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High patient satisfaction with a simplified BRCA1/2 testing procedure: long-term results of a prospective study.
Nilsson, Martin P; Nilsson, Erik D; Borg, Åke; Brandberg, Yvonne; Silfverberg, Barbro; Loman, Niklas.
Afiliação
  • Nilsson MP; Division of Oncology and Pathology, Department of Clinical Sciences, Lund University, Lund, Sweden. martin.nilsson@med.lu.se.
  • Nilsson ED; Department of Hematology, Oncology and Radiation Physics, Skåne University Hospital, Lund, Sweden. martin.nilsson@med.lu.se.
  • Borg Å; Clinical Memory Research Unit, Department of Clinical Sciences Malmö, Lund University, Lund, Sweden.
  • Brandberg Y; Division of Oncology and Pathology, Department of Clinical Sciences, Lund University, Lund, Sweden.
  • Silfverberg B; Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden.
  • Loman N; Department of Clinical Genetics, Laboratory Medicine Region Skåne, Lund, Sweden.
Breast Cancer Res Treat ; 173(2): 313-318, 2019 Jan.
Article em En | MEDLINE | ID: mdl-30311024
ABSTRACT

PURPOSE:

In the BRCAsearch study, unselected breast cancer patients were prospectively offered germline BRCA1/2 mutation testing through a simplified testing procedure. The purpose of the present study was to evaluate satisfaction with the BRCAsearch testing procedure and, furthermore, to report on uptake rates of prophylactic surgeries among mutation carriers.

METHODS:

Pre-test information was provided by a standardized invitation letter instead of in-person genetic counseling. The patients were offered contact with a genetic counselor for telephone genetic counseling if they felt a need for that. Mutation carriers were telephoned and given a time for a face-to-face post-test genetic counseling appointment. Non-carriers were informed about the test result through a letter. One year after the test results were delivered, a study-specific questionnaire was mailed to the study participants who had consented to testing. The response rate was 83.1% (448 of 539).

RESULTS:

A great majority (96.0%) of the responders were content with the method used for providing information within the study, and 98.7% were content with having pursued genetic testing. 11.1% answered that they would have liked to receive more oral information. In an adjusted logistic regression model, patients with somatic comorbidity (OR 2.56; P = 0.02) and patients born outside of Sweden (OR 3.54; P = 0.01) were more likely, and patients with occupations requiring at least 3 years of university or college education (OR 0.37; P = 0.06) were less likely to wanting to receive more oral information. All 11 mutation carriers attended post-test genetic counseling. At a median follow-up of 2 years, the uptake of prophylactic salpingo-oophorectomy was 100%, and the uptake of prophylactic mastectomy was 55%.

CONCLUSIONS:

Satisfaction with a simplified BRCA1/2 testing procedure was very high. Written pre-test information has now replaced in-person pre-test counseling for breast cancer patients in our health care region.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Neoplasias da Mama / Testes Genéticos / Satisfação do Paciente / Proteína BRCA1 / Proteína BRCA2 Tipo de estudo: Observational_studies / Prognostic_studies / Qualitative_research / Risk_factors_studies Limite: Aged / Aged80 / Female / Humans / Middle aged Idioma: En Ano de publicação: 2019 Tipo de documento: Article

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Neoplasias da Mama / Testes Genéticos / Satisfação do Paciente / Proteína BRCA1 / Proteína BRCA2 Tipo de estudo: Observational_studies / Prognostic_studies / Qualitative_research / Risk_factors_studies Limite: Aged / Aged80 / Female / Humans / Middle aged Idioma: En Ano de publicação: 2019 Tipo de documento: Article