A scoping review of patient and public perspectives on cell and gene therapies

Author:

Macpherson Karen1ORCID,Aiyegbusi Olalekan Lee234ORCID,Elston Lauren5,Myles Susan5,Washington Jennifer5,Sungum Nisha6,Briggs Mark7,Newsome Philip46ORCID,Calvert Melanie2348ORCID

Affiliation:

1. Healthcare Improvement Scotland, Glasgow, G1 2NP, UK

2. Centre for Patient Reported Outcome Research, Institute of Applied Health Research, University of Birmingham, Birmingham, B15 2TT, UK

3. National Institute for Health Research, Birmingham Biomedical Research Centre, University of Birmingham, Birmingham, B15 2TT, UK

4. National Institute for Health Research (NIHR) Applied Research Centre West Midlands, University of Birmingham, Birmingham, B15 2TT, UK

5. Health Technology Wales, Cardiff, CF10 4PL, UK

6. University Hospital Birmingham NHS Foundation Trust, Birmingham, B15 2GW, UK

7. Velindre University NHS Trust, Nantgarw, Cardiff, CF15 7QZ, UK

8. National Institute for Health Research Surgical Reconstruction & Microbiology Research Centre, University of Birmingham, Birmingham, B15 2TT, UK

Abstract

Aim: The development and introduction of cell and gene therapies presents complex social and economic issues. Fully addressing these challenges requires engagement with patients and the public. Materials & methods: A systematically conducted scoping review was undertaken to gauge current patient and public knowledge and perspectives, and as such inform requirements for future research, education and engagement activities. Results: A heterogeneous collection of 35 studies were identified. Levels of knowledge among patients and the public were extremely variable. Studies indicated general acceptance of therapies. Conclusion: The review identified the need for tailored educational activities, and in particular the importance of addressing misconceptions. There is also a need for robust qualitative research considering perspectives on current and forthcoming licensed therapies.

Funder

Innovate UK

Publisher

Future Medicine Ltd

Subject

Embryology,Biomedical Engineering

Reference49 articles.

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2. Directive 2001/83/EC of the european parliament and of the council of 6 November 2001 on the community code relating to medicinal products for human use. European Parliment. Strasbourg, France (2001).

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