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.

Introduction:To gain insights into the needs, attitudes, perceptions, and preferences of people living with obesity using an online bulletin board (OBB) study. Methods: The OBB is a moderated asynchronous online qualitative market research method that allows interactive discussion among participants. Participants were recruited via physician referral followed by screening questions to ensure eligibility and willingness to participate. The discussions in the OBB were moderated and allowed anonymized open answers and responses. Analysis was performed using various qualitative analytical tools. Results: This OBB study included 23 participants (n = 11, UK; n = 12, USA). Participants expressed negative emotions associated with Enhanced Digital Features To view enhanced digital features for this article go to https://doi.org/10.6084/ m9.figshare.7660616.

INTRODUCTION:Pigmented villonodular synovitis (PVNS) is a very rare, benign proliferative tumor affecting the inner lining of synovial joints and tendon sheets. Information on treatment needs of PVNS patients to inform drug development is currently scarce, hence we conducted qualitative research with patients using an online bulletin board (OBB) methodology to generate insights on objective and emotional aspects related to the medical journey and living with this disease.METHODS:OBB is an asynchronous, online qualitative market research tool that allows participants to comprehensively answer pre-defined questions in a comprehensive manner. Patients were recruited via physician referral and underwent screening questions to ensure eligibility for the study and willingness to participate. The discussion was moderated, structured, and allowed open answers and in response to other participants posts. Analysis was conducted using a combination of different qualitative analytical tools.RESULTS:The patient OBB ran for 4 days with eleven participants (n = 3 Canada, n = 4 United Kingdom, n = 4 United States of America) aged 28–57 years, suffering from PVNS for 2–27 years. The key patient insights were: (i) pain is the primary factor, constituting a significant emotional and psychological burden; (ii) surgery (arthroscopy) does not get rid of PVNS, relapse rate was high in these patients; and (iii) PVNS has a big financial impact on patients, their families, and the healthcare system, due in particular to time off work/lost wages (patient & caretaker), for healthcare system it is repeat costs for surgeries/hospital stays plus other medical expenses. We also identified orthopedic specialists/surgeons are the physicians who predominantly manage PVNS at this point, as surgery is the only option.CONCLUSIONS:This study shows the suitability of the OBB for uncovering qualitative patient insights to inform decision making and strategy in early pharmaceutical drug development. OBB lends itself very well to uncovering patient insights which might not be revealed in focus group or telephone interviews, particularly in a rare disease like this. PVNS patients are in need of a medical drug treatment which can reduce pain, relapses and provide an alternative to surgery, the current standard of care.

Introduction: Pigmented villonodular synovitis (PVNS), also known as giant-cell tumour of the tendon sheath (GCTT), is a rare, benign proliferative tumour affecting the inner lining of synovial joints and tendon sheets. Information on treatment needs of PVNS patients to inform drug development is currently scarce. We conducted an exploratory qualitative study with PVNS patients to generate insights into the objective and emotional aspects related to their medical journey and experiences of living with this disease. Methods: A 4-day study using an online bulletin board (OBB), an asynchronous, online qualitative research platform, was conducted with patients recruited via physician referral who underwent screening questions to ensure eligibility for the study and willingness to participate. The discussion was moderated, was structured and allowed open answers in response to other participants' posts. Results: Eleven patients (4 from the USA, 4 from the UK and 3 from Canada; 45% female), aged 28-57 years, suffering from PVNS for 2-27 years participated in the study. Key patient insights from the study were: (1) pain was the topmost, spontaneous thought that the participants associated with PVNS, constituting a significant emotional and psychological burden; (2) surgery (arthroscopy) did not completely ameliorate symptoms associated with PVNS, as the relapse rate was high in these patients; (3) PVNS has a substantial negative financial impact on patients, their families and the healthcare system; (4) orthopaedic specialists/surgeons predominantly managed PVNS, as surgery is currently the only therapeutic option. Conclusion: PVNS patients expressed an urgent need for a medical drug treatment, which can reduce pain, avoid relapses and provide an alternative to surgery, the current standard of care.

OBJECTIVES: This qualitative online bulletin board (OBB) was conducted to gain insights into the needs, perceptions, attitudinal drivers and preferences of people living with obesity. METHODS: OBB is an asynchronous, online, qualitative tool that allows participants to comprehensively answer pre-defined questions. Patients were recruited via physician referral and undertook screening questions to ensure eligibility and willingness to participate. The discussion was moderated and structured and allowed open answers and responses to other participants' posts. Analysis was conducted using a combination of various qualitative analytical tools. RESULTS: The OBB was conducted for four days with 23 participants (11, UK; 12, USA), aged 35e65 years, with body mass index ranging from 30e39. The key insights were: (i) participants have negative emotions associated with their appearance; (ii) obesity has an impact on their social, sexual and work life and the feeling of loneliness causes food indulgence, especially during the evenings; (iii) appearance is the primary cause of anxiety while health is secondary; (iv) they understand the importance of weight reduction, but feel trapped in a 'cycle' where food is abused to overcome physical and emotional problems associated with being obese; (v) participants are not optimistic about weight-management measures (diet/exercise/medication) due to unsuccessful attempts and are apprehensive of trying out new measures and receive little/no support from healthcare providers, friends and family for weight-management; (vi) they prefer medications that would allow them to maintain their current lifestyle but cause visible weight reduction; (vii) along with medication, participants have a strong preference for an online support group with similar participants for motivation, support, adherence and sustained outcomes. CONCLUSIONS: As weight gain is a continuous process and losing excess weight is seen as a challenge, the qualitative insights from this OBB can be used for planning and successful execution of various weight-management programs.