Validation of the Comprehensive ICF Core Set for Rheumatoid Arthritis from the Patients' Perspective using Qualitative Methods

Purpose: The Comprehensive ICF Core Set for rheumatoid arthritis (RA) is an application of the International Classification of Functioning, Disability and Health (ICF) [1] with the purpose of representing the typical spectrum of problems in functioning of patients with RA. It was developed in a formal decision-making and consensus process with health professionals from all over the world integrating evidence gathered from preliminary studies [2].

The specific aims were to explore the aspects of functioning and health important to patients with RA using two different qualitative methods (focus groups and individual interviews) with two different approaches each method, to examine to what extent these aspects are represented by the current version of the Comprehensive ICF Core Set for RA, and to come forward with a proposal of the most appropriate method to validate ICF Core Sets from the patients' perspective.

Methods: In the first approach (open approach) open- ended questions asking for the problems of patients on body functions and body structures, activities and participation were used. The patients were additionally asked about environmental factors influencing their every-day life. In the second approach (ICF-based approach) each of the titles of the ICF chapters of categories which are included in the Comprehensive ICF Core Set for RA was presented and open-ended questions asking for problems in those life areas were used. The sampling of patients followed the maximum variation strategy. Sample size was determined by saturation [3]. The focus groups and individual interviews were digitally recorded and transcribed verbatim. The meaning condensation procedure [4] was used for the data analysis. The resulting concepts were linked to ICF categories according to established linking rules [5].

Result: 49 patients participated in ten focus groups (open approach: 5; ICF-based approach: 5) and 21 patients in the individual interviews (open approach: 13; ICF-based approach: 8). In the focus groups 65 ICF categories out of 76 ICF categories contained in the current version of the Comprehensive ICF Core Set for RA were reported by the patients based on the open approach and 71 categories based on the ICF-based approach, respectively. In contrast 54 categories in the open approach and 58 categories in the ICF-based approach were raised by the patients in the individual interviews.

Discussion: Focus groups and individual interviews are highly useful qualitative methods to validate the Comprehensive ICF Core Set for RA from the patients' perspective. The existing version of the Comprehensive ICF Core Set with its selected categories could be confirmed almost entirely by the two different qualitative methods and the two approaches applied. The ICF-based approach which uses the contents of the Comprehensive ICF Core Set for RA to structure the focus groups and the individual interviews seems to be the most appropriate technique.

References:

¹ World Health Organization. International Classification of Functioning, Disability and Health: ICF. Geneva: WHO, 2001

² Stucki G, Cieza A, Geyh S, Battistella L, Lloyd J, Symmons D et al. ICF Core Sets for Rheumatoid Arthritis. Journal of Rehabilitation Medicine 2004, Suppl., 44: 87–93

³ Patton, MQ. Qualitative evaluation and research methods. Newbury Park: Sage, 1990

⁴ Kvale, S. Interviews – An Introduction to Qualitative Research Interviewing. California: Sage, 1996

⁵ Cieza A, Brockow T, Ewert T, Amman E, Kollerits B, Chatterji S et al. Linking Health-Status Measurements to the International Classification of Functioning; Disability and Health. Journal of Rehabilitation Medicine 2002; 34: 205–210

Gefördert vom Bundesverband der Deutschen Rheuma-Liga e.V.