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

Nilsson, Martin P. LU ; Nilsson, Erik D. LU ; Borg, Åke LU ; Brandberg, Yvonne; Silfverberg, Barbro and Loman, Niklas LU (2018) In Breast Cancer Research and Treatment
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... (More)

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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author
organization
publishing date
type
Contribution to journal
publication status
epub
subject
keywords
BRCA1, BRCA2, Breast cancer, Genetic counseling, Satisfaction, Simplified
in
Breast Cancer Research and Treatment
publisher
Springer
external identifiers
  • scopus:85055255493
ISSN
0167-6806
DOI
10.1007/s10549-018-5000-y
language
English
LU publication?
yes
id
af67fb16-5c6d-4dac-a8e0-17f51bcbc249
date added to LUP
2018-11-20 08:18:05
date last changed
2019-02-20 11:36:44
@article{af67fb16-5c6d-4dac-a8e0-17f51bcbc249,
  abstract     = {<p>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.</p>},
  author       = {Nilsson, Martin P. and Nilsson, Erik D. and Borg, Åke and Brandberg, Yvonne and Silfverberg, Barbro and Loman, Niklas},
  issn         = {0167-6806},
  keyword      = {BRCA1,BRCA2,Breast cancer,Genetic counseling,Satisfaction,Simplified},
  language     = {eng},
  month        = {10},
  publisher    = {Springer},
  series       = {Breast Cancer Research and Treatment},
  title        = {High patient satisfaction with a simplified BRCA1/2 testing procedure : long-term results of a prospective study},
  url          = {http://dx.doi.org/10.1007/s10549-018-5000-y},
  year         = {2018},
}