2023 National Lymphedema Conference Abstracts Booklet

2023 NATIONAL

LYMPHEDEMA CONFERENCE Moving Forward Together

NOVEMBER 3-4 TORONTO, ON

Abstracts BOOKLET

Experience of lymphedema and fatigue in breast cancer survivors diagnosed with Covid-19 Elizabeth Anderson, BSN MS(N) PhD

Context

Lymphedema and fatigue are common co-morbidities associated with breast cancer treatment.

Studies have also shown the negative physical, psychosocial, and health system outcomes resulting from the COVID-19 pandemic.

Objectives

Explore associations among COVID-19 and co-morbidities of lymphedema and fatigue in breast cancer survivors using the Cerner Real-World dataset.

Design

Contrast-set mining was applied to identify patterns of demographic and clinical variables, including COVID-19 diagnosis, which were associated with lymphedema and fatigue diagnoses. Patterns of demographic and clinical variables were identified which were significantly more frequent in patients who received a lymphedema or fatigue diagnosis. Patterns were filtered to remove patterns not clinically meaningful for studying the effect of COVID-19 on breast cancer survivors.

Setting

Cerner Real-World dataset from April 2020 to March 2022

Participants

Patient cohort contained patients diagnosed with breast cancer and non-breast cancer patients.

Patients diagnosed with fatigue and lymphedema were separately compared with patients who did not receive diagnoses for each condition.

Results

Among breast cancer survivors, COVID-19 diagnosis was associated with an increased risk of being diagnosed with both lymphedema and fatigue (p < 0.0001). Breast cancer survivors with COVID-19 were 3.2 more likely to experience lymphedema and 3.7 times more likely to experience fatigue compared to patients without diagnoses for breast cancer and COVID-19.

Conclusion

Identifying significant associations among breast cancer, COVID-19, and lymphedema and fatigue may contribute to development of more advanced screening and surveillance guidelines among cancer populations, as well as improved quality of life for cancer survivors. Novel application of contrast-set mining techniques in large electronic health databases has the potential to expand knowledge of lymphedema occurrence, leading to enhanced assessment and management. This knowledge may increase efficiency of resource allocation in future pandemics and during eras of health system constraints.

Elizabeth Anderson, BSN MS(N) PhD Assistant Professor at the MU Sinclair School of Nursing.

Independent prospective follow-up of lymphedema patients who have undergone lymphatic surgeries Marie-Ève Letellier, PhD

Context

Physiological interventions, such as lymphovenous anastomoses (LVA) and vascularised lymph nodes transfer (VLNT), are receiving growing attention. There are an increasing number of surgeons trained in lymphatic surgeries, some of whom may be reporting their outcomes using ambiguous or unclear measurement methods pre/post-operatively. As a LE&RN Lymphedema Center of Excellence, we have been independently following patients who have undergone lymphatic surgeries since 2018 with standardized measurements and volume calculation to objectively assess surgical outcomes over time.

Aims of study

The aims of the study are to estimate the extent to which, among patients undergoing lymphatic surgery, there is a post-operative change over time in 1) limb volume, 2) use of compression, and 3) frequency of cellulitis episodes.

Methods

This is an ongoing study. Patients who have undergone LVA or VLNT are followed prospectively.

Circumference measurements are taken of bilateral extremities pre-surgery and approximately every three months post-operatively for at least two years. Percentage edema volume are calculated for each affected and unaffected limb, including limb segment differences. Use of compression (e.g. day compression, night, alternative) are also recorded, along with recording the number of cellulitis episodes at each visit. Clinical assessments, circumference measurements and volume calculation are conducted by an interdisciplinary team (physician and lymphedema therapists). We also collect qualitative data from patients regarding perceived outcomes.

Results

To date, nine women have been independently followed: 7 with breast cancer-related lymphedema (BCRL), 1 with bilateral primary lower limb lymphedema (LLL) and 1 with bilateral cervical cancerrelated LLL. Of the 7 BCRL, 3 had LVA surgery and 4 VLNT. Arm volume measurement increased for 5 women, while a decrease was observed for 2 women. The 2 LLL had LVA procedure: 1 presented with fluctuation in volume over time while the other decreased. Regarding compression, 6 women continued with compression usage, while 3 stopped, despite volume increase. One episode of cellulitis was recorded post surgery in 3 women.

