Objective:

To adapt and evaluate the feasibility and acceptability of a remotely delivered self-management program for adults with multiple sclerosis (MS) and cognitive dysfunction.

Background:

Cognitive dysfunction and reduced quality of life (QoL) are common in MS. The psychoeducation program called HOBSCOTCH (HOme Based Self-Management and COgnitive Training CHanges Lives), originally developed for epilepsy, has shown efficacy in improving QoL and subjective cognition. This efficacy has prompted systematic adaptation of HOBSCOTCH to address care gaps in other neurologic conditions, including MS. We describe a telehealth adaptation for MS and its pilot evaluation.

Design/Methods:

Program design was informed using Community Engagement Studio (CES) methodology involving adults with MS and by input from the National MS Society. Qualitative feedback identified priorities for the adapted curriculum, including: (1) flexible scheduling; (2) one-on-one delivery; (3) participant-driven format; (4) emotion-regulating resources; (5) education on cognition in MS; (6) mindfulness instruction; (7) inclusion of care partners; and (8) visibility within the MS community. Post-CES, a feasibility and acceptability pilot of HOBSCOTCH-MS was conducted. QoL (FAMS), subjective cognition (NeuroQOL), and satisfaction were assessed.

Results:

At baseline, pilot participants (n=8) reported mediocre QoL (M=106.88, SD=23.29) and considerable cognitive deficits (M=42.65, SD=7.69). Qualitative pilot outcomes demonstrated strong feasibility and acceptability. All pilot participants who completed the program (n=8) attended every session, completed homework, and responded "very" or "extremely" regarding their satisfaction with the coach-participant relationship and their likelihood of recommending the program. Participants responded "moderately" (25%), "very” (12.5%), or "extremely" (62.5%) regarding the usefulness of learned strategies and their likelihood of applying program skills to everyday life.

Conclusions:

Coproduction with the MS community facilitated adaptation of a remotely delivered psychoeducation program for people with MS. Pilot findings have informed an ongoing randomized-controlled efficacy trial of the adapted HOBSCOTCH-MS intervention; primary outcomes in 125 patients enrolled from 2025-2028 will include QoL and subjective cognitive function.