Innovative Web-Based Future Planning and Well-Being for Caregivers of Individuals With Intellectual and Developmental Disabilities: Protocol of a Pragmatic Randomized Controlled Trial
Bibliographic record
Abstract
BACKGROUND: Nearly three-quarters of the estimated 4.9 million people with intellectual and developmental disabilities (IDDs) in the United States live with family caregivers, 25% of whom are aged older than 60 years. People with IDDs experience disproportionately high rates of mortality, morbidity, and acute care use, often due to a lack of accessible, tailored resources to support them throughout the lifespan. Few caregivers engage in long-term care (LTC) planning, often due to a lack of information and support. OBJECTIVE: This protocol describes the design and methods of the Future Planning and Well-Being for Individuals with Intellectual Disabilities and Family Caregivers study, a randomized controlled trial evaluating the effectiveness of the Map Our Life web-based LTC planning tool compared to an attention control website on caregiver-reported burden, caregiver-reported well-being, and progress in and communication of future plans for the individual with an IDD. METHODS: The Future Planning and Well-Being for Individuals with Intellectual Disabilities and Family Caregivers study is a national, multisite, randomized controlled clinical trial with a target enrollment of 1050 family caregivers of individuals with IDDs at 6 sites across the United States. Participants are randomly assigned (1:1) to either the Map Our Life web-based LTC planning tool plus enhanced usual care or an attention control group consisting of a Centers for Disease Control and Prevention-sponsored health promotion website for people with disabilities plus enhanced usual care. Primary outcomes, including caregiver-reported burden, caregiver-reported well-being, and LTC planning behaviors, are assessed at baseline and at 1, 6, and 18 months. Data will be analyzed using mixed-effects models to accommodate the repeated measures design. RESULTS: This study was funded in July 2022, received initial Institutional Review Board approval in August 2023, and was registered on ClinicalTrials.gov in December 2023. Recruitment began in December 2023 and is scheduled to conclude in December 2025. Primary outcome analyses will commence immediately following the completion of final follow-up surveys. CONCLUSIONS: LTC planning is an important component of addressing health disparities among individuals with disabilities and their family caregivers. By focusing on using an innovative and accessible tool for LTC planning, the study addresses a critical gap in available resources with the potential to improve quality of life and reduce caregiver burden. TRIAL REGISTRATION: ClinicalTrials.gov NCT06065527; https://clinicaltrials.gov/study/NCT06065527. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/77184.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.045 | 0.047 |
| Meta-epidemiology (narrow) | 0.007 | 0.004 |
| Meta-epidemiology (broad) | 0.013 | 0.007 |
| Bibliometrics | 0.004 | 0.004 |
| Science and technology studies | 0.004 | 0.004 |
| Scholarly communication | 0.007 | 0.005 |
| Open science | 0.005 | 0.003 |
| Research integrity | 0.010 | 0.011 |
| Insufficient payload (model declined to judge) | 0.075 | 0.010 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".