In Search of New Perspectives in Cancer Genetics Services: Exploring Use of Genetic Counseling Among a Group of Young Breast Cancer Survivors

cancer genetic services;genetic counseling;genetic testing;young breast cancer survivors;hereditary cancer;health equity;underserved;underrepresented;cancer registry;secondary analysis;Family Medicine and Primary Care;Genetics;Internal Medicine and Specialties;Nursing;Public Health;Health Sciences;Nursing

Lee, CherylKatapodi, Maria C ;

University of Michigan

关键词: cancer genetic services;    genetic counseling;    genetic testing;    young breast cancer survivors;    hereditary cancer;    health equity;    underserved;    underrepresented;    cancer registry;    secondary analysis;    Family Medicine and Primary Care;    Genetics;    Internal Medicine and Specialties;    Nursing;    Public Health;    Health Sciences;    Nursing;   

Others  :  https://deepblue.lib.umich.edu/bitstream/handle/2027.42/145950/cherylsl_1.pdf?sequence=1&isAllowed=y

瑞士|英语

来源: The Illinois Digital Environment for Access to Learning and Scholarship

【 摘 要 】

Breast cancer associated with mutations in the breast cancer genes BRCA1 and BRCA2 often occurs at an earlier age and individuals with a mutation have increased risk for developing breast, ovarian, and other cancers.The cancers may be more difficult to treat, have higher rates of recurrence, and have poor outcomes.Genetic counseling can facilitate informed decision-making about risk-reducing strategies that have shown to be effective but carry their own risks.However, genetic counseling use is low, even among individuals considered high risk for having a BRCA mutation.The reason for this is not clear.Existing knowledge is limited by 1) inconsistent findings, 2) potential bias from highly selected samples (e.g., recruited only African American women, or only Hispanic women, or patients at a cancer risk evaluation clinic at an academic facility), 3) inadequate representation of rural populations, 4) small sample sizes, and 5) cross-sectional design. This dissertation describes a secondary analysis of existing data from a group of young breast cancer survivors identified using a state cancer registry.Of 859 participants, 281 (32.7%) used genetic counseling.Of 546 participants who did not use genetic counseling, 357 (65.4%) reported that ;;No one ever suggested it.”In fact, genetic counseling is recommended for all participants in this study due to their personal diagnosis of breast cancer at age younger than 50.There was no significant difference in genetic counseling use between medically served and underserved participants (=.05, p=.32).However, the analysis was underpowered and this finding should be interpreted with caution.Variables that showed positive associations with counseling use could be interpreted as facilitators and were the same for served and underserved groups: perceived positive consequences for family, perceived positive consequences for self, and provider recommended.The associations were moderate to strong with Pearson’s r>.50.Variables that showed negative associations could be interpreted as barriers.The strongest associations were still weak with Pearson’s r<-.25.These were: perceived negative consequences to self (among served) and convenience factors (among underserved). Logistic regression was done using data from the entire sample.The following were significant and increased odds of using genetic counseling: having an additional risk factor (OR=2.292; 95% CI=1.604-3.275; p=.000), income (OR=1.356; 95% CI=1.091-1.686; p=.006).Knowledge of breast cancer genetics also showed increased odds of using genetic counseling (OR=1.208; 95% CI=1.137-1.282; p=.000) but because 32.7% of participants already received genetic counseling at the time of the study, the knowledge score may be an outcome of genetic counseling rather than a predictor.Motivation to comply with healthcare provider showed lower odds of using genetic counseling (OR=.360; 95% CI=.162-.803; p=.013).Challenges in operationalizing variables due to being a secondary analysis led to exclusion of some variables from analyses and were a limitation of the study.Triandis’s model of interpersonal behavior still shows promise as a framework for guiding research on the predictors (barriers and facilitators) of cancer genetic counseling use. To prevent worsening disparities in the context of having a heritable mutation for cancer, additional work needs to ensure equitable opportunity to use genetic counseling.Prospective studies might oversample for rural populations and individuals of racial and ethnic minority background.Integration into the health care system, measured by regular use of preventive health services, may be a helpful criterion for determining underserved status in the context of the specialized health service of cancer genetic counseling.