Functioning and disability in multiple sclerosis from the patient perspective

Author:

Coenen Michaela12,Basedow-Rajwich Birgit3,König Nicolaus3,Kesselring Jürg4,Cieza Alarcos12

Affiliation:

1. Institute for Health and Rehabilitation Sciences, Research Unit for Biopsychosocial Health, Ludwig-Maximilians-University (LMU), Munich, Germany

2. ICF Research Branch in cooperation with the WHO Collaborating Centre for the Family of International Classifications in Germany (at DIMDI)

3. Kempfenhausen Centre for Treatment of Multiple Sclerosis, Marianne-Strauß-Klinik, Berg, Germany

4. Department of Neurorehabilitation, Valens Rehabilitation Centre, Valens, Switzerland

Abstract

Multiple sclerosis (MS) has a great impact on functioning and disability. The perspective of those who experience the health problem has to be taken into account to obtain an in-depth understanding of functioning and disability. The objective was to describe the areas of functioning and disability and relevant contextual factors in MS from the patient perspective. A qualitative study using focus group methodology was performed. The sample size was determined by saturation. The focus groups were digitally recorded and transcribed verbatim. The meaning condensation procedure was used for data analysis. Identified concepts were linked to International Classification of Functioning, Disability and Health (ICF) categories according to established linking rules. Six focus groups with a total of 27 participants were performed. In total, 1327 concepts were identified and linked to 106 ICF categories of the ICF components Body Functions, Activities and Participation and Environmental Factors. This qualitative study reports on the impact of MS on functioning and disability from the patient perspective. The participants in this study provided information about all physical aspects and areas of daily life affected by the disease, as well as the environmental factors influencing their lives.

Publisher

SAGE Publications

Subject

Health Policy,General Medicine

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