Transition to Medicare Part D: an early snapshot of barriers experienced by younger dual eligibles with disabilities.

BACKGROUND

Cleft lip and palate (CLP) is among the most common congenital anomalies, necessitating complex, multidisciplinary care from infancy through adolescence. Caregivers often turn to online resources, particularly YouTube, for supplemental guidance on presurgical management, feeding techniques, and long-term care. However, the reliability and educational value of such freely available video content remain uncertain.

METHODS

A systematic literature search was conducted in PubMed/MEDLINE, Scopus, Cochrane, and relevant grey literature from 2014 to 2026. Eligible studies were cross-sectional, observational and qualitative study analyses of YouTube videos related to cleft lip and/or palate, reporting content quality using standardized tools such as the Global Quality Score (GQS), DISCERN, PEMAT-AV, VIQI, MQ-VET, or custom indices.

RESULTS

A total of eight studies that met the eligibility criteria were included in the systematic review. Seven YouTube video-analysis studies that involved quantifiable methods contributed extracted data from 373 YouTube videos, whereas one study involved qualitative methods, providing narratives on the preferences of parents and their unmet educational needs. GQS was reported in two studies and analyzed exploratorily, resulting in a pooled average of 2.50/5 (95% CI 2.11-2.90; I² = 68.8%), which shows the presence of moderate to low educational quality.

CONCLUSIONS

The quality and comprehensiveness of YouTube videos on cleft lip and palate remain suboptimal, with considerable variability across topics and uploader types. There is a critical need for improved, peer-reviewed, and user-centered educational resources to better support families and caregivers. Collaborative efforts among clinicians, patient advocates, and digital content creators are essential to elevate the standard of online health information in this domain.

SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at https://doi.org/10.1007/s12663-026-03261-9.