Exploring the facilitators and barriers to using an online infertility risk prediction tool (FoRECAsT) for young women with breast cancer: a qualitative study protocol

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Abstract

Introduction

As cancer treatments may impact on fertility, a high priority for young patients with breast cancer is access to evidence-based, personalised information for them and their healthcare providers to guide treatment and fertility-related decisions prior to cancer treatment. Current tools to predict fertility outcomes after breast cancer treatments are imprecise and do not offer individualised prediction. To address the gap, we are developing a novel personalised infertility risk prediction tool (FoRECAsT) for premenopausal patients with breast cancer that considers current reproductive status, planned chemotherapy and adjuvant endocrine therapy to determine likely post-treatment infertility. The aim of this study is to explore the feasibility of implementing this FoRECAsT tool into clinical practice by exploring the barriers and facilitators of its use among patients and healthcare providers.

Methods and analysis

A cross-sectional exploratory study is being conducted using semistructured in-depth telephone interviews with 15–20 participants each from the following groups: (1) premenopausal patients with breast cancer younger than 40, diagnosed within last 5 years, (2) breast surgeons, (3) breast medical oncologists, (4) breast care nurses (5) fertility specialists and (6) fertility preservation nurses. Patients with breast cancer are being recruited from the joint Breast Service of three affiliated institutions of Victorian Comprehensive Cancer Centre in Melbourne, Australia—Peter MacCallum Cancer Centre, Royal Melbourne Hospital and Royal Women’s Hospital, and clinicians are being recruited from across Australia. Interviews are being audio recorded, transcribed verbatim and imported into qualitative data analysis software to facilitate data management and analyses.

Ethics and dissemination

The study protocol has been approved by Melbourne Health Human Research Ethics Committee, Australia (HREC number: 2017.163). Confidentiality and privacy are maintained at every stage of the study. Findings will be disseminated through peer-reviewed scholarly and scientific journals, national and international conference presentations, social media, broadcast media, print media, internet and various community/stakeholder engagement activities.

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Most cited references 39

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Prospective study of fertility concerns and preservation strategies in young women with breast cancer.

Shiphra Ginsburg, S J Gelber, Kathryn J Ruddy … (2014)

Most research regarding fertility in young women with breast cancer has focused on long-term survivors. Little is known about how fertility concerns affect treatment decisions or fertility preservation strategies at the time of initial cancer diagnosis. As part of an ongoing prospective multicenter cohort study, we surveyed women with newly diagnosed early-stage breast cancer at age ≤ 40 years. The baseline survey included sociodemographic, medical, and treatment data as well as a modified Fertility Issues Survey, including fertility concern and preservation items. Univariable and multivariable modeling were used to investigate predictors of greater fertility concern. Among the first 620 eligible respondents included in this analysis, median age was 37 years (range, 17 to 40 years); 425 women (68%) discussed fertility issues with their physicians before starting therapy, and 319 (51%) were concerned about becoming infertile after treatment. Because of concerns about fertility, four women (1%) chose not to receive chemotherapy, 12 (2%) chose one chemotherapy regimen over another, six (1%) considered not receiving endocrine therapy, 19 (3%) decided not to receive endocrine therapy, and 71 (11%) considered receiving endocrine therapy for < 5 years; 65 (10%) used fertility preservation strategies. Greater concern about fertility was associated with younger age, nonwhite race, not having children, and receipt of chemotherapy. Many young women with newly diagnosed breast cancer have concerns about fertility, and for some, these substantially affect their treatment decisions. Only a minority of women currently pursue available fertility preservation strategies in this setting.

