Processes and Feasibility of Implementing Standardized Outcome Measurements in an Outpatient MS Program

Research Objectives: To establish a registry aimed at improving the management of multiple sclerosis (MS). We sought to identify problems that arise for people with MS, such as increased symptom intensity, reduced mobility, and cognitive decline by implementing periodic standardized outcome measurements (SOM), in a timely fashion for more expeditious resolution, and the prevention of any secondary problems.

Design: We designed an evidence-based toolkit of outcome measures for monitoring MS symptoms and comorbidities over time. Using a longitudinal study model, participant responses were collected upon admission to the MS Institute and participants were asked to complete the same measures every six months over a 36-month period.

Setting: An outpatient MS institute comprised of a comprehensive program including a neurology clinic, day program, traditional rehabilitation, wellness program, and a research institute all located in an outpatient setting.

Participants: Newly engaged patients starting care at the Shepherd Center’s MS Institute were enrolled.

Interventions: N/a

Main Outcome Measures: Clinical-reported outcomes (CRO) were collected at baseline only, while patient-reported outcomes (PRO) were collected at baseline and at 6-month intervals for a duration of 36 months. PRO data was recorded electronically utilizing Achievement, a secure online platform through Evidation Health. Participant assessments included age, sex, disability status (Patient Determined Disease Steps; PDDS), MS type, relapses, and hospitalizations.

Results: A total of 216 participants (age 49+/-12.2, 77% female, PDDS 3+/-2.3) were initially enrolled, however, not all completed data collection surveys at each time point. We began with a 100% completion rate at baseline and fell to 49%, 30%, and 5% at years 1, 2, and 3, respectively.

Conclusions: This study demonstrates the processes and feasibility of implementing SOM in patients with MS in a comprehensive MS institute. New approaches to collecting the data may be needed to increase the number of participants engaged in the SOM program. Using this research to inform models of care may provide insight into addressing patient needs sooner and slow the progression of disability.

Author(s) Disclosures: None