3 Gerontechnology & Medical education

Exploration of predictors of the use of eHealth by care professionals and older adults

Development of eHealth competency framework for nurses

Examining the impact of education on the willingness of nursing students to use eHealth

Survey – multiple regression analysis

Delphi-study

One group pretest- posttest design

Nurses working in a home care organization and older adults living independently

Nurses / clients using eHealth, technicians, and teachers – bachelor of Nursing

Students – bachelor of Nursing


The Unified Theory of Acceptance and Use of Technology (UTAUT) has been used as a starting point in phase 1. Theories of Entrustable Professional Activities (EPA’s) and medical competence will play a central role in phase 2, 3 and 4. Main results to date Results phase 1: In our sample of nurses, willingness to use home telehealth was predicted by its (a) perceived usefulness to the client (β = 0.435, p < 0.001)), (b) effort expectancy (β = 0.280, p = 0.001), (c) social influence (β = 0.216, p = 0.013), and (d) cost expectations (β = 0.236, p = 0.004). Discussion Home telehealth, signifying a transition from face-to-face care to screen-toscreen care, may contrast with expectations of healthcare professionals at the beginning of their career. Dutch healthcare professionals feel valued when they help patients out of bed, help them change their clothes, help them eat, or assist them in taking a walk (activities of daily living). The fear of losing this interaction may create a barrier for the use of home telehealth by healthcare professionals. Therefore, more research is needed to gain an understanding of the quality of contact when nurses provide ‘care at distance’. Furthermore, the actual effectiveness of educating nurses and / or nursing students, based on predictors from phase 1, has to be examined. For many years, studies in the literature have emphasised the urgency of eHealth education. Therefore, the slow development of eHealth education is remarkable.

Phase 4 Medical education

General Discussion Gerontechnology & Medical education

Examining the impact of eHealth competencies on ‘behavior’ of nurses and / or patient satisfaction

Reach consensus on the past, present and future of eHealth competence of nurses

Within group design

Literature review

Nurses and clients using eHealth in a home care organization

Cochrane, CINAHL, PubMed, Science-Direct, Scopus

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RESEARCH GROUP LIFESTYLE AND HEALTH Harriet Wittink PhD


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Many people who have difficulties being physically active due to a disability or pain are at risk for decreased physical capacity and for comorbidities. This decreased capacity may threaten their functional autonomy. Decreased functional autonomy is defined as “functional ability in ADL, mobility, communication, mental functions, and instrumental activities of daily living” . Prevention and recovery of decreased functional autonomy is possible by increasing physical capacity. Within the research group Lifestyle and Health, the main focus is on the relations between physical activity, physical fitness, and autonomy, and the factors that influence these relationships, to increase autonomy or prevent loss of autonomy in children and adults. Within the research group Lifestyle and Health, there is a growing emphasis on looking at an optimal start early in life. This includes both research evaluating (ab)normal motor development in infants (GODIVA study), and research looking at physical activity and exercise in children with chronic childhood onset conditions (Fit for the Future! and the HAYS study). While working on different topics, both groups work in large consortia, consisting of universities, hospitals, rehabilitation centres and primary care paediatric physical therapists across the Netherlands. The group of paediatric research (“Kind in Beweging”) within the group Lifestyle and Health currently consists of 2 senior researchers and 7 junior researchers, including over 50 students on a yearly basis, either directly participating in research or following a minor course related to these topics. The adult research group consists of 2 senior researchers and 6 PhD students, plus a large number of students, either participating in research or following a minor course related to the adult topics. In the adult track the focus is primarily on: • The prevention of loss of autonomy in patients after stroke through stimulating physical activity and increasing physical fitness and prevention of falls (SUSTAIN). • The prevention of loss of autonomy through personalized care for patients with neck pain. • Increasing autonomy in patients with chronic pain during and after pain rehabilitation (PREPGO, SOLACE), in (low literate) patients in physical therapy practices (TransFysa), and through changing illness perceptions (PERCEPT). For the children track, please refer to the abstracts by dr. Janke de Groot and dr. Jacqueline Nuysink.

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RESEARCH GROUP LIFESTYLE AND HEALTH

1st author: Title:

Provisional end date:

Janke Oosterhaven MSc PREPGO study: pain rehabilitation in patients with low levels of health literacy: explaining dropout in a chronic pain management programme July 2017

Background & research question Chronic pain has a negative impact on quality of life, daily functioning, mood and sick leave. One in five adults in the Netherlands (2,25 million) suffer from chronic pain. Chronic pain rehabilitation programmes have been shown to be effective. Unfortunately, dropout of patients with chronic pain from chronic pain programmes is an important problem in those programmes. Early dropouts more often have poor treatment outcomes and cause higher medical costs for society. In scientific research it remains unclear why and how many patients with chronic pain drop out in chronic pain rehabilitation in the Netherlands. The aim of the PREPGO study is to gain insight into the mechanisms behind dropping out. The central research question is: which socio-demographic and clinical factors predict early “dropping out” in patients with chronic pain being treated in a chronic pain management programme? The hypothesis in the PREPGO study is that patients with chronic pain and low levels of health literacy have higher dropout rates than patients with higher levels of health literacy. Low levels of health literacy may be related to maladaptive illness beliefs and unrealistic treatment beliefs, which in turn may lead to dropout. Design/methods The PREPGO study is a ‘mixed methods’ research: both qualitative and quantitative research methods are used. This study acknowledges the need to take account of patient perspectives in chronic pain rehabilitation programmes Patients with chronic pain themselves are the research subjects in this study. The starting point of the PREPGO study is a systematic literature review about patient characteristics related to dropping out of chronic pain management programmes. In a longitudinal prospective quantitative study, all patients who 54


start in a chronic pain programme are followed throughout the programme. From the patients with chronic pain who drop out in the pain rehabilitation programme, quantitative data (social demographic data, depression (HADS), health status (SF 36), pain catastrophising (PCS), pain self-efficacy (PSEQ), pain intensity/impairment (PSK), illness perceptions (IPQK) and treatment beliefs (TBQ)) will be collected, to find out which factors predict dropout. With qualitative research methods, more in-depth information will be collected on illness beliefs, treatment beliefs, health literacy levels, and reasons for dropout in patients with chronic pain in a pain rehabilitation programme. Main results to date The output of the mixed methods research on dropout mechanisms will be used to construct a theoretical model explaining dropout in chronic pain management programmes. First results of the PREPGO study are expected in 2015-2016. Discussion The innovative aspect of this project is that we a better understanding of dropout mechanisms in chronic pain rehabilitation programmes. Special attention will be given to levels of health literacy, illness beliefs and treatment beliefs in patients with chronic pain.

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RESEARCH GROUP LIFESTYLE AND HEALTH

1st author: Title:

Jacqueline Outermans MSc Investigating and stimulating long term walking activity in stroke (SUSTAIN)

Study 1 Perceived barriers and facilitators for community ambulation in individuals after stroke. A qualitative study, using an integrated biomedical and behavioural theory of functioning and disability. Background There is only limited insight in barriers and facilitators for community ambulation after stroke. This inhibits the development of efficient programmes to stimulate community ambulation. The purpose of this study was to explore perceived barriers and facilitators for community ambulation using a model of integrated biomedical and behavioural theory, the Physical Activity for people with a Disability model (PAD). Methods 36 respondents participated in 16 semi-structured audio recorded interviews, 8 structured interviews, and 2 video recorded focus group interviews. A framework analysis was used after verbatim transcription. The PAD model was used to define themes a priori. Results Important findings were barriers perceived in impairments of exercise capacity next to motor control and fatigue. Negative social influence, resulting from restrictive caregivers in the social environment, low self-efficacy, influenced by physical environment, and negative attitude towards physical activity were identified as important barriers for community ambulation.

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Conclusion It seems of particular importance to address social influence and attitude towards community ambulation in the development of efficient interventions, as they influence the intention to walk in the community. At the same time the improvement of exercise capacity needs to be addressed.

Study 2 Associations of aerobic capacity and walking capacity after stroke: differences by cardiopulmonary effort and the influence of balance and strength. Background Reports of the association between walking capacity and aerobic capacity after stroke show wide variations. The first aim was to explore differences by cardiopulmonary effort in the univariate association between walking capacity and aerobic capacity after stroke. Second aim was to explore to which extent VO2peak explains the variation in walking capacity after stroke, and how other variables distort this association. Methods 51 subjects after stroke underwent Cardio Pulmonary Exercise Testing (CPET) to assess aerobic capacity and the Six Minute Walk Test (6MWT) for walking capacity. Possible confounder variables were: age, extremity muscle strength (Motricity Index, (MI)), gait impairment (Rivermead Visual Gait Assessment, (RVGA)) and balance, (Performance Oriented Mobility Assessment, (POMA)). Correlation coefficients were calculated for 6MWT with VO2max (when achieved) and VO2peak respectively. Multiple linear regression analyses were used to identify confounding covariates of the relation between 6MWT (dependent) and VO2peak (independent). A 10% change of the standardised regression coefficient (β) after adding a candidate confounder variable was considered indicative of confounding. Results The Pearson correlation coefficient (rp) between the 6MWT and aerobic capacity in subjects achieving VO2max (N = 22) was .561 (95%CI .121 - .967). In subjects achieving VO2peak (N = 29) rp = .724 (95%CI .377 - .921). There was no significant difference (p = .35) between both correlation coefficients. For the total sample rp = .712 (95%CI .385 - .835). Multiple regression analysis showed a significant decrease of the β for VO2peak of 21,6% after entering POMA, and 13,9% after entering MI in the equation. Conclusion The strength of the correlation of the 6MWT with VO2max is moderate and with VO2peak strong. Balance and, to a lesser extent, muscle strength are confounders of the relation between 6MWT and VO2peak of the total sample. 57


RESEARCH GROUP LIFESTYLE AND HEALTH

1st author: Title:

Provisional end date:

Marlies Welbie MSc PT Health literacy in physical therapy. How to adapt and use a questionnaire in a Dutch and Turkish low health literate patient population. July 1st 2017

Background & research question Health care develops towards a more Patient Centered Care approach (PCC). Patients are required to take a more active role in making decisions about their health. To do this effectively patients need to be able to seek, understand, and use health information; a concept referred to as ‘‘health literacy’’(HL). Poor HL is associated with reduced patient activation. The tendency to be more passive complicates patient-provider-interaction and undermines the possibilities for receiving PCC. Little is known about the patient-role in PCC and how patients can be empowered. This study aims to contribute to filling this knowledge gap. The hypothesis underlying this study is that adapting and using a questionnaire to help patients with poor HL to order and prioritize their symptoms and limitations and make them explicit will help them to take a more active part in patient-provider-interaction during the diagnostic process of physical therapy treatment. The aim of this study is to adapt a screening questionnaire and develop a tool which helps Dutch and Turkish physical therapy patients with poor HL who report pain to be more capable to take an active part in the decision making process within the diagnostic phase of physical therapy in The Netherlands. This fits the theme of self-reliance because patients get empowered in arranging the specific care they want and need for themselves.

