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

Lisa Marie Ballard Orcid Logo, Becky Band Orcid Logo, Anneke M. Lucassen Orcid Logo

European Journal of Human Genetics, Volume: 31, Issue: 9, Pages: 988 - 1002

Swansea University Author: Becky Band Orcid Logo

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DOI (Published version): 10.1038/s41431-023-01400-1

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 t...

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Published in: European Journal of Human Genetics
ISSN: 1018-4813 1476-5438
Published: Springer Science and Business Media LLC 2023
Online Access: Check full text

URI: https://cronfa.swan.ac.uk/Record/cronfa67967
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last_indexed 2025-01-09T20:32:14Z
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spelling 2024-12-18T17:06:58.3739063 v2 67967 2024-10-11 Interventions to support patients with sharing genetic test results with at-risk relatives: a synthesis without meta-analysis (SWiM) 06b53a31f254b004de8649a376ce2fbd 0000-0001-5403-1708 Becky Band Becky Band true false 2024-10-11 HSOC 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. Journal Article European Journal of Human Genetics 31 9 988 1002 Springer Science and Business Media LLC 1018-4813 1476-5438 1 9 2023 2023-09-01 10.1038/s41431-023-01400-1 COLLEGE NANME Health and Social Care School COLLEGE CODE HSOC Swansea University Another institution paid the OA fee Health Education England Genomics Education Programme; National Institute for Health Research Biomedical Research Centre Southampton. This work was also supported by funding from a Wellcome Trust collaborative award 208053/Z/17/Z 2024-12-18T17:06:58.3739063 2024-10-11T15:42:41.4473109 Faculty of Medicine, Health and Life Sciences The Centre for Innovative Ageing Lisa Marie Ballard 0000-0003-1017-4322 1 Becky Band 0000-0001-5403-1708 2 Anneke M. Lucassen 0000-0003-3324-4338 3
title Interventions to support patients with sharing genetic test results with at-risk relatives: a synthesis without meta-analysis (SWiM)
spellingShingle Interventions to support patients with sharing genetic test results with at-risk relatives: a synthesis without meta-analysis (SWiM)
Becky Band
title_short Interventions to support patients with sharing genetic test results with at-risk relatives: a synthesis without meta-analysis (SWiM)
title_full Interventions to support patients with sharing genetic test results with at-risk relatives: a synthesis without meta-analysis (SWiM)
title_fullStr Interventions to support patients with sharing genetic test results with at-risk relatives: a synthesis without meta-analysis (SWiM)
title_full_unstemmed Interventions to support patients with sharing genetic test results with at-risk relatives: a synthesis without meta-analysis (SWiM)
title_sort Interventions to support patients with sharing genetic test results with at-risk relatives: a synthesis without meta-analysis (SWiM)
author_id_str_mv 06b53a31f254b004de8649a376ce2fbd
author_id_fullname_str_mv 06b53a31f254b004de8649a376ce2fbd_***_Becky Band
author Becky Band
author2 Lisa Marie Ballard
Becky Band
Anneke M. Lucassen
format Journal article
container_title European Journal of Human Genetics
container_volume 31
container_issue 9
container_start_page 988
publishDate 2023
institution Swansea University
issn 1018-4813
1476-5438
doi_str_mv 10.1038/s41431-023-01400-1
publisher Springer Science and Business Media LLC
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str The Centre for Innovative Ageing{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}The Centre for Innovative Ageing
document_store_str 0
active_str 0
description 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.
published_date 2023-09-01T14:37:33Z
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