Results of an intervention for individuals and families with BRCA mutations: a model for providing medical updates and psychosocial support following genetic testing.
: 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.
McKinnon
Wendy
W
Department of Pediatrics, University of Vermont College of Medicine, Burlington, VT 05401, USA. wendy.mckinnon@vtmednet.org
Naud
Shelly
S
Ashikaga
Taka
T
Colletti
Rose
R
Wood
Marie
M
D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D051017:Apoptosis Regulatory Proteins; D019313:BRCA1 Protein / Q000235:genetics*; D024682:BRCA2 Protein / Q000235:genetics*; D001943:Breast Neoplasms / Q000235:genetics / Q000517:prevention & control / Q000523:psychology*; D003142:Communication; D003657:Decision Making; D003674:Defense Mechanisms; D005260:Female; D005500:Follow-Up Studies; D006580:Genetic Carrier Screening; D005817:Genetic Counseling / Q000379:methods*; D005820:Genetic Testing / Q000523:psychology*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008403:Mass Screening / Q000523:psychology; D008875:Middle Aged; D009154:Mutation / Q000235:genetics*; D010051:Ovarian Neoplasms / Q000235:genetics / Q000517:prevention & control / Q000523:psychology*; D010555:Personality Inventory; D015397:Program Evaluation; D012424:Rural Population; D014707:Vermont
D051017:Apoptosis Regulatory Proteins; C118024:BLID protein, human; D019313:BRCA1 Protein; C492913:BRCA1 protein, human; D024682:BRCA2 Protein; C551750:BRCA2 protein, human