Developing a community-engaged wheelchair exercise program for persons with MS: Community Advisory Board formation and feedback

Abstract

Purpose:

Exercise is a safe, evidence-based approach for improving symptoms such as mobility impairment, cognitive dysfunction, and fatigue; however, persons with multiple sclerosis (MS) who use wheelchairs for mobility have been excluded from most research. This paper describes our approach for recruiting ten community advisor board (CAB) members and partnering with them on developing a novel home-based exercise training program for wheelchair users with MS.

Materials and Methods:

The exercise training program, which was developed based on initial qualitative research, includes a progressive exercise prescription, equipment, and one-on-one behavioural coaching based on Social Cognitive Theory. The CAB members convened in groups of five people for five meetings online, using virtual conference software. The CAB meetings each lasted approximately 1-hour and notes were transcribed into digital format for data analyses.

Results:

Content analysis identified elements that aligned with meeting foci (i.e., prescription, equipment, coaching, and outcomes). Feedback was divided into categories to refine the program, specifically modifying, adding, or retaining content and/or activities. CAB member feedback was very positive and emphasized potential additions to the materials presented. The research team proposed implementing modifications based on the CAB member feedback such as adding wrist weights to the equipment options for completing resistance training exercises.

Conclusions:

The overall CAB feedback was invaluable for assessing the appropriateness of the proposed exercise training program before initiating feasibility testing. This report provides a model and guidance for researchers who seek community-engaged research approaches in creating products and interventions.

Introduction

Multiple sclerosis (MS) is an immune-mediated, neurodegenerative disease of the central nervous system [1] with an estimated prevalence of 1 million adults in the United States [2]. Common outcomes of MS include mobility impairment, cognitive dysfunction, chronic fatigue, bowel and bladder dysfunction, and emotional dysregulation [1]. Mobility impairment often begins with mild manifestations such as drop foot or leg weakness that may require assistance from an ankle foot orthotic or use of cane in the community. However, due to the progressive nature of MS, most individuals eventually transition into a progressive clinical course and require use of a wheelchair for mobility within 30 years of an MS-diagnosis [3]. Recent data indicate that approximately 32% of adults with MS use a wheelchair as the primary mobility device (i.e., 50% or more of their mobility needs throughout the day) [4].

Exercise training has been identified as a promising and safe rehabilitation approach for managing the consequences of MS, particularly mobility impairment [5, 6]. Yet, there is substantial evidence for physical inactivity in MS, and the rate of physical activity participation declines with increasing levels of mobility impairment [7–9]. This motivated the development of recent guidelines for physical activity in MS by the National Multiple Sclerosis Society, and those guidelines provided the first set of recommendations for those with severe mobility disability (i.e., wheelchair users) [10]. Nevertheless, the guidelines for wheelchair users with MS were based largely on expert opinion, as there was limited evidence on exercise in this segment of the MS population [10].

Second-line approaches such as exercise are critically needed for wheelchairs users with MS given the paucity of rehabilitation approaches available for this segment of the MS population. For example, it was only within the past 5 years that any disease modifying therapies were deemed efficacious for individuals with progressive clinical course [11]. One recent systematic review highlighted benefits of adapted exercise among adults with severe MS including significant improvements in disability, physical fitness, physical function, and/or symptomatic and participatory outcomes [12]. There is a growing body of evidence that wheelchair users with MS are keenly aware of the potential benefits of exercise, however foundational qualitative inquiry underscores significant barriers to participation such as inaccessibility of the physical environment and dependence on tangible support from caregivers to engage in exercise [13]. The next step in this line of research was to consider barriers and disease course among wheelchair users with MS to create accessible opportunities for exercise that may improve overall health, MS symptoms, and community participation.

The creation of exercise programs for wheelchair users with MS should emphasize community-engaged research methods that integrate communities of interest in novel intervention development and adaptations [14]. Community-engaged approaches involve the population of interest in the research process and require partnership in development, cooperation and negotiation, collaboration between community partners and researchers, and commitment to addressing health issues [14]. Community partners help ensure that interventions meet the needs of populations and provide opportunities for open discussion regarding lived experiences that can guide approaches for promoting inclusion.

