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

Which aspects of functioning are relevant for patients with ankylosing spondylitis: results of focus group interviews
Which aspects of functioning are relevant for patients with ankylosing spondylitis: results of focus group interviews
Objective: To investigate whether concepts important to patients with ankylosing spondylitis (AS) are covered by disease-specific self-report health status instruments.

Methods: 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.

Results: 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.

Conclusion: 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.
ankylosing spondylitis, functioning, focus groups, international classification of functioning disability and health, expert perspective
0315-162X
2501-2511
Boonen, Annelies
c32bd0a4-48b2-45f9-9ab3-5ff0074b7f32
van Berkel, Monique
7871c545-718f-46cf-bcfd-c11d815949b4
Cieza, Alarcos
a0df25c5-ee2c-4580-82b3-d0a75591580e
Stucki, Gerold
0534525c-103b-45be-b0a5-061d8867ef0d
van der Heijde, Désirée
25d8784d-95e8-4f03-a210-4719bf2a98ce
Boonen, Annelies
c32bd0a4-48b2-45f9-9ab3-5ff0074b7f32
van Berkel, Monique
7871c545-718f-46cf-bcfd-c11d815949b4
Cieza, Alarcos
a0df25c5-ee2c-4580-82b3-d0a75591580e
Stucki, Gerold
0534525c-103b-45be-b0a5-061d8867ef0d
van der Heijde, Désirée
25d8784d-95e8-4f03-a210-4719bf2a98ce

Boonen, Annelies, van Berkel, Monique, Cieza, Alarcos, Stucki, Gerold and van der Heijde, Désirée (2009) Which aspects of functioning are relevant for patients with ankylosing spondylitis: results of focus group interviews. The Journal of Rheumatology, 36 (11), 2501-2511. (doi:10.3899/jrheum.090156). (PMID:19833752)

Record type: Article

Abstract

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

Methods: 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.

Results: 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.

Conclusion: 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.

Full text not available from this repository.

More information

e-pub ahead of print date: 15 October 2009
Published date: November 2009
Keywords: ankylosing spondylitis, functioning, focus groups, international classification of functioning disability and health, expert perspective
Organisations: Psychology

Identifiers

Local EPrints ID: 341341
URI: https://eprints.soton.ac.uk/id/eprint/341341
ISSN: 0315-162X
PURE UUID: 0bd7eb15-4bf0-4842-a841-8877edcd64bd

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Date deposited: 20 Jul 2012 08:40
Last modified: 16 Jul 2019 21:57

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