Participation as an outcome measure in psychosocial oncology: content of cancer-specific health-related quality of life instruments

PURPOSE: To examine to what extent the concept and the domains of participation as defined in the International Classification of Functioning, Disability and Health (ICF) are represented in general cancer-specific health-related quality of life (HRQOL) instruments. METHODS: Using the ICF linking rules, two coders independently extracted the meaningful concepts of ten instruments and linked these to ICF codes. RESULTS: The proportion of concepts that could be linked to ICF codes ranged from 68 to 95%. Although all instruments contained concepts linked to Participation (Chapters d7–d9 of the classification of ‘Activities and Participation’), the instruments covered only a small part of all available ICF codes. The proportion of ICF codes in the instruments that were participation related ranged from 3 to 35%. ‘Major life areas’ (d8) was the most frequently used Participation Chapter, with d850 ‘remunerative employment’ as the most used ICF code. CONCLUSIONS: The number of participation-related ICF codes covered in the instruments is limited. General cancer-specific HRQOL instruments only assess social life of cancer patients to a limited degree. This study’s information on the content of these instruments may guide researchers in selecting the appropriate instrument for a specific research purpose.