Evaluation of a patient decision aid for BRCA1/2 pathogenic variant carriers choosing an ovarian cancer prevention strategy

M.P. Steenbeek; M.H.D. van Bommel; M.G. Harmsen; N. Hoogerbrugge; H.C. van Doorn; J.H.M. Keurentjes; M. van Beurden; R.P. Zweemer; K.N. Gaarenstroom; C.G.J. Penders; M.M.A. Brood-van Zanten; M.C. Vos; J.M. Piek; L.R.C.W. van Lonkhuijzen; M.J.A. Apperloo; S.F.P.J. Coppus; J. IntHout; J.A. de Hullu; R.P.M.G. Hermens

doi:10.1016/j.ygyno.2021.08.019

Evaluation of a patient decision aid for BRCA1/2 pathogenic variant carriers choosing an ovarian cancer prevention strategy

M.P. Steenbeek, M.H.D. van Bommel^*, M.G. Harmsen, N. Hoogerbrugge, H.C. van Doorn, J.H.M. Keurentjes, M. van Beurden, R.P. Zweemer, K.N. Gaarenstroom, C.G.J. Penders, M.M.A. Brood-van Zanten, M.C. Vos, J.M. Piek, L.R.C.W. van Lonkhuijzen, M.J.A. Apperloo, S.F.P.J. Coppus, J. IntHout, J.A. de Hullu, R.P.M.G. Hermens

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

Abstract

Objective. Risk-reducing surgery is advised to BRCA1/2 pathogenic variant (PV) carriers around the age of 40 years to reduce ovarian cancer risk. In the TUBA-study, a multicenter preference study (NCT02321228), BRCA1/2-PV carriers are offered a choice: the standard strategy of risk-reducing salpingo-oophorectomy or the novel strategy of risk-reducing salpingectomy with delayed oophorectomy. We evaluated feasibility and effectiveness of a patient decision aid for this choice. Methods. Premenopausal BRCA1/2-PV carriers were counselled for risk-reducing surgical options in the TUBA study; the first cohort was counselled without and the second cohort with decision aid. Evaluation was performed using digital questionnaires for participating women and their healthcare professionals. Outcome measures included actual choice, feasibility (usage and experiences) and effectiveness (knowledge, cancer worry, decisional conflict, decisional regret and self-estimated influence on decision). Results. 283 women were counselled without and 282 women with decision aid. The novel strategy was chosen less frequently in women without compared with women with decision aid (67% vs 78%, p = 0.004). The decision aid was graded with an 8 out of 10 by both women and professionals, and 78% of the women would rec-ommend this decision aid to others. Users of the decision aid reported increased knowledge about the options and increased insight in personal values. Knowledge on cancer risk, decisional conflict, decisional regret and can-cer worry were similar in both cohorts. Conclusions. The use of the patient decision aid for risk-reducing surgery is feasible, effective and highly ap-preciated among BRCA1/2-PV carriers facing the decision between salpingo-oophorectomy or salpingectomy with delayed oophorectomy. (c) 2021 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY license (http:// creativecommons.org/licenses/by/4.0/).

Original language	English
Pages (from-to)	371-377
Number of pages	7
Journal	Gynecologic Oncology
Volume	163
Issue number	2
DOIs	https://doi.org/10.1016/j.ygyno.2021.08.019
Publication status	Published - 1 Nov 2021

Keywords

Decision aid
BRCA
Ovarian cancer
Risk-reducing salpingo-oophorectomy
Salpingectomy
BRCA1/2 MUTATION CARRIERS
RISK-REDUCING SURGERY
RANDOMIZED-TRIAL
SALPINGO-OOPHORECTOMY
BREAST-CANCER
WOMEN
ASSOCIATION
VALIDATION
DISTRESS
SURVIVAL

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Steenbeek, M. P., van Bommel, M. H. D., Harmsen, M. G., Hoogerbrugge, N., van Doorn, H. C., Keurentjes, J. H. M., van Beurden, M., Zweemer, R. P., Gaarenstroom, K. N., Penders, C. G. J., Brood-van Zanten, M. M. A., Vos, M. C., Piek, J. M., van Lonkhuijzen, L. R. C. W., Apperloo, M. J. A., Coppus, S. F. P. J., IntHout, J., de Hullu, J. A., & Hermens, R. P. M. G. (2021). Evaluation of a patient decision aid for BRCA1/2 pathogenic variant carriers choosing an ovarian cancer prevention strategy. Gynecologic Oncology, 163(2), 371-377. https://doi.org/10.1016/j.ygyno.2021.08.019

