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. 2022 Jul 1;75(1):88-96.
doi: 10.1097/MPG.0000000000003461. Epub 2022 Apr 20.

Insight Into the Adolescent Patient Experience With Nonalcoholic Fatty Liver Disease

Sanita L Ley  1   2 , Katherine M Kidwell  1   3 , Tori R Van Dyk  4 , Sarah Orkin  2   5 , Cathleen Odar Stough  6 , Taylor Howarth  1 , Amy R Goetz  1   7 , Stavra A Xanthakos  2   5 , Kristin Bramlage  2   4 , Marialena Mouzaki  2   5 , Ana Catalina Arce-Clachar  2   5 , Meg H Zeller  1   2
Affiliations

Insight Into the Adolescent Patient Experience With Nonalcoholic Fatty Liver Disease

Sanita L Ley et al. J Pediatr Gastroenterol Nutr. .

Abstract

Objectives: Nonalcoholic fatty liver disease (NAFLD) is the leading chronic liver disease in youth, yet little is known about the adolescent patient's experience with NAFLD, which is key for treatment engagement. We examined adolescents' experiences with NAFLD diagnosis, thoughts on how NAFLD affects their daily life, understanding and perceptions of diagnosis and treatment, and impressions of how to improve care.

Methods: Utilizing a mixed-method design, adolescents with NAFLD (N = 16; Mean age = 15.8 years; Mean BMI = 37 kg/m 2 ) participated in focus groups. To supplement qualitative data, adolescents and their caregiver completed measures assessing illness perceptions, adolescent quality of life, and eating/activity behaviors.

Results: Focus group themes suggested reactions to diagnosis varied from unconcerned to anxious. NAFLD diagnosis occurred within the context of other psychological/medical concerns and was not perceived to affect most adolescents' daily lives. Although adolescents understood general contributors to NAFLD, comprehension of their diagnosis varied. Adolescents were more likely to make lifestyle changes when families were supportive, and they preferred tailored recommendations for health behavior change from the healthcare team. Notably, 62.5% of adolescents were more concerned about their weight than NAFLD. Almost half (43.8%) identified as food insecure.

Conclusions: Adolescents with NAFLD may benefit from personalized treatment. Care could be enhanced by ensuring comprehension of diagnosis, problem-solving personal, and family barriers and increasing family support. Harnessing adolescents' desire for weight loss may be a more salient driver for change in disease status. Interventions should also address systemic barriers such as food insecurity to ensure equitable care.

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Conflict of interest statement

Sources of Funding: S.L.L. and K.M.K. were supported, in part, by an NIH post-doctoral training grant (T32 DK063929). The aforementioned funding source played no role in study design, data collection, analysis and interpretation of data, report writing, or in the decision to submit the article for publication. The remaining authors report no conflicts of interest.

Figures

Figure 1.
Figure 1.
Adolescent and caregiver reported healthy lifestyle supports and barriers a Adolescent report on the Eating and Activity in Teens Survey whose reference group includes 2,770 adolescents from 20 public schools in Minnesota. b Caregiver report on the Project Families and Eating and Activity among Teens Survey c Healthy foods are defined as green salad, vegetables (not potatoes), 100% fruit juice, fruit, milk, and absence of sugary drinks
See this image and copyright information in PMC

References

    1. Loomba R, Sirlin CB, Schwimmer JB, et al. Advances in pediatric nonalcoholic fatty liver disease. Hepatology. 2009;50(4):1282–93. doi: 10.1002/hep.23119. - DOI - PMC - PubMed
    1. Colucci A, Chaira Rocco M, De Anseris A, et al. Pediatric vs. adult NAFLD to MAFLD transition: A welcome but tangled path. Explor Med. 2021;2:333–342.
    1. Clemente MG, Mandato C, Poeta M, et al. Pediatric non-alcoholic fatty liver disease: Recent solutions, unresolved issues, and future research directions. World J Gastroentro. 2016;22(36):8078–8093. - PMC - PubMed
    1. Xanthakos SA, Lavine JE, Yates KP, et al. Progression of fatty liver disease in children receiving standard of care lifestyle advice. Gastroenterology. 2020;159(5):1731–51.e1710. doi: 10.1053/j.gastro.2020.07.034. - DOI - PMC - PubMed
    1. Nobili V, Sanyal AJ. Treatment of nonalcoholic fatty liver disease in adults and children: a closer look at the arsenal. J Gastroenterol. 2012;47(1):29–36. doi: 10.1007/s00535-011-0467-x. - DOI - PubMed

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