Gaps in Access to Care Persist for Patients With MS, Affect HRQOL

In the US, patients with multiple sclerosis (MS) continue to face gaps in access to care, which substantially impacts their health-related quality of life (HRQOL), according to study results published in Neurology Clinical Practice.

Researchers conducted a cross-sectional survey of participants in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry in 2022 to explore priorities for access to care and affordability of care by patients living with MS in the US, as well as investigate the relationship between perceived access to care and HRQOL. Using the Health Utilities Index-Mark III version, HRQOL was assessed. To examine sociodemographic and clinical factors associated with unmet needs for specific providers (ie, general practitioner, neurologist, nurse practitioner), a series of multivariable polytomous logistic regression models were used. To test the association between unmet needs for health care providers and HRQOL, multivariable linear regression analysis was conducted.

A total of 4914 participants (mean age, 64.4; women, 80.9%; White, 87.8%; any health insurance, 99.4%) were included in the study, of whom 1718 (35.8%), 2307 (48.0%), 292 (6.1%), and 161 (3.4%) reported that their main source of MS care was a general practitioner, private neurologist, specialized MS center, or Veterans’ Administration, respectively. Other sources of MS care were reported by 89 (1.9%) patients, while 235 (4.9%) patients reporting not receiving any care for MS.

A majority of patients reported that it was important or very important to have ample time during their appointments to explain concerns (90.3%), get an appointment with their primary MS health care provider as needed (88.9%), see their neurologist if their clinical status changed (89.4%), and have a health care provider who communicated to coordinate their care (80.6%).

Affordability of disease-modifying and symptomatic medication (81.8%), physical or occupational therapy (73.2%), adaptive aids and medical equipment (70.1%), and maintaining wellness through complementary care (59.3%) was deemed important or very important by a majority of patients.

Complementary providers (35.5%), allied health providers (24.2%), occupational therapists (22.7%), and mental health providers (10.7%) were most reported as needed but inaccessible.

Lack of access to a neurologist (ꞵ, 0.233; 95% CI, 0.165-0.300) and needing to see a neurologist more frequently (ꞵ, 0.209; 95% CI, 0.171-0.248) were both associated with a reduction in HRQOL. This pattern was observed for all providers. Although the magnitude of these effects was attenuated by 35% to 48% depending on the provider, results remained statistically significant even after adjusting for covariates.

The magnitude of the effect was broadly similar across different types of providers and typically larger when participants reported not having access (adjusted ꞵ range, -0.097 [mental health providers] to -0.193 [nurses]) vs needing more frequent access (adjusted ꞵ range, -0.059 [occupational therapists] to -0.206 [pharmacists]). This pattern was opposite, however, for general practitioners and pharmacists.

Study limitations include its cross-sectional design, inability to determine how the COVID-19 pandemic may have influenced outcomes, potential selection biases, reduced generalizability of results to younger MS populations, and the inability to capture all social determinants of health.

“Improving access to care for MS across all population subgroups should be a health system priority,” the study authors concluded.

Disclosure: Some of the study authors declared affiliations with biotech, pharmaceutical, and/or device companies. Please see the original reference for a full list of disclosures.