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

Background and aims 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 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. Results We conducted 13 interviews (September-January 2021) which lasted between 36 and 80 min. Participants were 10 pwPMS and 3 caregivers; 8 were men, median age was 54 years. Twelve HPs participated in the FGM (7 neurologists, 3 psychologists, one nurse and one physiotherapist), which lasted 105 min. Thematic analysis 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 stand-alone tool.