Which aspects of functioning are relevant for patients with ankylosing spondylitis: results of focus group interviews

To investigate whether concepts important to patients with ankylosing spondylitis (AS) are covered by disease-specific self-report health status instruments.

A qualitative focus group study was conducted with AS patients on problems in daily functioning. Group sessions with 4 to 5 patients each were organized up to the point that no new information was brought forward. Group sessions were tape-recorded, transcribed, and divided into meaning units. Concepts contained in the meaning units were extracted. Self-report instruments on health status specific for AS were identified in a literature search. Using the International Classification of Functioning, Disability and Health (ICF) as a common reference, it was determined whether the concepts identified in the focus groups were covered by the instruments.

Nineteen patients participated in 4 focus group interviews. In total, 332 unique meaning units were linked to 90 second-level ICF categories, of which 25 referred to body functions, 10 to body structures, 35 to activities and participation and 30 to environmental factors. In addition, several concepts relating to personal factors were identified. Only 47 categories were also covered by one of the self-report instruments in AS. Only a minority of concepts addressed by the AS-specific questionnaires were not revealed as relevant in the interviews.

Relevant aspects of the influence of AS are not covered by the classic disease-specific instruments. In particular, the influence of AS on socializing and leisure and the relevance of environmental and personal factors are not adequately assessed by available instruments.