CHAPTER 48 Establishment of a Lymphedema Framework
The objectives of the International Lymphoedema Framework charity are as follows:
To raise the national and international profile of lymphedema
To make lymphedema and its management priorities on the national health care agenda
To enable clinicians to lobby for the appropriate financing and reimbursement of lymphedema care
To address issues of inequity of provision of care
To implement and evaluate lymphedema services based on best practice
To create an international lymphedema community that collectively strives to improve the evidence base for treatment and professional practice
To improve the lives of patients with lymphedema and their families worldwide
The International Lymphoedema Framework (ILF) was established in 2009 as a United Kingdom charity. Its goal is to improve the management of lymphedema and related disorders worldwide by sharing expertise and resources and supporting the efforts in individual countries to develop a long-term strategy for lymphedema.
The ILF began in the United Kingdom when it was recognized that a new approach was needed to collectively engage stakeholders to improve access to care and the standard of care for patients who had lymphedema or were at risk of developing the disease.
Despite recent research indicating that the condition is common, affecting 4 per 1000 of the general population and nearly 30 per 1000 in the very elderly, 1 there is little guidance or dedicated care provision except in sporadic services. This situation is mirrored in many other parts of the world. One of the difficulties is in the description of lymphedema, which has historically referred only to those patients with edema caused by lymphatic failure. There is a growing appreciation that the term chronic edema is more inclusive, because it encompasses those patients with conditions such as venous disease, long-term disability, and systemic causes of edema. 1 In all these situations, edema may become an overwhelming sign, and consequently the lymphatic circulation will be overwhelmed and ultimately fail. The aging population, reduced mobility of many older persons, and obesity epidemic are linked to a projected increase in the number of people with the condition.
In many parts of the world, such as India 2 and Africa, 3 lymphedema is predominantly caused by lymphatic filariasis in mosquitoendemic areas. 4 Improvements in drugs to stop the transmission of the disease have led to the expectation that the condition will eventually be eradicated. 5 However, many patients have significant morbidity, and many have other forms of lymphedema.
Despite all the available information, there are still doubts about the true incidence and prevalence of lymphedema, specifically and generally. An international epidemiology study based on an electronic platform is currently running through the ILF to address this lack of robust epidemiology. It uses a common methodology to assess the size and impact of the condition in both developed and developing countries.
In 2014 the methodology was developed and validated through three projects running concurrently in the United Kingdom, Denmark, and Japan. Other countries will be invited in the near future to participate in the study. The outcomes of this important project are an international dataset that will indicate the level of neglect regarding lymphedemas and the social, financial, and health importance of governments addressing lymphedema as a public health issue.
What Is the International Lymphoedema Framework?
The philosophy of the ILF is based on the belief that the partnership of all stakeholders is vital to changing the landscape of lymphedema management. This partnership includes patients (who play a role at all levels of the organization, including representation at the board level), clinicians, researchers, other national and international lymphedema organizations, and industry. The latter is considered a core member within the partnership and brings a unique expertise and ability to develop innovative responses to clinical challenges. For many professionals, an approach that involves the inclusion of industry is perceived as challenging, and thus there are strict codes of conduct to avoid bias.
The international network of expertise that forms the ILF is an invaluable resource that allows projects to have both a national and international dimension and ensures recommendations that address the myriad contextual issues that have an impact on lymphedema treatment.
STRUCTURE OF THE INTERNATIONAL LYMPHOEDEMA FRAMEWORK
The ILF is supported by an elected board of directors that includes the heads of some of the national lymphedema frameworks. These directors have monthly teleconferences (or more often if other important issues must be addressed). They meet face to face at the ILF conferences; the most recent conferences have been in Glasgow (2014), Montpellier (2012), and Toronto (2011). The 2016 meeting to be held in Darwin, Australia will focus on the Australasia and Pacific regions. An international advisory board is available for advice and expertise, and the members of this board meet during the conference. The members of the board are drawn from developed and developing countries.
The ILF welcomes involvement with key agencies and national and international organizations. Current partnerships include the following:
World Health Organization (WHO)
World Alliance for Wound and Lymphedema Care (WAWLC)
Global Alliance for the Elimination of Lymphatic Filariasis (GAELF)
Handicap International (an international charity)
International and national lymphology and wound groups
Patient support groups
What Is a National Lymphedema Framework?
A national lymphedema framework is a partnership of stakeholders within a given country who are dedicated to improving lymphedema care in their country.
The first national lymphedema framework was established in the United Kingdom in 2002. Through its partnership with those within the field of lymphedema, it developed a national research project, which involved the implementation of an internationally agreed standard of best practice within different service models. 6 This led to the adoption of a new classification of lymphedema through the United Kingdom drug tariff, which allowed access to prescriptions for all products required for treatment.
As of 2014, the ILF recognized national frameworks in Australia, Belgium, the Netherlands, Denmark, Canada, France, Japan, and the United States. Many leaders of lymphedema groups in other countries (for example, the People’s Republic of China, Taiwan and Singapore) have expressed an interest in becoming members.
OBJECTIVE OF A NATIONAL LYMPHEDEMA FRAMEWORK
The objective of a national framework is to improve the management of lymphedema within that country by developing a strategic plan to enhance care. This plan should include the following:
Assessment of the current care provision, examining both the positives and deficits
Identification of problems of access and payment of care
Involvement of stakeholders in the strategic planning
Adaptation of the best practice document 6 to national requirements
Definition of the appropriate models of care
Implementation of best practice and an evaluation of care with the ILF minimum dataset, launched in 2011
ESTABLISHING A NATIONAL LYMPHEDEMA FRAMEWORK
In Lymphoedema Frameworks—The Way Forward, 7 the ILF suggests that the following stages are an important process that will help ensure the success of the national organization:
Identify academic and clinical leads.
Identify the executive committee.
Incorporate the executive and stakeholders into a steering group.
Arrange steering group meetings to decide:
Structure of the national lymphedema framework – Roles and responsibilities
Definition of the goals
Scope of work
Plan a stakeholders’ meeting. This gives all the stakeholders the opportunity to contribute to the discussion and enables the identification of issues that must be addressed. In addition, this meeting helps identify possible solutions and possibly other stakeholders.
This meeting will culminate in a strategic plan for the national framework and identify working groups that are needed to ensure that the process is implemented.
The national framework will then undertake a scoping exercise that determines current practice and suggests where developments are needed so that best practice can be implemented.
The international Best Practice for the Management of Lymphoedema 6 should be adapted if necessary to meet the needs of the country.
From this the following steps will occur:
Appropriate models of care will be defined.
Definition of a strategy that uses the ILF minimum dataset as the evaluation tool will be established.
The working group will collaborate with reimbursement agencies to ensure that all their required information is included in this dataset.
Best practices will be implemented within the service with the use of the minimum dataset to measure health outcomes and cost-effectiveness.
The outcomes from this preparatory work will ensure that improvements in practice and reimbursements will be recognized.