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| ID | Type | Description | Link |
|---|---|---|---|
| #IDD-2024C1-37360 | Other Grant/Funding Number | PCORI | |
| Protocol Version 12/19/25 | Other Identifier | UW Madison | |
| SOE | Kinesiology Operations | Other Identifier | UW Madison |
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| Name | Class |
|---|---|
| Patient-Centered Outcomes Research Institute | OTHER |
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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Comprehensive Community Health (CCH) Intervention | Experimental | Participants will receive CCH |
|
| Standard of Care | Active Comparator | Participants will receive standard ongoing Special Olympics sport and health programming |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Comprehensive Community Health | Behavioral | Participants will receive group health coaching, psychoeducation, and group health education. |
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| Measure | Description | Time Frame |
|---|---|---|
| Change in Goal Attainment Scaling (GAS) | 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). | Baseline to 1, 3, 6, 12, and 18 months |
| Measure | Description | Time Frame |
|---|---|---|
| Change in number of doctor visits | Participants will self-report how many times they visited their adult or family-care practitioner over the course of the study | Baseline, 1, 3, 6, 12, and 18 months |
| Change in number of routine health check-ups |
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Inclusion Criteria - Special Olympic Athletes:
Inclusion Criteria - Care Partner:
Exclusion Criteria - all:
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Karla Ausderau, PhD | Contact | 608-262-0653 | kausderau@wisc.edu |
| Name | Affiliation | Role |
|---|---|---|
| Karla Ausderau, PhD | University of Wisconsin, Madison | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Department of Kinesiology, University of Wisconsin | Madison | Wisconsin | 53706 | United States |
Coded data will be submitted to the Patient-Centered Outcomes Data Repository (PCODR) at the Inter-university Consortium for Political and Social Research (CPSR) at the University of Michigan, as required by PCORI. The shared dataset will include participant-level quantitative data, relevant study documentation, and supporting materials necessary to enable secondary analyses. Prior to submission to PCODR, all data will be de-identified but will have study ID codes. Direct identifiers will be removed, and dates will be generalized or shifted as appropriate to minimize re-identification risk.
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| Regular Special Olympics programming | Other | Standard practices for those participating in Special Olympics |
|
Participants will self-report whether they received routine care throughout the study
| Baseline, 1, 3, 6, 12, and 18 months |
| Change in number of participants with intellectual and/or developmental disabilities that follow-up with their primary physician | 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. | Baseline, 1, 3, 6, 12, and 18 months |
| Change in quality of life - "Healthy Days Measure" | 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. | Baseline, 1, 3, 6, 12, and 18 months |
| Change in healthcare access satisfaction | 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. | Baseline, 3, 12, and 18 months post-intervention |
| Change in healthcare use satisfaction | 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. | Baseline, 3, 12, and 18 months post-intervention |
| Change in self-advocacy | Participants will be interviewed regarding their perceptions and understanding of health self-advocacy. | Baseline, 3, 12, and 18 months post-intervention |
| ID | Term |
|---|---|
| D008607 | Intellectual Disability |
| D002658 | Developmental Disabilities |
| ID | Term |
|---|---|
| D019954 | Neurobehavioral Manifestations |
| D009461 | Neurologic Manifestations |
| D009422 | Nervous System Diseases |
| D012816 | Signs and Symptoms |
| D013568 | Pathological Conditions, Signs and Symptoms |
| D065886 | Neurodevelopmental Disorders |
| D001523 | Mental Disorders |
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