The current study is founded on a research agenda for developing a wheelchair exercise program for persons with MS using a community-engaged approach. The initial step in this research was a qualitative study wherein semi-structured interviews were conducted with 20 wheelchair users with MS [15]. Figure 1 provides a summary of the study results. Participants expressed interest in aerobic and strength training exercises that could be completed in home or community settings [15]. The participants believed a frequency of at least 2 times per week with a duration of 15–30 minutes would provide substantial benefits [15]. Additionally, participants emphasized the need for independence in implementation of exercises and accountability for long-term behaviour change [15].

Figure 1.

Summary of reported exercise preferences from foundational qualitative study

Figure breaking down the primary components of “Context,” “Prescription,” and “Outcomes.” Context includes community- and home-based topics, Prescription includes mode, frequency, duration, and intensity as well as a list of Rehabilitation Therapies, and Outcomes include a list of proposed benefits.

This paper outlines the next step in our community-engaged approach for gathering feedback for the development and modification of our proposed exercise program. This next step involved the recruitment, experiences, and feedback of a Community Advisory Board (CAB) for assessing the appropriateness of the proposed exercise program materials and research protocols.

Materials and Methods

Exercise Training Intervention Overview

The proposed exercise training program integrates preliminary qualitative inquiry [15] with an existing pragmatic clinical trial curriculum (STEP for MS; NCT03468868) [16]. STEP for MS is a Patient Centered Outcomes Research Institute (PCORI) funded program that uses a structured exercise template and behavioural coaching based on Social Cognitive Theory (SCT) for promoting aerobic and strength training in persons with MS who experience mobility disability [16]. SCT is a social learning theory that posits a dynamic, reciprocal interaction between individuals, environment, and behaviour and emphasizes the influence of observational learning, self-efficacy, outcome expectations, social support, and barriers on health behaviour change [17]. SCT has been widely applied for behavioural interventions promoting physical activity in MS [18]. The STEP for MS program is feasible for home delivery [19] and includes the primary modalities that align with our qualitative interview feedback (i.e., strength and aerobic training); this provided an appropriate template for creating a wheelchair exercise program [16]. The 16-week program includes one-on-one video chats with a behavioural coach and various “tracks” for progressive increases in both strength and aerobic training [16]. There are 3 primary components of the STEP for MS program that were adapted for this novel wheelchair exercise training program: Prescription, Equipment, and Coaching (Figure 2). The research team worked with an exercise trainer who is a Certified Special Population Specialist to identify and select the most appropriate strength and aerobic training protocols. The proposed strength training included 10 exercises with step-by-step instructions using resistance bands that were adapted to be executed in a wheelchair. The proposed resistance training exercises include short demonstration videos regarding set-up of resistance bands and proper form, supplemented during one-on-one meetings with the behavioural coach to address questions, progressions, and further demonstrations to promote knowledge and safety. The proposed aerobic training is arm cycle ergometry; this is a low-cost and modifiable option that fits the needs of both power and manual wheelchair users. Other proposed equipment includes a comprehensive Training Manual, fitness tracker for use during exercise training sessions, and Rate of Perceived Exertion (RPE) scale for guiding individualized exercise intensity. All exercise training instructions and considerations for safety of exercise are outlined in the Training Manual. Additionally, the research team created 12 Newsletters that align with 12 proposed coaching calls and serve as the primary educational curricula. Newsletter topics include: Benefits of Exercise, Self-Monitoring, Goal-Setting, Self-Efficacy, Outcome Expectations, Barriers, Facilitators, Social Support, Problem Solving, Managing Slips, Maintaining Change, and Moving Forward. All program materials were drafted before CAB recruitment.

Figure 2.

Summary of exercise training program components

SPIN program logo is on the right with branches to the middle that include the main categories of “Prescription,” “Equipment,” and “Coaching.” Each category is broken down to the right into granular components within the training program.

