Patient-Centered Care in Breast Cancer Genetic Clinics

Anne Brédart, Amélie Anota, Julia Dick, Violetta Kuboth, Olivier Lareyre, Antoine De Pauw, Alejandra Cano, Dominique Stoppa-Lyonnet, Rita Schmutzler, Sylvie Dolbeault and Jean-Luc Kop
Additional contact information
Anne Brédart: Supportive Care Department, Psycho-Oncology Unit, Institut Curie, 26 Rue d’Ulm, 75005 Paris CEDEX 05, France
Amélie Anota: Quality of Life and Cancer Clinical Research Platform, Methodology and Quality of Life in Oncology Unit (INSERM UMR 1098), CHU Besançon, 25030 Besançon, France
Julia Dick: Familial Breast and Ovarian Cancer Centre, Cologne University Hospital and Faculty of Medicine, Kerpener Str. 34, 50931 Cologne, Germany
Violetta Kuboth: Familial Breast and Ovarian Cancer Centre, Cologne University Hospital and Faculty of Medicine, Kerpener Str. 34, 50931 Cologne, Germany
Olivier Lareyre: Supportive Care Department, Psycho-Oncology Unit, Institut Curie, 26 Rue d’Ulm, 75005 Paris CEDEX 05, France
Antoine De Pauw: Cancer Genetic Clinic, Institut Curie, 26 Rue d’Ulm, 75005 Paris CEDEX 05, France
Alejandra Cano: Clinical and Health Psychology Department, University Autónoma of Barcelona, Carrer de Ca N’Altayó, s/n, 08193 Barcelona, Spain
Dominique Stoppa-Lyonnet: Cancer Genetic Clinic, Institut Curie, 26 Rue d’Ulm, 75005 Paris CEDEX 05, France
Rita Schmutzler: Familial Breast and Ovarian Cancer Centre, Cologne University Hospital and Faculty of Medicine, Kerpener Str. 34, 50931 Cologne, Germany
Sylvie Dolbeault: Supportive Care Department, Psycho-Oncology Unit, Institut Curie, 26 Rue d’Ulm, 75005 Paris CEDEX 05, France
Jean-Luc Kop: Department 2LPN-CEMA, Université de Lorraine, 23 boulevard Albert 1er - BP 60446 - 54001 NANCY CEDEX, France

IJERPH, 2018, vol. 15, issue 2, 1-16

Abstract: With advances in breast cancer (BC) gene panel testing, risk counseling has become increasingly complex, potentially leading to unmet psychosocial needs. We assessed psychosocial needs and correlates in women initiating testing for high genetic BC risk in clinics in France and Germany, and compared these results with data from a literature review. Among the 442 counselees consecutively approached, 212 (83%) in France and 180 (97%) in Germany, mostly BC patients (81% and 92%, respectively), returned the ‘Psychosocial Assessment in Hereditary Cancer’ questionnaire. Based on the Breast and Ovarian Analysis of Disease Incidence and Carrier Estimation Algorithm (BOADICEA) BC risk estimation model, the mean BC lifetime risk estimates were 19% and 18% in France and Germany, respectively. In both countries, the most prevalent needs clustered around the “living with cancer” and “children-related issues” domains. In multivariate analyses, a higher number of psychosocial needs were significantly associated with younger age (b = −0.05), higher anxiety (b = 0.78), and having children (b = 1.51), but not with country, educational level, marital status, depression, or loss of a family member due to hereditary cancer. These results are in line with the literature review data. However, this review identified only seven studies that quantitatively addressed psychosocial needs in the BC genetic counseling setting. Current data lack understandings of how cancer risk counseling affects psychosocial needs, and improves patient-centered care in that setting.

Keywords: breast cancer; genetic risk; risk counseling; psychosocial needs; distress; service delivery; culture (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2018
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