Developmental medicine and child neurology · 2026
Attrition in a telehealth caregiver-mediated behavioral intervention for children with tuberous sclerosis complex: A mixed-methods study.
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Tillis Carly Hyde, Kasari Connie, McDonald Nicole, Vobecky Monique, Pizzano Maria, Panganiban Jonathan, Gharapetian Brandon, Tran Elise Y, Nelson Charles A, Thiele Elizabeth A, Jeste Shafali
Аннотация
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.
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.