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Design/methods Qualitative: semi-structured interviews focus group interviews cognitive interviews Three-step-test interview

Quantitative: video analysis; RIAS coding system Main results to date • Prototype Dutch Talking Touch Screen Questionnaire • Third place RAAK award for the development of the Dutch Talking Touch Screen Questionnaire • Nominee Univé Paludanus award for the Dutch Talking Touch Screen Questionnaire: https://www.youtube.com/watch?v=YL1YIujlgQI • Published: Cremers, A. H., Welbie, M., Kranenborg, K., & Wittink, H. Deriving guidelines for designing interactive questionnaires for low-literate persons: development of a health assessment questionnaire. Universal Access in the Information Society, 2015:1-12 • Accepted: Welbie M, Wittink H, Westerman M.J, Devillé W.L.J.M. Patient perspectives on respondent burden and added value of the most frequently used questionnaire in Dutch physical therapy practice: the Patient Specific Complaint Questionnaire; a qualitative study. International Journal of Patient Centered Medicine • Submitted: Welbie M, Wittink H, Cremers A.M.H, Westerman M.J, Topper I, Snoei J, Devillé W.L.J.M. Patients’ perceived ease of use and actual performance completing the interactive Dutch Talking Touch Screen Questionnaire. Results of a qualitative pre-test. Journal of Health Communication • Submitted: Welbie M, Wittink, Westerman M.J., Topper I., Snoei J., Devillé W.L.J.M. Response process validity of the interactive Dutch Talking Touch Screen Questionnaire; results of a qualitative pre-test. Journal of Health Communication • Submitted: Welbie M, Wittink, Westerman M.J., Bozkurt S., Vernet K., Snoei J., Devillé W.L.J.M. perceived ease of use and actual performance completing the Turkish Version of the interactive Dutch Talking Touch Screen Questionnaire. Results of a qualitative pre-test. Journal of Health Communication 59


RESEARCH GROUP LIFESTYLE AND HEALTH Childhood

1st author: Title:

Provisional end date:

Janke F. de Groot PhD P.T., associate professor Research line Fit for the Future! Physical activity, exercise and health in children with chronic childhood onset conditions 2017

Within this research group, studying physical activity, exercise and health in children with chronic childhood onset conditions, there are two main projects. One of them is Fit for the Future!, which is financed by SIA RAAK PRO (20132017), and is a continuation of and earlier project called "Healthy Active Living in Youth with Neuromotor Disability" (HALYNeD). Fit for the Future! is a successful consortium including HU University of Applied Sciences, Wilhelmina Children's Hospital, Rehabilitation Centre de Hoogstraat, Erasmus Medical Centre, VU University, KJ Projects, the Dutch organisation for paediatric physical therapists (NVFK), and Fitkids, representing 150 PPT practices across the country. This projects aims to create a system for knowledge transfer from academic research outcomes to the daily practice of paediatric physical therapy, while at the same time working on translational research in the field of exercise physiology and physical therapy in youth with childhood onset disability. The HAYS study is a ZonMW financed project looking at the health effects of adapted sports in children and youth. It is a cooperation between HU University of Applied Sciences, Wilhelmina Children's Hospital, Rehabilitation Centre de Hoogstraat and several sports organisations across the Netherlands. Next to our connections in the Netherlands we also collaborate with international partners in our field. Our group at HU University consists of one senior researcher and four PhD students. Aside from research, we offer internships for students to participate in our research and developed a minor course “Child and Exercise�. Indeed, in the last few years, many students from both outside and within the Institute of Human Movement Studies have participated in our research. Several students 60


have won both institutional and national prizes for their thesis. For paediatric physical therapists (and professionals in related fields), we offer workshops, symposiums, and opportunities to participate in our projects as well. Publications, current student projects, and other information can be found at our website: www.fitforthefuture.hu.nl

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RESEARCH GROUP LIFESTYLE AND HEALTH Childhood

1st author: Title: Provisional end date:

Manon Bloemen MSc Physical activity and physical fitness in (wheelchair dependent) youth with spina bifida 1 March 2017

Background & research question Youth with physical disabilities are less physically active and less physically fit compared to peers who are typically developing. Moreover, youth with spina bifida (SB) score in the lowest ranges. No tests are available that measure physical fitness in youth with SB who self-propel a manual wheelchair; there is insufficient information about factors that may influence physical activity. 1. Which tests regarding physical fitness are valid and reproducible in youth with SB who self-propel a manual wheelchair? 2. What is the level of physical fitness and physical activity in youth with SB who self-propel a manual wheelchair, and what are the correlations between physical fitness and physical activity? 3. What are the facilitators and barriers to consider when aiming to improve participation in physical activity in youth with SB? 4. What are the facilitators and barriers to consider when aiming to improve participation in physical activity in youth with a physical disability? Design/methods Research question 1 and 2. Cross-sectional clinimetric and explorative studies. Children and adolescents with SB, 5 – 18 years of age, who self-propel a manual wheelchair, were included. Research question 3. Systematic review in which both qualitative and quantitative studies were included. Research question 4. Qualitative thematic analyses. Data was collected using focus groups and interviews in children and adolescents with SB and their parents.

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Main results to date Research question 1. The Graded Wheelchair Propulsion Test is a valid and reproducible test that measures aerobic capacity in youth with SB who selfpropel a manual wheelchair. Preliminary results show that the Shuttle Ride Test is a valid and reproducible field test to measure aerobic performance, if a portable gas analysis system is used to measure VO2peak. The Muscle Power Sprint Test, 10x5 meter sprint test and slalom test seem to be valid and reproducible tests to measure anaerobic performance and agility in this population. The One Stroke Push Test seems to measure aspects of muscle strength and wheelchair features. However, about 50% of the variance remains unclear and may be influenced by aspects of wheelchair propulsion technique. Research question 2. Data has yet to be analyzed. Research question 3 and 4. An overview of facilitators and barriers regarding physical activity for youth with SB and for youth with a physical disability is available. Self-efficacy, sufficient fitness and the ability to perform complex skills (such as wheelchair skills) seem to play an important role in becoming and staying physically active. Discussion There are important limitations because of the cross-sectional design of this study. Future intervention studies should be developed, to analyze if the mentioned facilitators do influence physical activity. During this intervention studies, clinimetric properties like “Minimal Clinical Important Change” and “Responsiveness” of the developed tests may be determined.

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RESEARCH GROUP LIFESTYLE AND HEALTH Childhood

Authors: Title:

Provisional end date:

Karin van der Ende-Kastelijn and Kristel Lankhorst Pt MSc Health in Adapted Youth Sports – HAYS Health effects of sport participation in children and adolescents with a chronic disease or condition September 2017

Background & research question Children and adolescents with a physical disability or chronic disease often show reduced fitness levels and physical activity patterns. They participate less in competitive and recreational sports, compared to their non-disabled peers. Being less active not only affects fitness, but also creates a higher risk for a variety of health related diseases and injuries. In addition, sport participation in children and adolescents with a physical disability or chronic disease may have positive effect on both (psychosocial) health and cognition. While these relationships have been reported in healthy children, these benefits have not been established in children with childhood disability or chronic childhood disease. Therefore, the aim of the HAYS study is to describe the differences in health status and cognition between children and adolescents with a physical disability or chronic disease who participate in sports, compared to their nonsporting peers. Research question: what are the differences between children and adolescents with a physical disability or chronic disease who participate in sports in physical fitness, physical activity, injuries and illness (sport and activity related injuries or illness), cognition (school performance, attention, motivation), psychosocial health (self-efficacy, quality of life), compared to their non-sporting peers? Design/methods The HAYS study will be a cross-sectional study comparing children and adolescents with a physical disability or chronic disease, aged 12 to 19 years, who are active in sports, to their non-sporting peers. Injuries and illnesses will be monitored longitudinally for one year to objectify the incidence, severity and extent of injuries and illnesses. Children and adolescents with a physical 64


disability will be included. Physical disabilities could be cardiovascular, pulmonary, musculoskeletal or neuromuscular disorders. Both children and adolescents who are ambulatory or propelling a manual wheelchair will be included. Children and adolescents who participate in sports will be recruited among different patients’ associations and sports clubs. Athletes will be recruited on a different range of sport levels: from top sport to recreational level. Main results to date The inclusion and measurements were started in September 2014. 65 participants are now included. Discussion The aim of the HAYS study is to establish the health effects of sport participation in children and adolescents with a physical disability or chronic disease.

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RESEARCH GROUP LIFESTYLE AND HEALTH Childhood

1st author: Title:

Provisional end date:

Kristel Lankhorst Pt MSc Development of a valid instrument to measure physical activity in children with a physical disability or chronic disease in the paediatric physical practice September 2017

Background & research question There is a need to measure physical activity patterns in an objective manner in children with a physical disability who are ambulatory or using a wheelchair based on reviews from the HALYNed study and phase 1 of Fit for the Future and focus groups. At this moment, there is no valid instrument to measure physical activity objectively. However, such an instrument could prove convenient and practical in the paediatric clinical practice.

Research question: What is the validity of the Activ8 (accelerometer) in children with a physical disability who are ambulatory or using a wheelchair? Design/methods The first step is the development of a valid and useful instrument for measuring physical activity in daily life. This instrument will be constructed on the base of a systematic review: measuring physical activity in wheelchair users. Besides this review, professionals, parents and researchers will be involved in both the development and in studies about reproducibility and the clinical applicability. The second step is the validation of this instrument (the Activ8). The validation process consists of testing criterion validity, in which the Activ8 is compared with the gold standard (video recordings). The Activ8 will be validated in 30 children, ten of whom are typically developed, ten are ambulatory with a physical disability and ten have a physical disability using a wheelchair.

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Main results to date All the measurements are finished. The analysis of the data is started at the moment. First results are expected in November 2015. Conclusion / Discussion The Activ8 device will be implemented in research and in the paediatric private practice to measure physical activity in daily life in an objective manner in children and adolescents with a physical disability who are ambulatory or using a wheelchair.

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RESEARCH GROUP LIFESTYLE AND HEALTH Childhood

1st author: Title:

Provisional end date:

Marleen Sol MSc Wheelchair training: effective for both skills and participation in daily activity? (part of Fit for the Future!) September 2017

Background & research question It is estimated that 1 in 14 to 20 children is disabled or has a chronic disease, with approximately 8% being wheelchair dependent. Several studies have shown youth and young adults with disabilities to be less active and less fit compared to peers. Furthermore, studies have reported that adolescents and young adults who use a wheelchair are even more inactive and less fit than their peers who walk. Just like in healthy children, an active lifestyle is recommended for prevention of non-communicable disease and general health benefits. Next to these benefits, children with disabilities benefit even more from sufficient levels of physical activity (PA), as higher levels of fitness are related to higher levels of physical functioning. At the same time, we also know just intervening to improve physical fitness does not result in sustainable change in physical activity levels. Therefore, looking at interventions to improve in PA in children who are wheelchair dependent is an important goal for physical therapists working with these children. Recent qualitative research has shown the possible role of both physical fitness and wheelchair skills competence and self-efficacy in relationship to physical activity levels, but this has not been confirmed by intervention studies. Therefore, the purpose of this research is to determine the effects of a combined physical fitness and wheelchair skills intervention program in relation to participation in daily physical activity levels in youth who are wheelchair dependent. Design/methods The study is conceived as a non-randomised controlled trial, taking place at five schools for special education in the Netherlands. Schools will be assigned to 68


either the intervention or the control group. Intervention 1: 8 weeks of fitness training, followed by 8 weeks of wheelchair skill training. Intervention 2: 8 weeks of wheelchair skill training, followed by 8 weeks of fitness training. Control: 16 weeks of usual care (special education, often aimed at fitness). Children will be assessed at T0 (baseline), T1 (after 8 weeks of intervention 1 or 2), T2 (at the end of intervention 1 and intervention 2 and usual care) and T3 (1 year later), for their levels fitness, wheelchair skills, physical activity and self-efficacy. Children (8-18 years of age) will be included at the schools participating in the trial. Inclusion criteria are: wheelchair dependency for most hours of the day or for sports; no contra-indications for fitness training or wheelchair skill training; and signed informed consents. Discussion Results of this study will be used to determine effectiveness of wheelchair skill training combined with fitness training. Novel outcomes are objectively measured physical activity and self-confidence in activities of daily life and, more specifically, in activities related to wheelchair use.

