What drives quality of life in multiple sclerosis?

BACKGROUND: Extensive use of the EDSS measure of disease severity by clinicians, and the EQ-5D measure of quality of life by healthcare decision-makers, may not adequately reflect patient perceptions of the range and impact of their symptoms. AIM: To investigate the perceptions of MS patients in relation to specific symptoms and their general health-related quality of life.
DESIGN: Questionnaire-based surveys.
METHODS: Two consecutive postal surveys were sent to people whose contact details were on the database of the MS Trust. The first was sent to all 8,614. Of 3,403 respondents, 1992 agreed to participate in a second survey.
RESULTS: In the first survey (response rate 40%), 1993 respondents (88%) reported moderate or severe fatigue; of 266 receiving disease-modifying therapy, 109 (41%) felt it improved their fatigue. In the second (response rate 78%), mean EQ-5D Index and z scores on the related quality of life deficit were significantly lower for respondents with relapsing or progressive disease than for those with benign disease. In the former groups (total n=1178), over 90% reported problems with mobility and usual activities, and over 80% reported problems with pain. The lowest mean SF-36 scores were for role-physical, physical functioning and vitality, vitality being higher in respondents receiving beta interferon vs. those who were not (p <0.0001). Vitality was highly correlated with social functioning (0.58), general health (0.51) and mental health (0.50). DISCUSSION: Fatigue can profoundly disrupt the occupational and social functioning of MS patients, but is not directly captured in either the EDSS or the EQ-5D. Further investigation of the patient-perceived benefits of disease-modifying therapy, particularly in relation to symptoms of fatigue, may be valuable.