The activities and participation categories of the ICF Core Sets for multiple sclerosis from the patient perspective

Abstract

Purpose: To validate the activities and participation components of The International Classification of Functioning, Disability and Health (ICF).

Methods: In this cross-sectional study, 113 Finnish community-dwelling persons with MS were assessed using a semi-structured interview provided by the Canadian Occupational Performance Measure (COPM) to capture participants’ self-perceived problems in everyday activities and participation. Problems were linked to the ICF categories.

Results: Participants identified 527 of the most important occupational performance problems. They covered all chapters of the ICF Activities and Participation components. Forty-one categories out of a total 53 ICF activities and participation categories of the Comprehensive ICF Core Set and four out of five categories of the Brief ICF Core Set were reported on by the participants. The most common category in this sample, ‘d920 Recreation and leisure’ (145 problems/27.5%), is not included in the Brief ICF Core Set.

Conclusions: Most, but not all, ICF activities and participation categories of the ICF Core Sets for MS could be confirmed from the perspective of persons with MS. It is worth considering to add category ‘d920 Recreation and leisure’ to the Brief ICF Core Set.

Implications for Rehabilitation

• The perceived problems of persons with MS support current versions of the ICF Core Sets for MS.

• The subjective experiences of prioritized problems encountered in everyday life vary considerably among community-dwelling persons with MS.

• Persons with MS often experience problems with recreation and leisure activities.

• Experiences of patient about recreation and leisure activities should be asked more systematically during rehabilitation process and the role of recreation and leisure should be considered when further developing the Brief ICF Core Sets for MS.

Keywords::

• Multiple sclerosis
• International Classification of Functioning
• Disability and Health (ICF)
• ICF Core Set
• client perspective

Acknowledgements

We thank all persons with MS who participated in this study. We would also like to thank the interviewers Tuija Heiskanen and Maikku Tammisto, as well as the district coordinators of the Finnish MS Society Annika Ingves, Anne Huuskonen and Hannu Kapanen, for their participation in data collection. We are also grateful to publication team at the Research Department of The Social Insurance Institution of Finland.

Declarations of Interest: The study was performed as a part of a larger project funded by the Social Insurance Institution of Finland.