Dutch Best Practice Guidelines, based on chronic care model. Pathways Vol 9, No 1. Winter 2019-20.

Dutch best practice lymphedema guidelines

Based on the chronic care model

Accounting for the patient and their challenges in treatment

By Robert J Damstra

Lymphedema is not a diagnosis but a clinical feature and considered a chronic condition. Proper diagnosis including patient health profiling according to the bio-psychosocial model (International Classification of Functioning, Disability and Health (ICF)) and a dedicated treatment program following the chronic care model, are essential for a rational, effective and efficient approach for all patients (See page 6: Editors Note).

Lymphedema care differs from how patients with another chronic illness such diabetes mellitus are treated. Diabetic patients, as an example, are taught to measure their own blood glucose levels and to adjust the insulin dosage accordingly, to stay active and manage their weight. When there are no complications, patients in the maintenance phase can manage themselves and just visit the diabetes nurse or doctor occasionally.

Patients with lymphedema, however, may for many years receive mono-disciplinary treatments from different healthcare providers and lack a network of care. Many patients are unaware whether they are in the initial or maintenance phase of treatment and often lack skills to be independent of their therapist and perform self-management.

The Dutch guidelines for lymphedema1 are based on new concepts of care for

diagnosis and provides tools for a modern approach regarding a chronic condition.

International Classification of Functioning, Disability and Health (ICF)

The ICF is a bio-psycho-social model, which recognizes several domains for measuring and documenting functioning and disability, and offers a more holistic approach toward a patient. The original framework provides a universal language to assess a person’s functioning and disability and facilitates international quantifiable comparisons of

FIGURE 1

disability-related data. In the Dutch guidelines we focus more on the qualitative aspects of ICF, regarding interaction among the domains of body function, body structure, activity, and participation. These are subsequently related to contextual factors as environmental and individual factors2 (Figure 1 below).

The functioning and quality of life of patients with a chronic condition have been shown to improve when the ICF model is used. Working with the ICF, healthcare providers need to communicate in more interdisciplinary fashion and empower the patient in their

Health Condition

ParticipationActivities Body structures and Functions

Personal factors

Environmental factors

The interaction between the different aspects of state of health and external and personal factors3.World Health Organization, International Classification of Functioning, Disability and Health: ICF. 2001, Geneva: WHO.

Robert J. Damstra, MD, PhD works as a dermatologist at the Nij Smellinghe Hospital Drachten (Netherlands) in a team with six dermatologists, two surgeons and many paramedical specialists. In 2009 he obtained his PhD with the thesis “Diagnostic and therapeutical aspects of lymphedema” at Maastricht University. In 2005 he founded the Dutch Expert Centre for Lympho-vascular diseases (ECL), which now includes an outpatient clinic with thousands of patients and an in-patient unit for 12 patients that provides interdisciplinary diagnostics, operative and conservative treatments. He was chair of the first (2003) and second (2014) Dutch lymphedema guidelines working group. The third guidelines are planned for 2023. The ECL is a member of the European Reference Network (ERN) in the VASERN-group (www.vascern.eu), via which expert centres all over Europe collaborate to enhance cross-border healthcare, improve quality of care, provide information for patients in Europe and encourage multicentre research

Professionalcare

70-80% of people with a chronic condition

the philosophy of the government regarding chronic care8. The new guidelines embrace the functional, patient-centered approach (ICF), focusing on early diagnosis and a comprehensive follow-up with tailored treatment and support. The use of validated measuring instruments in all domains is strongly advised. In particular, the main influenceable risk factors for lymphedema, weight and physical activity, need to be systematically measured. Literature on therapeutic management was assessed for meaningfulness, effectiveness and efficiency. A table was created on the options in the various treatment phases (See Table 1 on page 8).

Currently, the cost of all lymphedema diagnosis and treatment, including garments, are reimbursed in the Netherlands.

treatment program, in all domains. That is different than offering lifelong regular handson treatment by a therapist.

Chronic Care Model

In acute care, the focus is on healing and the scope is short-term or severe illness of brief duration. The Chronic Care Model (CCM) centers on preexisting or long-term illness with a focus on quality of life for the patient, and more independence from a therapist.

