Behavioural analysis of referral and uptake of care pathways for rare tumour risk syndromes: A cross-cultural mixed-methods study protocol within the PREVENTABLE project

<ns4:p>Background Individuals with rare tumour risk syndromes (RTRS) navigate complex care pathways, including early diagnosis, monitoring, and tailored treatments, all requiring shared decision-making with their clinical team. Nevertheless, behavioural factors influencing this decision-making process and the best communication practices are unknown. PREVENTABLE, an EU-Horizon funded project, aims to assess the clinical, social and economic impact of RTRS-care pathways. Objective This study aims to identify the behavioural factors (i.e., barriers and facilitators) influencing i. the recommendation of RTRS-care pathways by clinical teams, ii. the uptake of the care pathways by patients with RTRS, and iii. the factors experienced by patients’ social networks. Methods A cross-cultural mixed-methods study with a sequential explanatory design will be conducted, consisting of i. a web-based survey study (quantitative phase), and ii. a qualitative study conducted through focus groups (qualitative phase). First, two international web-based surveys, following the COM-B model of behavioural change, will be developed aiming to investigate the barriers and facilitators to i) the recommendations of RTRS-care pathways provided by clinical teams (n=100), and ii) patients' adoption of the recommended RTRS-care pathways (n=290). The results will inform the focus groups phase aiming to provide an in-depth exploration of the main factors affecting the recommendation and adoption of RTRS-care pathways. The study will involve six countries, i.e., France, Germany, Netherlands, Norway, Spain, and Portugal. Both qualitative and quantitative data will first be analyzed separately, and then merged through data triangulation for final interpretation of the results. Conclusion This will be the first study exploring the behavioural factors influencing the recommendation and uptake of RTRS-care pathways. This study will guide the development of guidelines for the communication and recommendation of optimized care pathways for RTRS, which might enhance the referral and uptake of RTRS preventive strategies and inform the best care for RTRS.</ns4:p>