Uncovering patterns of real-world psychological support seeking and the patient experience in multiple sclerosis

With the rate of psychological disorder being disproportionately high in people with Multiple Sclerosis (pwMS), it is important that they receive adequate psychological support. While there are informal and more formal sources of psychological support for pwMS available, there is a paucity of research in understanding the actual pattern of support that pwMS interact with in a real-world context. We aimed to understand this by examining the pattern of access across different sources of psychological support in the same large cohort of pwMS, and their experiences of support received. We also explore this in the context of different MS symptom profiles and demographics.

In an online survey, we asked 565 pwMS to report on their actual pattern of usage and their experience of receiving psychological support from four key sources - friends/family/peers, MS organisations/charities, MS specialist nurses and mental health professionals. Demographic and clinical data was also gathered about their MS profile and symptoms.

Friends/family/peers were rated as the most common, helpful and easy to access source of psychological support. However, most participants received psychological support from multiple sources, almost always in conjunction with support from friends/family/peers. Demographic and MS related factors predicted whether patients accessed each source or not. Younger pwMS and those more recently diagnosed were more likely to avail of support from friend/family/peers. The more patients were bothered by their symptoms the more likely they were to avail of psychological support from more sources. In particular, pwMS who are more bothered by fatigue and psychological symptoms were more likely to avail of support from mental health professionals. Overall, the helpfulness of support depended largely on how well the support provider knew the pwMS as a person and MS as a condition, as well as the level of emotional and practical skills support provided.

People with MS need to access multiple sources of support to meet the full spectrum of psychological needs as and when needed; friends/family/peers and mental health professionals for emotional support, and MS organisations/charities and specialist MS nurses for learning skills to manage their MS. This points towards the need to take a collaborative approach amongst the different sources of support to ensure all needs can be most effectively met.