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

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. Using the ICF linking rules, two coders independently extracted the meaningful concepts of ten instruments and linked these to ICF codes. 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. 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.