Evidence map›Paper›PMID 42532668›Full record

Trial reportDevelopmental medicine and child neurology2026

Attrition in a telehealth caregiver-mediated behavioral intervention for children with tuberous sclerosis complex: A mixed-methods study.

Carly Hyde Tillis, Connie Kasari, Nicole McDonald, Monique Vobecky, Maria Pizzano, Jonathan Panganiban, Brandon Gharapetian, Elise Y Tran, Charles A Nelson, Elizabeth A Thiele and 1 more

Abstract readRandomized Controlled Trial
PubMed Full text at PMC Publisher
In one paragraph

Trial report in Developmental medicine and child neurology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Trial
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors.

Carly Hyde TillisDepartment of Health Policy and Management, University of California, Los Angeles, California, USA.ORCID https://orcid.org/0000-0001-7935-5784
Connie KasariDepartment of Education, University of California, Los Angeles, California, USA.
Nicole McDonaldSemel Institute for Neuroscience, University of California, Los Angeles, California, USA.ORCID https://orcid.org/0000-0002-8008-6865
Monique VobeckyDepartment of Pediatrics and Neurology, Children's Hospital Los Angeles, Los Angeles, California, USA.
Maria PizzanoGraduate School of Psychology, California Lutheran University, Thousand Oaks, California, USA.
Jonathan PanganibanDepartment of Education, University of California, Los Angeles, California, USA.
Brandon GharapetianSemel Institute for Neuroscience, University of California, Los Angeles, California, USA.
Elise Y TranSemel Institute for Neuroscience, University of California, Los Angeles, California, USA.
Charles A NelsonDepartment of Pediatrics, Boston Children's Hospital and Harvard Medical School, Boston, Massachusetts, USA.
Elizabeth A ThieleDepartment of Neurology, Massachusetts General Hospital, Boston, Massachusetts, USA.ORCID https://orcid.org/0000-0003-3431-4713
Shafali JesteDepartment of Pediatrics, University of California, Los Angeles, California, USA.

Funding

National Institute of Child Health and Human Development 1R01HD09013801A1
6 · The paper itself

Abstract

aimTo examine factors contributing to attrition in a telehealth, caregiver-mediated behavioral intervention for young children with tuberous sclerosis complex (TSC).

methodThis 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.

resultsNegative 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.

interpretationIn 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.

Indexed as

Behavior TherapyCaregiversTuberous SclerosisChild, PreschoolFemaleHumansInfantMaleMental Health TeletherapyTelemedicine

Identifiers

PMID42532668
PMCPMC13649290

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.