Longer-term influence of breast cancer genetic counseling on cognitions and distress: Smaller benefits for affected versus unaffected women

Abstract

Objective

To evaluate outcomes of breast cancer genetic counseling in women with and without breast cancer.

Methods

Seventy-seven first-time attendees (n = 44 affected) completed questionnaires assessing cognitions (risk accuracy, knowledge, perceived personal control [PPC]) and distress (state anxiety [STAI], cancer-related stress reactions [IES]) from immediately before to immediately and six months after completing counseling. Data were analyzed using multilevel repeated measures and trend analyses.

Results

In affected counselees, mean cognitions did not significantly differ over time, anxiety significantly decreased, and IES levels were increased immediately post-counseling. In unaffected counselees, cognitions significantly improved over time except for knowledge. Distress levels showed similar patterns as in affected women. Improvements in cognitions and distress were significantly smaller in affected versus unaffected women.

Conclusion

Overall, counseling educates women about breast cancer risk and alleviates their anxiety. Importantly, benefits gained at immediate follow-up seem maintained over time.

Practice implication

Affected women seem to benefit less from counseling. Counselors may need to devote more effort into educating these women and addressing their anxieties. Future studies should confirm the unexpected finding that cancer-related distress increased immediately post-counseling.

Introduction

A main goal of breast cancer genetic counseling is to educate individuals about their cancer risk in ways that increase personal control and minimize psychological distress [1]. A challenge in informing counselees about their personal and family members’ cancer risk is that diagnostic DNA-testing of the BRCA1/2 genes often does not identify a mutation [2]. The pedigree alone then guides breast cancer risk estimations, which then remain less precise. Also, counselees frequently overestimate breast cancer risk after DNA-testing [3], [4].

The aim of genetic counseling is to improve counselees’ knowledge about their genetic condition and help them cope with it [5]. These goals are relevant both for counselees who are and who are not affected by cancer themselves. Yet, women already affected by breast cancer may consider counseling less relevant for them personally. It is therefore important to distinguish affected from unaffected women when examining the impact of counseling. With few exceptions [6], [7], such comparisons have usually not been reported. Another limitation of studies to date is the variety in content of counseling and lack of clarity as to whether available genetic test results and appropriate recommendations regarding risk management had been communicated. Indeed, breast cancer genetic counseling may include any intervention aimed at informing counselees about breast cancer genetics and risk, advising about breast cancer risk management options, or assisting counselees in psychologically adjusting to distress caused by their breast cancer risk. In order to assess the impact of counseling, it is relevant to evaluate its outcome after it has been completed.

In unaffected women with a family history of breast cancer, prospective studies have demonstrated improvements in cognitions and distress from before to after counseling. Specifically, risk perception accuracy was more frequent shortly after (i.e., up to one month) versus before counseling, even though overestimations persisted [8], [9], [10], [11]. Similar improvements were found with follow-up periods up to one year [9], [11], [12], [13], even though not unequivocally [13]. Improved knowledge about breast cancer genetics was found at one-year follow-up [14]. Lower state anxiety levels were found at immediate follow-up, compared to baseline [8], [9], [10], [15]. At one-year follow-up, lowered levels were not reported [7], [14]. Some studies have shown reductions in cancer-specific distress at one-year follow-up [7], [13] while others did not detect differences [9]. Overall, unaffected women appear to accommodate well to learning about their risk status [3], [4].

Much less is known about changes in cognitions and distress in affected women seeking breast cancer genetic counseling. Both risk perception accuracy [16] and psychological effects of counseling [7], [17] for affected individuals are underreported. Randall et al. [18] reported no improvement in knowledge about genetic testing up to six months post-counseling. Few studies compared changes in cognitions and distress following counseling between affected and unaffected women. MacDonald et al. [6] reported affected versus unaffected women to believe they were at lower risk for breast cancer, and to rate family history less often as a personal risk. Evidence further does not suggest group differences in state anxiety or cancer-specific distress [7]. A larger number of studies include women affected by breast and/or ovarian cancer. For example, Wood et al. [19] reported lower anxiety one month after test result disclosure in women with a personal cancer history. No differences were found in the course of perceived risk from baseline to six-month post-counseling [20], or of general anxiety or cancer-related distress from baseline to two-week [21] to six-month [20] post-counseling.

This study aims to assess (a) changes in cognitions (accurate risk perception, correct knowledge, perceived personal control) and distress (state anxiety, cancer-related stress reactions) from before to immediately and six months after concluding breast cancer genetic counseling in female counselees, and (b) whether changes in cognitions and distress were similar in affected versus unaffected women.