Conclusion

As lymphedema has historically been defined as a chronic condition requiring lifelong care, our results emphasize the benefits and need for longitudinal follow-up in those who have undergone lymphedema surgeries. It is critical to objectively evaluate post-surgical outcomes of lymphedema, addressing both acute and long-term potential effects. The need for compression garment may also need to be reevaluated post-surgery as many still require usage, despite the surgical intervention. Longitudinal follow-up with this clientele is essential to better understand the impact of lymphedema surgeries on the lymphatic and venous systems.

Marie-Ève Letellier, PhD Kinesiologist, CDT Lymphedema Therapist, Kinesiology/Lymphedema Clinic, McGill University Health Centre, Montreal

Management of lymphedema related to head and neck cancer Marize Ibrahim, PT CLT-LANA

Intro

Head and neck (H&N) cancer treatments may have significant acute and/or late side effects that could be physically, functionally, and psychologically debilitating. Head and neck lymphedema (HNL) is a commonly neglected side effect that remain underdiagnosed and understudied. HNL could manifest externally, internally, or both, and could affect as much as 97% of the patients. HNL may profoundly impact vital physical functions (e.g., breathing, swallowing, and eating). Other cancer related lymphedema is well addressed with compression therapy. However, current data surrounding the use of H&N night compression and its effect on lymphedema management is sparse.

Aims of study

To estimate the extent to which the use of compression therapy is helpful in the management of in HNL.

Methods

Retrospective analysis of H&N patients seen at the MUHC Lymphedema Clinic between January 2016 to May 2023. At each time-point, an inventory questionnaire was used to assess symptoms and functional restrictions. In addition, lymphedema was assessed using neck circumferences, facial composites and tragus to tragus measurements. Management of HNL using compression garment, along with body weight (body mass index - BMI) were recorded and compared over time.

Results

A total of 153 H&N patients were registered in the institutional database: 108 male (71%) and 45 female (29%), with a mean age of 66 years and mean BMI of 26.2. Due to data missing completely at random, only 108 patients present with at least two time points for follow-up. Of those, 44 patients (41%) were identified as having a compression garment at one point during their follow-up, and only 18 patients continue to wear it in the long-term. Over the period of 12 to 24 months, most of the patients (67%) showed a reduction in all collected measures, with the majority not wearing or using any compression garment.

Conclusion

Our preliminary analysis and observations suggest that, compared to upper and lower limb lymphedema, patients with HNL tend to be at their worst initially and tend to significantly improve over time. To date, little has been recorded on objectively measuring and recording long-term follow-up for HNL while comparing whether there was compression usage or not. Our analysis indicated that the majority of patients showed a reduction in their HNL despite not using compression garments. Future research is warranted to establish if interventions other than compression therapy play a role in favorable HNL outcomes, such as H&N exercises and/or self-massage.

Marize Ibrahim, PT CLT-LANA Cancer Rehabilitation Course Co-Coordinator at McGill University, Montral,

Evaluating radiotherapy-induced circulating cytokine levels as predictors of lymphedema risk Jennifer Kwan, MD PhD

Background

About one in five breast cancer survivors experience lymphedema as a complication of cancer treatment. Patient, cancer, and treatment-related factors contribute to the risk of its development.

Circulating inflammatory cytokines are not currently used in routine clinical practice for prognostication and their role in predicting lymphedema risk remains unclear.

Methods

The study population comprised of a subgroup of breast cancer survivors who participated in a radiotherapy cytokine study from 2010-14. Lymphedema-associated cytokines of interest included IL4, -6, -17 and TGF-β1. Clinical and integrative risk models were developed to predict the occurrence of lymphedema. The established clinical risk model included age, body mass index, breast density, pathological lymph node burden, and axillary lymph node dissection. Recursive partitioning analysis (RPA) was implemented to develop an integrative model incorporating essential inflammatory cytokine prognostic biomarkers. The discriminative performances of the clinical and integrative risk models were compared using the concordance index (C-index).

