Psychosocial outcomes and counselee satisfaction following genetic counseling for hereditary breast and ovarian cancer: A patient-reported outcome study
Introduction
Genetic counseling and testing (GCT), including psychological counseling, for hereditary breast and ovarian cancer (HBOC) has become an integral part of care, not only for patients but also their healthy relatives. Approximately 30% of all patients with breast and ovarian cancer (BOC) report familial clustering, with around 5–10% of cases being based on a genetic predisposition due to a highly penetrant genetic alteration (i.e. in BRCA1 or BRCA2) [1], [2], [3]. Such autosomal-dominant inherited mutations cause significantly elevated individual lifetime and recurrence risks for affected individuals [1], [2], [3], and at the same time confront relatives with the knowledge of their own potential risk for HBOC. As BOC patients and their healthy relatives with a history of GCT have become a large and heterogeneous group in BOC care, health care providers are finding it increasingly important to understand the specific health care needs of this group (and sub-groups), particularly for optimizing psychological counseling.
In the short-term, GCT has been shown to improve patient knowledge on hereditary cancer risk and support deliberate informed decision-making [4]. This increase in awareness, however, comes at the price of inducing specific psychosocial care needs related to the knowledge of increased cancer risk in about three-fourths of patients [5]. These specific needs concern topics such as cancer worry, decisional conflicts, feelings of guilt or shame, family communication problems, and concern for other family members [5]. Previous studies have predominantly focused on counselees who have undergone genetic testing; however, counselees who decide against doing so or are undecided are largely underrepresented. To further expand our understanding of the psychosocial consequences of GCT for HBOC, it is crucial to represent the various subgroups of counselees who opt for counseling without pre-selection. Hence, we aimed to recruit a real-life sample of counselees including those who ultimately decided not to be tested or who are unsure about their decision, both those with and those without a previous cancer diagnosis. This approach helps to reduce selection bias and generate a heterogeneous study population with characteristics representing the “typical” setting for genetic counseling.
A heterogeneous group of predominantly Anglo-American and Dutch studies have evaluated aspects of counselees' psychological adjustment over a follow-up period of above or equal to 2 years [6], [7], [8], [9], [10], [11], [12]. In this follow-up period, factors such as previous cancer diagnosis, decision uncertainty, and sociodemographic variables might contribute to counselees' psychosocial adjustment. Specifically, as a cancer diagnosis and related treatments can increase patients' distress levels during the follow-up period, comparing counselees for HBOC and breast cancer survivors (BCS) who did not request GCT could provide additional insight into the unique effects of GCT on counselees' distress levels. We therefore included a group of BCS who had not requested GCT to allow for such comparison. To our knowledge, this is the first study directly comparing psychological distress levels between BOC patients who have and those who have not undergone GCT.
The specific variables that we investigated included follow-up psychosocial outcomes, including quality of life (QOL), psychological distress, cancer worry, and patient satisfaction with GCT and their decisions regarding it. Together with our comparison to BCS who had not undergone GCT, our study may help in meeting the follow-up health care demands of this particular patient group and in improving their QOL outcomes.
In detail, the following research questions were addressed:
- •
To what degree do counselees for HBOC experience psychological distress during the follow-up period?
- •
Are there differences in psychosocial outcomes between subgroups of counselees (tested vs. not tested vs. undecided; positive vs. negative test result; cancer patients vs. healthy individuals)?
- •
Do levels of psychological distress differ between counselees for HBOC and BCS who did not undergo GCT?
- •
Which counseling-related variables predict follow-up patient satisfaction with decisions?
Section snippets
Method
The work was carried out in accordance with The Code of Ethics of the World Medical Association (Declaration of Helsinki) for experiments involving humans. The study was approved by the Ethics Committee of the Medical University of Innsbruck (Nr: UN4518, 306/4.8, date 22.10.2013).
Counselees' cohort characteristics
Three hundred thirty-four counselees who had undergone counseling for HBOC at the Innsbruck Medical University from January 2011 to February 2014 met the inclusion criteria. After checking the Tyrolean Cancer Registry for deaths, the mail survey was sent to 328 patients. Twenty-three questionnaires could not be delivered because of logistical reasons (e.g., a changed address). One hundred thirty-seven patients completed the survey, resulting in a final response rate of approximately 42% (see
Discussion
We investigated the psychosocial consequences of GCT at follow-up in a “real-life” sample of counselees for HBOC. The presented work utilizes well-established and validated standard measures [20], [21], [22] and is among the few studies to investigate follow-up period counselee care demands in a central European country [10], [11], [23], [24], [25], [26], [27], [28]. This included considering all different subgroups of counselees who opt for GCT, thereby allowing for a comprehensive exploration
Competing interest statement
The authors have no competing interests to report.
Acknowledgments
This work was supported by the Tiroler Gesundheitsfond (UN4518; 306/4.8). The work of CM was funded by the Austrian Science Fund (FWF): P26087-B24. We thank Lukas Renck for contributing to the data collection and management.
References (53)
- et al.
The contribution of BRCA1 and BRCA2 to ovarian cancer
Mol. Oncol.
(2009) - et al.
Breast cancer genetic counseling after diagnosis but before treatment: a pilot study on treatment consequences and psychological impact
Patient Educ. Couns.
(2012) - et al.
Psychological distress two years after diagnosis of breast cancer: Frequency and prediction
Patient Educ. Couns.
(2000) - et al.
Psychological response to prenatal genetic counseling and amniocentesis
Patient Educ. Couns.
(2001) - et al.
Short term psychological distress in patients actively approached for genetic counselling after diagnosis of breast cancer
Eur. J. Cancer
(2006) - et al.
Prognostic factors for hereditary cancer distress six months after BRCA1/2 or HNPCC genetic susceptibility testing
Eur. J. Cancer
(2007) - et al.
A literature review of the psychological impact of genetic testing on breast cancer patients
Patient Educ. Couns.
(2006) - et al.
Normative values for the hospital anxiety and depression scale (HADS) in the general German population
J. Psychosom. Res.
(2011) - et al.
Patient feedback and early outcome data with a novel tiered-binned model for multiplex breast cancer susceptibility testing
Genetics in medicine: official journal of the American College of Medical Genetics.
(2016) - et al.
Barriers to participating in genetic counseling and BRCA testing during primary treatment for breast cancer
Genetics in medicine: official journal of the American College of Medical Genetics.
(2007)