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Evaluating the quality and reliability of YouTube videos about phenylketonuria

Bahar Kulu1, Sibel Burçak Şahin Uyar2, Batuhan Kulu3

  • 1Department of Inherited Metabolic Disorders, University of Health Sciences, Tepecik Education and Research Hospital, İzmir, Turkey.

Medicine
|September 17, 2025
PubMed

Insights

Most YouTube videos about phenylketonuria (PKU) lack sufficient quality and reliability. Healthcare authorities should create and promote accurate PKU content for patients and families.

Area of Science:

  • Biochemistry
  • Genetics
  • Public Health

Background:

  • Phenylketonuria (PKU) is a genetic metabolic disorder affecting phenylalanine processing.
  • Untreated PKU can lead to severe neurotoxicity and intellectual disability.
  • Early diagnosis and dietary management are crucial for normal development.

Purpose of the Study:

  • To evaluate the quality and reliability of YouTube videos discussing phenylketonuria.
  • To assess the accuracy and trustworthiness of online health information for PKU patients.

Main Methods:

  • A cross-sectional study analyzed 104 YouTube videos on PKU identified via keyword search.
  • Validated tools including the JAMA Benchmark Criteria and modified DISCERN questionnaire were used.
  • The Global Quality Score assessed video quality and accuracy.

Main Results:

  • 56% of videos were medium quality; 58.3% had sufficient information (JAMA criteria).
  • 46.6% of videos demonstrated poor reliability (modified DISCERN).
  • Content quality varied, with professional and academic sources scoring highest.

Conclusions:

  • The majority of PKU-related YouTube content is of low to moderate quality and reliability.
  • There is a need for healthcare authorities to produce and promote high-quality digital health resources.
  • Improving the quality of online health information is vital for patient decision-making.

Keywords:
DISCERNGlobal Quality ScoreJAMA Benchmark CriteriaYouTube video analysisphenylketonuria

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