Informational needs of individuals from families harboring BRCA pathogenic variants: A systematic review and content analysis.
Genet Med
; 25(4): 100001, 2023 04.
Article
en En
| MEDLINE
| ID: mdl-36549594
ABSTRACT
PURPOSE:
Personalized information is paramount to patient-centered communication and decision-making regarding risk management in hereditary cancer syndromes. This systematic review identified information needs of individuals from families harboring BRCA pathogenic variants and compared findings based on gender (women vs men) and clinical characteristics (patients with cancer vs previvors and BRCA heterozygotes vs untested relatives).METHODS:
We screened 8115 studies identified from databases and citation searching. The quality of selected studies was assessed using the Mixed Methods Appraisal Tool. Narrative synthesis was conducted based on content analysis.RESULTS:
From 18 selected studies including 1063 individuals, we identified 9 categories of information needs. Risk of bias in the selected studies was moderate. Men, untested relatives, and racial and ethnic minorities were underrepresented. Frequently required information was personalized cancer risk and risk-reducing strategies, including decision-making, family implications of hereditary cancers, psychological issues, and cascade testing. Subgroup analyses showed that information needs depended on gender, personal cancer history, and cascade testing in relatives.CONCLUSION:
We identified comprehensive and detailed informational needs of individuals from families harboring BRCA pathogenic variants and gaps in international guidelines. Needs for personalized information varied based on gender, health, and genetic testing status. Findings of this study have implications for genetic counseling, tailoring educational materials, and personalizing interventions.Palabras clave
Texto completo:
1
Bases de datos:
MEDLINE
Asunto principal:
Síndromes Neoplásicos Hereditarios
/
Neoplasias de la Mama
Tipo de estudio:
Guideline
/
Prognostic_studies
/
Systematic_reviews
Límite:
Female
/
Humans
/
Male
Idioma:
En
Revista:
Genet Med
Asunto de la revista:
GENETICA MEDICA
Año:
2023
Tipo del documento:
Article
País de afiliación:
Corea del Sur