Development of a Tool to Guide Parents Carrying a BRCA1/2 Mutation Share Genetic Results with Underage Children.
Although most parents carrying a BRCA1/2 genetic mutation share their test result with their underage children, they report needing support to decide if, when, and how to share risk information and what reactions to expect from their children. We developed a tool to guide parents carrying a BRCA1/2 mutation share their genetic result with underage children. Here, we report on the development of this tool using a qualitative methodology. A tool prototype was developed based on the International Patient Decision Aids Standards Collaboration framework. Content was assessed using feedback from focus groups, individual interviews, and a 12-item reading grid. Participants were nine BRCA1/2 mutation carriers with underage children and three cancer genetics health professionals. Thematic content analysis was conducted on interview transcripts. The tool was developed using an iterative process until saturation of data. An independent advisory committee was involved in all steps of tool development until reaching consensus. Rather than a decision aid per se (to communicate or not), the parents wanted a more comprehensive tool to help them communicate genetic test result to their children. To meet parents' needs, a communication guidance booklet was developed, setting out the pros and cons of communication, steps to prepare sharing the test result, communication tips, and parents' testimonies. This communication tool responds to a significant unmet need faced by parents carrying a genetic predisposition to cancer. Future studies are needed to assess how the information from the parent's genetic test result impacts the child's development, health behaviors, and relationship with the parent.
Faculté de pharmacie, Université Laval, Quebec, Canada.|Centre des maladies du sein Deschênes-Fabia, Quebec, Canada.|Centre de Recherche du CHU de Québec, Université Laval, Hôpital du Saint-Sacrement, 1050, chemin Sainte-Foy, Québec, G1S 4L8, Canada.
Ariane
A
Santerre-Theil
Centre des maladies du sein Deschênes-Fabia, Quebec, Canada.|Centre de Recherche du CHU de Québec, Université Laval, Hôpital du Saint-Sacrement, 1050, chemin Sainte-Foy, Québec, G1S 4L8, Canada.
Karine
K
Bouchard
Faculté de pharmacie, Université Laval, Quebec, Canada.|Centre des maladies du sein Deschênes-Fabia, Quebec, Canada.|Centre de Recherche du CHU de Québec, Université Laval, Hôpital du Saint-Sacrement, 1050, chemin Sainte-Foy, Québec, G1S 4L8, Canada.
Dominique
D
St-Pierre
Centre des maladies du sein Deschênes-Fabia, Quebec, Canada.|Centre de Recherche du CHU de Québec, Université Laval, Hôpital du Saint-Sacrement, 1050, chemin Sainte-Foy, Québec, G1S 4L8, Canada.
Anne-Marie
AM
Drolet
Centre des maladies du sein Deschênes-Fabia, Quebec, Canada.|Centre de Recherche du CHU de Québec, Université Laval, Hôpital du Saint-Sacrement, 1050, chemin Sainte-Foy, Québec, G1S 4L8, Canada.
Jocelyne
J
Chiquette
Faculté de pharmacie, Université Laval, Quebec, Canada. Michel.dorval@crchudequebec.ulaval.ca.|Centre des maladies du sein Deschênes-Fabia, Quebec, Canada. Michel.dorval@crchudequebec.ulaval.ca.|Centre de Recherche du CHU de Québec, Université Laval, Hôpital du Saint-Sacrement, 1050, chemin Sainte-Foy, Québec, G1S 4L8, Canada. Michel.dorval@crchudequebec.ulaval.ca.
Michel
M
Dorval
D000293:Adolescent; D019313:BRCA1 Protein / Q000235:genetics*; D024682:BRCA2 Protein / Q000235:genetics*; D003142:Communication; D003657:Decision Making; D003661:Decision Support Techniques; D005260:Female; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing / Q000379:methods; D006801:Humans; D008297:Male; D008875:Middle Aged; D009154:Mutation; D009369:Neoplasms / Q000235:genetics* / Q000523:psychology; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D014342:Truth Disclosure
D019313:BRCA1 Protein; C492913:BRCA1 protein, human; D024682:BRCA2 Protein; C551750:BRCA2 protein, human
Adolescents; BRCA1/2; Cancer genetic testing; Children; Decision aid; Educational material; Family communication; Hereditary breast and ovarian cancer syndrome; Parents