Construction of a resource for advance care planning in multiple sclerosis (concure-SM): Results of cognitive debriefing with users

Background: ConCure-SM is a mixed-methods research project for developing and testing an advance care planning (ACP) intervention for people with progressive multiple sclerosis (pwPMS) in Italy. It consists of a booklet to be used during the ACP conversation (the focus of this presentation) and a training program for neurologists and other MS healthcare professionals (HPs). Aims: To assess the acceptability and comprehensibility of the ConCure-SM booklet. Methods: An inter-disciplinary panel translated and adapted to the Italian legislation and to the MS context a booklet developed by the National ACP programme for New Zealand. The booklet was then probed via individual cognitive interviews with pwPMS and caregivers, and a focus group meeting (FGM) with MS HPs. Two weeks before the interview/ FGM, held on digital platform due to the COVID-19 pandemic, participants received the booklet and were invited to browse it. Results: Between September-January 2021 we conducted 13 interviews which lasted between 36 and 80 minutes. Participants were 10 pwPMS and 3 caregivers (2 spouse, one daughter);8 were men, median age was 54 years. Data saturation was achieved after 11 interviews were analyzed. Twelve HPs participated in the FGM (7 neurologists, 3 psychologists, one nurse and one physiotherapist), which lasted 1.45 min. Thematic analysis (performed by LDP, SV, and LG) identified 4 overarching themes: comprehensibility and clarity;content acceptability and emotional impact;images and layout;suggestions for improvement. Interviews revealed that the booklet was useful and informative, though pwPMS found it emotionally taxing. The FGM was well participated;few experiential data on ACP emerged, lack of training and time constraint emerging as major reasons. Conclusions: Cognitive debriefing was key to refine the ConCure-SM booklet. Interview and FGM results corroborated use of the booklet within the ACP conversation, and the challenge of appraisal as a standalone tool.