DOI: 10.6084/m9.figshare.22812022
title: Nonalcoholic steatohepatitis diagnosis and treatment from the perspective of patients and primary care physicians: a cross-sectional survey

description: The global prevalence of nonalcoholic steatohepatitis (NASH) is rising. Despite this, NASH is underdiagnosed and does not yet have approved pharmacological treatments. We sought to understand the path to diagnosis, patient interactions with healthcare professionals, treatment regimens, and disease management for patients with NASH. Cross-sectional online surveys of patients with a self-reported diagnosis of NASH and healthcare professionals treating patients with NASH were conducted from 10<sup>th</sup> November 2020, to 1st January 2021. This manuscript focuses on responses from 152 patients with NASH and 101 primary care physicians (PCPs). Patients (<i>n</i> = 152, mean age = 40, SD = 11) and healthcare professionals (<i>n</i> = 226) were located throughout the US. In the most common patient journey, 72% of patients had initial discussions about symptoms with a PCP but only 30% report receiving their NASH diagnosis from a PCP. Almost half of PCPs (47%) were not aware of any clinical practice guidelines for diagnosis and management of NASH. For ongoing management of NASH, PCPs most frequently prescribed lifestyle changes such as exercise (89%), lifestyle changes focused on diet (79%), and/or metformin (57%). Other healthcare professionals rarely referred patients to PCPs for treatment, but when they did, the primary reasons were patients struggling with lifestyle modifications (58%), needing to lose weight (46%), and needing treatment of comorbidities (42%). PCPs may benefit from greater awareness of NASH and guidelines for its diagnosis and treatment. Given the absence of pharmacological treatments approved for NASH, PCPs can offer support in obesity management, comorbidity management, and risk stratification for liver disease progression. Nonalcoholic steatohepatitis (NASH) is a form of nonalcoholic fatty liver disease (NAFLD) with a higher risk of more severe liver disease. Patients with NASH have too much fat deposited in their liver with associated liver inflammation, scarring, and, in some patients, liver failure. Patients with NASH may not experience symptoms until their disease reaches a dangerous point. We wanted to understand how patients with NASH are diagnosed, how they interact with doctors, and how doctors manage their disease. We surveyed 101 primary care doctors and 152 patients with NASH to ask them about their experiences with NASH. Most patients (72%) report having initial discussions about potential NASH symptoms with a primary care doctor, but only 30% receive their NASH diagnosis from a primary care doctor. Almost half of primary care doctors were not aware of guidelines for the diagnosis and management of NASH. To manage patients’ NASH, most primary care doctors prescribed lifestyle changes such as exercise (89%), lifestyle changes focused on diet (79%), or metformin (57%). Other types of doctors rarely referred their patients with NASH to primary care doctors for treatment; when they did the main reasons were that their patients were struggling with lifestyle modifications (58%), needed to lose weight (46%), or needed treatment of one of their other conditions (42%). In conclusion, primary care doctors may benefit from greater awareness of guidelines for the diagnosis and treatment of NASH. Primary care doctors can play an important role in supporting patients with lifestyle change and management of patients’ other conditions that may be related to their NASH.Key messagesPrimary care physicians (PCPs) are the most common initial touchpoint for patients with NASH.PCPs lack awareness of guidelines for the diagnosis and treatment of NASH.Other physicians believe that PCPs can help patients with lifestyle changes, weight loss, and management of comorbidities. Primary care physicians (PCPs) are the most common initial touchpoint for patients with NASH. PCPs lack awareness of guidelines for the diagnosis and treatment of NASH. Other physicians believe that PCPs can help patients with lifestyle changes, weight loss, and management of comorbidities.