SAN FRANCISCO — Researchers from Intercept Pharmaceuticals found that liver disease awareness and knowledge is scarce compared with other diseases, according to a poster presentation at The Liver Meeting 2015.
“We had a chance to share the survey data with some of the key advocacy groups representing patients with underserved liver diseases and it led to a great discussion about the need to take on some of these major awareness gaps,” Herbert Swanson, Intercept Pharmaceuticals, told Healio.com/Hepatology. “We currently have a phase 3 compound in development for primary biliary cholangitis (PBC), so we also wanted to explore some of the gaps in dialogue that often occur between physicians and patients living with the disease. Overall, in looking at both PBC and liver disease more broadly, there is a clear opportunity to improve education and support for patients.”
Using data obtained through online surveys, responses from 511 people from the U.S. general population were analyzed by Swanson and colleague Tracy J. Mayne of Intercept, to determine the knowledge, awareness, attitude and behaviors the general population has about liver disease.
The online surveys were conducted between January 6 and January 12, 2015 using the GfK Knowledge Panel, a stratified probability sample representative of the population of U.S. households, according to the abstract. The respondents included in the final analysis were chosen at random using probability address-based sampling. To correct for technology and income bias, households without a computer [or] internet were provided hardware and internet access to participate.
Overall, the researchers found that a majority of the respondents did not believe they were at risk for liver disease, nor did they think about or discuss it with friends, family or their primary care physician.
In addition, nearly half of the respondents (42%) believed they did not need a liver to survive and others were unaware that liver function testing is a part of routine bloodwork at a doctor’s visit. Results of liver function testing were hardly discussed with their physicians.
The researchers stated that the following responses did not reflect a lack of overall health awareness: a number of respondents were aware of tests and values for blood pressure (91%), blood sugar (81%), cholesterol (79%) and BMI (69%).
Respondents were more likely to be concerned with other diseases that such as overweight, heart, breast, mental, prostate, colon and kidney. In addition, respondents reported more “stigma associated with liver cirrhosis” compared with kidney disease, heart disease, cancer, diabetes or other reproductive health problems.
“This is important because part … of that is related to 42% of the respondents thinking they can survive without a liver,” Swanson said. “I hit the floor when I read this one. … This, to me, is incredible.”
In terms of the stigma, Swanson said that he thinks it is a barrier the community as a whole needs to overcome.
“Fifty-five percent of Americans believe there is some — if not a great deal — of stigma associated with cirrhosis and liver disease and I think that’s a big barrier we have to get over as a community,” Swanson said. “These patients are not only suffering from cirrhosis, but other disease completely unrelated to substance abuse and alcohol.”
Swanson concluded: “It was a great study and I’m glad it was recognized by AASLD. … It will serve very well for our patient advocacy groups.” – by Melinda Stevens
Mayne TJ, et al. Abstract 313. Presented at: The Liver Meeting; Nov. 13-17, 2015; San Francisco.
Disclosures: Mayne and Swanson are employed by Intercept Pharmaceuticals.