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

Karen Macpherson*, Olalekan Lee Aiyegbusi, Lauren Elston, Susan Myles, Jennifer Washington, Nisha Sungum , Mark Briggs, Philip Newsome, Melanie Calvert

*Corresponding author for this work

Research output: Contribution to journalReview articlepeer-review

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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.

Original languageEnglish
Pages (from-to)1005-1017
Number of pages13
JournalRegenerative Medicine
Volume16
Issue number11
Early online date23 Sept 2021
DOIs
Publication statusPublished - Nov 2021

Bibliographical note

Funding Information:
This work was funded by a Midlands-Wales Advanced Therapies Treatment Centre (MW-ATTC) program grant from Innovate UK to a consortium of partners including Health Technology Wales, the Welsh Blood Service and the University of Birmingham. The funder was not involved in any aspect of the research work. OL Aiyegbusi, PN Newsome and MJ Calvert were supported by the National Institute of Health Research (NIHR) Birmingham Biomedical Research Centre (BRC), West Midlands, Birmingham. OL Aiyegbusi also receives funding from the Health Foundation and personal fees from Gilead Sciences Ltd. MJ Calvert and PN Newsome are NIHR Senior Investigators. MJ Calvert receives funding from the NIHR Applied Research Collaboration, West Midlands and the NIHR Surgical Reconstruction and Microbiology Research Centre at the University of Birmingham and University Hospitals Birmingham NHS Foundation Trust, Health Data Research UK, Innovate UK (part of UK Research and Innovation), Macmillan Cancer Support, UCB Pharma. MJ Calvert has received personal fees from Astellas, Takeda, Merck, Daiichi Sankyo, Glaukos, GSK and the Patient-Centered Outcomes Research Institute (PCORI) outside the submitted work. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. No writing assistance was utilized in the production of this manuscript.

Publisher Copyright:
© 2021 Future Medicine Ltd.

Keywords

  • Cell and tissue based therapy
  • Genetic therapy
  • Health education
  • Health knowledge
  • Patient preference
  • Public opinion
  • attitudes
  • practice
  • health education
  • health knowledge
  • cell and tissue based therapy
  • patient preference
  • genetic therapy
  • public opinion

ASJC Scopus subject areas

  • Biomedical Engineering
  • Embryology

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