Patient-Centered Care in Breast Cancer Genetic Clinics

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.

Psychosocial problems in women attending French, German and Spanish genetics clinics before and after targeted or multigene testing results: an observational prospective study

“…Multiple regression analyses were performed on PAHC scale scores at T2 as the dependent variables, and in order to estimate the effect of the test result (ie, the change before and after testing may reflect the effect of genetic testing), we controlled for PAHC scores at T1. In addition, for each regression model, we also controlled for possible risk or protective factors of psychosocial problems,47 48 including country, sociodemographic (age, education level, marital and parental status) and clinical factors (BC diagnostic status, reported loss of family member(s) due to BC or OC), the type of genetic test (targeted or panel), BC risk perception and distress after the test result disclosure, the length of time between the pretest and post-test consultations and psychological help receipt after test disclosure. We also tested the interaction between PAHC scale scores at T1 and the test result on PAHC scale scores at T2.…”

What matters to patients? A mixed method study of the importance and consideration of oncology patient demands

“…A lack of global consideration for these various types of demands can result in a fragmented healthcare system and an inefficient use of meagre resources [ 3 , 13 ]. In order to initiate the design and implementation of a demand-driven organisational model, it is necessary to consider and study the content of all non-clinical demands, and their association with clinical demands, an area that has hitherto been investigated to a lesser extent [ 14 , 15 ].…”

Information needs on breast cancer genetic and non-genetic risk factors in relatives of women with a BRCA1/2 or PALB2 pathogenic variant

“…However, the adequacy of counselees’ understanding of multiple gene testing, their subsequent interpretation of results and adequate communication to family members has been questioned [ 14 ]. Many counselees at high hereditary BC risk reveal unmet needs about hereditary predisposition concerns [ 17 ]. Moreover, an identified genetic predisposition to cancer is not always shared among all family members [ [18] , [19] , [20] , [21] , [22] , [23] ], and when shared, it is generally incomplete or incorrect [ 24 ].…”