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
Year: 2025
Type: article
Study design: Study Protocol
Abstract: 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. Objective: This study aims to identify the behavioural factors (i.e., barriers and facilitators) influencing i. the recommendation of RTRS-care pathways by members of clinical teams, ii. the uptake of the care pathways by patients with RTRS, and iii. The factors experienced by patients' social networks. This study is part of PREVENTABLE, an EU-Horizon funded project, aiming to assess the clinical, social and economic impact of RTRS-care pathways. 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 by 100 members of clinical teams managing these syndromes, and ii) the uptake of the recommended care pathways by 290 patients with RTRS. 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.
Source: Open Research Europe
Institutions: University of Lisbon, Comprehensive Health Research Centre, Universidade Nova de Lisboa, Hospital CUF Descobertas, Hospital de Egas Moniz, Hospital Lusíadas Lisboa, Universidade do Porto, Hospital de São João, Institute of Public Health, University of Porto, Institut Català d'Oncologia, Institut d'Investigació Biomèdica de Girona, ERN GENTURIS, Vall d'Hebron Hospital Universitari, Vall d'Hebron Institute of Oncology, Inserm, Université de Rouen Normandie, Centre Henri Becquerel, Radboud University Nijmegen, Radboud University Medical Center, University of Bonn, University Hospital Bonn, Haukeland University Hospital, Comprehensive Health Research Centre Escola Nacional Saúde Pública
Language: English
Subfield: Genetics
Domain: Life Sciences
Open Access status: gold
Estimated APC paid: $841
Award: G3239905580
OpenAlex ID: W4409457572