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Outcomes of support groups for carriers of BRCA 1/2 pathogenic variants and their relatives: a systematic review

Abstract

People tested positive for BRCA1/2 face an increased risk of cancer; to help them cope with the genetic information received, support to BRCA1/2 families should be continued after testing. Nonetheless how such support should be provided has not been established yet. As a potentially valuable option is represented by support groups, the aim of this systematic review was to assess studies exploring the outcomes of support groups for BRCA1/2 carriers. This study adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines and was registered in the International Prospective Register of Systematic Reviews (PROSPERO) database (CRD42021238416). Peer-reviewed papers published between January 1995 and February 2021 were searched for, using four databases. Among 1586 records identified, 34 papers were reviewed in full-text and eleven were included in the qualitative synthesis of the results. Three themes emerged as major focuses of support groups: risk management decisions, family dynamics and risk communication, and psychosocial functioning. Our findings show that support groups proved helpful in supporting women’s decision-making on risk-reducing options. Moreover, during those interventions, BRCA1/2 carriers had the opportunity to share thoughts and feelings, and felt that mutual support through interacting with other mutation carriers help them release the emotional pressure. However, no significant impact was reported in improving family communication. Overall, a high level of satisfaction and perceived helpfulness was reported for support group. The findings suggest that support groups represent a valuable tool for improving BRCA1/2 families care.

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Fig. 1: PRISMA flowchart of study selection.

Data availability

Data on subsequent steps of literature search and selection are available upon request.

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Acknowledgements

BB was supported by a grant awarded by Italian Ministry of Health (RF-2011-02352088).

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All the authors conceived the study. LG and DT designed the analytical plan and the bias assessment approach. BB and LG performed the literature search and draughted the manuscript. LG supervised the study. DT revised the manuscript. All authors approved the final version.

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Correspondence to Daniela Turchetti.

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The authors declare no competing interests.

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Approval by an Ethical Board was not required as this is a systematic review of published literature. However, it was registered in the “International Prospective Register of Systematic Review” (PROSPERO) in 2021 (CRD42021238416; Available from: https://www.crd.york.ac.uk/prospero/display_record.php?ID=%20CRD42021238416).

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Bertonazzi, B., Turchetti, D. & Godino, L. Outcomes of support groups for carriers of BRCA 1/2 pathogenic variants and their relatives: a systematic review. Eur J Hum Genet 30, 398–405 (2022). https://doi.org/10.1038/s41431-022-01044-7

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