Evidence map›Paper›PMID 33293538›Full record

SynthesisNature communications2020

Patient and public perspectives on cell and gene therapies: a systematic review.

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

Abstract readSystematic Review
In one paragraph

Synthesis in Nature communications, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 61 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
61citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

61 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Bioethics of somatic gene therapy: what do we know so far?Current medical research and opinion · 2023
    Pooled it
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1 more citing papers are in PubMed but not listed here.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors.

Olalekan Lee AiyegbusiCentre for Patient Reported Outcomes Research, Institute of Applied Health Research, University of Birmingham, Birmingham, UK. O.L.Aiyegbusi@bham.ac.uk.ORCID 0000-0001-9122-8251
Karen MacphersonHealthcare Improvement Scotland, Glasgow, Scotland, UK.
Lauren ElstonHealth Technology Wales, Cardiff, UK.
Susan MylesHealth Technology Wales, Cardiff, UK.
Jennifer WashingtonHealth Technology Wales, Cardiff, UK.
Nisha SungumBirmingham Health Partners Centre for Regulatory Science and Innovation, Birmingham, UK.
Mark BriggsWelsh Blood Service, Velindre University NHS Trust, Cardiff, UK.
Philip N NewsomeNational Institute for Health Research Birmingham Biomedical Research Centre, University of Birmingham, Birmingham, UK.
Melanie J CalvertCentre for Patient Reported Outcomes Research, Institute of Applied Health Research, University of Birmingham, Birmingham, UK.ORCID 0000-0002-1856-837X

Funding

Department of Health
6 · The paper itself

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.

Indexed as

Public OpinionCell TransplantationCost-Benefit AnalysisDelivery of Health CareGenetic TherapyHealth EducationHumansPatient Education as TopicQualitative Research

Identifiers

PMID33293538
PMCPMC7722871

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.