Abstract P2-09-22: Long-term psychosocial consequences and counsellees' satisfaction after genetic counselling for hereditary breast- and ovarian cancer - A patient reported outcome study
Authors: Hubalek M , Sztankay M , Meraner V , Martini C , Sperner-Unterweger B , Weber I , Morscher R , Zschocke J , Egle D , Dünser M , Oberguggenberger A 
Published: May 2016

Abstract
Background: Genetic counselling and testing (GCT) for hereditary breast and ovarian cancer (BOC) has become a standard option in BOC care in Europe allowing for prognostic information on the individual risk for disease onset/ relapse as well as on treatment options comprising prophylactic surgery or surveillance programs. However, data on the psychosocial long-term consequences is limited, especially in high-risk counsellees opting against genetic testing. We aimed at investigating the long-term psychosocial consequences of GCT for hereditary BOC in all counsellees irrespective of their decision after counselling.
Patients and Methods: Counsellees for BOC with and without a previous disease who had undergone genetic counselling at Innsbruck Medical University between 2011 and 2014 were asked to participate in a cross-sectional Patient Reported Outcome (PRO) assessment (incl. Multidimensional Impact of Cancer Risk Assessment, Genetic counseling satisfaction scale, Satisfaction with Decision Scale, Breast Cancer Heredity Knowledge Scale, Hospital Anxiety and Depression Scale/ HADS, Short Form 12 Health Survey, Cancer Worry Scale/ CWS) targeting on psychological distress, cancer worry, patient knowledge and patient satisfaction with genetic counselling and decisions by means of an anonymous mail survey. Subsequent decisions for vs. against genetic testing and if eligible, for surveillance vs. prophylactic surgery were also assessed. A reference sample of BC survivors was recruited at the outpatient unit.
Results: An overall sample of 137 counselees was included in the analysis (67.9% decided to undergo genetic testing for a HCPS, 22.6% decided not to be tested, 9.5% were still uncertain about their decision). 22.6% of counsellees experienced clinically relevant levels of anxiety and 9.8% scored above the cut-off for clinically relevant depression according to the HADS. Mean CWS score was 11 (SD 3.6, 3-24). Counsellees did not differ from breast cancer survivors regarding anxiety and depression according to the HADS (depression: p&lt;0.5). Mean patient satisfaction with decisions amounted to 25.4 (SD 5.78, min. 4 to max. 30); a mean satisfaction with counselling of 25 (5.4) was observed. Less overall satisfaction with genetic counselling (β=0.445, t=5.552, p=0.000) and lower certainty about decision for/ against genetic testing after counselling (β=-0.169, t=-2.105, p=0.037) were highly predictive for lower long-term patient satisfaction with decisions.
Conclusion: Our results indicate that genetic counselling for BOC has no overall deleterious psychosocial consequences in long-term. Levels of depression and anxiety were comparable to those of the general population, while distress levels did not differ from those of breast cancer survivors without a hereditary BOC predisposition. The overall satisfaction with counselling as well as the certainty with decisions on testing and related medical interventions are highly predictive for the long-term satisfaction with decisions. Hence, genetic counselling should focus on supporting counsellees in forming clear decisions and include identifying counsellees with increased cared needs in this regard by means of PRO assessment in follow-up.
Citation Format: Hubalek M, Sztankay M, Meraner V, Martini C, Sperner-Unterweger B, Weber I, Morscher R, Zschocke J, Egle D, Dünser M, Oberguggenberger A. Long-term psychosocial consequences and counsellees' satisfaction after genetic counselling for hereditary breast- and ovarian cancer - A patient reported outcome study. [abstract]. In: Proceedings of the Thirty-Eighth Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2015 Dec 8-12; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2016;76(4 Suppl):Abstract nr P2-09-22.