Painting a portrait: Analysis of national health survey data for cancer genetic counseling

Abstract

Background Despite a growing body of literature describing the geographic and sociodemographic distribution of cancer genetic testing, work focused on these domains in cancer genetic counseling is limited. Research describing the epidemiology of cancer genetic counseling has mainly focused on isolated populations, a single gender (women) and a single condition (hereditary breast and ovarian cancer). Study findings to date are contradictory, making it unclear what, if any, disparities in receipt of cancer genetic counseling exist. Methods Utilizing the 2015 National Health Interview Survey (NHIS)—a cross‐sectional, in person interview survey collecting self‐reported health data for the US population—geographic and sociodemographic factors were compared between those receiving genetic counseling and the national sample. Bivariate analysis and subsequent multivariable logistic regression were performed with stratification by cancer status (affected/unaffected). Reason for (eg, doctor recommended) and focus of (eg, breast/ovarian) genetic counseling were also assessed. To generate nationally representative estimates, all analyses were adjusted for survey weights. Results An estimated 4.8 million individuals in the United States had cancer genetic counseling. On bivariate analysis, there were significant differences in proportions undergoing genetic counseling by sex, race/ethnicity, insurance, citizenship, education, age, and cancer status (P < 0.01). After adjustment, however, only female sex (Odds Ratio [OR]: 1.78 [95% CI: 1.18‐2.67]) remained a significant predictor of genetic counseling among the affected. Among the unaffected, female sex (OR: 1.70 [1.30‐2.21]), non‐Hispanic black race (OR: 1.44 [1.02‐2.05], reference: non‐Hispanic white), graduate education (OR: 1.76 [1.03‐2.98], reference: less than high school), and age (OR: 1.06 [1.01‐1.11]) predicted higher rates of genetic counseling. An estimated 2.1 million individuals have undergone genetic counseling focused on breast/ovarian cancer, 1.3 million on colorectal cancer, and 1.4 million on “other” cancers. Of those receiving genetic counseling focused on breast/ovarian cancer, 3% were male and 97% female (breast cancer alone‐4% male, 96% female); for colorectal cancer, 49% male and 51% female, and for “other” cancers, 60% male and 40% female. The majority of individuals receiving genetic counseling reported they did so because their doctor recommended it (66%), with smaller proportions describing self (12%), family (10%), or media (5%) influences as the primary reason. Conclusion This is the first study to depict the sociodemographic and geographic distribution of cancer genetic counseling at the national level. Despite perceived disparities in access, cancer genetic counseling in the United States appears to be accessed by individuals of diverse racial/ethnic backgrounds, with various insurance coverage and educational levels, and across a broad range of ages and geographic regions. The only sociodemographic factor that independently predicted rec...

Racial and ethnic differences in genetic counseling experiences and outcomes in the United States: A systematic review

“…When referred, rates of uptake of genetic counseling in some racial and ethnic minority groups are similar to each other, but in other cases rates of uptake are lower compared with similar groups of White individuals (Forman & Hall, ; Halbert et al, ). In contrast, several studies have demonstrated that Black individuals had a greater likelihood of undergoing genetic counseling when offered (Katz et al, ; Stamp, Gordon, Childers, & Childers, ). While studies have shown varied uptake of referrals to genetic services based on race and ethnicity, the impact of race and ethnicity on the receipt of genetic counseling, and perception of the genetic counseling process and outcome have yet to be systematically examined or comprehensively understood.…”

Gender differences in self‐reported family history of cancer: A review and secondary data analysis

“…The knowledge that one or more first‐degree relatives did have cancer is one important factor for the self‐assessment that one could be at risk for getting cancer as well. Indeed, several analyses using data from the large US National Health Interview Survey (NHIS) identified clear gender differences in awareness and use of genetic counseling and testing 11,12 . Male sex was identified as a factor associated with lower awareness regarding cancer genetic testing 11 and another recent analysis of NHIS 2015 data revealed that in the US men had made less use of genetic counseling than women 12 …”

“…Indeed, several analyses using data from the large US National Health Interview Survey (NHIS) identified clear gender differences in awareness and use of genetic counseling and testing. 11,12 Male sex was identified as a factor associated with lower awareness regarding cancer genetic testing 11 and another recent analysis of NHIS 2015 data revealed that in the US men had made less use of genetic counseling than women. 12 Up to now the evidence regarding gender differences in self-reported FHC has not been systematically gathered and analyzed across studies.…”

“…11,12 Male sex was identified as a factor associated with lower awareness regarding cancer genetic testing 11 and another recent analysis of NHIS 2015 data revealed that in the US men had made less use of genetic counseling than women. 12 Up to now the evidence regarding gender differences in self-reported FHC has not been systematically gathered and analyzed across studies. Moreover, several surveys present substantial gender differences in self-reported FHC in their result tables without discussing them in the text.…”

Variations in the Referral Pattern for Genetic Counseling of Patients with Early-Onset Breast Cancer: A Population-Based Study in Southern Sweden

“…Some previously published studies have addressed the association between ethnicity and the probability of receiving genetic counseling and testing [22, 25]. It should be mentioned that while our study relies heavily on the high quality of Swedish health care registries and the possibility to link data from different registries through personal identification numbers, ethnicity is considered sensitive information and could not be extracted on an individual basis for this project.…”