Generic health status measures are unsuitable for measuring health status in severely disabled people

Objectives: To assess the perceived health status of disabled people.Design: Perceived health status was evaluated with the Short Form 36 Health Survey (SF-36) and the Nottingham Health Profile as part of a needs assessment project exploring systematic differences in unmet needs for rehabilitation as perceived by disabled people, carers and professional staff.Disabled participants completed these health status questionnaires, as part of a face-to-face interview in participants’ own homes.Subjects: Ninety-two disabled people aged 16–65, recruited into the study from two disability registers. Outcome measures: The Office of Population Censuses and Surveys (OPCS) Disability Severity Scale, Nottingham Health Profile, SF-36.Results: Ninety-six disabled people took part in this study. Four were later excluded because of overwhelming communication difficulties. Median OPCS category was 8 (interquartile range 6–9.75). The pain and physical mobility domains of the Nottingham Health Profile were not completed by 46/92 participants (50%) because many questions referred to activities that these people could not perform, particularly walking. The physical functioning domain of the SF-36 showed severe floor effects. It was not therefore possible to use these measures to test the effectiveness of services provided to disabled people, particularly in the areas of physical functioning and pain.Conclusions: There is a continued need to develop and test instruments that can measure the outcomes of rehabilitation in severely disabled populations