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RESEARCH GROUP LIFESTYLE AND HEALTH Childhood

1st author: Title:

Jacqueline Nuysink PhD Gross motor development of infant using home video registration with the Alberta Infant Motor Scale (GODIVA)

Background & research question The GODIVA project started with a request of paediatric physiotherapists (PPTs) to design a method for following motor development of young children over time through video images, created by the parents themselves. Central to their question is the development of an objective, quantifiable observation method that is not too stressful for parents and child, which enables PPTs to quickly and efficiently follow the course of the early gross motor development (like rolling over, sitting independently or walking) in children in the first 18 months of their lives. For this application, an existing observation instrument is used: the Alberta Infant Motor Scale (AIMS). Design/methods To meet this request, a consortium was composed. In this, two faculties of the HU (Faculty of Health and Faculty of Science and Technology) participate, as well as three PPT departments of large hospitals (Wilhelmina Children's Hospital, VU University Medical Centre, and St. Antonius Hospital), the NVFK (professional association of PPTs), the regional PPT working group (as a representative of 21 PPT practices), Leidsche Rijn Julius health centres, and the Utrecht University, Faculty of Social Sciences/Pedagogy. This consortium creates a solid network of professionals, trainers, and knowledge institutions that deal with early development. The research fits in with the theme of Care and technology and fits in well with the new mission theme of the research centre, autonomy. The consortium has answered the question elaborated in four innovation and research projects:

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(1) Validation research using video recordings made by parents compared to live observation by therapists, to score the AIMS. (2) Innovation and feasibility study about technical, legal and operational aspects. (3) A pilot study of longitudinal developmental trajectories measured in healthy infants. (4) A cross-sectional study to evaluate the motor performance of Dutch infants compared to the original Canadian normative data. (Expected) results Concrete results to date (June 2015): • A validated video observation method usable for research. • A (web-based) app for safely uploading and testing video material. • A database with videos that can be widely used in the training of (future) professionals, and a video tool for training in digital scoring of the AIMS. In addition to these tangible results, more knowledge and insight in the (longitudinal) developmental trajectories are expected, and through them a new way to look at development might ensue. Facilitators and barriers for both professionals and parents using the video method will be mapped. We will also gain more insight in the applicability of the Canadian norm values for the Dutch population. The cooperation between the consortium partners facilitates interaction between the knowledge centres Hogeschool Utrecht (HU) and Utrecht University (UU), the PPT master’s degree programme and PPTs working in hospitals and in primary care and health centres, using each other's competences to an effective network around early development.

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RESEARCH GROUP LIFESTYLE AND HEALTH Childhood

1st author: Title:

Provisional end date:

Jacqueline Nuysink PhD Godivapp Applied in Pediatric Primary care (GoAPP) SIA-Raak-Small enterprises(MKB) www.goapp.hu.nl June 2016- May 2018

Background & research question Observing and measuring motor development of infants over time supports the analysis of any motor problems, especially in high-risk infants. To do so, pediatric physiotherapists (PPTs) use the Alberta Infant Motor Scale (AIMS), an observation instrument. In 2014 and 2015 the GODIVA-research group of Hogeschool Utrecht (HU) designed and validated a method for following gross motor development of infants over time using the AIMS, through video images created by parents themselves. PPTs considered the video-method as a supplement to existing methods, making monitoring of infants more efficient and transparent. The method fits perfectly in the current E-health development and self-management /empowerment of parents. For longitudinal research with the video-method, a prototype of an IT application (Godivapp) is designed. The app allows video images to be sent and stored in a safe way. The prototype is not yet suitable for use in professional practice. PPTs working in primary care would like to use the app. They expect it to have added value for the quality of care and a chance to innovate their practice. However, as entrepreneurs they also see barriers, like IT helpdesk support, and an appropriate fee for a video teleconsult. For these small enterprises, affordability and ease of use play an essential role. The purpose of the GoAPP-project is making an innovative video-method for observing motor behavior of infants suitable for usage in PPT primary care, with an appropriate implementation plan and business modelling. Design / method Within GoaPP five perspectives for implementation and innovation are brought together: end users (PPTs and parents), healthcare, hard technology, soft technology, and a business perspective. A consortium is composed consisting of 72


researchers from five HU research groups, namely Life style and health (FG), Architecture of digital IT systems (FNT), Co-design (FNT/FCJ), Process innovation and IT (FEM), and Innovation of mobility care (FG), 10 PPT-practices, Biomedia bv, and the professional association of PPTs. Parents and health insurance companies will join the project later. The interdisciplinary research is arranged around three work packages: (1) optimisation of the innovation, i.e. the videoportal, (2) implementation, and (3) business feasibility, using design-based research, literature review, implementation analysis, and business-case research. A fourth work package focusses on development of the PPT network into a Community of Practice. Features of the GoAPP project are: An iterative and cyclic process >> Combinations of work packages >> Cocreation >> Open innovation. Expected results (1) A well-functioning application with production-ready software. (2) An implementation plan with various scenarios and a toolbox. (3) Business- and service model with various scenarios. (4) Adoption of the innovation and a Community of practice ‘Developmental diagnostics of motor behavior in infancy’.

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RESEARCH GROUP LIFESTYLE AND HEALTH Childhood

Authors: Title:

Provisional end date:

Marike Boonzaaijer MSc, Imke van Maren-Suir MSc, Jacqueline Nuysink PhD Using a video tool for parents to evaluate infants gross motor development with the Alberta Infant Motor Scale: a feasibility study 2016

Background & research question The daily integrated use of smartphones is common across the world. In the Netherlands the number of smartphones increased in 2013 by over a million, from 7 million to 8.5 million. Many parents use their smartphone to make videos of their child. Pediatric physical therapists (PPT) and pediatricians notice that parents bring video material to the practice to show gross motor development of their child. Taking this into account, the GODIVAstudy developed and validated a method using home video recordings made by parents to observe gross motor performance on the Alberta Infant Motor Scale (AIMS) in infants (0-19 months). Parents are invited to make a structured video of their infant’s gross motor repertoire in the home environment. They are guided by a tutorial video and a checklist, and are free to choose a suitable time for the child and themselves to make the recording. The video can be send to a PPT, who will use the video to assess the gross motor repertoire of the infant using the AIMS. An accessible smartphone application for filming and securely uploading the material was developed by students of our Technical Faculty and is being implemented. At present, the method is used for research purposes to study the variety of gross motor trajectories in typical developing infants. In this design, parents are being asked to make five home videos of their infant in nine months’ time. In the future, the video method can also become a helpful tool for clinicians. For a successful implementation it is important to explore the feasibility of the method. The objective of this study is to describe expectations and experiences of both user groups: parents and professionals (PPTs) to identify barriers and facilitators to the video method. 74


The research questions regarding the parents are: 1. Are all parents able to make useable home videos of their infant, given a set of instructions? 2. How do parents experience this method in regard to their infant’s motor development? 3. Are parents motivated to engage in a longitudinal follow-up? ‘ The research questions regarding the pediatric physical therapists (PPTs) are: 4. What are the barriers and facilitators of the video method for PPTs in both private practices and hospitals? Design/methods To find answers to these questions, a ‘mixed method approach’ is being used. Data has been collected during the validation study (November 2013-July 2014) and during the current pilot study longitudinal pilot (September 2014-January 2016).

Methods validation study: - Questionnaire for parents (n=48) - Interviews with parents (n=10) - Focus groups with pediatric physical therapists (n=22) (hospital/private practice) Methods longitudinal pilot: - Questionnaire for parents (n=50) - Interviews with parents (n=8-10) Results Data collection and data analysis are still in process. Final results are expected by the end of 2015. 75


RESEARCH GROUP LIFESTYLE AND HEALTH Childhood

Authors: Title:

Provisional end date:

Imke van Maren-Suir MSc, Marike Boonzaaijer MSc, Jacqueline Nuysink PhD Gross motor Development of Infants using home Video registration with the Alberta Infant Motor Scale (GODIVA): a longitudinal pilot 2016

Background & research question Contemporary theories support the premise that motor development is characterised by intra-individual variability. If there is a better understanding of the variability in gross motor development of typically developing young infants, the possibility exists that non-typically developing children are better recognised. Therefore, the aim of this pilot is to gain insight in the variability of the gross motor development of healthy, full-term born, typically developing children. Multiple observations over time are needed to define the motor developmental trajectory of an infant with more accuracy. Longitudinal measurements of the motor development of infants in the age of 6 weeks to 19 months, scored according to the Alberta Motor Infant Scale (AIMS), will give us the opportunity to develop longitudinal motor trajectories. Design/methods The aim of the pilot was to include 50 children in the study. Two parallel cohorts cover the total age range (6 weeks to 19 months). The first cohort started at the age of six weeks; the second cohort started at the age of 8,5 months. The gross motor development is assessed by the AIMS using home video registration. The protocol of the AIMS home video registration has been validated in an earlier study of GODIVA and has shown fair psychometric properties. Parents of healthy, typically and full-term born children who understand the Dutch language, video-recorded their infant five times with two month intervals, according to a checklist and an instruction video. The two researchers assessed the video observations with the AIMS.

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A web-app has been developed where parents can upload their video recordings safely. When a received film was assessed, feedback on the gross motor development was sent to the parents. The feedback consisted of a 'growth chart' in which the results of the test were compared with the normreferences. With longitudinal analysis insight in the individual motor trajectories will be achieved. Results The aim of the pilot to include at least 50 infants has been achieved. But, at the time of writing, data collection of the repeated measurements is still in process. Final results are expected at the end of 2015.

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RESEARCH GROUP LIFESTYLE AND HEALTH Childhood

Authors: Title:

Provisional end date:

Marike Boonzaaijer MSc Variety of developmental pathways of gross motor development in infants and the influence of parental beliefs and motor habits. January 2020

Background & research question To study the variety of developmental pathways of gross motor development in individual infants, longitudinal research designs are preferred. However, commitment to participating in such studies is challenging due to parental time constraints. During the GODIVA-study, a method using video recordings made by parents to observe their child’s gross motor development at home was developed and validated. Using this method, the current study investigates gross motor trajectories of infants with the Alberta Infant Motor Scale and variables hypothesised to be associated with the rate and level of developmental progress in gross motor performance from birth to 19 months of age. Research questions Which, longitudinal measured, gross motor developmental trajectories of healthy Dutch infants can be distinguished, looking at the speed and sequence of their development? Are parental beliefs and motor practices associated to gross motor development of infants, and can they (partially) explain the variety? Design/methods To find answers to these questions a longitudinal design is set up. Healthy term born infants (n=100) will be included. Parents are asked to make a home video of their infant, guided by instruction materials, at 3.5, 5.5, 7.5, 9.5, 12.5 and 15.5 months of age. With this home video the gross motor development will be assessed using the Alberta Infant Motor Scale (AIMS). At the start and after completing the study, parents receive a questionnaire on Parental Beliefs (PBMD). When the infant is 5.5 months old, they also receive a questionnaire on motor habits in daily life. 78


Results Data collection has just started. Final results are expected by the end of 2020.

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RESEARCH GROUP LIFESTYLE AND HEALTH Childhood

Authors: Title:

Provisional end date:

Imke van Maren-Suir MSc I stumble and fall: Individual motor trajectories of preterm born infants until reaching the milestone of walking January 2021

Background & research question Learning to walk is a natural challenge faced by all infants. The way and speed in which infants reach the motor milestone of walking is characterized by interand intra-individual variability. Infants born premature (nearly 8% of the Dutch population) are at increased risk for delayed or deviant motor functioning making timely recognition of atypical motor development important. On the other hand, unnecessary interventions and parental concern for children to reach this milestone need to be avoided. This longitudinal study examines individual pathways of motor development (home-videos) and contextual factors (e.g., parental beliefs) with the aim to enhance future interventions. Design/methods This large study is part of a PhD trajectory and will be subdivided in five studies: Study 1: Norm reference study of the Alberta Infant Motor Scale (AIMS) for Dutch infants. Are the current Canadian references suitable for the Dutch population? Healthy, normally developing children in the age of 0 to 19 months are included. Parents make one AIMS home-video of their child. These children have to represent the normal Dutch population (8% premature infants, 12% parents of non-Western origin). Study 2: Systematic review of factors that influence infant motor development. Which factors are known in literature to be of influence on the gross motor development of infants up to 2 years of age? In the databases Pubmed, Cinahl, Psychinfo and Eric will be searched. Study 3a: Longitudinal study of motor trajectories, sensitive periods and associated factors of premature infants. For this study premature infants, born 80


before 32 weeks pregnancy or infants with a very low birthweight, <1500 grams, will be included. Parents will be asked to make an AIMS home-video five to seven times with an interval of 2 to 3 months. Study 3b: Association of parental beliefs and motor development of premature infants. Research questions are: Which ‘beliefs’ do parents have of premature infants and what is the relationship with their motor development? Do these ‘beliefs’ change in time and is this in accordance with their child’s motor developmental trajectory? The same parents as in study 3a will be asked to fill in questionnaires about their beliefs. Study 4: Expectations and experiences of parents with a premature infant using the AIMS home-video protocol. Before and after study 3a and 3b the same parents will be sent a questionnaire to ask what they expect and what they have experienced in filming their child. A few parents will be asked for an in-depth interview. Results The study will officially start in September 2016 and will be expected to be finished in September 2021. The results of the studies will be submitted for publication as open access articles in different journals. For the first two studies results are expected in the first quarter of 2017.

