Table 2.
Summary of Community Advisory Board Feedback and Proposed Exercise Training Intervention Modification
| Component | Consider Adding | Consider Changing | Keep As Designed | Proposed Modification |
|---|---|---|---|---|
| Prescription | -More challenging prescription for aerobic exercise -Additional modalities for aerobic training such as YouTube videos -Exercises directly related to transferring -Flexibility and adaptations for setbacks -Heat safety information and resources -Guidance on warm-up, cool-down and stretching |
-Split aerobic exercise goals into smaller increments (e.g., 15 minutes/4 days) -Resistance training exercises targeting lower body -Description of RPE Scale clarifying it is an overall rating that may span a range of values (1-10) during exercise sessions |
-Exercise prescription “Tracks” promote inclusion and avoid issues with early defeat -RPE scale is good for individual intensity rating |
-Aerobic exercise prescription clearly identified as a Minimum Goal -Clear guidance that rest breaks are okay during exercise -YouTube videos to be provided with post-test materials -Protocol will be developed for handling setbacks and deviations from exercise training schedule or “Track” -Directions for warm-up and cool-down will be added to Training Manual -Directions for RPE Scale will be added to Training Manual -15 resistance training exercises now approved with one directly related to transferring (Participants will choose 10) -Stretching Manual in the first Newsletter |
| Equipment | -Digital and print Training Manual -Other equipment for resistance training (i.e., dexterity and set-up issues) -Clear instructions for setting up bands -Instructions for setting up ergometer -Spirometer |
-Option to complete resistance training exercises without weight to learn movements -Cycle ergometer may be boring or not intense enough -Lightweight ergometer option may promote independence |
-Training Manual content is great and includes thorough information -Proposed demonstration of resistance training via videos -Resistance bands are a good tool (i.e., measurable and adaptable) -Bands with handles and wrist/ankle strap -Cycle ergometer is best option for aerobic training equipment that is low cost, measurable, and adaptable (resistance options needed and forward/backward capability) -Fitness tracker is valuable tool |
-Options for print and digital versions of all materials will be created and offered -Wrist weights included as resistance training equipment -Demonstration videos being created for all resistance training exercises that include set-up Instructions and modifications such as unweighted variations -Instructions for setting up cycle ergometer will be added to Training Manual -Spirometer included as “Other Beneficial Exercise” in Newsletter 3 instead of 9. |
| Coaching | -Coach of each gender and allow participants to choose coach -Weekly group meeting with peers in program -Questions to discuss with coach at end of each Newsletter |
-Coaching options: Physical/Occupational Therapists who know about MS or peers with MS -Newsletter terminology such as “tired” and “slips” -Gender of individual described in newsletter “Experience with Exercise and MS” |
-Accountability from coaching is key to success -Newsletters were great, need to be spaced well, encouragement from “Experience” narratives, colors and diagrams great -“Experience” narratives placed in the beginning was appropriate -Various types of “Tips” -“Other Beneficial Activities” were good -Road map add visual appeal |
-Future coaches may be successful participants from the feasibility study -Include feedback regarding preference for peer interaction during exit interviews -Questions to discuss with coach added to end of each newsletter -“Tired” changed to “Fatigued” where appropriate -“Slips” changed to “Setbacks” where appropriate -Gender of “Experience” narratives consistent with MS demographics |
| Outcomes | -Pre- and post-test questionnaires should focus on: self-esteem, emotions, independence, depression, symptoms (e.g., spasticity, strength, mobility, fatigue), and transfers -Weekly symptom checklist with coach |
N/A | -Post-test semi-structured interviews with research team member who was not a coach will be valuable | -Pre-Post Questionnaire will include: emotional health (e.g., depression, anxiety, and self-esteem), independence (with transfer-specific item/scale), comprehensive symptom checklist -Coaches will ask weekly about symptom status during coaching calls |
Notes. RPE= Rate of Perceived Exertion