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The impact of cancer on subsequent chance of pregnancy: a population-based analysis

Richard Anderson, David Brewster, Rachael Wood … (2018)

Abstract STUDY QUESTION What is the impact of cancer in females aged ≤39 years on subsequent chance of pregnancy? SUMMARY ANSWER Cancer survivors achieved fewer pregnancies across all cancer types, and the chance of achieving a first pregnancy was also lower. WHAT IS KNOWN ALREADY The diagnosis and treatment of cancer in young females may be associated with reduced fertility but the true pregnancy deficit in a population is unknown. STUDY DESIGN, SIZE, DURATION We performed a retrospective cohort study relating first incident cancer diagnosed between 1981 and 2012 to subsequent pregnancy in all female patients in Scotland aged 39 years or less at cancer diagnosis (n = 23 201). Pregnancies were included up to end of 2014. Females from the exposed group not pregnant before cancer diagnosis (n = 10 271) were compared with general population controls matched for age, deprivation quintile and year of diagnosis. PARTICIPANTS/MATERIALS, SETTING, METHODS Scottish Cancer Registry records were linked to hospital discharge records to calculate standardized incidence ratios (SIR) for pregnancy, standardized for age and year of diagnosis. Linkage to death records was also performed. We also selected women from the exposed group who had not been pregnant prior to their cancer diagnosis who were compared with a matched control group from the general population. Additional analyses were performed for breast cancer, Hodgkin lymphoma, leukaemia, cervical cancer and brain/CNS cancers. MAIN RESULTS AND THE ROLE OF CHANCE Cancer survivors achieved fewer pregnancies: SIR 0.62 (95% CI: 0.60, 0.63). Reduced SIR was observed for all cancer types. The chance of achieving a first pregnancy was also lower, adjusted hazard ratio = 0.57 (95% CI: 0.53, 0.61) for women >5 years after diagnosis, with marked reductions in women with breast, cervical and brain/CNS tumours, and leukaemia. The effect was reduced with more recent treatment period overall and in cervical cancer, breast cancer and Hodgkin lymphoma, but was unchanged for leukaemia or brain/CNS cancers. The proportion of pregnancies that ended in termination was lower after a cancer diagnosis, and the proportion ending in live birth was higher (78.7 vs 75.6%, CI of difference: 1.1, 5.0). LIMITATIONS, REASONS FOR CAUTION Details of treatments received were not available, so the impact of specific treatment regimens on fertility could not be assessed. Limited duration of follow-up was available for women diagnosed in the most recent time period. WIDER IMPLICATIONS OF THE FINDINGS This analysis provides population-based quantification by cancer type of the effect of cancer and its treatment on subsequent pregnancy across the reproductive age range, and how this has changed in recent decades. The demonstration of a reduced chance of pregnancy across all cancer types and the changing impact in some but not other common cancers highlights the need for appropriate fertility counselling of all females of reproductive age at diagnosis. STUDY FUNDING/COMPETING INTEREST(S) This study was funded by NHS Lothian Cancer and Leukaemia Endowments Fund. Part of this work was undertaken in the MRC Centre for Reproductive Health which is funded by the MRC Centre grant MR/N022556/1. RAA has participated in Advisory Boards and/or received speaker’s fees from Beckman Coulter, IBSA, Merck and Roche Diagnostics. He has received research support from Roche Diagnostics, Ansh labs and Ferring. The other authors have no conflicts to declare.

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Oocyte cryopreservation for age-related fertility loss.

W. Dondorp, G de Wert, G. Pennings … (2012)

The recent introduction of oocyte vitrification has significantly advanced the outcome of oocyte cryopreservation, leading to clinical results comparable to those achieved in IVF using fresh oocytes, as reported by experienced centres. This has lead to new debate, both in the professional community and in society at large, about the acceptability of offering this technology to reproductively healthy women who want to cryopreserve their oocytes against the threat of time. Given the many demands calling for simultaneous realization in a relatively short period of their lives, many women who want to have children feel to be under considerable pressure. The option of oocyte cryopreservation may in fact give them more breathing space. In this document, it is concluded that the arguments against allowing this application of the technology are not convincing. The recommendations include the need for adequate information of women interested in oocyte cryopreservation, also in order to avoid raising false hopes. The message must remain that women's best chances of having a healthy child are through natural reproduction at a relative early age. Centres offering this service must have the necessary expertise to employ oocyte cryopreservation efficiently with the so far non-standardized protocols. As data about long-term safety is still lacking, centres also have a responsibility to contribute to the collection of these data.

