Background: Multiple Sclerosis (MS) specialist nurses are an integral part of the multidisciplinary health care team of people with MS. However, changes in traditional funding models have led to a reduction in the number of MS nurses, and concern about inequity of access.
Objectives: To describe the patterns of access to MS nurses, to examine whether people with MS without access had worse disease outcomes, and to describe the overall value of MS nurses and the perceived benefits of MS nurse care.
Methods: 1,417 participants of the Australian MS Longitudinal Study completed the 2020 MS Nurses Survey and 2019 Disease Course Survey. Participants were asked about MS nurse care access, utilisation (frequency, duration, satisfaction, types of support, consultation type), perceived effects and overall value. Regression models were used to assess associations between access and the severity of 13 MS symptoms, disability, self-reported progression in the past 12 months, and health-related quality of life.
Results: We found that 33% of people with MS did not have access to MS nurse care, and that people without access had consistently worse health outcomes compared to those with access, even after adjustment for education level, age, MS duration, onset type and remoteness area. MS nurses reduced the need for other health professionals and prevented hospital admissions. There were high levels of satisfaction with the frequency and types of services provided. A total of 78% reported that having an MS nurse was very helpful or somewhat helpful. The most frequently reported helpful supports included advice on symptom management (54.7%), the management of side effects (48.6%), assisting with treatment decisions (46.9%), and monitoring of treatments (41.7%).
Conclusions: MS nurses offer a service that benefits people with MS, and people who are not able to access this service were adversely affected in terms of health outcomes. It calls for policies and practices to improve the access to MS nurse services.