What Patients Expect from Their MS Nurse: Canadian Survey Results

Background: MS patients’ needs for education and support have changed in recent years as patient management has evolved. Identifying patients’ expectations of their MS specialist nurse can assist clinics in developing initiatives and allocating resources to meet the changing needs of patients.

Objectives: To survey MS patients about the services they expect from their MS specialist nurse.

Methods: We disseminated a survey on msology.com, a weekly open-access news site for people with MS that has about 40,000 visitors per year. The 16-item questionnaire was promoted to subscribers by direct email, and to the MS community through social media. The importance of 33 nursing functions were rated on a 5-point Likert scale (5=very important, 1=unimportant) and scores were averaged.

Results: A total of 226 Canadians with MS completed the survey in the period June-September 2016. 82% were female. 42% were older than 50 years and 54% had lived with MS >10 years. Impairment in walking ability was self-rated as none (21%), minimal (walks unaided, 35%), moderate (occasionally/frequently uses a cane or other aid, 25%), and severe (requires a cane or other device, 18%). 40% were managed at an MS specialist center, and 35% by a neurologist in a hospital or clinic. 49% were receiving care from an MS specialist nurse. Most (55%) were currently taking a disease-modifying therapy (DMT), 27% were former DMT users but currently untreated, and 18% had never been treated. The highest-rated nursing functions were general education about MS; education about how MS may develop; being available by phone to answer questions about MS symptoms; education about MS relapses; and clinically assessing relapses. Rated somewhat lower were promoting public awareness about MS; providing information about community resources; and monitoring medication adherence. Most patients reported seeing their MS nurse once a year (42.6%) or only when there was a problem (31.4%). A majority (56%) said they would like to see their MS nurse at least every six months.

Conclusions: Patients highly rate the value of MS nurses in educating them about their diagnosis and prognosis, and in assessing and managing relapses. Respondents were generally older and most did not have access to MS specialist nurse care, which may contribute to the high proportion (45%) of patients who were untreated or had stopped taking a DMT. Results support the central role of nursing in the day-to-day management of MS patients.