Elsevier

Gynecologic Oncology

Volume 124, Issue 1, January 2012, Pages 153-157
Gynecologic Oncology

There is no decision to make: Experiences and attitudes toward treatment-focused genetic testing among women diagnosed with ovarian cancer

https://doi.org/10.1016/j.ygyno.2011.09.040Get rights and content

Abstract

Objective

There is growing evidence that the BRCA mutation status of women newly diagnosed with ovarian cancer may be used to make treatment recommendations in the future. This qualitative study aimed to assess women's attitudes and experiences toward treatment-focused genetic testing (TFGT).

Methods

Women (N = 22) with ovarian cancer who had either (i) advanced disease and had previously had TFGT (n = 12) or (ii) had a recent ovarian cancer diagnosis and were asked about their hypothetical views of TFGT (n = 10), were interviewed in-depth.

Results

This study demonstrates that patients diagnosed with ovarian cancer found the concept of TFGT acceptable with the primary motivation for genetic testing being to increase their treatment options. Women reported that there was no decision to make about TFGT, and the advantages of TFGT were perceived to outweigh the disadvantages. Many women described elements of resilience and active coping, in the context of hypothetical and actual TFGT.

Conclusions

Resilience and active coping strategies are important factors that warrant investigation as potential moderators of psychological distress in future prospective studies exploring the optimal way of offering BRCA genetic testing to women newly diagnosed with ovarian cancer, and to assess the impact of TFGT upon patients' survival, psychological distress, and quality of life.

Highlights

► Women's views regarding genetic testing at diagnosis of ovarian cancer ► This ‘treatment-focused’ genetic testing is highly acceptable ► Advantages of genetic testing at diagnosis outweigh the disadvantages

Introduction

Around 5% to 10% of diagnosed epithelial ovarian cancer (EOC) is due to inherited mutations in BRCA1 or BRCA2 [1]. DNA testing for BRCA1 and BRCA2 mutations is currently offered to guide cancer risk management decision-making for people from families with hereditary breast/ovarian cancer. It is likely that indications for testing will broaden in the future as evidence accumulates that patients with BRCA-associated ovarian cancer may benefit from tailoring of adjuvant chemotherapy agents [2]. In particular, it has been found that BRCA-associated ovarian cancer tumors respond differently to chemotherapeutic regimens and are particularly sensitive to platinum chemotherapy [3]. Furthermore, there is emerging evidence that novel agents such as Poly (ADP)-ribose polymerase (PARP) inhibitors, which specifically target BRCA-associated tumors, are active agents with high response rates in patients with recurrent disease [4], [5], [6].

The availability of both PARP inhibitors, as well as the differential sensitivity of BRCA-associated tumors to established adjuvant therapeutic agents, provides scope for genetic testing shortly after diagnosis to search for a BRCA1 or BRCA2 germline mutation and potentially guide a woman's personal cancer therapy (hereafter such testing will be referred to as ‘treatment-focused genetic testing’, TFGT). Consequently, clinical implementation of TFGT is likely to become widespread in the future, particularly with the advances in sequencing technology, which will lower the costs of mutation analysis and improve test turnaround times.

Before TFGT is incorporated widely into clinical practice, it is crucial to gather data on women's potential responses to mutation analysis following a new diagnosis of ovarian cancer. The impact of genetic testing in women newly diagnosed with ovarian cancer is currently unknown. One recent study assessed women's willingness to undergo hypothetical genetic testing following a diagnosis of ovarian cancer and showed that women's knowledge and understanding of BRCA testing was associated with their educational levels and ethnic backgrounds [7]. Eighty-nine percent of women reported they would be willing to undergo genetic testing if it would directly impact their care, and 87% of women said they would be tested to benefit their family [7]. However, women's experience and uptake of actual testing in this setting remains unexplored.

Up to 50% of women diagnosed with ovarian cancer experience high levels of anxiety and/or depression [8], [9]. This suggests the need for caution in introducing additional stressors, such as BRCA mutation testing, around the time of a diagnosis of ovarian cancer. Some studies have found that being on active chemotherapy is associated with lower levels of anxiety among women with ovarian cancer because patients perceive that they are receiving treatment and medical support [10], [11]. Therefore, TFGT might alleviate, rather than heighten psychological distress among women diagnosed with ovarian cancer because it may provide positive prognostic information [3] and, in the very near future, improve treatment options. In contrast, the potential disadvantages of TFGT may also influence its acceptability including fears or worries about insurance discrimination [7], the perceived additional burden of decision-making [12], and concerns about the impact of the results on one's children. Concerns regarding genetic testing have been explored among ovarian cancer patients unselected for cancer family history [7]. However, no qualitative studies have examined in-depth, experiences, and actual and hypothetical acceptance of TFGT among ovarian cancer patients with and without a family history of ovarian cancer. The aim of this qualitative study was to explore women's actual and hypothetical acceptance of TFGT, their decision-making regarding, and motivations to undergo, TFGT and the perceived advantages and disadvantages of TFGT.

Section snippets

Sample

Two groups of women were recruited into the study. Group A comprised women with advanced ovarian cancer, with or without a family history of breast and/or ovarian cancer, who had already undergone TFGT to determine eligibility for participation in a PARP inhibitor trial (Group A denotes Actual decision-making about TFGT). Group H comprised women recently diagnosed with invasive ovarian cancer (within 6 weeks to 5 months post diagnosis), unselected for family history, who had never undergone

Results

Twenty-two women were interviewed (12 from Group A and 10 from Group H). Participants' demographic characteristics are summarized in Table 1.

Five broad themes were identified and included: acceptance of TFGT; motivations for and perceived advantages of TFGT; perceived disadvantages of TFGT, reactions to TFGT results, and perceived need to make TFGT a routine test. Table 2 presents quotations which illustrate each of the identified themes.

Discussion

Women strongly endorsed genetic testing around the time of their diagnosis if it were to provide more information about their cancer treatment, with little indication that this would generate undue distress. The most frequently reported motivation for undergoing TFGT was to increase one's treatment options. Most participants reported that they did not need, or did not anticipate requiring much time or assistance in considering whether to have TFGT because there was ‘no decision to make’.

Some

Conclusions

TFGT was acceptable to women diagnosed with ovarian cancer and was not perceived as creating additional psychological burden. The potential moderating role of younger age, advanced ovarian cancer, resilience and active coping, and the influence of culture in relation to the impact of TFGT on ovarian cancer patients, requires examination in future prospective studies.

Conflict of interest

The authors have no conflicts of interest to declare.

Acknowledgments

We would like to thank all the women who participated in this research and generously shared their views. We would also like to extend our thanks to Dr Alison Trainer and Professor Michael Friedlander for their helpful contributions to this project.

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    Funding sources: This project was supported by a Cancer Institute NSW Career Development Fellowship to Bettina Meiser. Bettina Meiser is supported by a Cancer Institute NSW Career Development Fellowship and by a Career Development Award from the National Health and Medical Research Council (NH&MRC) of Australia (ID 1003921). Nadine Kasparian is supported by a Clinical Research Post-Doctoral Fellowship from the NH&MRC (ID 510399).

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