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...
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Wiley
2019-03-01
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| Series: | Cancer Medicine |
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| Online Access: | https://doi.org/10.1002/cam4.1864 |
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| author | Monica H. Stamp Ora K. Gordon Christopher P. Childers Kimberly K. Childers |
| author_facet | Monica H. Stamp Ora K. Gordon Christopher P. Childers Kimberly K. Childers |
| author_sort | Monica H. Stamp |
| collection | DOAJ |
| description | 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 receipt of genetic counseling across both the affected and unaffected population was sex. With physician recommendation as the predominant driver for counseling, targeting physician education, and awareness is crucial to utilization. |
| format | Article |
| id | doaj-art-57a4ebdb2b43477db42b52486eae46ba |
| institution | Kabale University |
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| language | English |
| publishDate | 2019-03-01 |
| publisher | Wiley |
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| series | Cancer Medicine |
| spelling | doaj-art-57a4ebdb2b43477db42b52486eae46ba2025-01-31T08:47:43ZengWileyCancer Medicine2045-76342019-03-01831306131410.1002/cam4.1864Painting a portrait: Analysis of national health survey data for cancer genetic counselingMonica H. Stamp0Ora K. Gordon1Christopher P. Childers2Kimberly K. Childers3Center for Clinical Genetics and Genomics Providence St. Joseph Health Los Angeles CaliforniaCenter for Clinical Genetics and Genomics Providence St. Joseph Health Los Angeles CaliforniaDepartment of Surgery David Geffen School of Medicine at UCLA Los Angeles CaliforniaCenter for Clinical Genetics and Genomics Providence St. Joseph Health Los Angeles CaliforniaAbstract 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 receipt of genetic counseling across both the affected and unaffected population was sex. With physician recommendation as the predominant driver for counseling, targeting physician education, and awareness is crucial to utilization.https://doi.org/10.1002/cam4.1864genetic counselinghealth care disparitieshereditary cancernational surveypopulation health |
| spellingShingle | Monica H. Stamp Ora K. Gordon Christopher P. Childers Kimberly K. Childers Painting a portrait: Analysis of national health survey data for cancer genetic counseling Cancer Medicine genetic counseling health care disparities hereditary cancer national survey population health |
| title | Painting a portrait: Analysis of national health survey data for cancer genetic counseling |
| title_full | Painting a portrait: Analysis of national health survey data for cancer genetic counseling |
| title_fullStr | Painting a portrait: Analysis of national health survey data for cancer genetic counseling |
| title_full_unstemmed | Painting a portrait: Analysis of national health survey data for cancer genetic counseling |
| title_short | Painting a portrait: Analysis of national health survey data for cancer genetic counseling |
| title_sort | painting a portrait analysis of national health survey data for cancer genetic counseling |
| topic | genetic counseling health care disparities hereditary cancer national survey population health |
| url | https://doi.org/10.1002/cam4.1864 |
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