ArticleJMIR research protocols2025
Optimizing a Personalized Health Approach for Virtually Treating High-Risk Caregivers of Children With Neurogenetic Conditions (Project WellCAST): Protocol for a Randomized Controlled Trial.
Article in JMIR research protocols, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. It is linked to trial NCT05999448 (Optimizing a Personalized Health Approach for Virtually Treating High-risk Caregivers During COVID-19 and Beyond), which is not on this map. Cited by 2 papers.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Optimizing a Personalized Health Approach for Virtually Treating High-risk Caregivers During COVID-19 and Beyond
Who cites it
2 citing papers in PubMed.
- Examining the daily experiences of parents caring for children with rare neurogenetic conditions using over 18,000 ecological momentary assessments.Scientific reports · 2026Article
- Measuring Patient-Reported Acceptability Outcomes via the Program Acceptability Tool for Telehealth.Telemedicine journal and e-health : the official journal of the American Telemedicine Association · 2025Article
Corrections and comments
- Erratum issued
Authors and funding
23 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundEven before the COVID-19 pandemic, caregivers of children with rare neurogenetic conditions (NGCs) experienced physical and mental health challenges. These challenges escalated during the COVID-19 pandemic due to crisis-level breakdowns in support services. Tele-mental health and parenting support services expanded rapidly in response to the COVID-19 pandemic and may be well suited to facilitate necessary support interventions for NGC caregivers. However, it remains unclear how to match these evidence-based interventions to individual NGC caregivers' needs.
objectiveProject WellCAST (Supporting Well-Being of Caregivers via Telehealth) is an early-phase clinical trial designed to prospectively test which evidence-based telehealth interventions best meet the needs of NGC caregivers.
methodsInterested and eligible NGC caregivers are enrolled in a 24-week program with 5 phases, including baseline (2 weeks), support program (12 weeks), and follow-up (2 weeks) periods; a 4-week gap separates the phases. Caregivers participate in 2 randomizations, namely support program assignment via a precision health algorithm versus quasi-random assignment and motivational coaching by another NGC caregiver and project staff member ("peer coaching") versus standard check-ins by a staff member who is not an NGC caregiver ("staff coaching"). Virtual support programs include acceptance and commitment therapy, dialectical and behavioral therapy, culturally informed cognitive behavioral therapy, research units in behavioral intervention, naturalistic communication intervention, Durand sleep intervention, and self-guided resources. A subset of caregivers will participate as waitlist controls before engaging in support programs. We developed and optimized a personalized health decision tree algorithm that matches caregivers to telehealth support programs. We then proceeded to test the feasibility and efficacy of algorithm-assigned support programs across 4 waves of data collection, relative to quasi-random assignment and waitlist controls. During each wave, the personalized health algorithm relies on 2 weeks of baseline data collection using clinical tools and innovative smartphone-based ecological momentary assessments. Across waves, we also test the efficacy of a motivational peer-to-peer coaching protocol, deployed by trained NGC caregiver staff, in enhancing support program uptake and clinical outcomes.
resultsFour waves of data collection are scheduled for August 2023 to September 2025. Preregistered analyses will contrast feasibility, efficacy, and acceptability across algorithms and coaching assignments. Multiple waves of data collection will allow us to continually optimize the algorithm and test incremental improvements across project phases. Secondary analyses will probe the feasibility and efficacy of individual evidence-based support programs and peer coaching.
conclusionsProject WellCAST will test whether a digital personalized health decision tree algorithm and peer coaching protocol can prospectively enhance telehealth support program outcomes among NGC caregivers. This project is relevant to the specific population of NGC caregivers and may also inform how brief digital assessments, precision health tools, and community-academic partnerships can enhance the public health response to mental health crises across other high-need populations.
trial registrationClinicalTrials.gov NCT05999448; https://clinicaltrials.gov/study/NCT05999448 and OSF Registries 10.17605/OSF.IO/8WNDP; https://osf.io/8wndp. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/64360.
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