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

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

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.

1018-4813
988-1002
Ballard, Lisa Marie
48a7b1af-4d2b-4ec7-8927-84361a3c62a9
Band, Rebecca
be8901bb-bb1b-4131-8e19-c1d4a3bdfb8d
Lucassen, Anneke M.
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Ballard, Lisa Marie
48a7b1af-4d2b-4ec7-8927-84361a3c62a9
Band, Rebecca
be8901bb-bb1b-4131-8e19-c1d4a3bdfb8d
Lucassen, Anneke M.
2eb85efc-c6e8-4c3f-b963-0290f6c038a5

Ballard, Lisa Marie, Band, Rebecca and Lucassen, Anneke M. (2023) Interventions to support patients with sharing genetic test results with at-risk relatives: a synthesis without meta-analysis (SWiM). European Journal of Human Genetics, 31 (9), 988-1002. (doi:10.1038/s41431-023-01400-1).

Record type: Review

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.

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More information

Accepted/In Press date: 22 May 2023
e-pub ahead of print date: 21 June 2023
Published date: September 2023

Identifiers

Local EPrints ID: 494078
URI: http://eprints.soton.ac.uk/id/eprint/494078
ISSN: 1018-4813
PURE UUID: cdc1ab11-496d-47a0-8e6b-55cfabfff02f
ORCID for Lisa Marie Ballard: ORCID iD orcid.org/0000-0003-1017-4322
ORCID for Rebecca Band: ORCID iD orcid.org/0000-0001-5403-1708
ORCID for Anneke M. Lucassen: ORCID iD orcid.org/0000-0003-3324-4338

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Date deposited: 23 Sep 2024 16:39
Last modified: 24 Sep 2024 01:46

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Author: Rebecca Band ORCID iD

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