Centre for Patient Reported Outcomes Research, Institute of Applied Health Research, University of Birmingham, Birmingham, UK.
National Institute for Health Research Birmingham Biomedical Research Centre, University of Birmingham, Birmingham, UK.
Nat Commun. 2020 Dec 8;11(1):6265. doi: 10.1038/s41467-020-20096-1.
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.
细胞和基因疗法为用有潜力恢复功能和治愈疾病的方法治疗疾病提供了机会。然而，它们并非没有风险，并且给卫生系统带来了复杂的后勤、经济、伦理和社会挑战。在这里，我们报告了我们对细胞和基因疗法的患者和公众知识和观点的现有证据进行的系统评价，以为未来的研究、教育和提高认识活动提供信息。我们筛选了 10735 个标题和摘要，并评估了 151 篇出版物的全文。最终选择了 35 篇出版物。从研究结果的叙述性综合中产生了四个主题：（1）对细胞和基因疗法的知识和理解，（2）对细胞和基因疗法的接受程度，（3）对治疗风险和益处的理解，以及（4）信息需求和当前信息来源。作为潜在的资助者或未来的接受者，公众和患者了解这些疗法、理解所涉及的问题并能够为辩论做出贡献非常重要。本综述强调了对细胞和基因疗法的各个方面进行适当的患者和公众教育的必要性。需要进行高质量的研究，以探索患者和公众对细胞和基因疗法的意见和经验。这些疗法的患者和公众的看法，以及临床和成本效益的证据，将是其采用和使用的核心。
