Author information
1CUNY Graduate School of Public Health and Health Policy (CUNY SPH), New York, NY, United States; Barcelona Institute for Global Health (ISGlobal), Hospital Clínic, University of Barcelona, Barcelona, Spain. Electronic address: jeffrey.lazarus@isglobal.org.
2Barts Liver Centre, Blizard Institute, Queen Mary University London, London, United Kingdom.
3Novo Nordisk, Copenhagen, Denmark.
4Department of Hepatology, Hospital Beaujon AP-HP, University of Paris, Clichy, France.
5Novo Nordisk, Zurich, Switzerland.
6European Liver Patients' Association, Brussels, Belgium.
7Digestive Diseases Department and Ciberehd, Virgen del Rocío University Hospital, Institute of Biomedicine of Seville (HUVR/CSIC/US), University of Seville, Seville, Spain.
8Division of Metabolism and Endocrinology, Faculty of Medicine, Saga University, Saga, Japan; Liver Center, Saga University Hospital, Saga, Japan.
9The Chinese University of Hong Kong, Hong Kong.
10Department of Internal Medicine II, Saarland University Medical Center, Homburg, Germany.
Abstract
Introduction and objectives: Patients increasingly use social media to share and access health-related information and experiences. This study employed social media listening to gain patient-centric insights into metabolic dysfunction-associated steatotic liver disease (MASLD), formerly known as non-alcoholic fatty liver disease (NAFLD).
Materials and method: Publicly available social media data was collected between November 4th, 2020, and November 4th, 2022, about NAFLD from eight countries: Brazil, China, France, Germany, Japan, South Korea, Spain, and the United Kingdom. The analysis involved capturing patient conversations on their journey stages (causes-risk factors, symptoms, diagnosis, and treatment), unmet needs, and impact on patients' quality of life (QoL) from various social media platforms to gain insights associated with NAFLD.
Results: A total of 1600 patient-centric posts were analyzed. The patient journey was the most prevalent topic (92 %) mentioned, followed by comorbidities (38 %) and interactions with HCPs (26 %, health care professionals). Key causes discussed included unhealthy diet (39 %) and overweight/obese (32 %), while the most mentioned symptoms were fatigue (20 %) and pain or abdominal discomfort (20 %). Ultrasound (n=170/553, 31 %) was the most used diagnosis, followed by blood tests (n=130/553, 24 %) and liver function tests (n=91/553, 16 %). Lifestyle management techniques were mainly the standard of care, followed by treatment (n=270/1061, 25 %) and follow-ups with HCPs (n=133/1061, 13 %). Over half (54 %) of the QoL discussion (n=104/192) focused on patients' comorbidities, and 27 % on disease severity, indicating that having NAFLD in moderate to severe form with comorbidities significantly affects patients' quality of life. An emotional analysis revealed that patients were worried and frustrated about their condition but were also hopeful and determined to improve their health. Nearly 38 % of the posts mentioned that patients were emotionally affected by negative feelings, especially those with multiple comorbidities. Lack of access to knowledgeable HCPs and treatment options were the most frequently discussed unmet needs.
Conclusions: This analysis on MASLD patient experiences introduces a unique approach for deriving insights into patients' experiences and their impact on QoL. These insights have the potential to complement conventional methods and foster patient-centric research.