CAB Participants

The research team targeted 10-15 community advisors based on our previous experience developing health promotion programs using community-engaged approaches [20, 21]. Potential participants were identified from a list of interested individuals who completed an epidemiological study for wheelchair users with MS in our research laboratory. We contacted a subsample of 20 participants via e-mail who were diverse in terms of the following criteria: gender, self-reported physical activity level, type of wheelchair, and geographic location. Thirteen individuals responded to the initial e-mails, though three individuals expressed scheduling conflicts. Therefore, telephone screening was completed with 10 interested individuals. CAB participants were split into 2 groups of 5 members that met for 5 consecutive weeks via Zoom in September and October 2020. Six participants attended all 5 sessions. One participant missed 2 sessions because of fires in their geographic area. One participant missed the first session because he did not remember. Two participants missed the last session but agreed to participant in a make-up session together convened by the first author. The CAB protocol was approved by a University Institutional Review Board and participants were not required to provide consent given meetings were not recorded and participants were considered consultants rather than human subjects. CAB participation was voluntary; participants did not receive financial compensation.

CAB Meetings

The CAB meetings were led by the first author with the last author present at 5 of the 10 meetings. Meetings were scheduled for 1.5 hours. Before each meeting, the first author created an agenda that was distributed to the CAB members along with materials to be discussed. The first meeting included a PowerPoint Presentation providing an overview of the research team, introductions, and rules of engagement for Zoom meetings. Meeting 2 focused on discussing the Prescription wherein participants received a draft of the Training Manual to guide a conversation about the strength and aerobic training prescriptions. Meeting 3 focused on Equipment, namely the cycle ergometer, resistance bands, fitness trackers, and RPE scale. Meeting 4 was centred on Coaching and participants were provided with the 12 drafted Newsletters and logbook. The first author drafted a list of proposed changes and feedback that were discussed during Meeting 5 in addition to potential outcomes of interest to measure in future trials.

Data Summary and Analyses

The first author kept detailed, hand-written notes throughout each meeting that were then transcribed to digital form within 24 hours; a summary of notes were reviewed for completeness during Meeting 5 with each group. Content analyses were applied to the notes to identify elements that aligned with agreed upon themes regarding CAB preferences and feedback for each primary component of individual meetings: (i) Prescription, (ii) Equipment, (iii) Coaching, and (iv) Outcomes [22]. Within each theme, we divided the feedback into categories: (i) consider modifying, (ii) consider adding, and (iii) keep as designed [23]. These areas were chosen with the primary aim to integrate CAB suggestions and potential modifications.

Results

CAB Participants

Demographic and clinical characteristics for the 10 CAB members are provided in Table 1. Briefly, participants mean age was 61 years old (range 41-75) and mean MS duration was 22 years (range 9-40). Nine participants identified as Caucasian and one participant identified as African American. All participants had progressive MS but were evenly split between primary and secondary progressive clinical courses. As part of the participant recruitment design, half of the participants were female, and half used manual wheelchairs as a primary mobility device. Participants were diverse in terms of geographic region and represented all 5 regions of the United States: Southeast (n=3), Northeast (n=3), West (n=2), Southwest (n=1), Midwest (n=1).

Table 1.

Community Advisory Board Member Demographic and Clinical Characteristics

ID	Age	Gender	Race	Region	Type MS	Disease Duration	Type Wheelchair
1	60	Female	Caucasian	West	PPMS	10	Manual
2	75	Male	Caucasian	Southeast	SPMS	40	Manual
3	71	Male	Caucasian	West	PPMS	27	Manual
4	72	Female	Caucasian	Northeast	PPMS	24	Power
5	41	Female	Caucasian	Southwest	SPMS	9	Manual
6	71	Male	Caucasian	Northeast	PPMS	18	Manual
7	49	Female	Caucasian	Southeast	SPMS	10	Power
8	53	Male	African American	Midwest	SPMS	30	Scooter
9	62	Male	Caucasian	Southeast	PPMS	15	Power
10	59	Female	Caucasian	Northeast	SPMS	36	Power

Note. PPMS= Primary Progressive Multiple Sclerosis; SPMS= Secondary Progressive Multiple Sclerosis

Content Analysis of CAB Feedback

Results from the content analyses are presented in Table 2 and organized by prescription, equipment, coaching, and outcomes.

