One in ten Americans have some form of liver disease. Some have estimated that over 30 million Americans are living with Non-Alcoholic Steatohepatitis (NASH), an advanced form of non-alcoholic fatty liver disease.
Aside from taking recommendations from healthcare providers, people live with NASH in a variety of ways. Whose opinions do they listen to online and how does this affect how they manage their diagnosis?
Compared to other methods like focus groups and surveys, search represents a source of truth for people’s unstated behaviour.
It can be used to identify emerging trends and patient patterns, as well as how popular a brand/product is compared to competitors.
More importantly, search data grants us access to the largest, unbiased sample the internet has to offer.
In this section, we share a regular update on search interest in the top medications for non-alcoholic steatohepatitis (NASH). Then, we feature a selection of topics related to this condition that have seen the fastest-growing search interest over the last three months, reflecting the needs and queries of patients, healthcare providers, scientists, and others who are invested in the topic.
Quilt.AI brings these trends to life through an analysis that incorporates both cultural and scientific lenses.
Search interest for FGF21 protein grew by 23% over the last 3 months, from April 2022 to June 2022.
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People who are searching for NASH are also trying to understand how the FGF21 protein is related to their condition, and searches for it have been up, particularly in the states of Massachusetts, Nevada, and Alabama. The most recent interest spike was on May 17 (pictured).
There has likely been consistent interest in this liver-secreted hormone because it is known to regulate sugar intake and cravings for sweet foods (items that should be reduced in a NASH-friendly diet). People may also be interested in more recent scientific findings suggesting that FGF21 holds therapeutic promise to target the progression of NASH as it decreases liver fat and cell injury while suppressing inflammation and fibrosis (scarring).
There has been an increase in searches for pleural effusion over the past three months with the highest number of searches coming from Vermont, South Dakota, and Montana. Pleural effusion (or ‘hepatic hydrothorax’ when it is liver-related) is a complication that people can encounter if NASH progresses to a more severe form of liver disease (i.e. cirrhosis). In this condition, abdominal fluid accumulates in the space between the lungs and chest cavity. It can impair breathing and be life-threatening.
People with a NASH diagnosis are also searching for this condition, and are likely trying to understand the complications that can occur if their condition worsens.
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Search interest for Hepatic pleural effusion grew by 341% over the last 3 months, from April 2022 to June 2022
Search interest for Breast cancer in the liver grew by 18% over the last 3 months, from April 2022 to June 2022.
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Users searching for nonalcoholic steatohepatitis also searched for breast cancer, and searches for the latter have increased over the last three months. Multiple studies have confirmed the association between non-alcoholic fatty liver disease (NAFLD) and breast cancer (NASH being a more serious form of NAFLD).
There are two reasons that explain this search pattern. Firstly, the two conditions share similar risk factors, and so NAFLD or NASH is often discovered around the same time as a breast cancer diagnosis. Secondly, NAFLD is a known side-effect of Tamoxifen, a drug that is commonly prescribed to prevent breast cancer recurrence. In these cases, people might be trying to weigh the benefits and risks of taking Tamoxifen.
People are searching for hepatic encephalopathy (or ‘HE’) alongside searches for NASH. Searches for HE have increased over the last 3 months, with the highest search volume coming from Kentucky, Missouri, and Connecticut. Severe NASH and more severe stages of NAFLD can lead to HE, a disorder caused by a buildup of toxins in the brain that can happen as a result of advanced liver disease. This very serious complication decreases brain function and can result in impairments in movement, changes to mood/personality, and coma.
The complications that can arise with NAFLD and NASH progression are frightening, and searches such as this indicate a desire for both knowledge and prevention support.
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Search interest for Hepatic encephalopathy grew by 18% over the last 3 months, from April 2022 to June 2022.
Search interest for Fatty liver ultrasound grew by 37% over the last 3 months, from April 2022 to June 2022.
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Searches for a variety of diagnostic techniques related to NASH have been trending, with ultrasonography being the most searched topic in this category. The most searches came from Florida, New York, and California.
NASH cannot be diagnosed through ultrasound, and it is likely that people are trying to understand if this non-invasive technique can be used instead of a liver biopsy that can confirm diagnosis and disease severity.
Patients and HCPs are people first, and what they engage with on forums and social media often gives a more nuanced, holistic view of their experiences with different medical conditions.
In this section, we feature some of the trends, products and topics related to NASH that people are talking about outside the clinical setting. We hope that these stories – which are often missed out in more formal market research – illuminate the lived experiences of patients and HCPs, while providing clues on how to better engage with them.
People are turning to TikTok for information about how to eat with a NASH diagnosis, and dieticians from North America have been the most popular recently. Dietician Andy De Santis from Toronto, has posted the most popular TikTok video that mentions NASH on April 28, with 95.5K views to date, followed by Philadelphia-based dietician Amy Kennett, who specializes in nutrition for NASH and has recently had 38.8K people view her video posted on April 3.
There is a lack of clarity among NASH patients about the diet modifications they should be adopting, as the conventional low-carb/high-fat approaches that typically result in weight loss can actually accelerate the progression of NASH.
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The Washington, D.C.-based Global Liver Institute established June 9 as International NASH Day five years ago as part of a public education campaign. Every year they ramp up the discussion about the condition on Twitter with the hashtags #NASHday, #InternationalNASHday, and#StopNASHNow. They host a conference that features NASH experts from around the world, and have just released educational materials for the general public in 16 languages.
They recently took to the streets to test knowledge and raise awareness about NASH, interviewing everyday people about the condition and posting it on Twitter.
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Prominent liver health advocate and Global Liver Institute CEO, Donna Cryer, recently tweeted about a Chinese study that suggests coffee and tea consumption might work to prevent liver cancer, one of the possible conditions that NASH can progress to.
Indeed, Twitter indicates that the buzz about the connection between coffee in particular and liver disease has been increasing in popular U.S. culture for well over a year. Searches for keywords that combine ‘fatty liver’ or ‘cirrhosis’ with ‘coffee’ have increased over the past three months. People are looking to influential sources to understand how they can incorporate dietary changes into their everyday lives to halt the progression of NAFLD.
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People invested in the evolving discussion about NASH are already getting geared up for this NASH-focused conference set to take place in Utah in January 2023. Its Twitter account (@NashTagConf) and corresponding hashtag (#NASHTAG) are already seeing engagement on Twitter from both professionals and people whose lives are impacted by the condition.
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Over the past year, people with NASH or NAFLD have been turning to Reddit for education and support. The hottest topics discussed have been about the implications of receiving a new diagnosis, reversing the progression of their condition, and diet modification. All of these topics have a lot of ambiguity surrounding them, and people are sharing tips and success stories.
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