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Åke Borg

Åke Borg

Principal investigator

Åke Borg

High patient satisfaction with a simplified BRCA1/2 testing procedure : long-term results of a prospective study

Author

  • Martin P. Nilsson
  • Erik D. Nilsson
  • Åke Borg
  • Yvonne Brandberg
  • Barbro Silfverberg
  • Niklas Loman

Summary, in English

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.

Department/s

  • Tumor microenvironment
  • Clinical Memory Research
  • Familial Breast Cancer
  • BioCARE: Biomarkers in Cancer Medicine improving Health Care, Education and Innovation

Publishing year

2019

Language

English

Pages

313-318

Publication/Series

Breast Cancer Research and Treatment

Volume

173

Issue

2

Document type

Journal article

Publisher

Springer

Topic

  • Cancer and Oncology

Keywords

  • BRCA1
  • BRCA2
  • Breast cancer
  • Genetic counseling
  • Satisfaction
  • Simplified

Status

Published

Research group

  • Clinical Memory Research
  • Familial Breast Cancer

ISBN/ISSN/Other

  • ISSN: 0167-6806