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Patient and public perspectives on cell and gene therapies: a systematic review
Olalekan Lee Aiyegbusi1,2,3,4, Karen Macpherson5, Lauren Elston6
1Centre for Patient Reported Outcomes Research, Institute of Applied Health Research, University of Birmingham, Birmingham, UK. O.L.Aiyegbusi@bham.ac.uk.
Abstract:
Cell and gene therapies offer opportunities for treating disease with potential to restore function, and cure disease. However, they are not without risk and pose complex logistical, economic, ethical and social challenges for health systems. Here we report our systematic review of the current evidence on patient and public knowledge and perspectives of cell and gene therapies, to inform future research, education and awareness raising activities. We screened 10,735 titles and abstracts, and evaluated the full texts of 151 publications. The final selection was 35 publications. Four themes were generated from the narrative synthesis of the study findings namely: (1) Knowledge and understanding of cell and gene therapies, (2) Acceptance of cell and gene therapies (3) Understanding of risk and benefits of therapy, and (4) Information needs and current sources of information. As potential funders or future recipients, it is important that the public and patients are aware of these therapies, understand the issues involved, and can contribute to the debate. This review highlights the need for appropriate patient and public education on the various aspects of cell and gene therapies. High quality studies exploring patient and public opinions and experiences of cell and gene therapy are required. Patient and public perceptions of these therapies, alongside evidence of clinical and cost-effectiveness, will be central to their uptake and use.
Insights
Patient and public understanding of cell and gene therapies is crucial for their acceptance and integration into healthcare. This systematic review highlights the need for enhanced education and further research into public perspectives on these transformative treatments.
Area of Science:
- Biomedical Science
- Health Systems Research
- Bioethics
Background:
- Cell and gene therapies represent a paradigm shift in medicine, offering potential cures for diseases.
- These advanced therapies present significant logistical, economic, ethical, and social challenges.
- Understanding public and patient perspectives is vital for successful implementation.
Purpose of the Study:
- To systematically review existing evidence on patient and public knowledge and perspectives regarding cell and gene therapies.
- To identify key themes related to understanding, acceptance, risk-benefit perception, and information needs.
- To inform future research, education, and public awareness initiatives.
Main Methods:
- Systematic review methodology.
- Screening of 10,735 titles and abstracts.
- Full-text evaluation of 151 publications, with 35 included in the final synthesis.
Main Results:
- Four major themes emerged: knowledge and understanding, acceptance, risk-benefit perception, and information sources.
- Patients and the public require greater awareness and comprehension of cell and gene therapies.
- There is a clear need for improved patient and public education on these complex treatments.
Conclusions:
- Effective patient and public education is essential for informed engagement with cell and gene therapies.
- Further high-quality research is needed to explore public opinions and experiences.
- Public perception, alongside clinical and economic evidence, will shape the future adoption of these therapies.
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