The Multiple Sclerosis at Home Access Program (MAHA): New Challenges for Those Living with Multiple Sclerosis and Significant Disability during the COVID-19 Pandemic

Background: Abundant evidence supports disparity in health care delivery for persons with disability. These disparities may be magnified for persons with progressive MS given the medical complexity and effect of dynamic, heterogeneous neurological deficits. The impact of COVID-19 on persons with disability related to MS is only beginning to be realized. Advancing disability predisposes individuals to common, generally preventable, life-threatening medical complications. These patients and families face enormous challenges in accessing, coordinating, managing, and financing their healthcare. To begin to address these gaps in health care delivery, in 2014 the MAHA program was initiated. Based on core concepts of the chronic illness model the program objective was to improve access to comprehensive care for persons with MS and significant disability (EDSS > 7), reduce preventable complications and improve satisfaction with care. Unique aspects of our model incorporate the MS Comprehensivist, a provider hybrid role, bridging sub-specialty and primary care with regular house calls to homebound individuals. Initial findings of our program suggested a viable option for care delivery.

Our program has quadrupled in enrollment and expanded access options to care to include facility visits, expansion of telemedicine and a trans-disciplinary clinic. Early COVID-19 pandemic data suggests a trend toward increases in healthcare utilization.

Objectives: Analyze outcome data from routine quality monitoring during COVID-19 and compare to time prior to pandemic. Include insight and learnings in further program development.

Methods: Ongoing quality monitoring data, including ER visits and hospitalizations, analyzed using nonparametric descriptive statistics and patient reported qualitative information. Conclusions and lessons learned used an iterative process for program development.

Results: Healthcare utilization continued to be observed with approximately 40% of individuals being hospitalized. Qualitative information suggests a high level of impact on healthcare utilization and quality of life on individuals living with MS and their caregivers specifically related to COVID-19.

Conclusions: Consistent with other findings in vulnerable populations, patients in our program suffered adverse effects during COVID-19 as evidenced by urgent, complex health care needs. Pausing support programs, care partner exposure, and halting of paratransit amplified the challenges. One apparent benefit was expansion of telemedicine.