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RESEARCH GROUP LIFESTYLE AND HEALTH Childhood

1st author: Title:

Petra Nijmolen MSc Gross motor performance in Dutch infants: standardisation of the Alberta Infant Motor Scale (AIMS-NL)

Background & research question The Alberta Infant Motor Scale (AIMS) is a norm-referenced observational instrument to assess gross motor performance of infants aged between 0 and 19 months (from birth to independent walking). This scale has been developed in Canada and is utilised for clinical and research purposes in many countries. However, it has been questioned whether the initial standardisation of Canadian infants is also representative of other countries’ populations, including the Dutch population. In 2013, a re-evaluation study was published, comparing the original normative data of the AIMS (N=2,202), collected 20 years ago, with a contemporary sample of Canadian infants (N=650). Researchers used statistical scaling methods to examine the appropriateness of the present norms and to recalibrate the present percentile ranks where necessary. The cost-effective statistical method developed for this study was published, enabling international researchers to use the same approach to evaluate the validity of Canadian-based norms for their infant samples. In the following study this method will be applied. Research question: does the AIMS need adapted reference values for Dutch infants? Design/methods We have set up a cross-sectional study of 450 Dutch infants between the ages of 2 weeks and 19 months, assessed once with the AIMS using a standardised homemade video observation. The assessments are stratified by age. The infants represent the ethnic diversity of the Dutch population. Infants with atypical motor development will be excluded. 82


In 2014, validation and feasibility studies took place for gross motor development of infant using home video registration with the Alberta Infant Motor Scale within the GODIVA-project. This enables parents to make the home video registration at a moment that suits both parents and child, using a checklist and an instruction video. A trained paediatric physical therapist assesses the home video after admission. These studies provided a valid and reliable home video-observation method for assessing gross motor performance in young children. In the following study this method will be used. An important psychometric characteristic of the AIMS is that items describing motor abilities can be placed on a scale representing the age when 50% of the infants would pass each item. Logistic regression will be used to place the AIMS-items on an age scale representing the age at which 50% of the infants of the Dutch data set passes an item to be compared to the original Canadian dataset. Recruitment and selection of participants is currently the main objective of this study. Main results to date There are no results to be reported yet. Selection and inclusion of the infants has started in March 2015 and the first results are expected by the end of 2015.

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RESEARCH GROUP LIFESTYLE AND HEALTH

Author:

Title:

Jan Pool PhD PT MT, epidemiologist Associate professor research group Lifestyle and Health Musculoskeletal research line

The research group is studying biological, psychological and social influences of musculoskeletal disorders in patients with pain in the neck, low back, and all kind of different chronic pain problems. Our groups at the Utrecht University of Applied Sciences consist of one senior researcher and three PhD students. Furthermore, we offer internships for master’s students to participate in the three studies. Participation of bachelor’s students in the minor Co-Design is in preparation. A short summary of the studies: Click study: non-specific neck pain: to match or not to match? • PhD student: Francois Maissan The aim of this research line is to identify subgroups of neck pain patients, and devising which intervention is most effective or matches best to what subgroups.

Percept study: Illness Perceptions in Patient Physiotherapy • PhD student: Edwin de Raaij • NWO PhD grant for teachers • Starting September 2015 The aim of this project is: • To assess the influence of illness perceptions in low back pain patients in the clinical practice. • To develop a reliable and valid questionnaire in the Dutch language to assess illness perceptions. 84


• • •

To assess the different types of illness perceptions (prevalence). To assess the relation between illness perceptions and outcome in low back pain patients. To develop strategies for influencing these perceptions by the physical therapist.

Solace study: Self-management in chronic pain strategies • PhD student: Stefan Elbers • A RAAK financed project • 2014-2016 The aim of this project is to assess the long-term effect of a chronic pain program and to develop strategies to perpetuate the achieved changes in behaviour. For the latter question, cooperation with the departments Co-Design and Cross-Media Communication in the Public Domain is essential. Finally the outcome of the co-design phase will be tested in a pilot.

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RESEARCH GROUP LIFESTYLE AND HEALTH

Author: Title: Provisional end date:

Stefan Elbers Self-management in chronic pain strategies (SOLACE) 1 February 2017

Background & research question The SOLACE project aims to investigate relapse after successful treatment in patients with chronic musculoskeletal pain. Although there is an indication that patients with chronic pain relapse after rehabilitation, there is insufficient empirical research available to support this claim (Turk & Rudy, 1991; Morley, 2008). After consulting the treatment staff of chronic pain rehabilitation programmes (Wittink & Pool, 2014), the following research question was formulated: what is the long-term effect of a multidisciplinary chronic pain rehabilitation programme, and are there strategies available to prevent relapse? Design/methods In total, four objectives have been derived from this main question. First, we aim to investigate the long-term effect of a multidisciplinary chronic musculoskeletal pain treatment programme, and to measure patient relapse, by means of a prospective longitudinal survey. Second, we will use co-design to develop relapse prevention strategies, aimed at adherence to treatment related behavioural changes. This qualitative research method is characterised by the continuous participation of relevant stakeholders throughout all development stages. Third, we will conduct a systematic literature review on the effectiveness of self-management interventions on pain, disability, and health related quality of life in patients with chronic musculoskeletal pain. These three studies will be performed simultaneously in the first 18 months of the project. Subsequently, our fourth aim is to pilot test the outcome of the co-design, to investigate its feasibility in the last three months of the second year. Depending on the outcome of the co-design, an appropriate design will be adopted for the pilot study.

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The SOLACE consortium consists of the following partners: research groups Lifestyle and Healthcare, Co-design and Cross-media Communication at Utrecht University of Applied Sciences, pain treatment clinics in rehabilitation centre Adelante Hoensbroek and Maastricht University Medical Centre (MUMC+), Dutch society for patients with chronic pain ('pijnpatiĂŤnten naar 1 stem'), and the Royal Dutch Society for Physical Therapy (KNGF). Main results to date We have conducted context-mapping interviews with ten members of the treatment staffs of pain rehabilitation programmes. Patient interviews and prototyping co-creation sessions are planned in the second half of 2015.

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RESEARCH GROUP LIFESTYLE AND HEALTH

Author: Title:

Start of the study:

Hans Heneweer PhD Lifestyle intervention and measuring quantity and quality of work Research in an occupational setting March 2013

Background & research question Various publications have addressed the negative consequences of impaired health, illness, and disease for work ability and productivity loss at work. Besides impaired health conditions different work characteristics, such as high physical or psychosocial work demands, may be related to productivity loss at work and absenteeism. Many factors effecting work ability can be influenced actively by lifestyle interventions aimed at physical activity, smoking, alcohol, food and relaxation.

Aim The exploration of the association between lifestyle interventions, i.c. physical reconditioning and dietary advice and the improvement of the quality and quantity of work performed on an daily basis. Study design Longitudinal study with repeated measurements at 6, 12 and 24 months and an estimated duration of 3 years. Research population Employees on various degrees of sick leave and employees with an increased risk profile for sick leave of the police department Utrecht (NL) participate within the study. Participants are referred by a company doctor and included into the program after ruling out conceivable health related risk factors for physical exertion. Research questions • What is the effect of a weekly physical training program, supported by a 88


dietary advice, on the quality and quantity of work performed on an daily basis by the individual employee? What is the proportion of variance within the improvement of scores on quality and quantity of work, explained by scores on physical training and physical, emotional and social lifestyle factors?

Measurements • Assessment general health and physical fitness (Res. Dep. Lifestyle&Health); • QQ method (Brouwer et al. 1999); • Vragenlijst ArbeidsReïntegratie (Vendrig et al. 2007 en 2011); • IPAQ-DLV (Poppel et al. 2004); Rand-36 (van der Zee et al.2012); • Vragenlijst voeding (Stegeman (2013) Analysis Analysis will be performed using the intention-to-treat principle. Descriptive statistics of work ability and productivity, and variables for the factors studied in the cohort will be presented in percent, means, and standard deviation (SD). Data will be explored by means of repeated measurements and multivariate regression models with a stepwise-forward-selection approach. Main (descriptive) results to date Ninety participants completed up to date the full T0 assessment and forty completed the T1 asessement. Characteristics: age 42,4 mean (sd 13.5); sickness absence 4.1 month mean (sd 4.6); BMI 29.3 mean (sd. 6.3); exercise capacity male 92.9% mean (sd 32.1); female 109.7% mean (sd 18.2); Measurement scores: Quantity and Quality of work(QQ method 10 point score): 5.68 mean (sd 3.1) resp. 6.84 mean (sd 2.9). Physical activity (IPAQ sf): levels of intensity: low 4(11%), moderate25 (67%), high 8 (22%). Rand 36: PCS 47.3 mean (sd 9.6); MCS 40,4 mean (sd 15.2). Preliminary analysis revealed significant, (low up to moderate) correlations (rp) between scores on the Rand 36 (PCS) and VO2 peak / BMI and the selfestimated emotional ability to perform work. Both scores on quality and quantity of work are significantly correlated with scores on the Rand 36 (MCS), VO2 peak and BMI. Self-estimated physical work ability is moderately correlated with self-estimated emotional work ability, quantity and quality of work.

Longitudinal cohort study in cooperation between the Research Department Lifestyle and Health, University of Applied Science, Utrecht (NL) and the Utrecht Police Department

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RESEARCH GROUP PROCESS INNOVATION IN PHARMACEUTICAL CARE Ad van Dooren PhD M.Ed


Improving patients’ self-reliance and autonomy is the focal point of our research group Process Innovation in Pharmaceutical Care (IPCP). This focal point is translated into studies aimed at (1) improvement of medication adherence; (2) safe and efficient prescribing, administering, and using (new) medicinal products; and (3) communication and engagement in patient-provider discussions on e.g. medication use. The results of these studies will contribute to rearrangements of tasks and responsibilities within the (pharmaceutical) care domain. The mission of our research group IPCP is the improvement of processes in pharmaceutical care and skin therapy, focused on (1) the patient, (2) professionals graduated at universities of applied sciences in disciplines such as pharmaceutical business administration and skin therapy, and (3) the communication processes between these two focal groups, in particular related to prescribing and using (safe) medication, and to self-management and evidence-based care processes in skin therapy. This leads to the following research lines: 1. (Pharmaceutical) autonomy, self-reliance, and participation in care by patients, particularly aimed at: a. Medication adherence (e.g. the current HomeCoMe study) b. Decrease of use of medication (such as the current DIKSAP study) c. Safe use of medication, also related to the relationship between medication use and patient quality of life (such as the Hypo but not Happy study) d. Migrants in community pharmacy 2. Task and responsibility rearrangements within the pharmaceutical and skin therapeutic care domains (e.g. The BRINTA, PARAPLU and ZAZA studies) 3. Communication processes within the pharmaceutical care domain (such as the DESTINE and COMPARTIMENT studies) The research group is a centre of expertise for medication related care and skin therapeutic care to the advantage of the patient, and collaborates with many parties within these domains. One of our current initiatives is the establishment of a paramedical research laboratory.

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Current research lines • HomeCome: pharmacists visits to patients’ homes after hospital discharge. • DIKSAP: DIabetes voorKomen door Sallandse APotheken (prevention of diabetes through community pharmacists in the Salland region). • Hypo but not Happy: quality of life of hypothyroid patients, in particular in relation to their medication. • Migrants in community pharmacy. Study with a grant from KNMP (Royal Dutch Pharmaceutical Society). • BRINTA: Basic Research into Integrated Therapy of Acne. • PARAPLU: PAtient self-ReliAnce to Prevent(venous) Leg Ulcers. • ZAZA: Zelfstandig Apotheker Zonder Apotheek (self-employed pharmacist without a pharmacy). • DESTINE: Diabetes Education & Self-management To INcrease Empowerment. • COMPARTIMENT : COMmunications on PARkinson Therapy Innovations AssessMENT.

