In 2018 Continuum Clinical conducted a social intelligence report—an analysis of online conversations centered around NASH. The report identified four key conversation themes: patient frustration, self-advocacy & community engagement, disruption, and lifestyle impact. The themes provided us with valuable insight into the NASH patient population and an understanding of overall NASH awareness.
This year, in order to gain perspective on the continued validity of the themes identified in 2018 and to identify new emerging themes, we have continued our social listening of NASH patients and extended the analysis to include physician conversations on NASH. We also conducted a first-of-its-kind NASH study site survey1 which allowed us to unearth insights into challenges study sites face when enrolling NASH clinical trials. The survey sampled clinical trial sites that have worked on NASH trials in the past 2 years and sites that are expecting to work on NASH trials in the next 12 months.
The 2020 social listening report2 revealed that the four key themes of 2018 are still evidenced today, as much of the online NASH conversations remained unchanged. Only 6.44% of the at-risk patient population was aware of NASH in 20193; this rose only 0.5% to 6.94% in 20204. The results of our site survey revealed this low awareness is directly impacting patient recruitment, with study sites citing lack of NASH awareness as one of the primary challenges to enrolling NASH trials.
While the conversations centered around NASH and NASH awareness itself remain idle, for those patients and physicians that are aware, common themes emerged.
Patient Conversations:
Frustration:
NASH patients continue to face frustrations around misdiagnosis, a prolonged diagnostic journey, and minimization of NASH-related symptoms from physicians. Patients also experience frustrations around the limited treatment options outside of improving diet and increasing exercise.
An account of a NASH patient on her journey to diagnosis:
“Back in July 2019 I had an abdominal ultrasound done showing that I had a fatty infiltrated liver. I’ve had FOUR appointments [with my physician] … she mentioned nothing about it. So, I sent the report to [another] doctor up in Portland and I was diagnosed with Non-alcoholic steatohepatitis (NASH).” (Instagram; September 18, 2019)
Self-Advocacy & Community Engagement
NASH patients continue to turn to online communities for support, discussing their symptoms and explaining the seriousness of a NASH diagnosis. The primary focus in these communities is overwhelmingly focused on diet and exercise routines that are helping to reduce NASH patients’ symptoms and, in some cases, resolving their NASH altogether.
Disruption/Lifestyle Impact
NASH patients continue to discuss the disruption NASH causes in their daily life. Most NASH patients have comorbidities that affect their quality of life; these are exacerbated with the addition of a NASH diagnosis. Some patients express concern about the potential for prescription medications leading to NASH.
A quote from one NASH patient, detailing their comorbidities in addition to NASH:
“It has been awhile for me posting but medical issues never end. Diabetes mellitus, Depressive Disorder (PTSD), Chronic Fatigue, Nonalcoholic fatty liver disease [+30 more listed conditions].” (American Diabetes Association Community; August 3, 2019)
Physician Conversations:
Our research indicates physicians are aware of NASH and frequently share NASH-related findings. This was most notable when Intercept released Phase 3 study results on its drug Ocaliva®. Notably, we found that more physicians are diagnosing patients with NASH/NAFLD, but are very rarely talking about NASH clinical trials.
NASH Site Survey Implications
The results from our NASH site survey indicate that sites are experiencing 3 key challenges to NASH clinical trial enrollment.
High screen/fail rate of NASH patients compared to other clinical trials
44% indicate this is a current problem; 40% anticipate the problem persisting
Patients unwilling to consent to a liver biopsy
44% indicate this as a current problem; 46% anticipate the problem to persist
Patients not aware NASH or patients not understanding what NASH is
33% indicate this as a current problem; 45% anticipate the problem to persist
Our findings from two years of social listening combined with the results from our site survey prove that better site solutions and site support will be required to enable study sites to successfully recruit and retain NASH patients. Learn more about our NASH clinical trial solutions at the 4th annual NASH Summit where Cathleen Dohrn, Ph.D., Vice President, Scientific Affairs will dig deeper into the NASH site survey data and share insights from a recent NASH clinical trial.
References
- 1.Continuum Clinical. (2020). NASH study site survey. [Data set].
- 2.Continuum Clinical. (2020). Annual NASH social listening tracking report. Northbrook, IL: Continuum Clinical.
- 3.Continuum Clinical. (2019). NASH incidence test survey. [Data set].
- 4.Continuum Clinical. (2020). NASH incidence test survey. [Data set].
