Functioning and health in individuals with Multiple Sclerosis from the patient perspective

Objective: The objective of the study was to explore aspects of functioning and health as well as environmental and personal factors relevant to individuals with Multiple Sclerosis (MS) from the patient perspective.

Methods: The study was conducted as a qualitative study using focus groups. The focus groups were performed at the Kempfenhausen Centre for Treatment of Multiple Sclerosis (Germany). A topic guide with open-ended questions based on the components of the International Classification of Functioning, Disability and Health (ICF) 'Body Structures', 'Body Functions', 'Activities and Participation', 'Environmental Factors' and 'Personal Factors' was applied for data collection. The sampling of participants followed the so called maximum variation strategy. Sample size was determined by saturation of data. The focus groups were digitally recorded and transcribed verbatim. The meaning condensation procedure was used for data analysis. The resulting concepts were linked to ICF categories according to standardized linking rules.

Results: Twenty seven individuals with definitive MS (18 women, 8 men) participated in six focus groups. Based on the statements of the participants numerous aspects of functioning and health as well as Environmental and Personal factors were identified. They were linked to 66 ICF categories of the component Body Functions, to 60 ICF categories of the component Activities & Participation and to 54 ICF categories of the component Environmental Factors. Two hundred forty eight different concepts were identified as Personal Factors.

Conclusions: Using a qualitative approach it is possible to explore and understand the perspective of individuals with multiple sclerosis on functioning and health and to identify relevant Personal and Environmental factors.