@article{56adc322e6534c13ae8dc167f207fe2d,

title = "Evaluation of a patient decision aid for BRCA1/2 pathogenic variant carriers choosing an ovarian cancer prevention strategy",

abstract = "Objective. Risk-reducing surgery is advised to BRCA1/2 pathogenic variant (PV) carriers around the age of 40 years to reduce ovarian cancer risk. In the TUBA-study, a multicenter preference study (NCT02321228), BRCA1/2-PV carriers are offered a choice: the standard strategy of risk-reducing salpingo-oophorectomy or the novel strategy of risk-reducing salpingectomy with delayed oophorectomy. We evaluated feasibility and effectiveness of a patient decision aid for this choice. Methods. Premenopausal BRCA1/2-PV carriers were counselled for risk-reducing surgical options in the TUBA study; the first cohort was counselled without and the second cohort with decision aid. Evaluation was performed using digital questionnaires for participating women and their healthcare professionals. Outcome measures included actual choice, feasibility (usage and experiences) and effectiveness (knowledge, cancer worry, decisional conflict, decisional regret and self-estimated influence on decision). Results. 283 women were counselled without and 282 women with decision aid. The novel strategy was chosen less frequently in women without compared with women with decision aid (67% vs 78%, p = 0.004). The decision aid was graded with an 8 out of 10 by both women and professionals, and 78% of the women would rec-ommend this decision aid to others. Users of the decision aid reported increased knowledge about the options and increased insight in personal values. Knowledge on cancer risk, decisional conflict, decisional regret and can-cer worry were similar in both cohorts. Conclusions. The use of the patient decision aid for risk-reducing surgery is feasible, effective and highly ap-preciated among BRCA1/2-PV carriers facing the decision between salpingo-oophorectomy or salpingectomy with delayed oophorectomy. (c) 2021 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY license (http:// creativecommons.org/licenses/by/4.0/).",

keywords = "Decision aid, BRCA, Ovarian cancer, Risk-reducing salpingo-oophorectomy, Salpingectomy, BRCA1/2 MUTATION CARRIERS, RISK-REDUCING SURGERY, RANDOMIZED-TRIAL, SALPINGO-OOPHORECTOMY, BREAST-CANCER, WOMEN, ASSOCIATION, VALIDATION, DISTRESS, SURVIVAL",

author = "M.P. Steenbeek and {van Bommel}, M.H.D. and M.G. Harmsen and N. Hoogerbrugge and {van Doorn}, H.C. and J.H.M. Keurentjes and {van Beurden}, M. and R.P. Zweemer and K.N. Gaarenstroom and C.G.J. Penders and {Brood-van Zanten}, M.M.A. and M.C. Vos and J.M. Piek and {van Lonkhuijzen}, L.R.C.W. and M.J.A. Apperloo and S.F.P.J. Coppus and J. IntHout and {de Hullu}, J.A. and R.P.M.G. Hermens",

note = "Funding Information: The study was funded by the Dutch Cancer Society , grant KUN 2014-7187 . Publisher Copyright: {\textcopyright} 2021 The Authors",

year = "2021",

month = nov,

day = "1",

doi = "10.1016/j.ygyno.2021.08.019",

language = "English",

volume = "163",

pages = "371--377",

journal = "Gynecologic Oncology",

issn = "0090-8258",

publisher = "Elsevier Science",

number = "2",

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Steenbeek, MP, van Bommel, MHD, Harmsen, MG, Hoogerbrugge, N, van Doorn, HC, Keurentjes, JHM, van Beurden, M, Zweemer, RP, Gaarenstroom, KN, Penders, CGJ, Brood-van Zanten, MMA, Vos, MC, Piek, JM, van Lonkhuijzen, LRCW, Apperloo, MJA, Coppus, SFPJ, IntHout, J, de Hullu, JA & Hermens, RPMG 2021, 'Evaluation of a patient decision aid for BRCA1/2 pathogenic variant carriers choosing an ovarian cancer prevention strategy', Gynecologic Oncology, vol. 163, no. 2, pp. 371-377. https://doi.org/10.1016/j.ygyno.2021.08.019

TY - JOUR

T1 - Evaluation of a patient decision aid for BRCA1/2 pathogenic variant carriers choosing an ovarian cancer prevention strategy

AU - Steenbeek, M.P.

AU - van Bommel, M.H.D.

AU - Harmsen, M.G.

AU - Hoogerbrugge, N.

AU - van Doorn, H.C.

AU - Keurentjes, J.H.M.

AU - van Beurden, M.

AU - Zweemer, R.P.

AU - Gaarenstroom, K.N.

AU - Penders, C.G.J.