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RESEARCH GROUP PROCESS INNOVATION IN PHARMACEUTICAL CARE Communication with the patient

Author: Title:

Bas Steunenberg PhD Medication use underutilisation in older nonwestern migrants: improving health literacy from the community pharmacy

Background & research question Older immigrants are in a disadvantaged position regarding disease prevalence and drug use. If language proficiency and health literacy are insufficient, they will predominantly remain so, even if they have been resident of the Netherlands for a long time. In cooperation with the research group Process Innovation in Pharmaceutical Care (HU), Pharos (Pharos.nl), health centre Kanaleneiland Utrecht (gezondheidscentrum-kanaleneiland.nl), Dutch Network Older Migrants (NOOM.nl) and Pharmacist Association Utrecht (apothekers-vmn.nl), a project is started to enhance the knowledge about health, healthcare and drug use, and to improve medication self-care skills and drug adherence within the group of older migrants. Aim of this project is a transition towards culturally sensitive pharmaceutical services that optimally address the wishes and needs of older migrants. It leads to improved pharmaceutical processes and care to actively help older migrants enhance their health literacy. Design/methods The community pharmacist in this project employs a community health worker (CHW), who knows and is able to get in contact with the local community of older migrants. This model is based on the healthcare and social welfare utilisation optimisation project of the UMC Utrecht, Voice of the Older Migrant. The CHW visits older migrants (mostly Moroccan, Turkish and Chinese older adults) at their homes and interviews them about their medication history and

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drug use adherence. With this input, meetings and workshops are organised for the older migrants to attend. These meetings and workshops are aimed at enhancing health literacy and self-care skills. Next to this, the service of the community pharmacist to the older migrants is evaluated. Where possible, it is adjusted to their wishes. The pharmaceutical care and processes are optimised by means of this project, in order to improve access to pharmaceutical care and medication adherence within this group of older adults. The project started in august 2015. In 12 months, a toolkit will be developed and included in the guidelines of the KNMP. This project is sponsored by the KNMP and the project partners.

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RESEARCH GROUP PROCESS INNOVATION IN PHARMACEUTICAL CARE Communication with the patient

Author: Title: Provisional end date:

Hans Vehof MSc Assessment of news messages about innovative therapies for Parkinson’s disease 2019

Background & research question The potential to access online news about innovative therapies (NIT) for Parkinson’s disease (PD) is large and wide. PD patients have a need for knowledge in order to manage their situation and prepare for the future. Former studies show that health information seeking behavior is related to affective outcomes such as hope, anxiety, fear and distress. Furthermore, information seeking has an effect on increased perception of control, informed decision making, health behaviors and adherence to treatment. Poor medication adherence is a complex problem and is associated with a variety of risk factors. Depressed PD patients have an increased risk to nonadhere. Greater knowledge of PD is found to be associated with better adherence. Conversely, adherence may decrease as a result of higher education giving patients more capacity to challenge health provider opinion. The theory of news values describes why a Parkinson disease related topic is newsworthy and is therefore published by media. The value of news increases with the number of news factors that are accumulated by an event. If the resulting total news value of an item is higher, the changes for publications are higher. This research project focuses on the question: "What are quantity, cognition and affection related characteristics of news about innovative treatments for Parkinson’s Disease and in what way do they, possibly, affect patient adherence intentions?”

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Design/methods In association with the Radboud University Nijmegen Centre for Language Sciences, four studies are scheduled. 1. Long-term quantitative trends of NIT publications are assessed 2. A content analysis of objective and affective text fragments in NITs for PD is performed. 3. Quantitative patient interaction on social media is measured in relation to developmental phase of the NIT 4. A vignette experiment provides insight in possible relations between objective and affective text fragments and patient expectations, knowledge and adherence intentions. Main results to date Recently, the assessment of long-term quantitative NIT trends was started. First results are expected In December 2015. Discussion To date, no research has been performed on qualitative or quantitative characteristics of news messages about innovative treatments for chronically ill patients. Furthermore, no information is available about the impact of messages with varying cognitive and affective characteristics on patient expectations and intentions.

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RESEARCH GROUP PROCESS INNOVATION IN PHARMACEUTICAL CARE Pharmaceutical processes

Author: Title:

Provisional end date:

Rik Ensing PharmD MSc HomeCoMe programme: improving medication management post-discharge in hospital-to-home care transitions by pharmacists October 2016

Background & research question Adverse drug events (ADEs) and other drug related problems (DRPs) are common in all healthcare settings. For patients, ADEs generally are the most invasive type of DRPs. However, other DRPs, such as under-prescribing or nonadherence, may also result in patient harm, leading to unplanned hospital (re)admissions. Moreover, several studies indicate the occurrence of a high number of readmissions in the days to weeks following discharge. Although a guideline on transfer of drug related information has already been developed in the Netherlands, both hospitals and primary care providers are still struggling with its implementation. In addition, it is questionable whether it suffices to provide patients with information on medicine use at discharge only. Previous studies, however, used interventions within the hospital or within the community setting only, which could still result in discontinuity of care. Thus, it seems likely that the reduction of DRPs, improvement of patients’ medication knowledge, and adherence are most effectively addressed in a multifaceted integrated transmural intervention. Pharmacist interventions have proven effective in reducing the number of DRPs and ADEs. By introducing a home-based medication management programme within the first week after discharge, DRPs could be effectively prevented: patients are kept from slipping back into old medication routines, and the rise of new problems may be countered, such as emerging ADEs due to medication changes made during hospitalisation. Therefore, the main objective of this study is to investigate the capability of a Home-based Community pharmacist-led Medication management (HomeCoMe) 98


programme to identify DRPs (including suboptimal medication adherence, lack of knowledge, and ADEs) in recently discharged patients. Design/methods A prospective cohort study with a nested case control analysis will be performed. 150 patients will be included to receive an in-hospital medication reconciliation programme, complemented with a pharmacist home visit. The follow-up is 6 months. Possible DRPs will be identified during the home visit. The community pharmacist will perform onsite action or will contact the responsible physician to solve any identified ADE or other DRP. Main results to date All 150 pharmacist home visits have taken place and initial analysis will be started by the end of 2015. Discussion This study proposes an innovative approach for preventing early readmissions and managing post-discharge DRPs (including ADEs), an issue in healthcare with a known clinical as well as economic burden. Thus far, of the interventions shown to be effective, most have had both an in-hospital and a posthospitalisation component. Therefore, we think the integrated care plan in the HomeCoMe study, incorporating an in-hospital medication reconciliation and review programme which is complemented with a home-based medication management programme, has the potential of significantly improving patient safety, reducing healthcare costs, and contributing to optimizing current clinical practice regarding care transitions. 99


RESEARCH GROUP PROCESS INNOVATION IN PHARMACEUTICAL CARE Pharmaceutical processes

Author: Title:

Ellen Molewijk PhD Quality of life, activities daily living, symptom history and satisfaction with treatment and care in treated hypothyroid patients

Background & research question Hypothyroid patients have few treatment options. A part of patients seem to keep complaints, despite replacement therapy and 'normalcy ' of blood values. According to the Dutch NHG standard, levo-thyroxine (T4) is the preferred treatment. Titration of the dose is based on the TSH and sometimes on the FT4 value. It is not known how satisfied hypothyroid patients are with their medication and care. The objective of this project is to research the nature and extent of persisting complaints in treated hypothyroid patients, as well as the satisfaction about treatment and care they receive, in order to optimise future care. Design/methods Data was collected in a national survey using Limesurvey for hypothyroidism patients 18+ years of age who use replacement therapy for longer than half a year. Patients were approached through mailings by the Thyroid Organisation Netherlands (SON, patient association), posts on thyroid websites (SON, VGNS), Facebook and Twitter, and by posters and flyers at general practitioners, pharmacies and hospitals. In addition, a control group of persons of 18+ years without thyroid disease were included for reference. Frequencies, correlations and non-parametric statistics of patient responses compared to control were done using SPSS. Main results to date An interim analysis on 1,030 (of which 700 full) patient responses and 206 control responses indicates that daily functioning and quality of life are significantly reduced in patients compared to control subjects. Patients also 100


exhibited significantly more symptoms than controls. Patients were fairly happy with their medication. Outliers in the negative sense were Thyrax and generic levo-thyroxine sodium. Outliers in the positive sense were the natural thyroid preparations Thyreoidum and Armour. The satisfaction with the healthcare providers shows major differences. An important source of dissatisfaction is the provision of information about the disease and the treatment; another is the extent to which patients’ complaints are taken seriously. Discussion These interim results on daily functioning and quality of life indicate that treated hypothyroid patients have not recovered, despite the replacement therapy they received. This ties in with some articles and discussions on patients’ forums, but not in the general view of regular doctors assuming full recovery after treatment according to the Dutch NHG standard. The satisfaction of hypothyroidism patients can be improved by better medication and more adequate information about the disease and treatment.

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RESEARCH GROUP PROCESS INNOVATION IN PHARMACEUTICAL CARE Pharmaceutical processes

Author: Title: Provisional end date:

Esther du Pon MA DESTINE – Diabetes Education & Selfmanagement To INcrease Empowerment 2017

This PhD project investigates the effects of group education programme PRISMA on the use of an online care platform, communication with the practice nurse, and adherence to diabetes medication. A total of 250 patients with type 2 diabetes treated in primary healthcare will be followed in a randomised controlled trial for two years. DESTINE is a collaboration between three partners: Utrecht University of Applied Sciences, Diabetes Centre Zwolle and Medrie Care Group. Background & research question The prevalence of diabetes mellitus type 2 (T2DM) is strongly increasing. The increase in healthcare providers cannot keep up with the growing number of patients. Eventually, this may result in a decrease in available face-to-face time. Constraints on the growth of healthcare costs will further restrict the possibilities to spend adequate time per patient. Therefore, diabetes care requires a decrease in the workload per patient for care providers. This implies the necessity of alternative forms of support, treatment, and patient selfmanagement. This study investigates the effects of the PRoactive Interdisciplinary Self-Management training (PRISMA), a way to improve selfmanagement skills in patients with T2DM. PRISMA was developed by the VU University Medical Centre for T2DM patients. It is based on the DESMOND programme, which has been developed in the United Kingdom. In the PRISMA training, patients are encouraged to set personal goals and formulate a realistic action plan. Subsequently, these plans are followed up during routine clinical check-ups by the diabetes care provider. We investigate the effects of PRISMA on 1) the use of the e-Vita care platform, 2) the communication with the practice nurse and 3) adherence to diabetes medication.

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Design/methods We performed an RCT and included 250 T2DM diagnosed patients in the region of Zwolle treated in primary healthcare. A total of 125 participants attended PRISMA before they gained access to the e-Vita platform, while the other 125 participants only gained access to the e-Vita platform without prior PRISMA. Participants are followed for two years. The use of the e-Vita care platform will be monitored. At four time points, questionnaires will be completed. Clinical measurements will be collected as part of usual care. The consultations with the practice nurse during the study will be recorded by an unmanned camera and analysed on information exchange. Main results to date The first results of DESTINE will be available in 2016. Discussion As a result, we expect a change in patients’ behaviour: patients will be more involved in their treatment, and increasingly behave as active partners in their own care. This increased ‘empowerment’ of patients should in the end result in better self-management, improved self-reliance of, and more autonomy for patients with T2DM, a reduction of medical care utilisation, less workload for care providers and, as a consequence, a reduction of the total costs of care.

