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Sharing genetic test results with family members of BRCA, PALB2, CHEK2, and ATM carriers.
Dean, Marleah; Tezak, Ann L; Johnson, Sabrina; Pierce, Joy K; Weidner, Anne; Clouse, Kate; Pal, Tuya; Cragun, Deborah.
Afiliação
  • Dean M; Department of Communication, University of South Florida, Tampa, FL, USA. Electronic address: marleahdeank@usf.edu.
  • Tezak AL; Vanderbilt-Ingram Cancer Center in the Department of Medicine, Division of Genetic Medicine, Vanderbilt University Medical Center, Nashville, TN, USA.
  • Johnson S; Department of Communication, University of South Florida, Tampa, FL, USA.
  • Pierce JK; Cleveland Clinic, Indian River Hospital, Vero Beach, FL, USA.
  • Weidner A; Vanderbilt-Ingram Cancer Center in the Department of Medicine, Division of Genetic Medicine, Vanderbilt University Medical Center, Nashville, TN, USA.
  • Clouse K; Department of Nursing, Vanderbilt University, Nashville, TN, USA.
  • Pal T; Vanderbilt-Ingram Cancer Center in the Department of Medicine, Division of Genetic Medicine, Vanderbilt University Medical Center, Nashville, TN, USA.
  • Cragun D; College of Public Health, University of South Florida, Tampa, FL, USA.
Patient Educ Couns ; 104(4): 720-725, 2021 04.
Article em En | MEDLINE | ID: mdl-33455826
OBJECTIVE: This study explored motivators and challenges/barriers to sharing personal genetic test results (GTR) with family members (FM). METHODS: Semi-structured, in-depth interviews were conducted with 62 women who had a pathogenic or likely pathogenic (P/LP) variant in aBRCA, PALB2, CHEK2, or ATM gene. Selective qualitative data analysis focused on eliciting motivators and challenges/barriers identified by participants when sharing their GTR with FM. RESULTS: Motivators to sharing personal GTR with FM included: health protection and prevention; moral obligation; decisional empowerment; familial ties; written resources; and contextualization for a familial cause for cancer. Challenges/barriers to family sharing included: concern for FM reactions; complexities of information; lack of closeness; perceived relevance; and emotional impact. CONCLUSIONS: All motivators and challenges/barriers were identified across BRCA and non-BRCA carriers, demonstrating commonalities in family sharing of GTR among high- to moderate-penetrance hereditary BC (breast cancer) genes. Despite challenges/barriers, participants disclosed their GTR with most close FM, yet restrictions in communication and/or strain on the timing, manner of disclosing, and strategies used varied across certain FM. PRACTICE IMPLICATIONS: These findings offer healthcare providers and researchers preliminary practical implications for broadly improving family sharing interventions across P/LP variants in BC risk genes by demonstrating important elements to include in family sharing letters.
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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Neoplasias da Mama / Predisposição Genética para Doença Idioma: En Ano de publicação: 2021 Tipo de documento: Article

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Neoplasias da Mama / Predisposição Genética para Doença Idioma: En Ano de publicação: 2021 Tipo de documento: Article