AU - Brood-van Zanten, M.M.A.

AU - Vos, M.C.

AU - Piek, J.M.

AU - van Lonkhuijzen, L.R.C.W.

AU - Apperloo, M.J.A.

AU - Coppus, S.F.P.J.

AU - IntHout, J.

AU - de Hullu, J.A.

AU - Hermens, R.P.M.G.

PY - 2021/11/1

Y1 - 2021/11/1

N2 - Objective. Risk-reducing surgery is advised to BRCA1/2 pathogenic variant (PV) carriers around the age of 40 years to reduce ovarian cancer risk. In the TUBA-study, a multicenter preference study (NCT02321228), BRCA1/2-PV carriers are offered a choice: the standard strategy of risk-reducing salpingo-oophorectomy or the novel strategy of risk-reducing salpingectomy with delayed oophorectomy. We evaluated feasibility and effectiveness of a patient decision aid for this choice. Methods. Premenopausal BRCA1/2-PV carriers were counselled for risk-reducing surgical options in the TUBA study; the first cohort was counselled without and the second cohort with decision aid. Evaluation was performed using digital questionnaires for participating women and their healthcare professionals. Outcome measures included actual choice, feasibility (usage and experiences) and effectiveness (knowledge, cancer worry, decisional conflict, decisional regret and self-estimated influence on decision). Results. 283 women were counselled without and 282 women with decision aid. The novel strategy was chosen less frequently in women without compared with women with decision aid (67% vs 78%, p = 0.004). The decision aid was graded with an 8 out of 10 by both women and professionals, and 78% of the women would rec-ommend this decision aid to others. Users of the decision aid reported increased knowledge about the options and increased insight in personal values. Knowledge on cancer risk, decisional conflict, decisional regret and can-cer worry were similar in both cohorts. Conclusions. The use of the patient decision aid for risk-reducing surgery is feasible, effective and highly ap-preciated among BRCA1/2-PV carriers facing the decision between salpingo-oophorectomy or salpingectomy with delayed oophorectomy. (c) 2021 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY license (http:// creativecommons.org/licenses/by/4.0/).

AB - Objective. Risk-reducing surgery is advised to BRCA1/2 pathogenic variant (PV) carriers around the age of 40 years to reduce ovarian cancer risk. In the TUBA-study, a multicenter preference study (NCT02321228), BRCA1/2-PV carriers are offered a choice: the standard strategy of risk-reducing salpingo-oophorectomy or the novel strategy of risk-reducing salpingectomy with delayed oophorectomy. We evaluated feasibility and effectiveness of a patient decision aid for this choice. Methods. Premenopausal BRCA1/2-PV carriers were counselled for risk-reducing surgical options in the TUBA study; the first cohort was counselled without and the second cohort with decision aid. Evaluation was performed using digital questionnaires for participating women and their healthcare professionals. Outcome measures included actual choice, feasibility (usage and experiences) and effectiveness (knowledge, cancer worry, decisional conflict, decisional regret and self-estimated influence on decision). Results. 283 women were counselled without and 282 women with decision aid. The novel strategy was chosen less frequently in women without compared with women with decision aid (67% vs 78%, p = 0.004). The decision aid was graded with an 8 out of 10 by both women and professionals, and 78% of the women would rec-ommend this decision aid to others. Users of the decision aid reported increased knowledge about the options and increased insight in personal values. Knowledge on cancer risk, decisional conflict, decisional regret and can-cer worry were similar in both cohorts. Conclusions. The use of the patient decision aid for risk-reducing surgery is feasible, effective and highly ap-preciated among BRCA1/2-PV carriers facing the decision between salpingo-oophorectomy or salpingectomy with delayed oophorectomy. (c) 2021 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY license (http:// creativecommons.org/licenses/by/4.0/).

KW - Decision aid

KW - BRCA

KW - Ovarian cancer

KW - Risk-reducing salpingo-oophorectomy

KW - Salpingectomy

KW - BRCA1/2 MUTATION CARRIERS

KW - RISK-REDUCING SURGERY

KW - RANDOMIZED-TRIAL

KW - SALPINGO-OOPHORECTOMY

KW - BREAST-CANCER

KW - WOMEN

KW - ASSOCIATION

KW - VALIDATION

KW - DISTRESS

KW - SURVIVAL

U2 - 10.1016/j.ygyno.2021.08.019

DO - 10.1016/j.ygyno.2021.08.019

M3 - Article

C2 - 34456057

SN - 0090-8258

VL - 163

SP - 371

EP - 377

JO - Gynecologic Oncology

JF - Gynecologic Oncology

IS - 2

ER -