As liver disease cases rise in the US, data shows that patients both at-risk and with a diagnosis of liver disease are willing to participate in clinical research.
Known as the silent liver disease, nonalcoholic fatty liver disease (NAFLD) affects between 30% and 40% of all adults in the US. Fatty liver disease (FLD) can also lead to nonalcoholic steatohepatitis (NASH). Together, FLD and NASH impact the lives of more than 100 million Americans. And NASH is on the rise: by 2030, prevalent NASH cases will increase by 63% and is anticipated to be the most common reason for liver transplants in the US. What’s more, data shows that adults diagnosed with type 2 diabetes, another growing epidemic, may be at greater risk of developing FLD or NASH.
While there is currently no cure for FLD or NASH, the pharmaceutical industry is turning to clinical research to understand the causes, development, and treatment of these diseases. To better understand current and at-risk patients’ attitudes toward clinical research and why they might consider a clinical trial, SubjectWell recently fielded a survey. From November 16 to 20, 2020, we presented 561 at-risk patients above the age of 50 who have type 2 diabetes with a questionnaire.
The following are our findings on patient attitudes toward FLD and NASH research.
Consideration of clinical trials increases with a diagnosis.
We first looked at whether respondents were already diagnosed with FLD or NASH. Out of all at-risk respondents, 74 individuals were diagnosed with either FLD or NASH and 467 individuals were undiagnosed. We asked the undiagnosed population if they would be willing to participate in a trial for a disease they were at high-risk of developing. The data shows that a small majority of patients would be willing to participate.
Likelihood of undiagnosed patients to participate in a clinical trial for a disease they were at high-risk of developing
57% of the undiagnosed respondents reported being willing to participate
We then asked if the diagnosed patients would be willing to participate in clinical research related to their condition. The data shows that a majority of these patients would, with FLD patients demonstrating more interest.
Likelihood of patients with FLD or NASH diagnosis to participate in a clinical trial on the condition
72% of respondents diagnosed with FLD reported being willing to participate
61% of patients diagnosed with NASH reported being willing to participate*
Unsurprisingly, patients with either FLD or NASH were 21% more likely to report a willingness to participate in a trial for their diagnosed condition than the undiagnosed patient’s likelihood of participating in a trial they were at high-risk of developing (69% and 57%, respectively).
69% of all diagnosed respondents reported being willing to participate in a trial for their diagnosed condition
57% of undiagnosed patients reported being willing to participate in a trial they were at high-risk of developing
Once we identified individuals diagnosed with either of the two liver diseases, we wanted to see how patients with FLD or NASH rated the importance of certain motivators compared to those without these diseases. Overall, we found that all patients responded similarly when considering clinical trial participation, with no significant differences in motivations. The following motivators for clinical trial participation were rated highest for both diagnosed and undiagnosed patient populations.
- FLD or NASH patients
- Patients without FLD or NASH
Patients who would be motivated by obtaining better treatment
84% FLD or NASH patients vs 80% Patients without FLD or NASH
Patients who would be motivated by obtaining education about treatment
76% FLD or NASH patients vs 70% Patients without FLD or NASH
Patients who would be motivated if they received a doctor recommendation
77% FLD or NASH patients vs 80% Patients without FLD or NASH
The importance of ethnicity in FLD and NASH research.
While looking at respondent demographics, we needed to consider how ethnicity could play a role in FLD and NASH clinical research participation.
Across the US, FLD and NASH have been proven to disproportionately affect Hispanic communities. There is a prevalence of type 2 diabetes within this group, which can be linked to sociocultural factors and a genetic susceptibility to obesity and higher insulin resistance. Therefore, in our survey, we took a closer look at how Hispanic respondents rated certain motivators for clinical trial participation and getting tested for an at-risk disease versus non-Hispanic respondents.
The following reasons for participation in clinical research were identified as important:
To help others who are suffering and advance science
88% Hispanics vs 79% Non-Hispanics
To obtain education about treatment
78% Hispanics vs 70% Non-Hispanics
Free medication and/or treatment
78% Hispanics vs 70% Non-Hispanics
The following reasons for getting tested for an at-risk disease were identified as important:
Knowing that a celebrity has the same disease
44% Hispanics vs 32% Non-Hispanics
Knowing that 3-6% of US adults have this undiagnosed condition
66% Hispanics vs 59% Non-Hispanics
Utilizing this data to move NASH research forward through patient centricity.
As clinical research helps us learn more about liver diseases like FLD and NASH, understanding current and at-risk patient attitudes is crucial to designing and fielding trials that best serve these patient populations.
To request a download of the complete survey data, visit www.subjectwell.com/surveys. Be sure to check back on our website for more information related to patient recruitment and survey findings.
*Use caution when interpreting findings due to small sample size.
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