Developmental Disability, Intellectual Disabilities
Conditions
Keywords
Special Olympics
Brief summary
The purpose of this study is to see if a combination of an educational curriculum and health coaching embedded within Special Olympics improves health outcomes and healthcare access compared to regular Special Olympics sport and health programming for adults with intellectual and/or developmental disabilities.
Interventions
BEHAVIORALComprehensive Community Health
Participants will receive group health coaching, psychoeducation, and group health education.
OTHERRegular Special Olympics programming
Standard practices for those participating in Special Olympics
Sponsors
University of Wisconsin, Madison
Patient-Centered Outcomes Research Institute
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
HEALTH_SERVICES_RESEARCH
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
21 Years to 65 Years
Healthy volunteers
No
Inclusion criteria
- Special Olympic Athletes: * Currently participating in Special Olympics programming at a state agency in the study * Has a medical or educational diagnosis of intellectual and/or developmental disabilities * Between the ages of 21-65 * Has at least weekly contact with a family member or care partner who is willing and able to participate * Fluent in English Inclusion Criteria - Care Partner: * Care partner for the participating Special Olympic Participant/Athlete * At least 21 years of age * Has at least weekly contact with Special Olympic Participant/Athlete who is willing and able to participate * Fluent in English
Exclusion criteria
- all: * Inability to complete an accessible informed assent or consent process * Fluctuating capacity to consent
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Change in Goal Attainment Scaling (GAS) | Baseline to 1, 3, 6, 12, and 18 months | GAS is measured using three participant-identified goals, each assigned a priority weight from 1 to 3 (3=most important goal to participant). At each assessment, each goal is assigned a score from -2 to +2, with 0 representing expected level of attainment and 2 indicating much more than expected level of attainment; goals are assigned a score of -2 at baseline. GAS score levels across all three participant goals are converted into a standardized single GAS T-score for each participant. The range of possible T-scores is 23.56 (all three goals with GAS score of -2) to 76.44 (all three goals with GAS score of +2). |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Change in number of doctor visits | Baseline, 1, 3, 6, 12, and 18 months | Participants will self-report how many times they visited their adult or family-care practitioner over the course of the study |
| Change in number of routine health check-ups | Baseline, 1, 3, 6, 12, and 18 months | Participants will self-report whether they received routine care throughout the study |
| Change in number of participants with intellectual and/or developmental disabilities that follow-up with their primary physician | Baseline, 1, 3, 6, 12, and 18 months | Participants will self-report whether they followed-up with their primary physician using HEALTH 4 ME tools to inform them of risk or concern about their health. |
| Change in quality of life - "Healthy Days Measure" | Baseline, 1, 3, 6, 12, and 18 months | The CDC HRQOL-14 (Healthy Days Measures) scoring involves creating an Unhealthy Days Score by summing days with poor physical and mental health (max 30), and a Healthy Days Score (30 minus unhealthy days); individual items (general health, symptoms like pain, depression, energy) are often scored separately (0-30 for days, 1-5 for general health), with higher scores generally indicating worse health, except for energy/lack of fatigue, where higher is better. There isn't a single, complex summary score, but rather metrics for different aspects of quality of life, reported as means or percentages. |
| Change in healthcare access satisfaction | Baseline, 3, 12, and 18 months post-intervention | Participants will self-report their satisfaction with healthcare access via responses to 3 survey items, scored on a 3-point Likert scale where 1 = easy and 3 = hard. Scores range from 3-9 with lower scores indicating greater satisfaction. |
| Change in healthcare use satisfaction | Baseline, 3, 12, and 18 months post-intervention | Participants will self-report their satisfaction with healthcare use via responses to 3 survey items. Items are scored on a 3-point Likert scale, where 1 = very satisfied and 3 = not satisfied. Scores range from 3-9 with higher scores indicating lower level of satisfaction. |
| Change in self-advocacy | Baseline, 3, 12, and 18 months post-intervention | Participants will be interviewed regarding their perceptions and understanding of health self-advocacy. |
Countries
United States
Contacts
CONTACTKarla Ausderau, PhD
PRINCIPAL_INVESTIGATORKarla Ausderau, PhD
University of Wisconsin, Madison
Outcome results
None listed