A retrospective evaluation of patient characteristics and recommendations of a novel multidisciplinary clinic for persons with advanced disability from multiple sclerosis

Abstract

Context

Persons with advanced multiple sclerosis (MS) require care beyond the disease modifying treatments offered in conventional MS clinics to address their complex physical and psychosocial needs. In the novel MS Comprehensive and Palliative Care (MSCPC) Program, an MS neurologist, palliative care specialist, and physiatrist collaborate to identify these needs and improve symptom control.

Objectives

To characterize the medical, physical, and psychosocial concerns of persons with advanced disability from MS and describe the recommended interventions of the MSCPC Program.

Methods

Retrospective chart review of consecutive patients seen in the MSCPC Program from 2019 to 2022.

Results

54 patients were assessed over 74 clinic appointments. Patients’ mean age was 59.4 ± 10.8 years (range 37–81) and mean duration of MS was 24.8 ± 11.8 years (range 2–52); 79.7% of patients had secondary progressive MS with median and mode disease severity (EDSS) of 7.5 and 8.5, respectively (range 4–9.5). 70.3% lived at home with a caregiver; the primary caregiver was the spouse for 51.4% of cases. 85.1% of patients received publicly funded in-home assistance for activities of daily living. The most prevalent sequelae of MS were incontinence (89.9%), spasticity (82.6%), and pain (78.3%). ≥1 symptom was addressed at 95.7% of appointments, most often pain (63.8%), spasticity (60.9%), and bowel (59.4%); medication deprescribing was recommended at 29.0% of appointments. Caregiver burnout was identified at 56.5% of appointments.

Conclusion

This novel program identified high prevalence of symptoms and made recommendations to improve symptom control at >95% of appointments, suggesting unmet symptom control needs in persons with advanced disability from MS.