Development of consensus International Classification of Functioning, Disability and Health (ICF) core sets for lymphedema

To understand the challenges of patients with lymphedema it is important to describe functioning and to measure the effectiveness of treatment in changing functioning. The International Classification of Functioning, Disability and Health (ICF) offers an international framework to classify functioning of persons in their personal environment. ICF Core Sets are lists of selected ICF categories concerning those important aspects of functioning that are most likely to be affected by a specific health problem or disease. These Core Sets make it easier and faster to describe and communicate the patient's problems and to define treatment goals. Furthermore, they are available to health care providers of all professions, researchers, health insurance companies and policy-makers. The objective of this document is to present the outcomes of a consensus conference held to determine the first versions of the ICF Core Sets for lymphedema. Frequency rankings were made of the ICF categories derived from four preparatory studies, being: a) a systematic review; b) a qualitative study; c) an expert survey; and d) a cross-sectional study. By means of working group discussions and plenary sessions, a final consensus on ICF categories was achieved and Comprehensive and Brief Core Sets for lymphedema for the upper limb, lower limb, and midline lymphedema were defined. These ICF Core Sets contain different items in each region. Future validation of these Core Sets for health professions and for countries is needed.