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

Prescription

The exercise training program curriculum goals were 30 minutes of moderate intensity aerobic activity, 2 times per week and strength training exercises for major muscle groups, 2 times per week based on the Physical Activity Guidelines for Persons with MS [24] and our preliminary qualitative study [15]. CAB Member 2 was active and expressed concerned that the goal was not challenging. The research team clarified that proposed inclusion criteria would specify that participants must be physically inactive (i.e., below these targets). Alternatively, CAB Member 5 was concerned that 30 minutes of continuous aerobic training would be too challenging and suggested splitting up bouts of aerobic activity (e.g., 15 minutes, 4 days per week). Our proposed modification was to clearly identify the final goal of 30 minutes of moderate intensity aerobic activity, 2 times per week as a minimum target with flexibility for adapting the bouts to reach the 60 minute per week target. Additionally, clear guidance will be provided in Training Manual and coaching calls that rest and/or breaks during exercise training sessions are appropriate.

The major concern regarding resistance training exercises was including lower body exercises that may not be adaptable for persons with no or limited lower body functioning. We worked with the CAB members to identify a menu of 15 resistance training exercises, 10 of which did not require low-body functioning. Participants will work with the coach to choose 10 exercises that are appropriate for personal goals and capabilities. One of the proposed additional exercises was a seated hold with arms extended that directly translates to transfers and seated pressure release.

The participants noted the unpredictable nature of MS disease and symptoms and suggested including a protocol for handling unforeseen setbacks. The research team will develop and publish a protocol for handling missed exercise sessions of various lengths and guidance on resuming the program. Other suggested additions to the Training Manual were heat safety information, and guidance on warm-up, cool-down and stretching. Participants generally liked the RPE scale for individualized rating of exercise session intensity but suggested clear directions in the Training Manual that specify its use as an overall rating across an exercise session.

Equipment

Proposed equipment includes the Training Manual, Arm Ergometer, Resistance Bands, Fitness Tracker, and RPE Scale. CAB members reported positive perceptions of the Training Manual. The primary concern was whether materials would be digital or printed. The research team plans to provide participants with the option for printed materials to be mailed or digital, fillable PDFs; the CAB members verified that these options would meet their needs and preferences.

Across the 5 meetings, the group spent a considerable amount of time discussing the cycle ergometer. CAB members liked the idea of using a lighter weight cycle ergometer that could be moved independently. CAB Member 2 suggested adding existing YouTube videos for aerobic exercise to be more interactive, but in a later meeting agreed that the cycle ergometer was the best option for a measurable, low-cost, and adaptive aerobic training stimulus in this population. CAB Member 5 expressed that the program provides a good gateway to get people started and then participants could move on to other activities in the future. This resulted in the proposed modification to provide the YouTube videos as exit material when participants complete the program.

CAB Members generally liked the proposed resistance bands that include handles and wrist/ankle strap. CAB Member 5 suggested that some participants may be encouraged to complete exercises without any resistance while learning the movements. CAB Member 1 suggested wrist weights as an alternative, low-cost piece of equipment for completing resistance training exercises, and we plan to include these in the feasibility study materials. As the next study will included a feasibility design, the research team will have the opportunity to pilot multiple materials and obtain further feedback on the most appropriate tools for aerobic and strength training in this population. Additionally, per CAB member suggestions, the research team will include instructions for setting up both cycle ergometer and resistance bands and coaches will assist those participants who may need additional creative solutions to set up equipment in ways that are safe and easy to use.

Most CAB members thought a Fitness Tracker for use during exercise sessions would help monitor progress and offer an additional method beyond RPE for tracking exercise intensity. The final consensus was that the equipment options identified were the ideal low-cost, measurable, and adaptable exercise for this population.

