A recent study published in Hepatology Communications provided insights into the experiences of patients with MASH. Jonathan G. Stine, MD, MSc, and colleagues conducted a series of qualitative interviews to better understand the patient journey from pre-diagnosis to living with the condition. In the process, they uncovered significant gaps in the healthcare system’s approach to managing MASH.
The interviews, which involved 28 adults in the United States diagnosed with MASH and liver fibrosis, revealed that many patients endure a prolonged and often frustrating journey of misdiagnoses before receiving an accurate diagnosis. The study highlighted a critical lack of clear information provided by clinicians, leaving patients struggling to understand their condition and navigate their treatment options. “Patients reported that their clinicians provided varied answers about potential treatment options.
Some were advised by their clinicians to start taking vitamin E and/or milk thistle, coupled with weight loss through either surgery or exercise. Others reported that their clinicians did not discuss treatment options with them, so they determined that there were no available treatments for MASH and/or started taking natural treatments following online research,” Dr. Stine and co-investigators explained.
The research also identified a noticeable deficiency in accessible support groups. In particular, Hispanic participants reported substantial emotional and social impacts, with 75% of interviewees citing concerns about the effect of their illness on family and friends, and an equal percentage expressing fear of disease progression.
This fear of progression is a newly reported concern among patients with MASH, shedding light on an important aspect of patient care that has been previously overlooked. None of the White patients with the PNPLA3 I148M variant reported symptoms such as nausea and vomiting, which were prevalent in other patient groups. In response to these findings, the researchers proposed a new screening algorithm to help identify relatives of patients carrying the PNPLA3 I148M variant. This approach aims to enhance early detection and management of MASH, potentially improving outcomes for those at higher risk. “Using patient input, potential modifications to manage unique patient experiences have been identified that could improve the patient journey from pre-diagnosis to post-diagnosis,” Dr. Stine and colleagues concluded.