Development and evaluation of a decision aid for BRCA carriers with breast cancer.
J Genet Couns
; 20(3): 294-307, 2011 Jun.
Article
em En
| MEDLINE
| ID: mdl-21369831
ABSTRACT
BRCA+ breast cancer patients face high risk for a second breast cancer and ovarian cancer. Helping these women decide among risk-reducing options requires effectively conveying complex, emotionally-laden, information. To support their decision-making needs, we developed a web-based decision aid (DA) as an adjunct to genetic counseling. Phase 1 used focus groups to determine decision-making needs. These findings and the Ottawa Decision Support Framework guided the DA development. Phase 2 involved nine focus groups of four stakeholder types (BRCA+ breast cancer patients, breast cancer advocates, and genetics and oncology professionals) to evaluate the DA's decision-making utility, information content, visual display, and implementation. Overall, feedback was very favorable about the DA, especially a values and preferences ranking-exercise and an output page displaying personalized responses. Stakeholders were divided as to whether the DA should be offered at-home versus only in a clinical setting. This well-received DA will be further tested to determine accessibility and effectiveness.
Texto completo:
1
Coleções:
01-internacional
Temas:
Geral
/
Prevencao_e_fatores_de_risco
/
Hereditariedade
/
Tipos_de_cancer
/
Outros_tipos
Base de dados:
MEDLINE
Assunto principal:
Neoplasias da Mama
/
Técnicas de Apoio para a Decisão
/
Genes BRCA1
/
Genes BRCA2
/
Triagem de Portadores Genéticos
Tipo de estudo:
Etiology_studies
/
Prognostic_studies
/
Qualitative_research
Limite:
Female
/
Humans
Idioma:
En
Revista:
J Genet Couns
Assunto da revista:
GENETICA MEDICA
Ano de publicação:
2011
Tipo de documento:
Article
País de afiliação:
Estados Unidos