YouTube as a source of patient education in idiopathic pulmonary fibrosis: a media content analysis

Abstract

Purpose: Idiopathic pulmonary fibrosis (IPF) is a common cause of pulmonary fibrosis, with millions of individuals affected in the world. Patients may use multiple resources to educate themselves regarding their illness, including popular social media video hosting site YouTube. We set out to determine the quality of patient education material discussing IPF available on YouTube. Methods: 100 consecutive videos were surveyed for review, of which 59 were included in the final analysis. Three independent blinded reviewers were assigned to score each video on a scoring system designed along patient education material available publicly at the American Thoracic Society and the American College of Chest Physicians. Scores by each reviewer were compared to others using means, standard deviation, Cohen's Kappa, and intra-class reliability. Results: Video content had a mean score of 5.9, SD 3.96 out of a maximum of 20 points. Cohen's Kappa between the three raters was calculated to a value of 0.92 and Interclass reliability was 0.79 (0.70-0.86, 95% CI) indicating appropriateness of comparison between the three raters. Conclusion: Patient education material regarding IPF on YouTube was found deficient in quantity and quality. Providers should be aware of the best information resources available and utilize these to educate their patients.

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“…Otros investigadores como Ferhatoglu, Kartal, Ekici y Gurkan ( 2019 Adicionalmente, en buena parte de las investigaciones se complementa la escala DISCERN con otros métodos de evaluación de contenidos, destacando entre ellos el benchmark JAMA y la escala Global Quality Score (GQS), junto con otros métodos adaptados de fuentes reputadas, como el National Institute on Deafness and Other Communication Disorders o la American Thoracic Society y American College of Chest Physicians (Lashari et al, 2019) El benchmark JAMA (Journal of American Medical Association) es una herramienta de investigación que mide la calidad de la información dirigida a pacientes con base en cuatro criterios: 1) autoría; 2) atribución; 3) divulgación; y 4) actualidad. De esta forma, se evalúa si el contenido cumple o no con cada criterio, dando 1 punto en caso afirmativo, 0 si no cumple y siendo 4 la máxima puntuación total (Aydin y Aydin, 2020).…”

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“…Time constraints in busy clinics pose challenges to providing adequate patient support. Many patients find information on-line that is inaccurate, outdated or misleading [15,16] or would have been better understood if communicated by a clinician than read by the patient alone.…”

“…Time constraints in busy clinics pose challenges to providing adequate patient support. Many patients find information online that is inaccurate, outdated or misleading [ 15 , 16 ], or would have been better understood if communicated by a clinician than read by the patient alone. A significant proportion of patients trying to cope with IPF suffer from anxiety or depression [ 17 – 19 ] or other forms of psychological distress.…”