Results

There were 88 breast cancer survivors who were eligible for the analysis. A total of 10 lymphedema events (11%) occurred within the median follow-up time of 4.9 years [IQR 2.8-8.0]. Using RPA, the change in circulating IL-4 levels post-radiotherapy was a novel prognostic factor for lymphedema risk, which improved the C-index from 0.73 (clinical model) to 0.92 (integrative model, p=0.019).

Conclusion

An integrative risk model incorporating circulating cytokine levels resulted in improved prognostication of lymphedema risk and may be useful for triaging patients for earlier management and/or future clinical trials.

Jennifer Kwan, MD PhD Staff Radiation Oncologist - Clinician Scientist and an Assistant Professor in the Department of Radiation Oncology, Temerty Faculty of Medicine, University of Toronto (UTDRO)

Improving lymphedema care: Advantages of a lymphedema database Georgina Cama Lee, BSIE MBA MEng QSE

Introduction

Effective diagnosis, assessment, and management of lymphedema should rely on evidence-based clinical practice guidelines. Management of the condition has evolved rapidly over the past two decades. Many different approaches or techniques have emerged, aiming to help patients self-manage their lymphedema and improve their quality of life.

As lymphedema is a chronic disease, longitudinal studies are needed to properly evaluate these approaches or techniques. This means that it is helpful if clinicians can collect electronic, searchable data over time.

In 2016, we created a database in Microsoft Access at the McGill University Health Centre (MUHC) Lymphedema Program, to save specific, lymphedema-related information.

Aims of presentation

The goal of this presentation is to show how an electronic database can help health providers improve the lymphedema services they provide, and at the same time serve as a source of data for straightforward clinical studies.

Results

Between 2016-2023, over 2000 patients were followed at the MUHC clinic and data was entered in an evolving, modifiable database. Ages vary from 14 to 97 years; 22% males, 78% females; 46% upper limb lymphedema, 46% lower limb lymphedema, 8% head and neck.

Examples of studies, conference presentations using database information: Clinical use of DXA measurements in lymphedema assessment and treatment. (2017) Is left-sided lower limb lymphedema more prevalent than right-sided lymphedema?, Findings from a lymphedema clinical database review (2017) What are the triggers for lymphedema development? (2019) Quality of life of lymphedema patients: what affects it most? (2021) Is compression effective in head and neck lymphedema? (2021, 2023) Independent retrospective review of lymphedema patients who have undergone lymphatic surgeries (2023)

Conclusion

A lymphedema electronic database facilitates the organization of searchable and usable clinical data over time. This provides an overview of lymphedema evolution and allows longitudinal retrospective studies.

Georgina Cama Lee, BSIE MBA MEng QSE Breast cancer and lymphedema patient since 2012, Volunteer at the MUHC Lymphedema Clinic

Establishment of a Biobank of secondary lymphedema patients at the University of Alberta: Success and challenges Nirav Patel, MBBS MD (Community Medicine) MPH

Context

There are an estimated one million Canadians. The factors that contribute to the development of lymphedema are poorly understood. A biobank established specifically for secondary lymphedema patients to collect and store biological samples for the understanding, diagnosis, and treatment of lymphedema is needed.

Objective

Collect and store biological samples from secondary lymphedema patients such as plasma, serum, and peripheral blood mononuclear cells for research.

Design

Study participants with secondary lymphedema will be consented to donate the blood sample and have access to their medical records. We will measure the lymphedematous and normal limbs and collect clinical information from the health information management system: Connect Care.

Setting

3 locations: the rehabilitation clinic at Cross Cancer Institute, Misericordia Hospital, and Corbat Hall Physical Therapy Clinic.

Study Participants

Secondary lymphedema patients with a history of injury, or cancer with surgery, radiotherapy, and/or chemotherapy.

