The Fatty Liver Foundation (FLF) has just announced a new national survey which will document the experiences and needs of individuals living with non-alcoholic fatty liver disease (NAFLD) and nonalcoholic steatohepatitis (NASH). The survey is called The State of NAFLD/NASH Care in America™ and its aim is to provide more information to stakeholders regarding the needs and experiences of these patient populations. The hope is with more data we can improve the speed of diagnosis, care, treatment plans, and general support for these patients.
NAFLD is actually a term for a wide range of different liver diseases. All of these conditions are characterized by the fact that they are not driven by alcohol consumption. In NAFLD, the liver cells are infiltrated with fat and liver cell injury and inflammation occurs. Fibrosis in NAFLD is progressive.
Those with a severe form of this condition are diagnosed with NASH.
NASH is the most advanced and most aggressive of the fatty liver diseases. It is characterized by liver inflammation which can lead to cirrhosis and even liver failure.
Unfortunately, both NAFLD and NASH often affect patients silently for years. With little to no symptoms it’s hard to receive a diagnosis. But delayed diagnosis can mean worse outcomes. This is one of the issues FLF is trying to solve.
This new survey study is hoping to recruit 2,000 participants. It will be distributed in English as well as Spanish. The survey is fully confidential and participants don’t have to enter any kind of identifying information.
Questions will include demographics, experiences with diagnosis, symptom burden, treatments, mental health, and other ways the conditions have impacted their daily lives. Some of the key questions include:
- How long it took them to get information on the condition, a diagnosis, and appointments
- Whether or not patients feel information is communicated well from their care team
- How family members are involved or impacted
- The psychosocial impact of the condition
- How patients are doing currently
- Ratings of their current care team
- Ratings of their current care overall
The hope is that these responses will provide detailed information about how we can improve the lives of these patients. Perhaps it will point to specific interventions which will be helpful. The goal is to leave with actionable steps to improve NAFLD/NASH patient’s standard of care.
You can read more about this new survey initiative here.