Coaching

The CAB members had very positive feedback on the proposed coaching component based on SCT, noting that coaching will be key for accountability and behaviour change. CAB Member 10 suggested that coaches should be clinicians such as Physical or Occupational Therapists with training in MS. The research team suggested the option of a peer coach, which prompted CAB Member 9’s suggestion that coaches be the same gender or options to choose the gender of the personal coach. The first author presented an idea to include one successful male and one successful female from the feasibility study to be trained as coaches for future studies, and this was supported by the CAB members.

The 12 Newsletters were very well received. CAB members liked the flow of content, visual appeal with appropriate colours and illustrations, and felt encouraged by the section “Experiences with Exercise and MS” narratives at the beginning that provides and account from someone with MS regarding their personal experience. CAB member 3 suggested considering the gender of participants in these stories and we proposed to keep the split consistent with the demographics among persons with MS. CAB Member 5 suggested modifications to terminology, specifically the use of the term “tired” and “slips” that will be changed to “fatigued” and “setbacks.” CAB Member 6 suggested adding in questions at the end of each Newsletter to guide discussion with coach that will be integrated in the Newsletters. Further, the CAB members liked the inclusion of “Tips”, roadmap graphic, and “Other Beneficial Activities” section.

CAB Member 10 suggested a weekly group meeting in Zoom for peer support. The group was divided on how the groups should be structured and whether they would personally attend and benefit from a voluntary group meeting. Our proposed solution was to ask feasibility study participants if they would have preferred a peer support component during post-intervention interviews. This option will provide the opportunity to base this crucial decision on the experiences of participants who complete the feasibility study and the resulting perceptions regarding the necessity for peer support above and beyond the included components for supporting exercise behaviour change.

Outcomes

During the final meeting, we specifically asked CAB members about outcomes that would be important to collect before and after an intervention. Notably, we did not provide a list of outcomes that we planned to include and intentionally kept this portion open-ended. Outcomes suggested by participants included measures of self-esteem, emotions, independence, depression, spasticity, strength, mobility, fatigue, and transfer ability. CAB Member 6 suggested an additional weekly symptom checklist that participants would discuss with the coach and we plan to test this in the feasibility study.

Discussion

This paper outlines the second step in a community-engaged approach for developing an exercise training program for wheelchair users with MS. The CAB members were enthusiastic to contribute ideas and feedback to create a product that would help other individuals living with MS. Such altruism is important as natural history studies estimate that the majority of persons with MS transition into wheelchair use for mobility within 30 years of diagnosis [3], and persons with MS are living longer thereby indicating a substantial need for a community-derived exercise program. To that end, the CAB members served as advisors providing comprehensive feedback on the intervention components and delivery in 5 weekly meetings in groups of 5 members. The perceptions of the program were generally positive, with most of the feedback focused on potential additions to supplement the proposed materials. The goal of this phase of the intervention development was to enhance the quality of the intervention and empower potential end users by incorporating their voice in creating a novel product.

Community-engaged methods are distinct from community-based participatory research methods as both methods involve community partnership, however community-engaged methods encompass a wider scope of approaches in which researchers may approach community members to consult on an investigator-initiated proposal [14]. Such approaches have been utilized in creating exercise training programs in other health disparities populations such as older African American couples and a weight management intervention for women with mobility impairments that included physical activity [21, 25]. Based on previous research and researcher experience, we aimed to recruit 10–12 CAB members that were purposefully recruited to be diverse in terms of demographic characteristics, wheelchair type, and activity level in an effort to engage a representative sample [20, 21]. The CAB members exhibited clear commitment to the partnership given the high attendance rates and good preparation for meetings by reviewing in advance the materials provided by the research team to be able to offer comprehensive and thoughtful feedback based on their perceptions and experiences.

