We are excited about launching this new initiative and undertaking this national, patient-focused survey to gather baseline data that many people can use to support advocacy and measure impact for the NAFLD/NASH patient population
BOISE, Idaho (PRWEB) April 18, 2022
The Fatty Liver Foundation (FLF) today announced the launch of The State of NAFLD/NASH Care in America™, a first-of-its-kind national initiative that aims to make a big impact within the NAFLD/NASH community by surveying the lived experiences of adults with NAFLD/NASH in the United States and fostering the continuous development and integration of actionable solutions to improve the diagnosis, treatment, care, and support for people with NAFLD/NASH.
Nonalcoholic fatty liver disease (NAFLD) is a growing cause of chronic liver disease worldwide. NAFLD is an umbrella term for a range of liver conditions affecting people who drink little to no alcohol. It is characterized by steatosis or infiltration of liver cells with fat, liver inflammation, liver cells injury, and progressive fibrosis. Some individuals with NAFLD can develop nonalcoholic steatohepatitis (NASH), an advanced and aggressive form of fatty liver disease, which is marked by liver inflammation and may progress to advanced scarring or cirrhosis and liver failure. NAFLD/NASH place a heavy burden on individuals, families, and healthcare resources and utilization. NAFLD/NASH are silent diseases with few or no symptoms and may go undiagnosed for years. FLF hears frequently from NAFLD/NASH patients who have been diagnosed late. This is why FLF continues to advocate and emphasize the vital need for raising awareness, promoting early screening and detection, improving access to screening tools and treatment, and educating patients about lifestyle changes to help prevent and treat NAFLD/NASH.
NAFLD/NASH are now the most common cause of chronic liver disease among adults in the United States, affecting about one-quarter of the population. The impact of NAFLD/NASH on patients’ care and health-related quality of life (HRQOL) is important to understand the full burden of these diseases, medical management, and social support response. Data derived from this annual national survey as part of FLF’s State of NAFLD/NASH Care in America™ initiative could provide patients and their families, providers, researchers, and payers real-life information needed to better understand the total impact of NAFLD/NASH and help inform their decisions.
The survey generates key measures of patients’ lived experiences with NAFLD/NASH, such as:
- Patients’ NAFLD/NASH diagnosis, staging, and care pathway
- Getting timely appointments, care, and information
- How well NAFLD/NASH care team communicates with patients
- Involvement of family members and friends
- Patients’ psychosocial and environmental impact
- Patients’ current health status
- Patients’ rating of the NAFLD/NASH care team
- Patients’ rating of overall NAFLD/NASH care
The results could provide in-depth information about the needs, concerns, and struggles of the NAFLD/NASH patient population, as well as interventions they believed would be helpful.
The survey study is confidential and does not require any personal identifying information to participate. Survey respondents will be asked about their demographic background, diagnosis and testing, symptoms, treatment options they may have chosen, and impacts on mental health and behavior. This survey aims to recruit up to 2,000 respondents and is in both English and Spanish.
“We are excited about launching this new initiative and undertaking this national, patient-focused survey to gather baseline data that many people can use to support advocacy and measure impact for the NAFLD/NASH patient population,” said Wayne Eskridge, CEO and Co-Founder of FLF. “We need to take urgent action to stop the silent epidemic of NAFLD/NASH in its tracks by applying what’s working well and apply them so that every person with NAFLD/NASH gets the best possible care and support, regardless of where they live and ability to pay.”
“There is a huge gap in our understanding about the overall impact of NAFLD/NASH on patients’ care and HRQOL,” said Dr. Neeraj Mistry, FLF Chief Medical Officer. “We want to gather information from those willing to share their lived experiences about NAFLD/NASH and share that data with all stakeholders trying to paint the full picture of this silent epidemic.”
“We are grateful to our funders for supporting this new initiative,” said Henry E. Chang, FLF Executive Director. “We look forward to sharing key findings from this survey that could provide the strongest evidence base from patients and create actionable solutions to reduce the unacceptable premature mortality and disease burden from NAFLD/NASH and improve the standard of care for people with NAFLD/NASH.”
About the Fatty Liver Foundation
The Fatty Liver Foundation is a non-profit patient organization dedicated to improving the identification, diagnosis, treatment and support of people living with fatty liver, NAFLD or NASH through awareness, screening, education, and patient outreach. FLF’s goal is to improve the lives of both asymptomatic and diagnosed patients by raising awareness, advancing wellness screening, educating patients, and championing the development of responsive support systems for individuals of the growing epidemic of fatty liver disease. Connect with us on http://www.fattyliverfoundation.org, Facebook (Fatty Liver Foundation JUST LIVER NEWS), Twitter (@LiverSaver), and YouTube (Fatty Liver Foundation).