Functioning in lymphedema from the patients' perspective using the International Classification of Functioning, Disability and health (ICF) as a reference.

Purpose: To identify and quantify meaningful concepts in lymphedema from the patients' perspectives using the International Classification of Functioning, Disability and Health (ICF).

Methods: Six focus group interviews in five different centers were organized, audiotaped, transcribed verbatim and analyzed.

Results: A total of 2681 relevant ICF linkings were performed with the focus group data, resulting in 130 different second-level categories. Of these 130 second-level categories, 41 (31.5%) categories were categorized as Body Functions, 20 (15.5%) as Body Structures, 41 (31.5%) as Activities and Participation, and 28 (21.5%) as Environmental Factors. Overall, the most important issues according to the patients were the use of hosiery and bandages, support and relationships, and the shape of structures related to movement.

Conclusion: Based on their experiences with lymphedema, patients reported activity limitations and participation restrictions combined with impaired body functioning. Anatomical changes (Body Structures) were also often mentioned as a problem in daily life. Environmental factors may act as a barrier or facilitator for patient functioning. The ICF provides a valuable reference to identify concepts in statements from lymphedema patients. The results of this research will be used in the development of ICF Core Sets for lymphedema.