Understanding Patient Preferences and Unmet Needs in Non-alcoholic Steatohepatitis (NASH): Insights from a Qualitative Online Bulletin Board Study

Abstract

IntroductionThe aim of this work was to understand how patients with non-alcoholic steatohepatitis (NASH) perceive their disease, unmet needs, and expectations regarding future treatment through online bulletin board (OBB) qualitative research.MethodsOBB is an asynchronous online qualitative market research tool that provides an open forum for interactive discussion among participants. Patients with NASH were recruited via physician referral and completed a screener questionnaire to ensure their eligibility and willingness to participate. A trained moderator managed the discussion that allowed open answers and responses to other participants’ posts. Patient responses were analyzed using a combination of different qualitative analytical tools.ResultsThe OBB ran for 4 days and included 16 patients (n = 8, UK; n = 8, US) with NASH (fibrosis stages F1–F3) and comorbidities including diabetes/prediabetes (n = 9) and obesity (n = 12). The key insights were (1) patients with NASH have a poor understanding of the disease, its progression, and management—they feel a lack of adequate educational support from their physicians; (2) diagnosis of NASH is incidental in most cases, mainly because patients fail to spontaneously associate their signs or symptoms with their liver condition; (3) comorbidities (obesity and diabetes) are more concerning to patients than NASH; and (4) patients perceive that NASH impacts their social life and work performance in more advanced stages.ConclusionsThis OBB provided valuable patient insights into NASH disease perception and management and revealed unmet need areas. In light of no approved therapies, these patient insights can inform early drug development strategies and stakeholder discussions on NASH.FundingNovartis Pharma AG, Basel.Electronic supplementary materialThe online version of this article (10.1007/s12325-018-0856-0) contains supplementary material, which is available to authorized users.

The Patient Perspectives on Future Therapeutic Options in NASH and Patient Needs

“…The aim of the design phase was to ensure a robust methodology for this research. To that end, inputs from patient online bulletin boards (OBB) (16) were considered and an in-depth 60-min telephone interview program with patients was used to test and refine patient survey questions. Interviewers for this phase were experienced in patient research with over 7 years of experience in moderating such discussions.…”

What's in a name? Renaming ‘NAFLD’ to ‘MAFLD’

“…Similar results were obtained from ‘Continuum Clinical’, a global patient recruitment and retention company which suggested that only 6% of patients at high risk of developing steaohepatitis are aware of the disease 61 . Another recent survey by The NASH Education Program™ suggested that just 4% of respondents had heard about NAFLD, 62 whereas another work has suggested that a majority of patients with NAFLD have a poor understanding of the disease 63 . Worryingly, there is substantial under appreciation of NAFLD by primary care clinicians and under‐recognition of the spectrum of the disease and how it can be assessed 64 .…”

Identification of Patient Needs and Preferences in Pigmented Villonodular Synovitis (PVNS) Using a Qualitative Online Bulletin Board Study

“…In this study, we used a qualitative OBB methodology to generate patient insights into disease perception, management and unmet needs associated with PVNS [ 27 – 29 ]. In our study, all the participants unanimously expressed that pain was a significant factor for emotional and psychological burden.…”

“…Qualitative research methods have often been considered complementary to quantitative methods and prudent use of such approaches may help develop a broader understanding of clinical realities [ 45 ]. We demonstrated that the OBB, being an asynchronous, moderated, closed online community platform, offers an optimal means to uncover patient insights for qualitative patient research, with both more common and rare disease patient populations [ 27 – 29 , 46 ].…”

“…Online bulletin boards (OBBs) provide an ideal opportunity to seek information, advice and opinions from individuals experiencing the same health problems and can serve as an important source of health-related information [ 20 , 26 ]. A number of studies have shown the utility of online focus group technique and asynchronous platforms (e.g., community discussion boards) to study various diseases and health-related issues in different disease conditions [ 27 – 29 ]; however, we had not previously used this approach with a rare disease patient population. Hence, we conducted a qualitative study using an OBB methodology to understand how PVNS patients perceive their disease and what the unmet needs or expectations are that could inform the development and design of a future drug treatment.…”