Co-design of a paediatric oncology medicines database (ProCure) to support complex care provision for children with a hard-to-treat cancer

Carolyn G Mazariego; Skye McKay; Elijah Tyedmers; Lauren Kelada; Brittany C McGill; Rebecca Daly; Claire E Wakefield; David S Ziegler; Natalie Taylor

doi:10.3389/fmed.2024.1332434

Co-design of a paediatric oncology medicines database (ProCure) to support complex care provision for children with a hard-to-treat cancer

Front Med (Lausanne). 2024 Mar 28:11:1332434. doi: 10.3389/fmed.2024.1332434. eCollection 2024.

Authors

Carolyn G Mazariego¹, Skye McKay¹, Elijah Tyedmers¹, Lauren Kelada^{2

3}, Brittany C McGill^{2

3}, Rebecca Daly^{2

3}, Claire E Wakefield^{2

3}, David S Ziegler^{3

4}, Natalie Taylor¹

Affiliations

¹ School of Population Health, UNSW Medicine and Health, UNSW Sydney, Sydney, NSW, Australia.
² School of Clinical Medicine, University of New South Wales (UNSW) Sydney, Sydney, NSW, Australia.
³ Kids Cancer Centre, Sydney Children's Hospital, Sydney, NSW, Australia.
⁴ Children's Cancer Institute Australia, Lowy Cancer Research Centre, Sydney, NSW, Australia.

Abstract

Objectives: Paediatric 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.

Methods: This 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.

Results: Barriers 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.

Conclusion: ProCure 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.

Keywords: CFIR; co-design; implementation science; novel therapies; paediatric oncology; precision medicine.

Grants and funding

The author(s) declare that financial support was received for the research, authorship, and/or publication of this article. Funding for this research was supported by a Translational Programme Grant from the Cancer Institute NSW. RD was supported by Luminesce Alliance—Innovation for Children’s Health. Luminesce Alliance—Innovation for Children’s Health, was a not-for-profit cooperative joint venture between the Sydney Children’s Hospitals Network, the Children’s Medical Research Institute, and the Children’s Cancer Institute. It has been established with the support of the NSW Government to coordinate and integrate paediatric research. Luminesce Alliance is also affiliated with the University of Sydney and UNSW Sydney.