The State of Steatotic (Fatty) Liver Care in America survey (formerly known as The State of NAFLD/NASH Care in America) is a pioneering national initiative that aims to make a significant impact within the steatotic (fatty) liver patient community. This initiative surveys the real-life experiences of adults with steatotic (fatty) liver across the United States, promoting the ongoing development and implementation of practical solutions to improve diagnosis, treatment, care, and support for those affected by these conditions.
The 2022 State of NAFLD/NASH Care in America survey was the inaugural annual survey to understand the state of care for NAFLD/NASH as experienced by patients and will establish the baseline to monitor year-to-year changes in disease management progress. For more information, see the full press release here. See findings from all survey years below.
2024 Results
- Many patients showed health-seeking behavior for their diagnosis which presents an opportunity for proactive health provider initiated community screening.
- Patient education and condition information received at diagnosis is improving though there is still much room for improvement.
- Despite being frequently requested by respondents, dietitians, nutritionists, and fitness coaches remain underrepresented in care teams. Multidisciplinary care teams (MCTs) should be the standard of care for people living with SLD.
- Primary care physicians remain central to patient care and should be empowered to act as coordinators within an MCT with the resources needed to ensure continuity of care.
- Low referral rates to mental health professionals are disproportionate to the mental health symptoms reported by respondents. This suggests an unmet need for addressing the phycological impact of living with a chronic liver condition.
- Muchos pacientes mostraron un comportamiento de búsqueda de salud para su diagnóstico, lo que presenta una oportunidad para una evaluación comunitaria proactiva iniciada por un proveedor de salud.
- La educación del paciente y la información sobre su condición recibida en el momento del diagnóstico están mejorando, aunque todavía hay mucho margen de mejora.
- A pesar de que los encuestados los solicitan con frecuencia, los dietistas, nutricionistas y entrenadores físicos siguen estando subrepresentados en los equipos de atención. Los equipos de atención multidisciplinarios deberían ser el estándar de atención para las personas que viven con EHE.
- Los médicos de atención primaria siguen siendo fundamentales para la atención al paciente y se les debe capacitar para actuar como coordinadores dentro de un equipo multidisciplinario con los recursos necesarios para garantizar la continuidad de la atención.
- Las bajas referencias a profesionales de la salud mental son desproporcionadas con respecto a los síntomas de salud mental que informan los encuestados, lo que sugiere que existe una necesidad insatisfecha de abordar el impacto psicológico de vivir con una enfermedad hepática crónica.
2023 Results
- Primary care remains a common entry point for NAFLD/NASH patients in their diagnosis experience.
- Tiredness, abdominal pain and/or swelling, and changes in sleep remained the most common symptoms before diagnosis, though their reported frequencies decreased slightly in 2023.
- Most respondents were diagnosed with either NAFLD (24.8%) or Stage 4 NASH (21.3%). Some respondents (15.2%) were not aware of their exact disease stage at diagnosis.
- Among 2023 respondents, slightly more (0.6%) were given more tests to establish a cause of their diagnosis. Less (4.6%) reported they were told there was nothing to worry about.
- Three out of four (83.0% in 2022 and 83.9% in 2023) respondents felt they were given none or not enough information at diagnosis.
- A new question in 2023, about one out of ten (9.9%) respondents reported having been denied a referral to a specialist before.
- A new question in 2023, over nine out of ten (96.4%) said they were not currently enrolled in a clinical trial.
- About one out of three (35.6% in 2022 and 34.3% in 2023) still did not have someone to turn to if help was needed or wanted.
- Health (82.0%) was the most frequently reported social insecurity followed by money (51.2%) and food (19.2%).
- The average rating of medical care since diagnosis improved about 3 points (44 to 47) between 2022 and 2023.
- Tiredness, body pain, and abdominal bloating remain the most frequently experienced symptoms among respondents at the time of survey.
- Reported feelings of anxiety, irritability, and fearfulness increased between 2022 and 2023.
- La atención primaria fue el punto de entrada más común para la detección y diagnóstico de EHGNA/EHNA.
- Cansancio, dolor abdominal y/o inflamación, los cambios en el sueño fueron todavia los síntomas más comunes antes del diagnóstico. Sin embargo, su frecuencia disminuido un poco en 2023.
- La mayoría fueron diagnosticado con EHGNA (24.8%) o EHNA en etapa 4 (21.3%). Algunos participantes (15.2%) no sabían en qué etapa de la enfermedad fueron diagnosticado.
- En 2023, los participantes un poco mas del (0.6%) recibieron nuevos estudios para establecer la causa de su diagnóstico. Menos (4.6%) se les dijo que no tenían nada de qué preocuparse.
- Tres de cada cuatro (83.0% en 2022 y 83.9% en 2023) sintieron que no recibieron suficiente o ninguna información en el momento del diagnostico.
- Aproximadamente uno de cada diez (9.9%) informaron que alguna vez le han negado una referencia a una especialista. Esta pregunta es nueva en 2023.