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RESEARCH GROUP PROCESS INNOVATION IN PHARMACEUTICAL CARE

Author: Title:

Provisional end date:

Audrey Meulendijks MSc PAtient self-ReliAnce to Prevent venous Leg Ulcers (PARAPLU); PhD proposal to stimulate secondary prevention in Chronic Venous Disease (CVD) 2019

Background & research question Chronic venous disease (CVD) is a common progressive condition that expresses several symptoms that in most cases sequentially appear: Reticular veins, varices, oedema, skin changes and eventually a Venous Leg Ulcer (VLU). Age, obesity and venous hypertension are known risk factors for the deterioration of CVD. The average time from CVD diagnosis to a VLU is five years in patients over the age of 60, however not all CVD patients develop a VLU. In the past decade the incidence of patients with CVD symptoms almost doubled. Treatment is based on symptom relief an lifestyle advice, including (leg)exercise and weight loss. However, CVD care is not a continuous process. Symptoms are treated and lifestyle advice is given, whereupon a CVD patient leaves the care system until the next symptom occurs, signaling a more severe stage of CVD. An increase in CVD severity is associated with a significant decrease in diseasespecific Quality of Life (QoL). Health Related Quality of Life (HRQoL) in patients with a healed ulcer is not significantly higher than the HRQoL in patients with an active VLU. This emphasizes the importance of preventing VLUs. Nowadays, most research in CVD prevention and self-management focusses on VLU healing and preventing VLU recurrence. Unfortunately, no studies were found as yet that investigate prevention or self-management in earlier stages of CVD to prevent a first VLU. In other chronic illnesses, like diabetes, prevention and selfmanagement are well studied and implemented to increase the self-reliance of a patient to prevent a diabetic foot ulcer. The aim of this study is to investigate the influence of patient characteristics and care related factors on the development of a VLU in patients with CVD. This will lead to a set of risk factors and associated preventive interventions from a 104


patient and healthcare providers’ perspective. After this PhD study a preventive self-management program will be developed (using the results from the PhD study) for CVD patients who are at risk for the development of a VLU. The effectivity of this program will be tested with a randomised controlled trial after this PhD period.

Research question 1 Which patient characteristics and care related factors influence the development of a Venous Leg Ulcer (VLU) in patients (age >60 year) with severe Chronic Venous Disease (CVD) in the Netherlands and to what extend? Research question 2 Which preventive interventions are feasible in a self-management program for the prevention of a Venous Leg Ulcer (VLU) in patients (age >60 year) with severe Chronic Venous Disease (CVD) in the Netherlands? Design/methods Systematic literature review Which patient characteristics and care related factors are known from the literature to be associated with CVD severity in an adult population with primary CVD?

Qualitative study: narrative interviews How do Dutch patients with Chronic Venous Disease experience the development of a Venous Leg Ulcer? Case-control study Which and to what extent do patient characteristics and care related factors influence the prognosis of severe Chronic Venous Disease (CVD) to a Venous Leg Ulcer (VLU) in an adult (age >60 years) Dutch population? Systematic literature review Which preventive interventions for a first Venous Leg Ulcer (VLU) are known from the literature in an adult population with Chronic Venous Disease (CVD)? Cost-efficiency study Which preventive interventions for a Venous Leg Ulcer are cost-efficient in the care for Chronic Venous Disease patients and to what extend? Qualitative study Which benefits and restraints are there in previous, current and future Chronic Venous Disease (CVD) care, according to healthcare professionals and patients involved in CVD care in the Netherlands? Main results to date The first results of PARAPLU will be available in 2017 105


RESEARCH GROUP PROCESS INNOVATION IN PHARMACEUTICAL CARE

Author:

Title: Provisional end date:

Femke de Vries MSc Research group Process Innovation in Pharmaceutical care in collaboration with Radboud UMC Basic Research into INtegrated care for the Therapy of Acne vulgaris (BRINTA) July 2019

Background & research question Approximately 90% of adolescents are dealing with one type of acne, which can vary from mild to severe forms of acne. Although acne is often considered as a cosmetic problem, the disease can have a major impact on a patients quality of life. This requires an effective approach in acne care, for example by offering integrated acne care: health care given in a multidisciplinary context between general practitioner, dermatologist and skin therapist. Acne therapies, executed by general practitioners and dermatologist, are mainly focused on prescribing several types of medication (topical and systemic). Skin therapists, on the other hand, focus on carrying out non-drug related acne therapy including chemical peels, microdermabrasion and light and laser therapy. Providing acne patients integrated care, may contribute to more effective and efficient care and a better organization of health care around patients. However, integrated care within the Dutch acne domain is not yet sufficiently applied. This is partly due to the lack of scientific evidence which describes the added value of integrated (acne) care. In the BRINTA study Femke aims at examining this added value of integrated acne care, with special interest on the role of the skin therapist within the acne care-chain. Main- and sub research questions What is the added value of integrated care, including dermatologists, GP’s and skin therapists, for patients with acne vulgaris in enhancing the effectivity and efficiency of the care provision?

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1. What is the state-of-the-art within scientific evidence on skin therapeutic acne interventions? (literature study) 2. How do patients with acne vulgaris and acne care providers experience the acne care provision within the Dutch health care system? (qualitative study) 3. Is integrated care, including skin therapeutic treatment, more effective compared to the regular or mono disciplinary care? (RCT) Design/methods First, a systematic literature review will be conducted to investigate the scientific evidence for skin therapeutic acne interventions. Secondly, an interview-based qualitative study will be conducted to gain insights into perspectives, concerns, experiences and opinions of all involved parties within the acne domain. Third, a two-armed Randomized Controlled Trial will be conducted to test the added value of skin therapy to regular therapy from a general practitioners and/or dermatologists. The intervention group consists of acne patients who receive a dermatological treatment or treatment from a general practitioner, complemented by a skin therapeutic treatment. Patients in the control group receive a regular acne treatment from a dermatologist or a general practitioner without a skin therapeutic treatment. The main outcome variables that will be measured are the decrease in the number of acne lesions, patient satisfaction, health related quality of life and patients adherence. Main results to date First results are expected in September 2016.

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RESEARCH GROUP SPEECH AND LANGUAGE THERAPY Professor Ellen Gerrits


The ability to speak, listen, read, and write is so common that we do not realise what impact it can have when these abilities do not come naturally. Communication through language and speech is essential for interpersonal contact and participation in society. The mission of the Speech and Language Therapy research group is to optimise communicative functioning of children and adults with speech and language disorders, leading to more autonomy and self-management in daily living. With our research projects, we want to expand the body of knowledge on effective interventions for prevention, cure and care of communication disorders. The perspective of the individual patient is leading in this. There are two research lines: 1. Prevention of speech and language disorders • PRiL: Speech and language therapy in child healthcare • Child healthcare professionals’ questions about developmental language disorders • TUK: Usability of language screening in child healthcare 2. Evidence Effective Cure and Care • Development of instruments o ENGAGE: development of a patient reported outcome measure for communicative functioning o SAQoL-39nl: psychometric evaluation of the Dutch quality of life questionnaire for patients with aphasia o Adaptation of the Boston Naming Test for patients with aphasia • Intervention studies o The effect of vocabulary training with semantic scripts versus care as usual on word learning of toddlers with language impairment o The effect of school programme ‘Met Woorden in de Weer’ on word learning of children with specific language impairment o IntervenTOS: Predicting outcome of speech and language therapy in children with specific language impairment Teaching The knowledge generated by our research projects is translated into courses of the bachelor’s programme in Speech Therapy, Nursing, Digital Communication and Multimedia Design. The research group also participates in the master’s programme Clinical Language Speech and Hearing Sciences of Utrecht University.

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Sharing knowledge Our research projects are conducted in collaboration with professionals in the field of speech, language, voice, hearing and swallowing disorders. The Royal Auris Group is one of our key research partners, together with Child Healthcare (GGD) Hollands Midden, and the Dutch Association of Speech and Language Therapy (NVLF). To disseminate our research results, we organize workshops and conferences (e.g. TaalStaal 2015), and participate in working groups together with professionals such as the working group Clinical Guideline Speech and Language Therapy in Developmental Language Disorders.

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RESEARCH GROUP SPEECH AND LANGUAGE THERAPY Evidence Effective Care

Author: Title:

Mieke Beers PhD Research theme ‘Phonological intervention in children with speech and language disorders’

Background & research question Children with phonological impairments often have severe speech problems that may affect their intelligibility, leading to constraints in their communicative functioning. These children make up a major part (ca. 75%) of a speech and language therapist’s (SLT’s) caseload. SLTs experience difficulties in determining specific treatment goals and methods for children with severe speech problems. This is mainly due to the diverse aetiologies of speech disorders. Each type of speech disorder requires a specific treatment method. The goal of this research theme is to make intervention for children with severe speech problems transparent and accessible for all professionals. In particular, the research is focused on one type of speech disorder: that of phonological problems. How do SLTs differentiate this from other types of speech disorder, and which intervention goals and procedures are the most appropriate? Assessment of specific treatment goals involves eliciting single word pronunciations or analysis of connected speech in spontaneous speech samples. SLTs and other professionals may use a computer program (FAN, Fonologische Analyse van het Nederlands) for assessment and as a reference for goals for treatment. Based on words from a spontaneous speech sample it provides a comprehensive analysis of a child’s phonological abilities and problems. This program is now available as a web-based procedure: FAN 2.0. The projects of this research theme focus on further developing this web-based procedure FAN 2.0 and its implementation. 1) Implementation by optimising user friendliness and usability 2) Expansion with other, related applications, in particular the Phonological Mean Length of Utterance (PMLU). 112


3) Inclusion of existing, or development of new phonological therapy procedures Design/methods The research theme consists of the following on-going and planned projects 1) Implementation of web application: through focus groups/interviews/questionnaires of (first time) users investigation of the following aspects: What are the bottlenecks? What are users’ preferences with respect to use and design? 2) Expansion through other phonological applications: quantitative research with the application of the phonological word measure PMLU in normally developing and phonologically impaired children. With PMLU the phonological development of normally developing children can be measured, but clinical use in phonologically impaired children is still under investigation. 3) Use of website in research: standardising studies, application in effect studies of phonological therapy, application with specific groups such as hearing impaired children or multilingual children. Results The first project results concern the implementation of the phonological word measure PMLU, which is aimed at determining developmental levels of children with phonological impairments. The measure has been shown to be effective in detecting developmental delay. Further research is aimed at the clinical applicability: what is the optimal sample size in number of words for the determination of an individual child’s PMLU-score? Also, research will be aimed at the validity and the discriminatory ability of this measure. Discussion The optimisation of the user friendliness and usability of phonological assessment with this web based procedure will ultimately make it easier for professionals to determine specific treatment goals and methods for children with severe speech problems. Through innovation of technological procedures for assessment and treatment the projects intend to enhance the technological support for professionals involved in this type of intervention. 113


RESEARCH GROUP SPEECH AND LANGUAGE THERAPY Evidence Effective Care

Author: Title:

Provisional end date:

Gerda Bruinsma MSc Effectiveness of speech-language therapy in young children with developmental language disorders 1 January 2018

Background & research questions This study will investigate the effectiveness of speech and language therapy in preschool children with developmental language disorders and special education needs. A developmental language disorder severely affects communication skills and has adverse effects on all aspects of a young child’s development. Little is known about the effectiveness of different service delivery models combining therapy and education in children with developmental language disorders. Results of effect studies are contradictory, and, in most cases, aimed at older children. There is also a lack of research on child and therapy factors influencing effectiveness.

Research questions 1. What is the effect of speech and language therapy on language performance of 4 and 5 year old children with severe developmental language disorders in different educational settings? 2. What child factors, therapy factors, and educational factors are predictors of growth in language performance? 3. What is the grammatical development of children receiving speech-language therapy at schools for special education for the duration of one year? 4. What is the efficacy of Communicative Language Intervention on grammatical development, in comparison to usual speech-language therapy in children attending schools for special education? Design/methods This study consists of two parts.

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Part 1: Cohort study The effect of speech-language therapy and educational support on language performance will be measured during one school year. A solid and efficient monitoring system will be designed to collect data on language skills and influencing factors. 200 children, aged 4 and 5 years, scoring ≥ 1,5 SD below the mean on standardised language tests will be included. Measures on standardised language tests will be collected from their files (at Time 0 = start of the school year and Time 1 = end of the school year). Child, therapy and educational factors, such as intelligence, socioeconomic background, amount and frequency of intervention and group size will be registered. Through regression analysis, predicting factors for language growth will be determined. Part 2: Effect study Efficacy of Communicative Language Intervention (CLI, Van den Dungen, 2007) will be studied using a time-series design. 24 Children on different schools for special education will be randomly assigned to an intervention group and a control group. Measurements of grammatical development in spontaneous language will be collected in short intervals during one year. On Time 1 - Time 5 all participants will be receiving usual care. Subsequently on Time 6 - Time 8 the intervention group will receive CLI according to a protocol. Measurements on Time 9 and Time 10 will take place after the ending of the CLI intervention. The growth curve of each child in the intervention group will be analysed, making each child serve as its own control. In addition, growth curves of the intervention group and the control group will be compared. Main results to date Part 1: cohort study • 220 children are included • Data collection T0 is ready

Part 2: effect study • Preparations • Pilot study with spontaneous language (proposed outcome measure). Data analysis has started. The results will lead to improvement of care and education that is offered to children with developmental language disorders.

