Handicap questionnaires: what do they assess?

Background and purpose: There is an increasing need to get insight into the social and societal impact of chronic conditions on a person's life, i.e. person-perceived handicap. The purpose of this study is to report how current handicap questionnaires assess handicap. Method: A literature search using both Medline and the database of the Dutch Institute of Allied Health Professions (NPI) was conducted for handicap questionnaires. Questionnaires were included if addressing handicaps or life roles, environmental influences and social consequences of a disease. Excluded were questionnaires focusing on only impairments, disabilities or quality of life. Results and conclusion: 20 questionnaires were identified. Handicap is not uniformly defined in these questionnaires. Based on different concepts, the various questionnaires encompass different domains and different aspects are emphasized in similar domains. Fourteen questionnaires assess society-perceived handicaps, and do not address the life roles, care needs or individual problem-experience. Six questionnaires are to some extent person-perceived, but a generic person-perceived handicap questionnaire could not be identified. It is concluded that development of a generic person-perceived handicap questionnaire is essential for adequate assessment of needs, outcome, and relevance of rehabilitation interventions from the individual's point of view.