A Concerns Report Survey of Physical Activity Programming Needs and Priorities of People with Moderate-to-Severe MS-Disability and Family Caregivers

Background: Research suggests that chronic diseases such as multiple sclerosis (MS) can impact both caregivers and care-recipients, and that caregiver-care-recipient dyads that engage in physical activity (PA) together are more likely to experience better adjustment. However, the utility of a PA intervention that supports joint engagement of people with moderate-to-severe MS-related disability and family caregivers is currently unknown. 

Objectives: As a first step to exploring the potential for a dyadic PA intervention in MS, we aimed to identify the PA-related needs and priorities for intervention among the target groups.

Methods: A cross-sectional survey study guided by the Concerns Report Method. Participants were recruited across Canada using various methods. Inclusion criteria for PwMS were: i) ≥18years of age; ii) self-reported diagnosis of MS and iii) moderate-to-severe MS-disability, with Patient Determined Disease Step (PDDS) score of 3-6. Inclusion criteria for caregivers were: i) ≥18years of age and ii) provide ~45mins/day of assistance to a PwMS with a PDDS score of 3-6. Data were colllected about routine PA and barriers to sole engagement (i.e. PwMS/caregivers alone) and co-participation (i.e. PwMS and caregivers together) in PA. Data were also collected on the importance of and satisfaction with PA programs and services in the community. Data were analyzed using descriptive statistics. A Need Index score that prioritized each groups’ perceived needs was generated.

Results: To date, 61 PwMS and 40 caregivers have completed the surveys. PwMS were predominantly female (75%), aged between 45-54 years old (38%) with relapsing remitting MS (39%). Caregivers were predominantly male (57%), spouses (72%) and aged between 45-54 years old (33%). Preliminary findings indicate that PwMS and caregivers took part in various forms of PA. For the PwMS, participation rates ranged from 13% (swimming) to 72% (walking). For caregivers, participation rates ranged from 16% (weight training) to 70% (walking). Among PwMS, the highest priorities based on the Needs Indexes were programs that: 1) support joint participation with caregivers in PA (76%); 2) have knowledgeable facilitators (64%) and 3) affordable cost (52%). Among caregivers, the highest priorities were programs that: 1) provide opportunities to learn about options to incorporate PA into daily life (78%); 2) have affordable costs (60%) and 3) support joint PA participation (54%).

Conclusions: Preliminary findings indicate shared areas of concern among PwMS and caregivers. Targeting these shared areas of concern in PA interventions offers a starting point for promoting regular engagement in PA in caregiver-care-recipient dyads affected by moderate-to-severe MS-disability. Findings on barriers to sole-engagement and co-participation in PA will be presented.