Results

The first participant was enrolled in October-2022. Currently, we have enrolled 33 study participants with 30 female participants (90.9%). The median and mean age of females is 63.5 and 62.10(±15.02), respectively. We had only three male study participants with a median age of 57 and a mean age of 59.33(±17.62). Most of the patients have breast cancer-related lymphedema (75%). We have also collected blood samples from 5 patients before and after compression therapy.

Conclusions

Since the start of the biobank, we have collected 33 biological samples from secondary lymphedema patients at three different sites. There is a significant bias for breast cancer-related lymphedema patients being consented. Nevertheless, we are the largest secondary lymphedema biobank in Canada to the best of your knowledge. This shows how difficult it is to get lymphedema patients from hospitals due to the underdiagnosis, no lymphedema-specific clinics, and lack of awareness. There needs to be a lymphedema registry to address these challenges.

Nirav Patel, MBBS MD (Community Medicine) MPH Clinical Research Coordinator in the department of Oncology at the University of Alberta

Enhancing Cancer Associated Lymphedema Care at the Princess Margaret Cancer Centre (PMCC) Through Improved Cellulitis Management, a Quality Improvement Project Patricia Blinn, MScOT OT Reg.(Ont.) CDT

Context

Cellulitis is a bacterial infection of the skin that, if left untreated, may lead to sepsis or death.

Lymphedema patients may have a 20 - 37% lifetime risk of cellulitis. Hospitalizations from cellulitis cost the healthcare system, decrease patient quality of life, and are often preventable. Conservative lymphedema management and early risk education can reduce cellulitis occurrence and are currently delivered by occupational therapists (OTs) and physiotherapists (PTs) in lymphedema care at the Princess Margaret Cancer Centre (PMCC). However, cellulitis is a complex topic, and there is an opportunity to enhance OT/PT confidence in this area through evidence-based training.

Objective

Increase OT and PT confidence in cellulitis prevention and management by 25% by April, 2023.

Design

A Plan, Do, Study, Act (PDSA) approach was employed. A needs assessment was conducted to determine cellulitis management best practice through a review of the literature and protocols. Experts in cellulitis were interviewed (n=12), including infectious disease specialists and wound care nurses. A focus group was conducted to better understand the root causes of lower staff confidence, and anonymous open-ended surveys were administered to uncover staff learning needs regarding cellulitis.

Based on the needs assessment, a 45-minute staff training was developed and administered to all eligible staff. An adapted healthcare staff confidence measure specific to cellulitis was administered prior and immediately after the training.

Results

Staff confidence increased from 57.5% (n=10, SD=7) to 86.1% (n=8, SD=3) by April 2023 (28.6% increase).

Conclusion

Without formal training, PMCC OTs and PTs did not have high confidence in cellulitis. A targeted intervention improved overall staff confidence. OTs and PTs are well positioned to assist with cellulitis prevention and management, as it is within their scope of practice to teach evidence-based strategies for risk reduction and conservative management, and they may see patients more frequently than their doctors.

Patricia Blinn, MScOT OT Reg.(Ont.) CDT Occupational therapist at the Cancer Rehabilitation and Survivorship program at the Princess Margaret Cancer Centre in Toronto

The Impact of Lymphatic Venous Anastomosis as a Treatment for Upper and Lower Limb Lymphedema: A Qualitative Interim Analysis Catharine Bowman

Context

Lymphedema is a chronic lymphatic disease affecting one million Canadians. Despite its prevalence, patients continue to rely upon burdensome physical therapies to alleviate symptoms. Lymphatic venous anastomosis (LVA) has shown promise in addressing this symptom burden and the infection risk associated with lymphedema. The purpose of this study is to evaluate impact of LVA on limb volume, quality of life, and lymphedema symptomology in a Canadian patient cohort.

Design

This study implemented a mixed-methods prospective cohort design. Adults with stage I-II lymphedema receiving LVA at the University Health Network from January 2020 onwards were included. Limb volume was assessed using circumferential measurements pre-operatively and six weeks post-operatively. Self-report lymphedema symptom and quality of life questionnaires, and qualitative semi-structured interviews were undertaken at both time points. Interview topics included: Quality of life, physical and psychosocial well-being, lymphedema treatment and the impact of LVA, if any, on these factors. Inductive thematic analysis was used for qualitative analysis.

