With loss of mobility in multiple sclerosis (MS) comes an increase in amount and types of caregiver assistance, with a concomitant increase in burden for the caregiver (1). In fact, effect on caregiver burden can be seen as a potential indicator of the efficacy of MS management (1), suggesting that the caregiver is an appropriate and independent target for MS therapeutic strategies (2). MS patients report difficulty implementing and continuing with home exercise, mobility, and walking programs. This feasibility study will test integration of a successful behavioral caregiving intervention into clinical practice to improve functioning of Veterans with multiple sclerosis (MS) and their Caregivers. Caregivers of Veterans with MS will receive a behavioral caregiver intervention designed to address caregiver coping and management of patient concerns, with special focus on patient mobility and walking. A pre-post intervention design will compare outcomes for Veterans and Caregivers. For Veterans, the intervention will target Caregiver participation in home-based Veteran mobility activities. Outcomes for Veterans will include the six minute walk test, timed up and go test (TUGT), self-efficacy, and depression. MS Caregivers report high burden, stress, and depression involved in caring for their loved ones, especially as mobility declines (3-5) and these outcomes are related to physical and emotional health status of the patient (2). For Caregivers, the intervention will focus on improving Caregiver coping and on managing MS-related problems. Outcomes for Caregivers will include depression, burden, anxiety, and number of Veteran MS problems and safety alerts reported, measured at baseline, 3 months, and 6 months. Study Objectives include: 1) Test whether a caregiver intervention can be integrated into an MS clinical setting. 2) Determine whether Caregiver outcomes are improved. 3) Determine whether Veteran outcomes are improved. 4) Determine which types of Caregivers will benefit most. 5) Determine which types of Veterans will benefit most. 6) Refine materials for future clinical research, translation and implementation. Hypotheses are related to both Veteran and Caregiver: Hypothesis 1: Veterans of Caregivers who receive the intervention will have significant improvement in outcomes including the six minute walk test, timed up and go test (TUGT), self-efficacy, and depression. Hypothesis 2: Caregiver participants will have significant improvement in outcomes including depression, burden, anxiety, and number of Veteran MS problems and safety alerts reported.
About 30,000 Veterans using VHA have been diagnosed with MS. Approximately 80% of MS patients will experience problems with mobility. Loss of mobility, particularly walking ability, leads to decreased independence and productivity, loss of self-efficacy and decreased quality of life. Between 80 and 90% of informal care for MS patients occurs in the home. Decreased mobility also leads to increased caregiver burden and decreased quality of life, causing caregiver burnout. The more severe the MS symptoms, the higher the cost and the higher the burden on the caregiver. MS patients with supportive caregivers report better adherence to medication regimens and disease modifying therapies. Providing caregivers with education, support, and coping skills can help increase quality of life for both the caregiver and care recipient. With these skills, caregivers can encourage and assist Veterans in maintaining functional ability.
