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Results of an Intervention for Individuals and Families with BRCA Mutations: A Model for Providing Medical Updates and Psychosocial Support Following Genetic Testing

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Journal of Genetic Counseling

Providing medical management updates and long-term support to families with hereditary cancer syndromes in rural areas is a challenge. To address this, we designed a one-day retreat for BRCA1/2 carriers in our region. The retreat included educational updates about medical management, genetic privacy and discrimination, and addressed psychological and family issues. Evaluations completed at the conclusion of the retreat were overwhelmingly positive with requests for a similar event in the future. The impact of this retreat on a variety of health behaviors was assessed. Eligible participants completed questionnaires before and 6 months after the retreat. Questionnaires focused on lifestyle, cancer screening and prevention practices, psychological history and distress, decision-making regarding genetic testing, and family communication issues. For individuals who completed both the pre and post retreat questionnaires, one-half made lifestyle changes and nearly two-thirds increased cancer screening, initiated chemoprevention, completed or planned to complete preventative surgery in the future. We conclude that this type of forum provides a valuable opportunity for BRCA carriers and their families to receive updated medical information, share personal experiences, provide and receive support, as well as change health behaviors.

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ACKNOWLEDGMENTS

Susan G. Komen Foundation for funding of this event. All the individuals and families who participated in the retreat. The Vermont Cancer Center for their help with the logistical planning of the retreat. All the University of Vermont faculty who devoted their time and energy in being part of the retreat.

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Authors and Affiliations

  1. Department of Pediatrics, University of Vermont College of Medicine, Burlington, VT 05401, USA

    Wendy McKinnon

  2. Department of Medical Biostatistics, University of Vermont College of Medicine, Burlington, VT 05401, USA

    Shelly Naud & Taka Ashikaga

  3. Cancer Patient Support Program, Fletcher Allen Health Care, Burlington, VT 05401, USA

    Rose Colletti

  4. Department of Medicine, University of Vermont College of Medicine, Burlington, VT 05401, USA

    Marie Wood

  5. Department of Pediatrics, 112 Colchester Avenue, Burlington, VT 05401, USA

    Wendy McKinnon

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  1. Wendy McKinnon
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Correspondence to Wendy McKinnon.

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McKinnon, W., Naud, S., Ashikaga, T. et al. Results of an Intervention for Individuals and Families with BRCA Mutations: A Model for Providing Medical Updates and Psychosocial Support Following Genetic Testing. J Genet Counsel 16, 433–456 (2007). https://doi.org/10.1007/s10897-006-9078-8

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  • DOI: https://doi.org/10.1007/s10897-006-9078-8

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