Prognostic Factors for Distress After Genetic Testing for Hereditary Cancer

Abstract

The psychological impact of an unfavorable genetic test result for counselees at risk for hereditary cancer seems to be limited: only 10–20 % of counselees have psychological problems after testing positive for a known familial mutation. The objective of this study was to find prognostic factors that can predict which counselees are most likely to develop psychological problems after presymptomatic genetic testing. Counselees with a 50 % risk of BRCA1/2 or Lynch syndrome completed questionnaires at three time-points: after receiving a written invitation for a genetic counseling intake (T1), 2–3 days after receiving their DNA test result (T2), and 4–6 weeks later (T3). The psychological impact of the genetic test result was examined shortly and 4–6 weeks after learning their test result. Subsequently, the influence of various potentially prognostic factors on psychological impact were examined in the whole group. Data from 165 counselees were analyzed. Counselees with an unfavorable outcome did not have more emotional distress, but showed significantly more cancer worries 4–6 weeks after learning their test result. Prognostic factors for cancer worries after genetic testing were pre-existing cancer worries, being single, a high risk perception of getting cancer, and an unfavorable test result. Emotional distress was best predicted by pre-existing cancer worries and pre-existing emotional distress. The psychological impact of an unfavorable genetic test result appears considerable if it is measured as “worries about cancer.” Genetic counselors should provide additional guidance to counselees with many cancer worries, emotional distress, a high risk perception or a weak social network.

Risk Perception and Psychological Distress in Genetic Counselling for Hereditary Breast and/or Ovarian Cancer

“…As expected, and in line with literature, we found that individuals in our sample had higher levels of anxiety and depressive symptoms; the levels were clinically significant, suggesting possible psychological disorder that should be further investigated. This is consistent with results obtained in previous research (Heshka et al 2008;Smerecnik et al 2009;Voorwinden and Jaspers 2016).…”

“…Instead, other studies have reported that psychological distress (in particular, cancer-specific-distress) was significantly associated with refusal or withdrawal from genetic counselling, whether levels of distress were high or low. A moderate level of distress (general distress and cancer-specific-distress) was found to facilitate the decision to undergo genetic counselling (Cabrera et al 2010;Christie et al 2012;Voorwinden and Jaspers 2016).…”

“…Those psychological variables, in accordance with the literature reported in this article, are considered moderators and/or predictive factors with respect to the degree of compliance with monitoring programmes and intra-family communication. Identification and intervention regarding emotional, cognitive and behavioural variables may promote adherence to monitoring programmes, and promote decision-making and empowerment (Meiser 2005;Voorwinden and Jaspers 2016;Elwyn and Miron-Shatz 2010;Halpern 2012;Levine et al 2012;Peter et al 2014).…”

Family communication and patient distress after germline genetic testing in individuals with pancreatic ductal adenocarcinoma

“…Patients who tested negative for a pathogenic variant had a median total score of 15 (IQR, [9][10][11][12][13][14][15][16][17][18][19][20][21][22], which was not significantly different from that of patients who tested positive (20; IQR, 14-26 [P = .057]). The median total MICRA score among those patients with a VUS genetic testing result was 18 (IQR, [15][16][17][18][19][20][21][22][23][24], which also was not significantly different from the score for patients receiving positive results (P = .43). Scores for the Uncertainty and Cancer Experience subscales in patients with a VUS genetic testing result (3 [IQR, 0-6] and 5 [IQR, 3.5-5], respectively) were significantly different from Cancer July 15, 2019 those of patients receiving positive results (6 [IQR, 3.5-10; P = .017] and 2 [IQR, 0-4; P = .002], respectively).…”

“…Given the natural stress of a new cancer diagnosis, there is understandable concern about adding additional distress through genetic testing. In prior studies of germline genetic testing in patients with cancer, only a small minority of patients have been shown to experience psychological distress after testing and, when present, these feelings do not persist long‐term . The Multidimensional Impact of Cancer Risk Assessment (MICRA) questionnaire is a standardized tool that has identified sources of distress from genetic testing in both patients with cancer and other at‐risk groups in multiple studies …”