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Author and article information

Journal

Journal ID (nlm-ta): BMJ Open

Journal ID (iso-abbrev): BMJ Open

Journal ID (hwp): bmjopen

Journal ID (publisher-id): bmjopen

Title: BMJ Open

Publisher: BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )

ISSN (Electronic): 2044-6055

Publication date Collection: 2020

Publication date (Electronic): 10 February 2020

Volume: 10

Issue: 2

Electronic Location Identifier: e033669

Affiliations

[1 ] departmentObstetrics & Gynaecology , The University of Melbourne , Melbourne, Victoria, Australia

[2 ] departmentObstetrics & Gynaecology , The Royal Women's Hospital , Parkville, Victoria, Australia

[3 ] departmentDepartment of Paediatric and Adolescent Gynaecology , The Royal Children's Hospital , Parkville, Victoria, Australia

[4 ] departmentMelbourne School of Psychological Sciences , The University of Melbourne , Melbourne, Victoria, Australia

[5 ] departmentCentre for Women’s Mental Health , The Royal Women's Hospital , Parkville, Victoria, Australia

[6 ] departmentMRC Centre for Reproductive Health , The University of Edinburgh , Edinburgh, Edinburgh, UK

[7 ] departmentDepartment of Obstetrics, Gynecology and Reproductive Sciences , University of California San Diego , San Diego, California, USA

[8 ] Melbourne IVF , East Melbourne, Victoria, Australia

[9 ] departmentReproductive Services , The Royal Women's Hospital , Parkville, Victoria, Australia

[10 ] departmentSchool of Surgery , The University of Western Australia , Perth, Western Australia, Australia

[11 ] departmentSydney Children's Hospital, School of Women’s and Children’s Health , UNSW , Sydney, New South Wales, Australia

[12 ] departmentNelune Comprehensive Cancer Centre , Prince of Wales Children's Hospital , Randwick, New South Wales, Australia

[13 ] Breast Cancer Network Australia , Camberwell, Victoria, Australia

[14 ] departmentSchool of Computing and Information Systems , The University of Melbourne , Melbourne, Victoria, Australia

[15 ] departmentDepartment of General Surgery , The Royal Melbourne Hospital , Melbourne, Victoria, Australia

[16 ] departmentDepartment of Medical Oncology , Peter MacCallum Cancer Centre , Melbourne, Victoria, Australia

[17 ] departmentBreast Service , Peter MacCallum Cancer Centre , Melbourne, Victoria, Australia

[18 ] departmentDepartment of Medicine, The Royal Melbourne Hospital , The University of Melbourne , Melbourne, Victoria, Australia

[19 ] departmentSchool of Behavioural and Health Sciences , Australian Catholic University , Melbourne, Victoria, Australia

Author notes

[Correspondence to ] Dr Zobaida Edib; zedib@ 123456student.unimelb.edu.au

Author information

Zobaida Edib http://orcid.org/0000-0001-7381-7351

Article

Publisher ID: bmjopen-2019-033669

DOI: 10.1136/bmjopen-2019-033669

PMC ID: 7044829

PubMed ID: 32047016

SO-VID: d78ae204-48fe-46c8-9760-07c12a872daf

License:

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

History

Date received : 16 August 2019

Date revision received : 09 January 2020

Date accepted : 13 January 2020

Funding

Funded by: FundRef http://dx.doi.org/10.13039/100008018, Victorian Cancer Agency;

Award ID: Early Career Seed Grant awarded to Dr Michelle Pea

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ScienceOpen disciplines: Medicine

Keywords: breast cancer,premenopausal,infertility,risk prediction

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ScienceOpen disciplines: Medicine

Keywords: breast cancer, premenopausal, infertility, risk prediction

Exploring the facilitators and barriers to using an online infertility risk prediction tool (FoRECAsT) for young women with breast cancer: a qualitative study protocol

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Abstract

Introduction

Methods and analysis

Ethics and dissemination

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Karger: Oncology

Most cited references 39

Prospective study of fertility concerns and preservation strategies in young women with breast cancer.

The impact of cancer on subsequent chance of pregnancy: a population-based analysis

Oocyte cryopreservation for age-related fertility loss.

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