Coding of Meaningful Concepts in Lymphedema-specific Questionnaires with the ICF

Purpose: To identify and quantify the meaningful concepts within questionnaires focusing on lymphedema using the International Classification of Functioning, Disability and Health (ICF).

Methods: Electronic searches of Medline, EMBASE, CINAHL, CENtral and Pedro (2005-2010) were conducted. The concepts in the questionnaires were retrieved from the included studies and linked to the ICF.

Results: Of the 2381 abstracts retrieved, 136 studies were included. The study population suffered from lymphedema in the upper limb (65%), in the lower limb (25%), in the midline (3%) and in combinations of these areas (7%). In total, 12 lymphedema-specific questionnaires were found (nine for the upper limb, two for the lower limb and one for lymphedema in general). A total of 301 concepts were extracted from the questionnaires, of which 271 (90%) could be linked to the ICF. There were 45 two-level ICF categories linked to concepts in ≥2 questionnaires; 13 in Body Functions, 6 in Body Structures, 16 in Activities and Participation and 10 in Environmental Factors. The most frequently measured categories were "Structure of upper extremity", "Immunological system functions", "Looking after one's health", "Sensation of pain", "Touch functions", "Dressing" and "Health services, systems and policies".

Conclusion: The ICF provides a valuable reference to identify concepts in questionnaires focusing on individuals with lymphedema. Implications for Rehabilitation Lymphedema is a chronic condition and the problems in physical functioning related to lymphedema can result in distress and loss of quality of life. ICF Core Sets for lymphedema consist of a lymphedema-specific selection of ICF categories, which makes it easier to implement the use of the ICF in medical and allied health care. ICF Core Sets for lymphedema can act as a framework for more unity in questionnaires concerning consequences of lymphedema. Part of the development process of ICF Core Sets for lymphedema is the linking of items from lymphedema-specific clinical questionnaires to ICF codes. The ICF codes most frequently used to link the items in the reviewed questionnaires were "Structure of upper extremity", "Immunological system functions", "Looking after one's health", "Sensation of pain", "Touch functions", "Dressing" and "Health services, systems and policies".