PGI44 - PATIENTS WITH NON-ALCOHOLIC STEATOHEPATITIS (NASH) REPORT POSITIVE EXPERIENCE AFTER PARTICIPATING IN AN ONLINE QUANTITATIVE PREFERENCE SURVEY

Abstract

NASH is a chronic liver disease with severe complications. Limited patient preference data exist for NASH. We report patients’ experience with the completion of an online patient preference survey. The Patient Preference study was an online 30-minute quantitative survey consisting of 42 questions (mix of single- and multiple-choice) around patients’ medical journey, their attitudes and feelings around the disease and its management, symptoms, the disease’s impact on their personal professional lives, together with a ranking and adaptive choice-based conjoint (ACBC) exercise concerning preferences for hypothetical medical treatments with different attributes. To understand the cognitive burden of the survey, patients’ survey experience was also evaluated with a set of questions covering complexity, length, participant engagement, and user-friendliness. A total of 153 patients (USA: 50, Germany: 50, Canada: 36, UK: 17) participated from November 2017 to May 2018 and completed the survey experience questionnaire. Overall, 73% (range: 59%-84%) of participants found the questions easy to understand. The majority of them (75%; 59%-81%) found that the survey length was ‘fine’ and they could concentrate throughout; 21% (16%-35%) felt it was a ‘bit lengthy’. The survey was found to be interesting and engaging by 67% (59%-84%) of participants. The survey platform worked well for the majority (77%; 71%-92%); and 18% (8%-28%) felt it was ‘OK, but could be improved’. Health-technology assessment warrants patient-based evidence and personal experience, therefore it is vital to use robust, systematic approaches to collect this data during the drug-development process. The results demonstrate that the online survey was manageable and successful in identifying patient experiences and needs, and the ACBC methodology lends itself well to this sort of patient preferences research with numerous attributes to be tested. Elements related to length of survey need to be assessed going forward in order to improve respondent experience.