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Interventions to support patients with sharing genetic test results with at-risk relatives: a synthesis without meta-analysis (SWiM)

Abstract:
Whilst the finding of heritable susceptibility to disease was once relatively rare, mainstreaming of genetic testing has resulted in a steady increase. Patients are often encouraged to share their genetic test results with relevant relatives, but relatives may not receive this information, leaving them without knowledge of their own risk. Therefore, strategies to help communicate such information are important. This review aimed to explore the efficacy of existing interventions to improve the sharing of genetic test results. A synthesis without meta-analysis design was used. A systematic search of Medline, CINAHL, PsychINFO, and AMED was conducted, and five studies were identified worldwide. Data were extracted for each study regarding study aim, participant characteristics, condition, intervention details, comparison, study duration, outcome measures, theory and behaviour change techniques used. Limited efficacy and application of theory was found. Knowledge, motivation and self-efficacy were not increased in any intervention. No gender differences in communication behaviour were encountered in interventions that recruited men and women. Two studies reported an evaluation of acceptability, which showed that the interventions were well received by patients and health professionals. No study reported the involvement of the target population in any phase of intervention development. Given the lack of health psychology-informed interventions in this area of clinical genetics, we recommend genetic health professionals, health psychologists and patients collaborate on all stages of future interventions that involve the cascading of genetic health information within families. We also provide guidance regarding use of theory and intervention elements for future intervention development.
Publication status:
Published
Peer review status:
Peer reviewed

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Publisher copy:
10.1038/s41431-023-01400-1

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Role:
Author
ORCID:
0000-0003-1017-4322
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Role:
Author
ORCID:
0000-0001-5403-1708
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Institution:
University of Oxford
Role:
Author
ORCID:
0000-0003-3324-4338


Publisher:
Springer Nature [academic journals on nature.com]
Journal:
European Journal of Human Genetics More from this journal
Volume:
31
Issue:
9
Pages:
988-1002
Publication date:
2023-06-21
DOI:
EISSN:
1476-5438
ISSN:
1018-4813


Language:
English
Keywords:
Pubs id:
1489026
Local pid:
pubs:1489026
Source identifiers:
W4381598647
Deposit date:
2026-05-11
ARK identifier:
This ORA record was generated from metadata provided by an external service. It has not been edited by the ORA Team.

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