More education that is clear and from reliable sources is needed for patients with a NASH diagnosis and their caregivers throughout the duration of the disease.
Individuals with nonalcoholic steatohepatitis (NASH) report understanding the severity of the diagnosis when they receive it but less than half say they fully understand the disease at that point. And while they also report doing their own research to gain clarity, many say they are overwhelmed by the amount of information they encounter. These findings, from an international survey of patients with NASH and their caregivers, were presented at The Liver Meeting, November 10-14, 2023, in Boston, MA.
A diagnosis of NASH carries far-reaching implications for an individual's s quality of life and for their caregivers as well, the researchers note in the study abstract. There is little literature, however, that provides a quantitative understanding of patients’ experiences and emotions as the disease progresses. Led by Jeff McIntyre, vice president of Liver Health Programs at the Washington, DC-based Global Liver Institute, the current survey was designed to explore the lived experiences and probed the unmet needs of this vulnerable population.
The 30-minutes web-based survey was conducted as part of a global research study and was deployed to individuals diagnosed with NASH and their caregivers in the USA, UK, Canada, Germany, Japan, and China, according to the study abstract. The respondents were between the ages of 18 and 70 years and had been diagnosed with NASH by one of several medical tests. They were all under the care of a medical professional and knew the stage of NASH at which they had been diagnosed as well as the stage they were at the time of the survey.
The final sample comprised 391 individuals (252 patients, 139 caregivers); the cohort’s mean age was 43 years and 63% were men. Many reported being prompted to seek medical care as the result of nuanced and nonspecific symptoms (fatigue 47%, loss of appetite 42%, nausea 40%). Diagnoses were most commonly made by CT scan (62%), elevated liver enzymes (50%) or liver biopsy (47%), with fibrosis assessments conducted to monitor progression (55%), according to the study.
Nearly all respondents reported they understood the severity of their disease at diagnosis (97% reported diagnosis as moderately/very serious), but less than half fully understood the exact meaning of the diagnosis. All of the respondents reported that they had conducted their own research of the disease, but two-thirds found the amount of information to process was overwhelming. McIntyre and colleagues found that patients with NASH were “highly motivated” at their diagnosis to engage in their care, eg, to make lifestyle changes. And even though more than half (60%) said they experienced making these changes as “highly” challenging, 68% felt they had been “very successful “ in implementing them.
The impact of NASH on respondents’ lives was significant, researchers reported, with approximately 15% ranking areas such as pain, weight perception, and time with friends/family as “very impactful.” Equally as disruptive, the investigators reported, was the financial burden associated with maintaining the recommended lifestyle changes. In a positive vein respondents indicated that the initial concern and uncertainty they felt as symptoms emerged shifted toward hope and feeling more confident after an initial diagnosis was made.
McIntyre et al point out that a majority of patients with NASH showed willingness to implement lifestyle changes, indicating motivation to participate in their care. However, they feel overwhelmed by the vast amount of information available when they seek to better educate themselves which, they conclude, strongly suggests “the large unmet need for further disease education using clear, reliable information sources, and the need for improvements in disease management.”