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RESEARCH GROUP SPEECH AND LANGUAGE THERAPY Evidence Effective Care

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Lizet van Ewijk PhD Optimization of a Communication Rehabilitation Program for nurses at a stroke unit. 2018

Background & research question 800.000 people suffer from a stroke worldwide every year. In the year 2015, 649 stroke patients were hospitalized at the Isala Hospital in Zwolle. Of these patients, 20-25% suffer from aphasia. Aphasia severely affects the individualsÍ› ability to communicate, their participation in social activities and their social support. Aphasia causes a serious health problem with serious Health Related Quality of Life (HRQoL) consequences. Early and frequent speech and language therapy may provide a better prognosis for the recovery of language functions (Brady et al., 2016). The Dutch Guideline for Stroke and recent Guideline for the Diagnosis and Treatment of Aphasia recommend a minimum of two hours of aphasia therapy per week. However, in many hospitals recommendations concerning aphasia therapy frequency are not followed. To achieve maximum effect an increase of speech therapy intensity for aphasia therapy to one hour per day is recommended. Recent literature suggests that intensifying aphasia therapy can be realized by involving nurses in therapy in collaboration with a speech and language therapist. A robust study on the usefulness and feasibility of such a communication intervention for nurses is not yet executed. Evaluations by 14 nurses at a neurology department of a general hospital led to content optimization. Therefore, the aim of this project is to develop and to introduce an interprofessional and efficient way of aphasia therapy in the acute stage at the neurology department of the Isala Hospital.

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Design/methods Phase 1: Development of an end user friendly intervention prototype. Phase 2: Content optimization of the communication intervention. The content of the intervention will be adapted so that it is consistent with the current evidence based practice for effective aphasia therapy in the acute stage. Phase 3: Introduction of the intervention at the Isala Hospital in Zwolle. Nurses of a neurology department are asked to participate. After receiving training by an experienced speech language therapist, nurses are asked to use the intervention during three months. After one and three months after introduction nurses are asked to complete two questionnaires about the usefulness and feasibility of the intervention and about problems and needs concerning the intervention. In addition, two focus group discussions will be organized whereby nurses discuss the practicality, feasibility and added value of the communication intervention. Main results to date A small grant is awarded to conduct the project within the Isala Hospital. A research protocol is already being developed. References Brady MC, Kelly H, Godwin J et al (2016) Speech and language therapy for aphasia following stroke. Cochrane Database of Systematic Reviews, Issue 6. Art. No.: CD000425.

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Lizet van Ewijk PhD Development and assessment of the psychometric properties of the SAQOL-39NL in a stroke population. 2016

Background & research question Instruments to evaluate Health Related Quality of Life (HRQoL) are often unsuitable for stroke patients with aphasia. Recently, a Dutch version of the Stroke and Aphasia Quality Of Life-scale (SAQOL-39NL) was developed. However, its psychometric properties have only been partially assessed. Therefore, the aim of this study is to assess the accessibility, internal consistency and construct validity of the SAQOL-39NL in stroke patients who are following a rehabilitation program. Design/methods The SAQOL-39NL and EQ-5D (a standardized instrument for use as a measure of health outcome) were administered 3 months after the start of the rehabilitation program. Acceptability was explored by assessing floor and ceiling effects and percentage of missing items. For internal consistency, Cronbach’s alpha was calculated. For construct validity, the intercorrelation between domains and total scores, and the association with the EQ-5D were assessed using Pearson’s r. Participants are recruited from the SCORE-study and the TEA-study. The aim of the SCORE study is to understand the rehabilitation process and social participation of patients after stroke. The TEA-study aims to gain more insight into the use of transcranial Direct Current Stimulation (tDCS) in patients with aphasia. Main results to date Participants consisted of stroke patients with (n=59) or without (n=81) aphasia treated in Rijndam Rehabilitation Center, the Rijnlands Rehabilitation Center, or

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Sophia Rehabilitation Center. The mean age of the patients was 60.4 years (SD 11.1), 62% were male. Mean total SAQOL-39NL score was 3.93 (SD 0.68). No missing data, and no floor or ceiling effects were found. Internal consistency was excellent (Cronbach’s alpha = 0.96). Intercorrelation between domains and total scores were good to excellent (r=0.54- 0.88). The association with the EQ5D was moderate (r=0.54). The SAQOL-39NL is an acceptable, valid, and reliable instrument to evaluate the HRQoL in stroke patients. It’s responsiveness after stroke needs to be determined. Discussion For further assessment of psychometric properties a new research proposal will be written. Data collection will be continued. External people involved: I. Groeneveld PhD, P.H. Goossens PhD, T.P.M. Vliet Vlieland PhD, K. Spielmann MSc, M.W.E. van de Sandt-Koenderman PhD, K. Hilari PhD

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RESEARCH GROUP SPEECH AND LANGUAGE THERAPY Evidence Effective Care

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Lizet van Ewijk PhD Logoclicks: an online aphasia therapy program for people with acquired brain injury. 2018

Background & research question Every year, more than 800.000 people suffer from a stroke worldwide. In Western Europe the proportion of the population aged 65+, in which most stroke events occur, will increase from 20% in 2000 to 35% in 2050. An increased number of individuals will survive from a stroke with residual impairments and disability. A stroke has a profound effect on the physical, emotional and social abilities of the affected individual. One of the most devastating effects of stroke is the development of aphasia, a language disorder that affects approximately 30% of stroke survivors. Aphasia severely affects the individual’s ability to communicate, their participation in social activities, and their social support. The Dutch Guideline for Stroke and the recent Guideline for the Diagnosis and Treatment of Aphasia recommend a minimum of two hours of aphasia therapy per week. In fact, research shows that to achieve detectable effects on linguistic skills intensive aphasia therapy of at least five to ten hours each week for a minimum period of 11 weeks is necessary. However, on average, patients in the Netherlands with aphasia after stroke receive less than one hour of therapy per week. Furthermore, speech-language pathologists observe that, once patients leave the rehabilitation centre speech-language therapy often discontinues. The need for alternative ways than face-to-face treatment in a clinical practice to offer older (often less mobile) patients aphasia treatment is evident. eHealth (the use of information and communication technologies (ICT) for health) has the potential to contribute in achieving a continuous and individualized training complementary to conventional therapy. In fact, the use of technology in healthcare in general is strongly advocated by policy makers in the Netherlands,

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in order to be able to anticipate to the increasing cost of healthcare in an aging society. The use of eHealth in aphasia therapy programs is currently very limited. The main challenge lies in the development and support of new, dedicated technologies required. Researchers therefore emphasize the importance of interdisciplinary cooperation in order to boost the use of eHealth in aphasia therapy. Therefore, the aim of this study is to develop an online platform of evidence-based therapy exercises for people with aphasia. Design/methods Phase 1: a prototype of the aphasia therapy program has been developed. However, an evidence-based foundation is lacking. This project will provide the necessary evidence-based framework to construct the therapy program upon. Following an iterative design process the aphasia therapy program prototype will be modified. Phase 2: feasibility and acceptability of the aphasia therapy program will be assessed in a consortium of rehabilitation and aphasia centers. Phase 3: efficacy of the aphasia therapy program will be tested in a randomized controlled trial (RCT). Main results to date No results are available yet.

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RESEARCH GROUP SPEECH AND LANGUAGE THERAPY Evidence Effective Care

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Lizet van Ewijk PhD Development of a picture naming test for Dutch adults 2016

Background & research question A picture-naming task can be useful in identifying naming difficulties. For Dutch adults suspected to have naming difficulties, such as patients with acquired brain injury or neurodegenerative diseases, there is no reliable and valid tool to diagnose naming difficulties properly. The current diagnostic tools are out-dated and not based on the most recent cognitive-linguistic models of word retrieval. Naming is part of a complex cognitive process, which has been described in several cognitive linguistic models. These models vary, but in general picture naming involves four main processing steps: (1) conceptual preparation (preverbal level), (2) lexical selection, (3) word form encoding, and finally (4) articulation (speech output). The picture naming test for Dutch adults will be designed to be able to distinguish word finding difficulties due to impairments in the semantic processing of words (step 2) and/or due to difficulties retrieving phonological information (step 3). The influence of two lexical factors on naming ability will be used to distinguish between word finding difficulties due to semantic problems or phonological problems: age of acquisition (semantic) and frequency of occurrence (mainly phonological). The aim of this study is to develop and validate a naming task that is based on the most recent cognitive linguistic models of word retrieval. Design/methods This study is a psycholinguistic experiment in healthy Dutch adults. Quantitative research methods will be used. Thirty healthy Dutch adult native speakers in two age groups named 99 colored pictures of words with different age of acquisition (AoA; early and late AoA), and word frequencies (high, mid and low). The influence of word frequency and AoA on latency of correctly given answers

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was statistically analysed with a Kruskal Wallis test. In case of significance, pairwise comparisons were conducted using the Mann-Whitney U test. Main results to date Latencies were significantly influenced by AoA and to a lesser extent by word frequencies. Early AoA and high frequency words were named faster than late AoA and low frequency words. Explained variance in latencies in picture naming had the highest value when AoA and word frequency were combined. Furthermore, for all but one word subgroup, young participants named pictures faster than older participants. For two subgroups these differences in latencies were significant. Discussion In developing a valid and reliable picture naming test it is important to (1) include word groups with different combinations of AoA and word frequency, and to (2) take into account a possible influence of age when it comes to standardization.

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RESEARCH GROUP SPEECH AND LANGUAGE THERAPY Evidence Effective Care

Authors: Title: Provisional end date:

Ingrid Singer MA, Inge Klatte MSc ENgaging parents in Goal Articulation and Goal Evaluation (ENGAGE) April 2018

Background & research question Despite of receiving proper language input, language development lags behind in about 10% of all young children (Reep-van den Bergh e.a., 1998). These children are language impaired. Many children with language impairment receive speech and language therapy. Speech Language Therapists (SLT´s) often target their interventions to expand vocabulary or improve sentence production, in order to increase their clients´ communicative functioning. SLT´s have an array of tests available to assess and evaluate children’s structural language skills (the body functions component of ICF). But useable instruments for providing insight in the level of communicative functioning of young children are currently lacking. Available instruments focus on mapping (aspects of) language competence, for example standardized language tests for grammar and vocabulary. In terms of the International Classification of Functioning and Health (ICF), these tests focus on aspects of the impairment. However, the problems that parents and children with language impairment tend to experience are usually voiced in terms of the ICF aspect participation (Law, Roulstone, & Lindsay, 2015). Implementing the ICF model in Speech and Language Therapy implies a shift in focus away from impairments to participation in diagnosis and remediation. An uniform definition of what communicative functioning in young children entails is currently lacking. As a consequence the description of communicative functioning varies between professionals. In order to carry out (often multidisciplinary) assessment, diagnosis and treatment it is pertinent for parents and involved professionals (e.g. SLT´s, child psychologists, (remedial) teachers) to agree on what is understood by communicative functioning. Lack of consensus hinders the interpretation of the parental request for help and the communication on treatment goals between disciplines and between therapist 124


and parent. Children with language impairment can be eligible for extra educational support. A description of the problems in communicative functioning are used to determine whether a child qualifies for extra support. This implicates that the way a child´s communicative functioning is described might have an impact on allocation of resources and on a child´s chances to attain a higher educational level. This also illustrates the need for a uniform definition of communicative functioning. The aim of the present study is to form consensus between parents and professionals involved in the assessment, education and care for young children with language impairment on the construct ‘communicative functioning’. Furthermore a patient specific instrument for setting and evaluating individual functional communication goals together with parents will be developed. Design/methods The study has a mixed methods design. In the first part, a Delphi study will be carried out amongst 35 parents of young children and professionals involved in their care. They will answer three to five online questionnaires focusing on the definition and operationalization of communicative functioning. The first round consists of open questions on communicative functioning and participants will be asked to formulate examples of (problems with) communicative functioning. In consecutive rounds, participants try to reach consensus on the definition of communicative functioning and judge the prototypicality of available examples. In addition 5 language impaired young adults will be interviewed in order to gain their perspective on what communicative functioning entails for young children. In the second part, the actual instrument ENGAGE (ENgaging parents in Goal Articulation and Goal Evaluation) will be developed. Development will take place as a result of co-design process, while the content of the instrument will be based on the outcomes of the Delphi study. Five SLT’s will work together with a researcher from the research group co-design to develop and test an instrument that helps them to articulate and evaluate functional communication goals for children they treat, together with their parents. Each SLT will collect information, test and review prototypes with three parents of a child they actually treat. In the third part, a quantitative study on the measurement properties of ENGAGE will be performed. Using an anchor based method, it will be evaluated when an increase on the score on a functional communication goal can be interpreted as a true and meaningful improvement in communicative functioning. Main results to date The Delphi study is currently being conducted. The first results are expected in November 2016.

