Psychological outcomes and surgical decisions after genetic testing in women newly diagnosed with breast cancer with and without a family history

TFGT Collaborative Group

Research output: Contribution to journalArticle

Abstract

In patients with early breast cancer, personal and tumour characteristics other than family history are increasingly used to prompt genetic testing to guide women’s cancer management (treatment-focused genetic testing, ‘TFGT’). Women without a known strong family history of breast and/or ovarian may be more vulnerable to psychological sequelae arising from TFGT. We compared the impact of TFGT in women with (FH+) and without (FH−) a strong family history on psychological adjustment and surgical decisions. Women aged <50 years with high-risk features were offered TFGT before definitive breast cancer surgery and completed self-report questionnaires at four time points over 12 months. All 128 women opted for TFGT. TFGT identified 18 carriers of a disease-causing variant (50.0% FH+) and 110 non-carriers (59.1% FH+). There were no differences based on family history in bilateral mastectomy (BM) uptake, p = .190, or uptake of risk-reducing bilateral salpingo-oophorectomy (RRBSO), p = .093. FH− women had lower decreases in anxiety a year after diagnosis, p = .011, and regret regarding their decision whether to undergo BM, p = .022, or RRBSO, p = .016 than FH + women. FH− carriers reported significantly higher regret regarding their TFGT choice (p = .024) and test-related distress (p = .012) than FH + carriers, but this regret/distress could not be attributed to a concern regarding a possible worse prognosis. These findings indicate that FH− women may require additional counselling to facilitate informed decisions. Carriers without a family history may require additional follow-up counselling to facilitate psychological adjustment to their positive variant results, extra support in making surgical decisions, and counselling about how best to communicate results to family members.

Original languageEnglish
Pages (from-to)972–983
Number of pages12
JournalEuropean Journal of Human Genetics
Volume26
DOIs
Publication statusPublished - 30 Mar 2018

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Genetic Testing
Breast Neoplasms
Psychology
Counseling
Emotions
Mastectomy
Ovariectomy
Therapeutics
Self Report
Decision Making
Breast
Anxiety

Cite this

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title = "Psychological outcomes and surgical decisions after genetic testing in women newly diagnosed with breast cancer with and without a family history",
abstract = "In patients with early breast cancer, personal and tumour characteristics other than family history are increasingly used to prompt genetic testing to guide women’s cancer management (treatment-focused genetic testing, ‘TFGT’). Women without a known strong family history of breast and/or ovarian may be more vulnerable to psychological sequelae arising from TFGT. We compared the impact of TFGT in women with (FH+) and without (FH−) a strong family history on psychological adjustment and surgical decisions. Women aged <50 years with high-risk features were offered TFGT before definitive breast cancer surgery and completed self-report questionnaires at four time points over 12 months. All 128 women opted for TFGT. TFGT identified 18 carriers of a disease-causing variant (50.0{\%} FH+) and 110 non-carriers (59.1{\%} FH+). There were no differences based on family history in bilateral mastectomy (BM) uptake, p = .190, or uptake of risk-reducing bilateral salpingo-oophorectomy (RRBSO), p = .093. FH− women had lower decreases in anxiety a year after diagnosis, p = .011, and regret regarding their decision whether to undergo BM, p = .022, or RRBSO, p = .016 than FH + women. FH− carriers reported significantly higher regret regarding their TFGT choice (p = .024) and test-related distress (p = .012) than FH + carriers, but this regret/distress could not be attributed to a concern regarding a possible worse prognosis. These findings indicate that FH− women may require additional counselling to facilitate informed decisions. Carriers without a family history may require additional follow-up counselling to facilitate psychological adjustment to their positive variant results, extra support in making surgical decisions, and counselling about how best to communicate results to family members.",
author = "{TFGT Collaborative Group} and Bettina Meiser and Quinn, {Veronica F.} and Gillian Mitchell and Kathy Tucker and Watts, {Kaaren J.} and Belinda Rahman and Michelle Peate and Christobel Saunders and Elizabeth Geelhoed and Margaret Gleeson and Kristine Barlow-Stewart and Michael Field and Marion Harris and Antill, {Yoland C.} and Rachel Susman and Bowen, {Michael T.} and Llew Mills and Judy Kirk",
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Psychological outcomes and surgical decisions after genetic testing in women newly diagnosed with breast cancer with and without a family history. / TFGT Collaborative Group.

In: European Journal of Human Genetics, Vol. 26, 30.03.2018, p. 972–983.

Research output: Contribution to journalArticle

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T1 - Psychological outcomes and surgical decisions after genetic testing in women newly diagnosed with breast cancer with and without a family history

AU - TFGT Collaborative Group

AU - Meiser, Bettina

AU - Quinn, Veronica F.

AU - Mitchell, Gillian

AU - Tucker, Kathy

AU - Watts, Kaaren J.

AU - Rahman, Belinda

AU - Peate, Michelle

AU - Saunders, Christobel

AU - Geelhoed, Elizabeth

AU - Gleeson, Margaret

AU - Barlow-Stewart, Kristine

AU - Field, Michael

AU - Harris, Marion

AU - Antill, Yoland C.

AU - Susman, Rachel

AU - Bowen, Michael T.

AU - Mills, Llew

AU - Kirk, Judy

PY - 2018/3/30

Y1 - 2018/3/30

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