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.