ArticleOpen research Europe2025
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.
Article in Open research Europe, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
17 authors.
Funding
No grant is acknowledged in the PubMed record.
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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.