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RESEARCH GROUP SPEECH AND LANGUAGE THERAPY Research Priority Area Healthcare and Technology

Author: Title:

Ingrid Singer MA The development of a checklist to assess tablet games on usability in language therapy

Background & research question Speech-language therapists (SLTs) increasingly use tablet games (TGs) in the treatment of children with specific language impairment. They find that using TGs has a positive influence on children’s attention and involvement in therapy. This is an essential requirement for successful therapy aimed at improving communicative functioning. Because most TGs are not specifically developed for language therapy, SLTs need to select usable TGs themselves. The aim of the study was to determine which characteristics make a TG useful for language therapy and to develop a valid and reliable Dutch checklist to assess the usability of TGs for language therapy. Design/methods The study had a mixed methods design. The participants were 41 SLTs working with children and using TGs in language therapy. The checklist was constructed based on qualitative data from two focus groups about characteristics that make TGs useful for language therapy. In the quantitative part of the study, inter-rater reliability was assessed by comparing the assessments of three independent raters of 50 TGs. Construct validity was determined by principal component analysis (PCA). Main results to date The study resulted in a checklist consisting of 26 dichotomous items, based on seven main themes and 21 subthemes emerging from qualitative data. Thirteen items showed poor agreement (Fleiss kappa < .20). After removing these items, the total checklist had a fair inter-rater reliability (ICC 0,392). PCA resulted in a three-factor solution. ‘Suitability for therapy’, ‘attractiveness for the child’, and ‘practical characteristics’ are underlying theoretical constructs of the checklist. 126


Discussion The checklist with 26 items has a good content and face validity. Removal of 13 unreliable items results in undesirable loss of content. Therefore, revision is needed to improve the reliability of 13 items and the validity of the checklist as a whole. The items of the checklist must be reformulated to decrease interpretation differences. The answering scale has to be changed to a Likert scale, in order to gain a more subtle evaluation of characteristics of TGs. Additionally, reliability and validity of the revised scale has to be assessed. This study has provided valuable insight into the characteristics that make a TG suitable for treatment according to SLTs. After item revision and re-assessment of measurement properties, the checklist can be implemented and used by SLTs.

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Research Priority Area Healthcare and Technology

Author: Title:

Janna Bruijning PhD, bachelor studies Eye care (Optometry & Orthoptics) Visual functioning and lifelong participation

Background & research question Eye care bachelor studies (i.e. Optometry and Orthoptics) want to focus more on doing practically oriented research. Therefore, both departments are currently developing a joint research programme to create a body of knowledge. In this research programme, professional lecturers and students will participate in practically oriented research, under supervision of scientific researchers. This will contribute to better professional teachers, more critical students, and improved quality of eye care due to innovation of professional practice. The first step in developing a research programme is determination of the focus of that programme. Subsequently, this focus will be further refined by associated research lines. Next, concrete research projects will be explored. Design/methods The research focus and associated research lines were explored in several brainstorm sessions with lecturers from the department of Eye care with a background in doing research (e.g. PhDs and PhD candidates). The content of the research focus was further discussed and refined with lectors and researchers from the Centre for Innovation in Healthcare to guarantee that the research focus matches the umbrella themes. Main results to date The focus of the research programme ‘Visual functioning and lifelong participation’ can be summarised as follows: The aim is innovation of (health) care by developing knowledge and tools for healthcare professionals to optimise visual functioning and lifelong participation. The starting point is to focus on individual needs and abilities of persons, to 130


stimulate and preserve independence, autonomy and self-management, as well as social and community participation. Moreover, the efficiency and cost effectiveness of care will be taken into account. The research programme is multi-/interdisciplinary oriented and focuses on visual processes in relation to physical, cognitive, social and emotional aspects and the interactions between humans and their environment. There will be special attention for general and instrumental (digital) activities of daily living, visual comfort and safety. The following four research lines have been formulated to make this more explicit: 1) Prevention (precaution, self-management, community care) 2) Multiple (complex) care 3) Optimising visual functioning during complex tasks and/or for people with sub-normal vision 4) Optimising patient-centred eye care Discussion The development of this research programme is an on-going process. Next step will be to explore possible research projects. As practically oriented research must be demand-driven, the professional practice will be involved in this process. Moreover, the research programme will be further integrated in the educational structure, so that lecturers and students will be more involved in practically oriented research. This will create a better connection of all parts of the triangle education, research and professional practice.

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Babette Everaars, junior researcher Katarina Jerkovic PhD, senior lecturer Dental Hygiene The role of oral health in the assessment and prediction of frailty in community dwelling older people 2019

Background & Research question Frailty is a state where health, wellbeing, independency and survival are at risk. In many community dwelling older people, multimorbidity, polypharmacy and a reduced capacity for self-management of health and wellbeing could lead to a care consumption gap and subsequently results in frailty. Moreover, the association between oral diseases and general health becomes more clear. For example, periodontitis is associated with cardiovascular diseases, pneumonia and diabetes. As older people retain their natural teeth for longer, complex situations (e.g. implants, crowns, bridges) may hamper oral selfcare and may lead to complication in oral-and general health. Poor oral health can also impact wellbeing and quality of life and may cause loss of chewing function and may result in malnutrition, which may contribute to an increased risk of frailty. Therefore, oral health needs more attention in the development of accurate frailty screening instruments which are currently being implemented in first line of care in The Netherlands. Efficient and proper frailty screening of community dwelling elderly will advance the allocation of sparse health care resources and reduce care inefficiencies in terms of protecting against over- and under-treatment. Therefore, this research project complements an existing nurse-led multicomponent personalized care and risk identification program (OM U) (Bleijenberg et al., (2013). The aim is to verify the precision in risk prediction and to improve its’ predictive performance and investigate the added value of oral health information in the prediction of frailty. Design/methods In the proposed prognostic study, two year longitudinal prospective data will be gathered regarding the composite endpoint of frailty (death, admission to a 132


hospital/nursing home or an out of office hours call for emergency). All eligible 1.844 community dwelling older people (60+) who are registered in the primary health care center in the municipality Maarn-Maarsbergen, will be enrolled. The existing frailty screening instrument in OM U, based on an automated procedure to identify potentially frail older people via exploration in electronic GP patients’ records, will be combined with information from dental patients’ records. The second step in OM U consists of a frailty assessment, using the Groningen Frailty Index which will be complemented with two questions about oral health. Moreover, oral examination will be performed to verify the previous steps in potential frail oral health status. Main results to date The research project is currently in its’ data gathering phase. A previous study on the ‘’Probing problems and priorities in oral health among community dwelling elderly in The Netherlands’’ has been published in the International Journal of Health Sciences and Research. The same study is also presented at The 13th conference of Gerontology, The Conference of European College of Gerodontology and the 20th International symposium of dental hygiene.

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Authors: Title:

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Peggy van Spreuwel, MSc. Katarina Jerkovic PhD “Gezonde Peutermonden�: Toddler Oral Health Project – Oral health coach imbedded in youth health chain 2019

Background & Research question The past 25 years oral health of Dutch children has not improved. 41% of 5-year olds have dental caries (tooth decay) and most caries is found in children with low socio-economic status (SES). Approximately 10% of children under five suffer from severe dental caries involving pain, inflammation and abscesses which may affect daily functioning. This can result in diet changes, learning disabilities, school absences, speech disorders due to premature tooth loss, damage to permanent teeth, problems with socialization and diminished quality of life of both child and parents. Moreover, caries in primary dentition is a strong predictor of caries in permanent teeth. Children visit oral health professionals too late. With a visit allegiance of almost 95% well-baby clinics could be the ideal body for reaching parents with young children timely. A successful example of oral health care being integrated in youth general health care is the Scottish Childsmile program. Within this program an oral healthcare professional is posted at well-baby clinics to refer timely to oral health care professionals, advice on oral care and offers an alternative program for children who do not visit an oral health care professional. A program like this Scottish example could be easily integrated in youth health chain in the Netherlands. Combined with a non-operative caries treatment and prevention (NOCTP) method, which has been proven to be (cost)effective in Dutch schoolchildren recently, this program could insure all preschool children of optimal preventive oral health care.

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Research question Can implementation of an Oral Health Coach at well-baby, clinics operating according to a NOCTP method, lead to better and cost-effective oral health care in preschool children and change of oral health behavior in their parents? Methods A randomized controlled trial with blinded outcome measures will be conducted. For children in preschool age (up to 4 years) the effect of the NOCTP method offered at well-baby clinics by an oral health coach will be evaluated and compared to usual care. All children who visit selected well-baby clinics at time of first tooth eruption (age 6 (Âą3)months) will be asked to participate in the study. Through randomized blinded allocation, two groups will emerge (intervention and control group). (Cost)effectiveness will be assessed for both groups based on clinical examinations, oral health behavior and determinants at age 24 and 39 months. Process evaluations will be documented during implementation and combined with semi-structured interviews among parents and (oral)health care professionals to create a good overview of barriers and facilitators for this intervention. Subsequently focus group discussions will be organized with managers, policymakers and insurers to address possible implementation strategies. Main results to date No results are available yet. Proposed start date for the study is April 2017. Approximately 20 students have participated in related project last two years. Few examples of student projects are, qualitative research among parents and oral health professionals about NOCTP method; willingness to invest in oral health of preschool children among parents; pilot testing questionnaires and a systematic review about effectiveness of early preventive oral health interventions. 135


INDEX Beers, M. 112 Bleijenberg , N. 18 Bloemen, M. 62 Boonzaaijer, M. 74, 78 Bruijning, J. 130 Bruinsma, G. 114 Cate, D. ten 10 Dijk, M. van 22 Dijkstra, N. 32 Dikken, J. 28 Elbers, S. 86 Ende-Kastelijn, K. van der 64 Ensing, R. 98 Ettema, R. 12, 14 Everaars , B. 132 Ewijk, L. van 116, 122 Groot, J. de 60 Hafsteinsdรณttir, T. 26 Heneweer, H. 88 Houwelingen, T. van 48 Huisman, E. 44 Klatte, I. 124 Korpershoek, Y. 24 Jerkovic, K. 132, 134 Lalleman, P. 30 Lankhorst, K. 64, 66 Luijten, M. 42 Maren-Suir, I. van 74, 76, 80 Meulendijks, A. 104 Molewijk, E. 100 Mueller-Schotte, S. 16 Nijmolen, P. 82 Nuysink, J. 70, 76 Oosterhaven, J. 54 Outermans, J. 56 Pon, E. du 102 Pool, J. 84 Reinten, J. 46 Singer, I. 124, 126 Sinoo, M. 38 Smit, L. 20 Sol, M. 68 136

Spreuwel, P. van Steunenberg, B. Tilborg, M. van Vehof, H. Vries, F. de Welbie, M.

134 94 40 96 106 58


www.research.hu.nl kenniscentrumivz@hu.nl


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