The general feedback on the program was positive with much focused on potential additions to the proposed materials and delivery as opposed to changes. One overarching theme was the need for adaptations and having materials that promote independent engagement in exercise training. CAB members suggested using a lighter weight cycle ergometer to ensure participants could manoeuvre it as needed and including wrist weights or unweighted options for completing resistance training for participants who may not have appropriate doorways for anchoring bands or have difficulty with hand dexterity. The progressive nature of the program is intentional in providing flexibility for MS considerations such as baseline aerobic capacity and symptoms, however CAB members differed in perceptions of the progressive aerobic exercise prescription that seemed to align with activity status and age. Specifically, one participant who was regularly active and retired thought that 30 minutes twice a week was a very low recommendation, whereas another participant who was juggling work and young children was concerned that 30 minutes of sustained activity would be discouraging and not feasible with her schedule. The proposed solution for such discrepancies is adaptability in which coaches will encourage participants to stick with their chosen exercise goals while supporting participant adjustments for needed breaks or other time considerations. Further, the next phase of this research is to test the finalized program for feasibility using a pre-post clinical trial design where the research team will obtain further feedback from participants and glean recommendations from direct experience that can further improve the exercise training program curriculum, delivery, and implementation.

CAB members were enthusiastic about having behavioural coaches support behaviour change. The behavioural coaching components are based on SCT given the strong evidence for the utility of SCT components for physical activity behaviour in persons with MS and other disabilities [26–30]. For example, participants are provided a logbook to self-monitor their exercise throughout the program and Newsletters topics include self-efficacy, outcome expectations, barriers, facilitations, and social support. One component for further development is the level of peer involvement to promote behaviour change and maintenance. The current program includes peer stories in newsletters (i.e., Experiences with Exercise and MS) that CAB members acknowledged as a useful tool for increasing motivation through vicarious experiences, however the including peer coaches or group exercises classes may be key components to explore further during feasibility testing.

The current study builds upon the sparce body of evidence regarding exercise training in wheelchair users with MS. Two previous interventions have been conducted, namely a 12-week centre-based Pilates program and a 3-month home-based manual wheelchair propulsion intervention [31,32]. Both interventions reported modest benefits in secondary outcomes such as posture and strength, however given known barriers to exercise training related to transportation (i.e., tangible support) [31] and inability to use a manual wheelchair among a significant segment of this population [32], we aimed to create an accessible and inclusive program. The CAB members included individuals from the U.S. only, which could limit generalizability on an international scale, however similar approaches to the current study could be used to adapt the program if efficacy is established in future clinical trials research.

This study is not without limitations. We acknowledge that the CAB members were chosen from a convenience sample of individuals who were already involved in research and may not represent the full spectrum of the population of interest. CAB members were not asked to complete a comprehensive demographic questionnaire that would include key variables such as education and employment, which is recommended future research studies to further address generalizability. CAB meetings were not audio recorded, however the research team adapted written notes to digital form within 24 hours of the meetings as an additional review. Further, a summary of group-specific recommendations was provided to the CAB members in the final meeting agenda and reviewed to ensure that all suggestions were included and appropriately addressed. The CAB meetings were initially planned as an in-person activity; however, COVID-19 restrictions and considerations moved all interactions to completely online. We encountered some minor challenges associated with technology that required researcher assistance such as audio issues in Zoom that led to one CAB member attending the first meeting over the phone, however online methods for implementing meetings, interviews, focus groups, etc. have been deemed appropriate and often preferred among persons with MS [33].

Partnership with the CAB provided comprehensive feedback for modifying and tailoring the proposed exercise training program in preparation for an intervention. The CAB members provided invaluable feedback on the content as well as suggestions for advertising the study to reach as many individuals as possible. This report provides a model for other researchers in rehabilitation and health promotion research for implementing community-engaged research approaches in creating other products and interventions. The CAB member enthusiasm and commitment to developing an exercise training program for people with MS who use wheelchairs further validated the pressing need for adaptive and accessible approaches for health behaviour change to improve the lives of persons living with MS.

Implication for Rehabilitation.

• Community advisory board participation was invaluable in creating and modifying a novel exercise training programmes for wheelchair users with multiple sclerosis (MS).

• The current study provides a framework for the creation of exercise interventions for subpopulations of persons with MS that may provide substantial rehabilitation benefits such as improved symptoms and quality of life.

• Health behaviour interventists targeting individuals with disabilities may consider the benefits of recruiting stakeholders from the community in creation of novel programmes.