The Chronic Oedema Outcome Measure (ILF-COM) project is aiming to develop an internationally agreed set of outcome measures for patients with chronic oedema.
The ILF has identified a number of key priority areas that are inhibiting the recognition of chronic oedema as a major, emerging public health care problem. These include the need for international epidemiology to provide evidence of the size and impact on health care services. This topic amongst others have been addressed in the LIMPRINT study.
A second aspect that has not received sufficient attention is the lack of agreed international standards and methods for assessing and reporting the outcome of treatment of patients with different forms of chronic oedema.
Challenges of measuring outcome in chronic oedema
The most commonly used primary outcome measure in chronic oedema or lymphoedema trials or studies is changes in limb volume. There are many different methods used and a lack of standardisation. Some studies, particularly in breast cancer, adopt other methods including symptom rating and mixed methods. The diversity of approaches means that it is almost impossible to compare studies. This issue is particularly difficult for reimbursement and healthcare agencies for which limb volume change currently has little or no meaning.
The overall goal for the ILF COM endeavour is to agree and validate international measures to be used by the lymphoedema community in both clinical practice and research. This should assist in providing robust guidance for reimbursement agencies.
Project timeline and activities
During 2018 an international survey will be conducted by active involvement of identified key stakeholders. An international meeting is being held during the ILF Rotterdam Conference 6 – 9 June 2018.
The ILF-COM project is being developed with support from unrestricted educational grants by 3M, BSN, Thuasne, Sigvaris, Specialbandager, and Tactile Medical.