In the Dutch guidelines we focus more on the qualitative aspects of ICF, regarding interaction among the domains of body function, body structure, activity, and participation.

of health care dollars spent in the United States, with approximately 125 million (45%) of the population faced with some type of chronic disease5

In the CCM an active patient participates in his or her treatment, is empowered and self-effective. The therapist is more “hands-off”, offering a supportive approach and working within a network of care to share data, and use validated clinimetrics according to guidelines. The patient is the center of the care process. Care is organized according to a pyramid in a network of care; expert-centered and highly complex care is provided in small volume at the top and, when possible, most of the care is provided by a caregiver at a more regional/home base location together with the patient6. This approach has been shown to be effective in several other conditions such as diabetes7 and in the lymphedema guidelines in the Netherlands.

The guidelines also fit into a new definition of health, based on the concept of positive health by Machteld Huber 9. She redefined health from an absence of disease towards an active model in which the patient adapts and self-manages with a chronic condition, focusing on mental, social and physical health and increasing resilience.

What does this mean for daily practice?

The new approach in the Dutch guidelines on lymphedema is challenging; requiring both traditional and new skills from healthcare providers working more in a network. Prevention

The model was initially proposed by Wagner4 in 1988 in response to the acknowledgement by health plans and provider groups that the care of patients with chronic illness required improvement. Evidence has shown that “usual care” is not effective for chronic condition management; sizable numbers of chronically ill patients are not receiving effective therapy, have poor disease control, and are unhappy with their care. Chronic medical care accounts for more than 75%

The Dutch guidelines for lymphedema

In 2013, a working group was established, representing many professional organizations involved in lymphedema management (including dermatology, surgical oncology, radiology, psychology, physical therapy, dietetics, skin therapy), representatives from the Ministry of Health, insurance companies, and patient societies. The guidelines were based on scientific evidence, written to be cost-effective wherever possible and to include

Editor’s Note:

Multiple systems exist for disease classification. The most commonly used International Classification of Disease or ICD (developed through the World Health Organization) codes for lymphedema are ICD9 and ICD10. Whether these codes are billable depends on the health system. Further details on classifications can be found at www.lymphedemapathways.ca

The Kaiser Permanente pyramid as the model for chronic care within a network of care

Self-care

Great share of self-care

Equal distribution of healthcare

Great share of professional healthcare

Complex cases with comorbidity

High risk cases

Photo: Institute for Positive Health (iph.nl).

after breast cancer treatment for example, is stressed with early documentation of weight, activity and volume. Consequently, patients who are used to a more traditional, long-term hands-on treatment program sometimes find it difficult to make the transition. The therapist needs to facilitate the process towards more independence.

From a therapeutic point of view, the guidelines make a stricter division between the prevention, initial and maintenance treatment phases. For this last phase, for example, Manual Lymph Drainage (MLD) is not indicated and the focus is on compression garments, exercise, weight monitoring and self- management. In general, the effectiveness of MLD has been under discussion for a long time. A recent study by Tambour et al10 showed no additional effect of MLD to an integrated breast cancer lymphedema program.

MLD as a hands-on modality doesn’t fit well into the new more hands-off treatment models.” In the Dutch guidelines it may be indi cated to use MLD only during the first 6-12 weeks

options during initial and maintenance treatment phases according to the Dutch guidelines.

of the initial treatment phase and no longer.

Our patients feel more satisfied, because they can more easily leave the cancer phase and the events that caused the lymphedema behind them and focus on a new life. They bet ter understand how to manage their lives and to cope with lymphedema, which does not rule their life but rather is a part of it and well-con trolled. Mostly, patients visit the healthcare provider for biannual measurements of quality of life (e.g. ICF QoL11,12) weight, activity and

volume. Furthermore, advice is given according to the outcome of the measurements and new, tailor-made flat knit garments are provided.

Using this newer approach, patients feel more confident because they know what they have and what they can do to experience an adequate quality of life. They are monitored twice a year if possible and, in case of a setback, they know where to find their therapist/healthcare provider for a short, new initial treatment phase. Consequently,

in the maintenance phase they are indepen dent, self-effective and forward-looking. For this new approach, the education of healthcare providers needs to be modified towards more integrated care, risk stratification, training on influencing behavioral change in the patient (e.g. motivational interviewing) and new tech niques more suitable for self-management. LP

A full set of references can be found at www.lymphedemapathways.ca

The new guidelines embrace the functional, patient-centered approach (ICF), focusing on early diagnosis and a comprehensive follow-up with tailored treatment and support.