A Community Wellness Program for Adults Living With Long-term Physical Disability
Condition: Physical Disability
Study type: Interventional

Summary: 
      For people living with long-term physical disabilities, such as spinal cord injury or
      multiple sclerosis, middle-age (45-64) is a period of great vulnerability for losses in
      function and participation. There is an urgent need to develop and test interventions that
      can be delivered through existing community service agencies to help these people maximize
      their community participation and quality of life. This research will test the efficacy of
      one such intervention in a community trial and, thereby, contribute to our understanding of
      the intervention's effectiveness and mechanisms of action.
    

Detailed description: 
      Middle-age (45-64) is a time of health vulnerability for millions of Americans. More than 50%
      of individuals in the U.S. will have two or more chronic conditions by age 60, contributing
      to increased risk of later disability. However, for individuals with long-term physical
      disabilities (LTPDs) such as spinal cord injury or multiple sclerosis, these risks are
      magnified. This vulnerable population is especially in need of interventions to promote
      community participation and improve disease self-management during midlife.

      Over the past 5 years, our research team has adapted an evidence-based health promotion
      intervention designed for older adults to serve middle-aged and older adults with LTPD. The
      investigators now have a trial version of this intervention (called "EnhanceWellness for
      Disability"; EW-D) with promising findings in pilot testing, ready for a larger community
      trial. Through a new partnership with 3 regional Centers for Independent Living, the
      investigators can now test this program for people with LTPD in 14 counties in the Northwest
      U.S.A.

      The broad, long-term aims of this study are to test the efficacy of this program relative to
      two control conditions (an attention-matched health education control and treatment as
      usual), in 600 community dwelling adults age 45-64 years with LTPD using modern outcome
      scales appropriate for people with LTPD. The primary outcome is the ability to participate in
      valued community activities. The investigators will seek to determine whether the
      intervention was effective and if so, what mechanisms of change drove the effect. In addition
      to self-report, the investigators will also collect objective measures of community activity
      via global positioning system (GPS) and travel diaries, in a randomly selected subset of 300
      participants. This study's specific aims are as follows:

      Specific Aim 1. To determine the efficacy of eight sessions of EW-D, relative to an attention
      control condition or treatment as usual, in middle-aged adults with LTPD. The primary outcome
      will be the self-reported ability to participate in valued community activities.

      Specific Aim 2. To determine if observed intervention effects are due to (1) improved disease
      management self-efficacy, (2) decreased interference due to pain and fatigue, or (3)
      improvements in psychological resilience.

      Secondary Analyses. To determine if 1) intervention effects are maintained at 12 months and
      2) intervention effects can be detected in objective, GPS -based measures of activity
      (quantified as number of trips outside the home, time outside the home, area of travel, and
      activity in established categories). The investigators will also examine the potential
      moderating effects of biological sex on treatment response.

      This approach is consistent with goals described in recent National Institute on Aging (NIA)
      and National Institute of Nursing Research (NINR) program announcements, including those
      calling for age-appropriate interventions to improve self-management of chronic conditions
      (PA 14-344) and those calling for prevention research for adults in midlife (PA-15-098). If
      hypotheses are confirmed, this work would support a program that could be used to promote
      health and wellness in both able-bodied older adults and middle-aged adults with LTPD, which
      would be novel to the field and could improve reach.
    

Intervention name(s): EnhanceWellness for Disability (EW-D); Wellness Education
Intervention type(s): Behavioral; Behavioral
Intervention description(s): Participants work one-on-one with the study Wellness Coach to identify health self-management problems, consider options, develop goals and an action plan, and make adjustments to that plan over time.; Sessions will cover: (1) blood pressure management; (2) smoking cessation; (3) cancer screening; (4) regulation of blood glucose; (5) decreasing LDL cholesterol; (6) physical activity; (7) bone, joint, and muscle health; and (8) immunizations.
Allocation: Randomized
Intervention model: Parallel Assignment
Masking: Single (Outcomes Assessor)
Primary purpose: Supportive Care
Keywords: health promotion intervention; community participation; quality of life; middle age; multiple sclerosis; spinal cord injury; muscular dystrophy; post-polio syndrome