Attrition in a telehealth caregiver-mediated behavioral intervention for children with tuberous sclerosis complex: A
Carly Hyde Tillis1, Connie Kasari2, Nicole McDonald3
1Department of Health Policy and Management, University of California, Los Angeles, California, USA.
Insights
Caregiver burden and medical crises, not socioeconomic factors, influenced attrition in a telehealth intervention for children with tuberous sclerosis complex (TSC). Additional support is needed for sustained engagement in these behavioral interventions.
Area of Science:
- Pediatric Neurology
- Behavioral Health
- Telemedicine
Background:
- Tuberous sclerosis complex (TSC) presents significant challenges for young children and their caregivers.
- Caregiver-mediated behavioral interventions are crucial for managing TSC symptoms.
- Telehealth delivery models offer accessibility but face unique engagement challenges.
Purpose of the Study:
- To identify factors contributing to attrition in a telehealth, caregiver-mediated behavioral intervention for children with TSC.
- To explore the interplay between quantitative and qualitative data in understanding attrition patterns.
Main Methods:
- A randomized waitlist-control trial involving 59 children (12-39 months) with TSC and their caregivers.
- Convergent parallel mixed-methods design integrating quantitative (negative binomial regression) and qualitative (thematic analysis) data.
- Investigated session completion rates and factors influencing caregiver engagement.
Main Results:
- Higher seizure severity and COVID-era enrollment were exploratory predictors of fewer completed sessions.
- Socioeconomic status, ethnicity, and geographic distance were not significantly associated with attrition.
- Qualitative data identified medical crises and caregiver burden as primary reasons for attrition.
Conclusions:
- Socioeconomic, ethnic, and geographic factors did not significantly predict attrition in this underpowered study.
- Families of children with complex developmental disabilities require tailored support for sustained engagement in telehealth interventions.
- Attrition is multifaceted, necessitating refined measurement tools for comprehensive understanding.
Aim:
To examine factors contributing to attrition in a telehealth, caregiver-mediated behavioral intervention for young children with tuberous sclerosis complex (TSC).
Method:
This randomized waitlist-control trial (n = 59) included children (12-39 months) with TSC and their caregivers. A convergent parallel mixed-methods design investigated factors influencing attrition. Quantitative analyses used negative binomial regression to explore predictors of session completion; qualitative data were thematically analyzed and integrated with quantitative patterns to complement and expand findings.
Results:
Negative binomial regression did not yield a significant overall model and explained limited variance. Two candidate predictors showed exploratory associations with fewer completed sessions: higher seizure severity (incidence rate ratio [IRR] = 0.95, p = 0.046) and COVID-era enrollment (IRR = 0.77, p = 0.046). Distance to site and socioeconomic risk were not associated with attrition. Qualitative data reinforced medical crises as primary reasons for attrition and expanded on perceived benefit and other factors contributing to overall caregiver burden.
Interpretation:
In this clinical trial, socioeconomic, ethnic, and geographic factors were not associated with attrition, although the study was underpowered to detect small or moderate effects. Families of children facing complex developmental disability may nonetheless require additional adaptation and support to sustain engagement in telehealth caregiver-mediated interventions. Mixed-methods integration highlighted the multifaceted nature of attrition and the need for more precise measures to understand it.