Introduction

A large number of patients with autoimmune hepatitis (AH) seek information about their disease on the internet. The reliability, comprehensiveness, and quality of said information in Spanish has not been studied.

Aims & Methods

Our aim was to describe the characteristics of the information about AH on YouTube®. Methods: An analytic observational study evaluated videos in Spanish about AH available on YouTube®, describing their general characteristics, viewer engagement, and information sources. Standardized tools were utilized to analyze reliability (DISCERN), comprehensiveness, and overall quality (Global Quality Score [GQS]).

Results

One hundred videos were included, 93% of which provided information from healthcare professionals (group 1), and 7% of which reflected patient opinions (group 2). There were differences in the median reliability (DISCERN: 4 vs 2, P ≤ .05) and comprehensiveness (4 vs 2, P ≤ .05) scores between groups, but equal overall quality (GQS 3 vs 2, P = .2). Reliability (DISCERN: 4; IQR: 3-4) and comprehensiveness (4.5; IQR: 3-5) were higher in videos by professional organizations, compared with those by independent users, healthcare information websites, and for-profit organizations (DISCERN: 3; IQR: 2.5-3.5; P < .001). Reliability (DISCERN: 2; IQR: 1.5-3), comprehensiveness (2; IQR; 1.5-2.5), and quality (GQS: 2.5; IQR: 1.5-3.5) were lower for videos made by for-profit organizations.

Conclusion

The majority of videos about AH in Spanish on YouTube® have good reliability, comprehensiveness, and quality. Videos created by academic organizations had higher scores, thus their collaboration, with respect to patient opinion videos, is suggested.

References

1. Firth J, Torous J, Stubbs B, et al. The “online brain”: how the Internet may be changing our cognition. World Psychiatry 2019;18:119–29. doi: 10.1002/wps.20617.
2. Auxier B, Anderson M. Social Media Use in 2021 [Internet]. Pew Research Center 2021 [cited 2021 Apr 9]. Available from: https://www.pewresearch.org/internet/2021/04/07/social-media-use-in-2021/
3. Pew Research Center. The diagnosis difference [Internet]. 2013 [cited 2022 Feb 26]. Available from: https://www.pewresearch.org/science/2013/11/26/the-diagnosis-difference/
4. Tang PC, Newcomb C. Informing patients: a guide for providing patient health information. J Am Med Inform Assoc 1998;5:563–70. doi: 10.1136/jamia.1998.0050563.
5. Smailhodzic E, Hooijsma W, Boonstra A, et al. Social media use in healthcare: A systematic review of effects on patients and on their relationship with healthcare professionals. BMC Health Serv Res 2016;16:1–14. doi: 10.1186/s12913-016-1691-0.
6. Lui C-W, Wang Z, Wang N, et al. A call for better understanding of social media in surveillance and management of noncommunicable diseases. Health Res Policy Syst 2021;19:18. doi: 10.1186/s12961-021-00683-4.
7. Hill JA, Agewall S, Baranchuk A, et al. Medical misinformation. Circulation 2019 ;139:571–2. doi: 10.1161/CIRCULATIONAHA.118.039193.
8. Mieli-Vergani G, Vergani D, Czaja AJ, et al. Autoimmune hepatitis. Nat Rev Dis Prim 2018;4:18017. doi: 10.1038/nrdp.2018.17.

Disclosure

Article IN PRESS in Revista de Gastroenterología de México

Introduction

Autoimmune hepatitis (AIH) is a rare chronic liver disease. Assessment of Health-Related Quality of Life (HRQoL) in this field has emerged as a novel method to evaluate the well-being of patients and their therapeutic management. The aim of this study was to evaluate the health-related quality of life in patients with autoimmune hepatitis by comparing it to that of patients with chronic hepatitis C and healthy subjects.

Aims & Methods

We conducted a single centre study enrolling patients followed in our department for AIH between 2010 and 2023. Thirty patients followed for hepatitis C in our center et forty healthy subjects were selected as a control group. We assessed health related quality of life in these patients using the chronic liver disease questionnaire which is a specific tool used in liver disease to appreciate the HRQoL. Patients with decompensed cirrhosis were excluded.

Results

A total of 100 patients were enrolled: 30 patients with AIH, 30 patients with chronic hepatitis C and 40 healthy subjects. The median age was 51 (50-, 64- and 45-year-old respectively in AIH, chronic hepatitis C and healthy subjects) and the sex-ratio was 0,4. The overall Chronic Liver Disease Questionnaire scores (82 vs. 190, P<0.001), the worry domain (8 vs 30, P<0.001), the systemic symptom domain (14 vs 35, P<0.001) and the fatigue domain (10 vs 25, P<0.005) were significantly inferior in patients with autoimmune hepatitis compared to healthy subjects. Similarly, these scores were significantly worst in AIH patients compared to hepatitis c patients: overall Chronic Liver Disease Questionnaire scores (82 vs. 138, P < 0.001), the worry domain (8 vs 30, P<0.001), the systemic symptoms domain (14 vs 35, P<0.001) and the fatigue domain (10 vs 25, P<0.001). In AIH patients, the univariate analysis showed that cirrhosis was associated with lower overall score (99 vs 145, P<0.01) and lower score on the worry domain (7 vs 27, P<0.002) and the use of prednisolone was associated with lower scores on the worry domain (7 vs 8, P<0.05).

Conclusion

Patients with autoimmune hepatitis show a significant impairment of health-related quality of life compared to hepatitis c patients and healthy subjects. Therefore, focusing on the quality of life in these patients is important in order to provide an optimum medical care.