Health-related quality of life and depression in peer-supported people with chronic neurological disease − A look at epilepsy and multiple sclerosis self-help groups and internet forums

Abstract

Background

Epilepsy and multiple sclerosis (MS) are both chronic neurological diseases with a high symptom burden, including depression and resulting in lower health-related quality of life (HRQoL). Peer-support groups seem to be beneficial to improve HRQoL and depression. Since the course of the two diseases varies, the question arises if they differ in terms of HRQoL, depression and coping strategies and which predictors are related to HRQoL in peer-supported people.

Methods

A total of 90 participants with epilepsy (n = 46) or MS (n = 44), recruited from local or online peer-support groups, were surveyed by questionnaire. HRQoL (SF-36), coping with illness (FKV-LIS), depression (BDI-II), socio-demographic and clinical data were examined.

Results

The two peer-supported groups did not differ, neither in coping strategies nor in HRQoL, with the exception of the physical related scales. However, the HRQoL values in both groups were worse than in general population. An important predictor of HRQoL in epilepsy as well as in MS was depression, which was present in 40 % of cases.

Conclusions

Even people with MS or epilepsy who attended a peer-support group, i.e. who have been actively coping with their disease, had a reduced HRQoL. Neither coping strategies nor other disease related variables but comorbid depression was the most significant predictor of poorer HRQoL. Our results support the necessity to treat comorbid depression and thereby improve HRQoL, even in peer-supported people.