Development and pilot testing of a leaflet informing women with breast cancer about genomic testing for polygenic risk

Rajneesh Kaur, Bettina Meiser, Tatiane Yanes, Mary-Anne Young, Kristine Barlow-Stewart, Tony Roscioli, Sian Smith, Paul A James

Research output: Contribution to journalArticle

Abstract

The inclusion of polygenic risk scores in breast cancer risk prediction models provides a more personalised and accurate prediction of breast cancer risk for women with and without breast cancer, who would otherwise receive negative results from traditional testing of moderate- and high-risk genes. This study aimed to develop, and pilot test a leaflet with a sample of women participating in a large prospective cohort study. The leaflet aimed to provide information about polygenic risk to assist women to decide whether or not to learn results from genomic testing for common risk variants associated with breast cancer risk. A prototype of the leaflet was developed based on published literature and with the expertise from a multidisciplinary team. The acceptability of the leaflet was assessed by self-report questionnaire among 29 women participating in the prospective cohort study. More than 80% participants stated that the leaflet was clear, informative and easy to understand and increased their understanding of polygenic risk information. While low to moderate levels of distress/worry were reported around implications of the test results for the next generation, 71% felt reassured and agreed that the information provided in the leaflet had helped them cope. Pilot-test results indicate the leaflet is acceptable to the participants and the revised leaflet can be used as an information tool for women undergoing genomic testing. This educational leaflet will become a useful information source to meet the information needs of women undergoing genomic testing.

Original languageEnglish
Pages (from-to)147-152
Number of pages6
JournalFamilial Cancer
Volume18
Issue number2
Early online date24 Sep 2018
DOIs
Publication statusPublished - 1 Apr 2019

Keywords

  • Breast cancer
  • Genomic testing
  • Leaflet
  • Polygenic risk score
  • Decision Making
  • Genetic Predisposition to Disease
  • Genetic Testing
  • Prospective Studies
  • Humans
  • Middle Aged
  • Neoplastic Syndromes, Hereditary/diagnosis
  • Patient Education as Topic/methods
  • Self Report/statistics & numerical data
  • Comprehension
  • Genetic Counseling
  • Breast Neoplasms/diagnosis
  • Pilot Projects
  • Adult
  • Female
  • Aged
  • Risk Assessment/methods
  • Australia
  • Adaptation, Psychological

ASJC Scopus subject areas

  • Genetics(clinical)
  • Genetics
  • Oncology
  • Cancer Research

Cite this

Kaur, R., Meiser, B., Yanes, T., Young, M-A., Barlow-Stewart, K., Roscioli, T., ... James, P. A. (2019). Development and pilot testing of a leaflet informing women with breast cancer about genomic testing for polygenic risk. Familial Cancer, 18(2), 147-152. https://doi.org/10.1007/s10689-018-0104-4

Development and pilot testing of a leaflet informing women with breast cancer about genomic testing for polygenic risk. / Kaur, Rajneesh; Meiser, Bettina; Yanes, Tatiane; Young, Mary-Anne; Barlow-Stewart, Kristine; Roscioli, Tony; Smith, Sian; James, Paul A.

In: Familial Cancer, Vol. 18, No. 2, 01.04.2019, p. 147-152.

Research output: Contribution to journalArticle

Kaur, R, Meiser, B, Yanes, T, Young, M-A, Barlow-Stewart, K, Roscioli, T, Smith, S & James, PA 2019, 'Development and pilot testing of a leaflet informing women with breast cancer about genomic testing for polygenic risk', Familial Cancer, vol. 18, no. 2, pp. 147-152. https://doi.org/10.1007/s10689-018-0104-4
Kaur, Rajneesh ; Meiser, Bettina ; Yanes, Tatiane ; Young, Mary-Anne ; Barlow-Stewart, Kristine ; Roscioli, Tony ; Smith, Sian ; James, Paul A. / Development and pilot testing of a leaflet informing women with breast cancer about genomic testing for polygenic risk. In: Familial Cancer. 2019 ; Vol. 18, No. 2. pp. 147-152.
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