학술논문

Co-design of a paediatric oncology medicines database (ProCure) to support complex care provision for children with a hard-to-treat cancer
Document Type
article
Source
Frontiers in Medicine, Vol 11 (2024)
Subject
paediatric oncology
precision medicine
novel therapies
co-design
implementation science
CFIR
Medicine (General)
R5-920
Language
English
ISSN
2296-858X
Abstract
ObjectivesPaediatric oncologists often encounter challenges when seeking compassionate access to off-label therapies for their patients. This study employed implementation science and co-design techniques to develop the ProCure medicines database, with the goal of streamlining the application process and addressing identified barriers in paediatric oncology.MethodsThis study utilised an exploratory qualitative research design. Seventeen healthcare providers, including oncologists, nurse consultants, and allied health professionals, participated in semi-structured interviews guided by the Consolidated Framework for Implementation Research (CFIR) and a visual process map aid. Deductive qualitative data analysis, according to the CFIR constructs, identified key barriers and facilitators. Collaborative design sessions engaged multidisciplinary teams to develop the ProCure beta version.ResultsBarriers to off-label therapy access included resource-intensive applications, time sensitive decision-making, and complex pharmaceutical information. Facilitators included Drug Access Navigators, Molecular Tumour Boards, and a multi-disciplinary approach. ProCure addressed end-user needs by centralising medicines information. Additional features suggested by healthcare providers included blood–brain-barrier penetrability data and successful application examples.ConclusionProCure represents a promising solution to the challenges paediatric oncologists face in accessing off-label therapies. By centralising information, it simplifies the application process, aids decision-making, and promotes a collaborative approach to patient care. The potential of the database to stream and enhance off-label therapy access underscores its relevance in improving paediatric oncology practise. Further research and implementation efforts are warranted to assess ProCure’s real-world impact and refine its features based on user feedback.