The 2010 Affordable Care Act (ACA) led to 26 million Americans gaining health insurance and improved access and reduced the cost of health care for millions more.1 One key part of the ACA's success was the dependent coverage mandate that allowed young adults to stay on their parent's private insurance through age 26 years. Historically, young adults have the greatest risk of having inadequate or no health insurance.2 Pre-ACA, one in three women aged 19–26 years was uninsured. Since implementation of the dependent coverage mandate in September 2010, more than 8 million young adults have been able to remain on their parent's insurance.3–5 Post-ACA, less than one in five women aged 19–26 years was uninsured.6
Access to consistent and high-quality health insurance under the ACA has the potential to decrease delays in care-seeking and improve gynecologic cancer outcomes such as earlier stage diagnosis and ability to receive curative treatment.7 These outcomes are particularly important in young women, given potential for fertility-staring treatment with early-stage diagnosis and high mortality with late-stage diagnosis.8–11 For cervical cancer, initial trends toward earlier diagnosis post-ACA were promising.12 However, this study was limited to 2 years immediately post-ACA when coverage gains were not yet realized.4
How the ACA's dependent coverage mandate affected women with gynecologic cancer remains an important question. As the ACA undergoes legislative revisions, understanding its effect is crucial to adopting evidence-based policies to improve women's health care. This study will examine the ACA's effect on stage at diagnosis and treatment of gynecologic cancer in young women.
MATERIALS AND METHODS
This study was granted exempt status by the Johns Hopkins institutional review board because it was determined not to be human subjects research.
We used a difference-in-differences study design to compare trends in diagnoses and treatment in young women with cervical, endometrial, ovarian, vulvar, or vaginal cancer before and after the ACA. Our intervention group was young women aged 21–26 years with gynecologic cancer, that is, women in the age group affected by the ACA's dependent coverage mandate. Our comparison group was women aged 27–35 years with gynecologic cancer, that is, women not affected by the ACA's dependent coverage mandate. Our study period included the 4 years pre-ACA (2006–2009) and 4 years post-ACA (2011–2014). We excluded 2010 as a washout period. The difference-in-differences approach approximates the effect of a randomized controlled trial by comparing trends over time in the intervention and comparison groups. It helps controls for secular trends (eg, the Great Recession) and baseline differences between the intervention and comparison groups.13 The ACA's other main initiatives—Medicaid expansion, health insurance marketplaces, the individual mandate—did not go into effect until 2014, making the dependent coverage mandate the main ACA-related policy change during the study period. Additionally, there were no major changes in federal or state health policy other than the ACA during the study period.
We used patient data from the National Cancer Database, a program of the American Cancer Society and the American College of Surgeons' Commission on Cancer. The National Cancer database is a hospital-based registry that collects standardized patient data from 1,500 cancer programs. Although the National Cancer Database does not include cancer programs not accredited by the Commission on Cancer, those affiliated with the Department of Defense and Veterans Affairs, or those in Puerto Rico. It is the largest cancer database in the United States and includes more than 70% of new cancer diagnoses.14 It is also thought to identify a greater proportion of young adults with cancer and has more complete staging and treatment information than comparable databases such as the Surveillance, Epidemiology, and End Results program.15 We identified all patients with new diagnoses of endometrial, ovarian, cervical, vulvar, or vaginal cancer. We excluded uterine sarcomas because of major changes in staging classification during the study period and gestational trophoblastic tumors resulting from tumor rarity.
Our first outcome was uninsurance level. We defined a woman as uninsured if she was recorded as “not insured” at the time of initial diagnosis or treatment. We defined a woman as privately insured if her primary insurance was recorded as “private insurance or managed care.” We defined a woman as publicly insured if her primary insurance was Medicaid, Medicare, or another government plan at the time of initial diagnosis or treatment. We excluded cases missing insurance status from analyses, which were less than 0.4% of cases in each survey year.
Our second outcome was early stage at diagnosis. Using the American Journal on Cancer Commission staging for each type of gynecologic cancer, we defined early-stage diagnosis as stage I–II and late-stage diagnosis as stage III-IV. We adjusted vulvar cancer diagnoses for the 2010 changes in American Joint Committee on Cancer staging: for patients with vulvar cancer before 2010; tumors with spread to urethra, anus, or vagina without lymphatic spread or distant metastases were reclassified as stage II. Other cancers underwent minimal changes in staging during the study period.
