A social media listening study of patients’ experiences relating to metabolic dysfunction-associated steatotic liver disease: The LISTEN-MASLD study

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 MASLD 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 patient's quality of life (QoL) from various social media platforms to gain insights associated with MASLD. 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 MASLD 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 of NAFLD 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.

Keywords

• NAFLD
• Non-alcoholic steatohepatitis
• Metabolic dysfunction-associated steatotic liver disease
• MASLD
• Social media
• Patient journey