Background: The North American Registry for Care and Research in Multiple Sclerosis (NARCRMS) is a physician-based longitudinal registry of clinical records and patient-reported outcomes. The health resource utilization (HRU) questionnaire developed for NARCRMS represents a way of collecting patient-centered data to analyze multiple sclerosis (MS) related HRU patterns and the potential impact of having MS.
Objectives: To describe real-world health care utilization, current disability income status, and unpaid homecare from family or friends of people living with MS (pwMS) or clinically isolated syndrome (CIS).
Methods: A cross-sectional analysis of the NARCRMS-HRU questionnaires which were completed at enrollment by individuals with MS or CIS across the United States and Canada. The Patient-reported services and support were according to the HRU for the prior three months. The data was analyzed using SPSS version 25.
Results: Between December 1, 2016 and November 30, 2020; 802 patients were enrolled in NARCRMS. Of those enrolled, 711 (88.7%) patients (528 females, mean age = 42.7 ± 10.05 years, and median EDSS = 1.5) completed the HRU questionnaire. Participants reported services from: a neurologist (n= 595), a general practitioner (n= 154), an ophthalmologist (n= 103), a physical therapist (n= 67), a massage therapist (n= 58), a psychiatrist (n= 40), a psychologist (n= 37), a urologist (n= 30), an internist (n= 20), a social worker (n= 20), a chiropractor (n= 19), a speech therapist (n= 16), an acupuncturist (n= 14), an emergency room (n= 40), an inpatient hospital stay (n= 24), and a rehabilitation center (n= 4). At the time of reporting, 84 (11.8%) patients were receiving disability income, 88 (12.4%) were living alone, 198 (27.8%) were living with a significant other, 289 (40.6%) were living with a significant other and children, and 133 (18.7%) were living with a parent, sibling, or other family member. 47 (6.6%) patients had received unpaid homecare (family, friends) with a mean number of 5.6 ± 9.8 hours/day. Family members or friends of 63 (8.9%) patients had to miss paid work due to the patients MS, with a mean number of 6.2 ± 22.8 days.
Conclusions: MS has economic implications for both pwMS and their family members or friends. Services from a neurologist, a general practitioner, an ophthalmologist, a physical therapist, and a massage therapist were the top five most frequently reported services received by this cohort of patients.