Investigating barriers to genetic counseling and germline mutation testing in women with suspected hereditary breast and ovarian cancer syndrome and Lynch syndrome

© 2017 Elsevier B.V. Objective: The aim of the current study was to explore barriers to genetic counseling and testing in women with gynecological cancers deemed at significant risk of carrying a germline mutation. Methods: A qualitative study using semi-structured interviews and inductively analyse...

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Main Authors: Shaw, J., Bulsara, C., Cohen, P., Gryta, M., Nichols, C., Schofield, L., O'Sullivan, S., Pachter, N., Hardcastle, Sarah
Format: Journal Article
Published: Elsevier Ireland Ltd. 2018
Online Access:http://hdl.handle.net/20.500.11937/61823
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author Shaw, J.
Bulsara, C.
Cohen, P.
Gryta, M.
Nichols, C.
Schofield, L.
O'Sullivan, S.
Pachter, N.
Hardcastle, Sarah
author_facet Shaw, J.
Bulsara, C.
Cohen, P.
Gryta, M.
Nichols, C.
Schofield, L.
O'Sullivan, S.
Pachter, N.
Hardcastle, Sarah
author_sort Shaw, J.
building Curtin Institutional Repository
collection Online Access
description © 2017 Elsevier B.V. Objective: The aim of the current study was to explore barriers to genetic counseling and testing in women with gynecological cancers deemed at significant risk of carrying a germline mutation. Methods: A qualitative study using semi-structured interviews and inductively analysed thematically. Eight patients with ovarian or endometrial cancer participated in individual semi-structured telephone interviews that assessed motivation for genetic counseling and testing, perceived benefits and barriers, timing of the approach, perceptions of the referral process to genetic services and locus of control in relation to cancer and health. Results: Analysis of the interview transcripts revealed five themes relating to perceptions of genetic counseling and testing: Lack of importance; Level of information received; Timing of referral processes; Fear and anxiety; Resistance to and perceptions of counseling. Conclusions: Participants had a limited understanding of hereditary cancer syndromes and did not appreciate the benefits of genetic testing. A consistent approach at the time of referral to genetic services is needed to ensure that the level and format of information is appropriate for patients. Practice implications: The rationale for genetic testing needs to be better explained to patients and the timing of referral should be based both on treatment priorities and patient preferences.
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institution Curtin University Malaysia
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publishDate 2018
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spelling curtin-20.500.11937-618232018-05-25T03:45:38Z Investigating barriers to genetic counseling and germline mutation testing in women with suspected hereditary breast and ovarian cancer syndrome and Lynch syndrome Shaw, J. Bulsara, C. Cohen, P. Gryta, M. Nichols, C. Schofield, L. O'Sullivan, S. Pachter, N. Hardcastle, Sarah © 2017 Elsevier B.V. Objective: The aim of the current study was to explore barriers to genetic counseling and testing in women with gynecological cancers deemed at significant risk of carrying a germline mutation. Methods: A qualitative study using semi-structured interviews and inductively analysed thematically. Eight patients with ovarian or endometrial cancer participated in individual semi-structured telephone interviews that assessed motivation for genetic counseling and testing, perceived benefits and barriers, timing of the approach, perceptions of the referral process to genetic services and locus of control in relation to cancer and health. Results: Analysis of the interview transcripts revealed five themes relating to perceptions of genetic counseling and testing: Lack of importance; Level of information received; Timing of referral processes; Fear and anxiety; Resistance to and perceptions of counseling. Conclusions: Participants had a limited understanding of hereditary cancer syndromes and did not appreciate the benefits of genetic testing. A consistent approach at the time of referral to genetic services is needed to ensure that the level and format of information is appropriate for patients. Practice implications: The rationale for genetic testing needs to be better explained to patients and the timing of referral should be based both on treatment priorities and patient preferences. 2018 Journal Article http://hdl.handle.net/20.500.11937/61823 10.1016/j.pec.2017.12.011 Elsevier Ireland Ltd. restricted
spellingShingle Shaw, J.
Bulsara, C.
Cohen, P.
Gryta, M.
Nichols, C.
Schofield, L.
O'Sullivan, S.
Pachter, N.
Hardcastle, Sarah
Investigating barriers to genetic counseling and germline mutation testing in women with suspected hereditary breast and ovarian cancer syndrome and Lynch syndrome
title Investigating barriers to genetic counseling and germline mutation testing in women with suspected hereditary breast and ovarian cancer syndrome and Lynch syndrome
title_full Investigating barriers to genetic counseling and germline mutation testing in women with suspected hereditary breast and ovarian cancer syndrome and Lynch syndrome
title_fullStr Investigating barriers to genetic counseling and germline mutation testing in women with suspected hereditary breast and ovarian cancer syndrome and Lynch syndrome
title_full_unstemmed Investigating barriers to genetic counseling and germline mutation testing in women with suspected hereditary breast and ovarian cancer syndrome and Lynch syndrome
title_short Investigating barriers to genetic counseling and germline mutation testing in women with suspected hereditary breast and ovarian cancer syndrome and Lynch syndrome
title_sort investigating barriers to genetic counseling and germline mutation testing in women with suspected hereditary breast and ovarian cancer syndrome and lynch syndrome
url http://hdl.handle.net/20.500.11937/61823