Insight Into the Adolescent Patient Experience With Nonalcoholic Fatty Liver Disease

• Published in: Journal of pediatric gastroenterology and nutrition Vol. 75; no. 1; pp. 88 - 96
• Main Authors: Ley, Sanita L., Kidwell, Katherine M., Van Dyk, Tori R., Orkin, Sarah, Odar Stough, Cathleen, Howarth, Taylor, Goetz, Amy R., Xanthakos, Stavra A., Bramlage, Kristin, Mouzaki, Marialena, Arce‐Clachar, Ana Catalina, Zeller, Meg H.
• Format: Journal Article
• Language: English
• Published: 01.07.2022
• ISSN: 0277-2116; 1536-4801
• DOI: 10.1002/j.1536-4801.2022.tb00058.x

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; Meanage = 15.8 years; MeanBMI = 37 kg/m2) 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.