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.