Results

Data collection has been initiated in fifteen participants and ten received LVA. The mean age of participants was 53.5±9.3 years, and the mean BMI was 28±5.9. Participants had equal proportions of upper- and lower-extremity lymphedema, and 38.5% had a history of cellulitis. The following themes were identified within pre-operative interviews: Functional and physical impact, changes to appearance, mood and coping with chronic illness, cancer survivorship, interpersonal interaction, COVID-19, and treatment impact. Post-operative themes included: Functional and symptom improvements, emotional well-being, treatment changes and challenges, social attention, LVA decision-making and hopes for the future. To preserve statistical power, an interim analysis of quantitative outcomes was not conducted.

Conclusions

The qualitative findings of this study demonstrate a positive impact of LVA on quality of life, physical and psychosocial well-being. Further data collection and triangulation with quantitative outcomes will be undertaken to develop a novel model of surgical lymphedema care.

Catharine Bowman Graduate student in the Department of Epidemiology and Population Health at Stanford University and MD Student at the University of Calgary

A Core Outcome Set for Breast Cancer-Related Lymphedema: A Delphi Consensus Study Elizabeth Anderson, BSN MS(N) PhD

Context

There are approximately 92 outcome measures that certified lymphedema therapists may use to treat breast cancer survivors diagnosed with breast cancer-related lymphedema (BCRL). A core outcome set might diminish selective reporting on conditions, clinical documentation inconsistencies, and variability of reporting across interdisciplinary medical fields.

Objectives

Develop a consensus-based core outcome set and identify consensus-based outcome measure instruments in a core outcome set for BCRL.

Design

Ongoing two-phase Delphi study includes two waves of electronic surveys. Phase 1, wave 1 recruitment was launched with purposive sampling to enroll 30-60 experts in BCRL management and research. Phase 2, wave 2 recruited Lymphology Association of North America (LANA) members.

Consensus was defined a priori as a minimum of 70% agreement for all domains and subdomains.

Participants

Certified U.S. lymphedema therapists with more than 5 years clinical experience.

Results

Waves 1 and 2 surveys are currently undergoing analysis. Survey participant demographics included: Massage Therapist (n = 1, 2.6%), Occupational Therapist (n = 8, 20.5%), Physical Therapist (n = 14, 35.9%), Physical Therapist Assistant (n = 2, 5.1%), Physician (n = 8, 20.5%), and Registered Nurse (n = 1, 2.6%). A majority reported a Clinical Doctorate degree (n = 14, 36%), followed by Master’s (n = 8, 21%), Bachelors (n = 7, 18%), and other Academic degrees (n = 5, 12.8%). Respondents worked a mean of 25.2 years (range = 5 - 47 years). Years as a CLT (n = 29, 74%) averaged 15.7 years. LANAcredentialed therapists was 61% (n = 23). Years of experience with BCRL ranged from 10 to 22 years.

Conclusions

Data are currently under analysis with results for both waves of the Phase-1 survey. We anticipate study findings will support identification of a core outcome set of measures to increase consistency of clinical care documentation and lymphedema research efforts.

Elizabeth Anderson, BSN MS(N) PhD Assistant Professor at the MU Sinclair School of Nursing.

POSTER ABSTRACTS

Heterogeneity of Lymphedema Clinical Scoring Systems Sara Sheikh-Oleslami, PhD Thesis

Comorbidities in a Lymphedema Population Receiving Suboxone or Methadone Treatment Sondra Willis, OTR/L CLT-LANA

A core outcome set for breast cancer-related lymphedema: A Delphi consensus study Cathy Burrows, MScCH Clinical Advisor - Wound Care Canada

Heterogeneity of Lymphedema Clinical Scoring Systems Amanda Sobey, CPT NCCPT ISSA Certified Nutritionist

Comorbidities in a Lymphedema Population Receiving Suboxone or Methadone Treatment Joseph Harfouche, DPhysio, CEO Just A New Health

Health and Wellness Coaching: An Important, Powerful Component of Lymphedema and Lipedema Care Marti Klein, NBC-HWC