- Nueve de cada diez participantes(96.4%) informaron que no estan participando actualmente en algún ensayo clínico. Esta pregunta es nueva en 2023.
- Aproximadamente uno de cada tres (35.6% en 2022 y 34.3% en 2023) todavia no tenían a alguien a quien acudir en busca de ayuda si la necesitaban.
- La salud (82.0%) era la mayor inseguridad social seguida del dinero (51.2%) y la comida (19.2%).
- De 2022 a 2023, el promedio del cuidado médico desde el diagnóstico mejoró aproximadamente 3 puntos (de 44 a 47).
- Los participantes todavia se enfrentan a diferentes síntomas, como cansancio, dolor corporal, y inflamación abdominal.
- La ansiedad, depresión, y irritabilidad aumentó de 2022 a 2023.
2022 Results
- Respondents rated their overall health a 51 out of 100.
- The primary care setting was the most common entry point for screening and diagnosis of NAFLD/NASH.
- People with NAFLD feel they are not given enough information about their condition at time of diagnosis or while visiting a hepatologist or gastroenterologist.
- Diet recommendations and lifestyle counseling were commonly offered as treatment, yet diet and fitness experts were usually not part of respondents’ care team.
- Respondents frequently had one or more comorbidities in addition to their NAFLD/NASH diagnosis.
- People with NAFLD/NASH face emotional and social challenges like feeling anxious, depressed, or irritable and many did not have someone to turn to for help
-
Our recommendations call for improved provider education, improved strategies to identify those at risk, improved multidisciplinary patient care teams, improved mental and social support for people living with NAFLD, and improved resources for caregivers.
- Los participante calificaron su salud general con un 51 sobre 100.
- La atención primaria fue el punto de entrada más común para la detección y diagnóstico de EHGNA/EHNA.
- Los participantes con EHGNA sintieron que no recibieron suficiente información sobre su condición al momento del diagnóstico o cuando visitaron a un hepatólogo o gastroenterólogo.
- Las recomendaciones dietéticas y el asesoramiento sobre el estilo de vida se ofrecieron comúnmente como tratamiento, aunque los nutriólogos y expertos en acondicionamiento físico generalmente no formaban parte del equipo de atención de los participantes.
- Los participantes frecuentemente tenían una o más comorbilidades además de su diagnóstico de EHGNA/EHNA.
- Las participantes con EHGNA/EHNA reportaron experimentar desafíos emocionales y sociales como ansiedad, depresión e irritabilidad, y muchos no tenían a quién acudir en busca de ayuda.
- Nuestras recomendaciones exigen una mejor educación en los proveedores de salud, mejores estrategias para identificar a las personas en riesgo, mejores equipos multidisciplinarios de atención al paciente, mejor apoyo mental y social para las personas que viven con EHGNA y mejores recursos para los cuidadores.
Survey Analysis Group
In 2025, a survey analysis group comprised of experts in hepatology, nutrition, and biostatistics was formed to provide high-level data review and expert feedback, which contribute to the development of the survey's annual report on the state of steatotic liver care in America. These members are listed in no particular order
Dr. Jonathan Stine is an Associate Professor of Medicine and Public Health Science at Penn State where he serves as the Fatty Liver Program Director and Liver Center Research Director. As an internationally recognized liver expert with a research and clinical focus on metabolic dysfunction-associated steatotic liver disease (MASLD), he has authored more than 120 peer-reviewed papers, including multinational consensus guidelines for the American College of Sports Medicine and Exercise and Sports Science Australia, and has lectured across the United States and Europe. Dr. Stine has been the recipient of multiple research grants and awards from the American Association for the Study of Liver Diseases, American Cancer Society and National Institutes of Health. His research has been featured by various media outlets including ABC, the Associated Press, Yahoo and STAT News. Since 2023, he has been recognized by Stanford University as being among the World’s Top 2% Scientists.
Vernon M. Chinchilli, PhD is a Distinguished Professor of Public Health Sciences at the Penn State College of Medicine. He received a PhD in Statistics from the University of North Carolina at Chapel Hill in 1979. His professional experience includes two years as a post-doctoral fellow in mathematical statistics at the U.S. Food and Drug Administration (1979-1981), 11 years as Assistant Professor through Professor in the Department of Biostatistics at Virginia Commonwealth University (1981-1992), and the last 33 years as Professor at the Penn State College of Medicine (1992-2022). He served as Chair of the Department of Public Health Sciences from April 01, 2003 through September 30, 2022.
He is an experienced biostatistician with a broad background in applications to clinical trials and observational studies. He has published widely in the medical and biostatistical literature, especially in the areas of clinical trials, longitudinal data analysis, multivariate analysis, crossover trials, and measures of agreement. He has more than 435 peer-reviewed publications and co-authored a book (Linear and Nonlinear Models for the Analysis of Repeated Measurements). He was appointed a Fellow of the American Statistical Association in 1997 for my contributions to biostatistics.
Dr. Amreen Dinani
Dr. Meena Bansal
Dr. Brent Tetri
Dr. Scott Friedman
Ms. Karen Hoyt
Create your own user feedback survey