Psychosocial outcomes and counselee satisfaction following genetic counseling for hereditary breast and ovarian cancer: A patient-reported outcome study.
We investigated the psychosocial consequences of genetic counseling and testing (GCT) for hereditary breast and ovarian cancer (HBOC) at follow-up in a "real-life" sample of counselees at an Austrian tertiary care center.



The study cohort included counselees who had undergone genetic counseling for HBOC and completed a follow-up self-report questionnaire battery on psychosocial outcomes (quality of life, psychological distress, satisfaction with counseling and decisions). For comparison of distress, we recruited a reference sample of breast cancer survivors (BCS; n=665) who had not requested GCT in the same setting.



Overall, counselees did not exhibit increased levels of anxiety and depression when compared to BCS. No specific follow-up deleterious psychosocial consequences were detected among the former group. Of the 137 counselees, 22.6% and 9.8% experienced clinically relevant levels of anxiety and depression, respectively, at an average follow-up time of 1.8years. However, both anxiety and depression significantly decreased with time and were alike between counselees with and without cancer diagnosis. Follow-up cancer worry seems to be significantly higher among counselees who had not undergone genetic testing or were undecided about it than among counselees who had been tested.



Our results strongly support GCT as part of routine care for patients with HBOC. The risk factors of increased distress in specific subgroups of counselees, such as recent cancer diagnosis or uncertainty about testing, warrant further exploration and specific attention in clinical routines. Particularly, the psychological needs of undecided counselees warrant ongoing attention and potential follow-ups.
Department of Psychiatry, Psychotherapy and Psychosomatics, Medical University of Innsbruck, Innsbruck, Austria. Electronic address: anne.oberguggenberger@tirol-kliniken.at.
Anne
A
Oberguggenberger
Department of Psychiatry, Psychotherapy and Psychosomatics, Medical University of Innsbruck, Innsbruck, Austria.
Monika
M
Sztankay
Division of Human Genetics, Medical University of Innsbruck, Austria; Research Program for Receptor Biochemistry and Tumor Metabolism, Paracelsus Medical University, Salzburg, Austria.
Raphael Johannes
RJ
Morscher
Department of Psychiatry, Psychotherapy and Psychosomatics, Medical University of Innsbruck, Innsbruck, Austria.
Barbara
B
Sperner-Unterweger
Division of Human Genetics, Medical University of Innsbruck, Austria.
Ingrid
I
Weber
Department of Obstetrics and Gynecology, Medical University of Innsbruck, Innsbruck, Austria.
Michael
M
Hubalek
Department of Psychiatry, Psychotherapy and Psychosomatics, Medical University of Innsbruck, Innsbruck, Austria.
Georg
G
Kemmler
Division of Human Genetics, Medical University of Innsbruck, Austria.
Johannes
J
Zschocke
Department of Psychiatry, Psychotherapy and Psychosomatics, Medical University of Innsbruck, Innsbruck, Austria.
Caroline
C
Martini
Department of Obstetrics and Gynecology, Medical University of Innsbruck, Innsbruck, Austria.
Daniel
D
Egle
Department of Visceral, Transplant and Thoracic Surgery, Medical University of Innsbruck, Innsbruck, Austria.
Martina
M
Dünser
Department of Psychiatry, Psychotherapy and Psychosomatics, Medical University of Innsbruck, Innsbruck, Austria.
Eva
E
Gamper
Department of Psychiatry, Psychotherapy and Psychosomatics, Medical University of Innsbruck, Innsbruck, Austria.
Verena
V
Meraner
D000328:Adult; D000368:Aged; D001007:Anxiety / Q000523:psychology / Q000628:therapy; D001943:Breast Neoplasms / Q000235:genetics / Q000523:psychology* / Q000628:therapy; D003430:Cross-Sectional Studies; D003863:Depression / Q000523:psychology / Q000628:therapy; D005260:Female; D005500:Follow-Up Studies; D005817:Genetic Counseling / Q000523:psychology* / Q000639:trends; D020022:Genetic Predisposition to Disease / Q000235:genetics / Q000523:psychology; D005820:Genetic Testing / Q000639:trends; D006801:Humans; D008875:Middle Aged; D010051:Ovarian Neoplasms / Q000235:genetics / Q000523:psychology* / Q000628:therapy; D000071066:Patient Reported Outcome Measures; D017060:Patient Satisfaction; D011788:Quality of Life / Q000523:psychology; D012307:Risk Factors; D011795:Surveys and Questionnaires
Genetic counseling; Hereditary breast and ovarian cancer; Late effects; Patient satisfaction; Psychological distress; Psychooncology