Our third outcome was receipt of fertility-sparing treatment. We defined fertility-sparing treatment by cancer: cervical conization or trachelectomy for cervical cancer; unilateral cystectomy or salpingo-oophorectomy with or without omentectomy for ovarian cancer; and dilation and curettage or hormonal therapy for endometrial cancer.
We analyzed outcomes for women overall and by cancer type. Because the ACA's dependent coverage mandate applied to private insurance, we stratified for insurance type (privately insured, publicly insured) in additional analyses. Nonetheless, because the overall number of women aged 21–25 years with gynecologic cancer is small, our main analysis focuses on all women to increase the power to detect differences over time.
We selected covariates that may mediate access to insurance and gynecologic cancer care.16–18 In our regression model, we adjusted for race (white, nonwhite), nonrural area (metropolitan area greater than or equal to or less than 50,000 people), area-level household income, and education attainment. In the National Cancer Database, area-level household income is defined as the median income in the patient's zip code at the time of diagnosis from the 2008–2012 American Community surveys and divided into quartiles (less than $38,00, $38,000–47,999, $48,000–62,999, $63,000 or more). Area-level education attainment is defined by proportion of individuals who did not graduate high school in the patient's zip code at the time for diagnosis from the 2008–2012 American Community surveys and divided into quartiles (21% or more, 13–20.9%, 7–12.9%, less than 7%).19 Although the National Cancer Database lacks individual patient data on income and education, the zip code-based variables we used appear to be highly correlated with actual patient income and education level.20,21
We assessed for baseline differences in demographic characteristics between the intervention and comparison groups using the pre-ACA survey waves and χ2 tests. We assessed pre–post trends in the intervention and then in the comparison groups for each outcome by subtracting the proportion with the outcome of interest pre-ACA from the proportion post-ACA. We assessed significance of pre–post trends using a linear regression model adjusted for covariates of interest. Consistent with a difference-in-differences approach, we then subtracted the pre–post difference in the intervention group from the pre–post trend in the comparison group using a linear regression model to calculate the unadjusted difference in the respective group's difference over time. We then used a multivariate linear regression model to adjust the difference-in-differences model for specified covariates. A difference-in-differences of zero suggests that there was no relationship between the ACA's dependent coverage mandate and the outcome of interest, whereas a positive or negative difference-in-differences suggests that the ACA's dependent coverage mandate increased or decreased the outcome of interest, respectively.
We performed two sensitivity analyses estimating intervention effects with different age groups, aged 21–25 years compared with aged 28–35 years (ie, excluding those who may age out of dependent coverage during the study period) and adjustment for age-related clustering effects. We chose these sensitivity analyses to confirm the robustness of the intervention to different model specifications. We considered a P value of <.05 to be significant. We had 80% power to detect pre–post differences of 5% at a P value of .05. Analyses were conducted with Stata 11.
A total of 1,912 gynecologic cancer cases pre-ACA and 2,059 post-ACA were identified for women 21–26 years compared with 9,782 cases pre-ACA and 10,456 post-ACA for women aged 27–35 years. Women aged 21–26 years were more likely to be uninsured and have lower household income and education pre-ACA than women aged 27–35 years (Table 1).
Uninsurance decreased nonsignificantly for women aged 21–26 years post-ACA (P for trend=.06) and increased nonsignificantly for the comparison group of women aged 27–35 years post-ACA (P for trend=.48) (Table 2). In the difference-in-differences model, the ACA was associated with a significant decrease in uninsurance (difference in differences=2.2%, 95% CI −4.0–0.1, P=.04) for women aged 21–26 years compared with women aged 27–35 years (Fig. 1).
Early-stage diagnosis increased for women aged 21–26 years post-ACA (P for trend=.001) and did not change significantly for women aged 27–35 years (P for trend=.06). In the difference-in-differences model, the ACA was associated with a significant increase in early-stage diagnosis of gynecologic cancer (difference in differences=3.6%, 95% CI 0.4–6.9, P=.03; Fig. 2). For endometrial cancer, diagnosis at an early stage increased significantly under the ACA for young women aged 21–26 years compared with women 27–35 years (difference in differences=10.1%, 95% CI 0.4–6.9, P=.01). There were no significant differences for other cancer types. Early stage at diagnosis was higher for privately insured women compared with publicly insured women in both age groups during the study period (Table 3). In the difference-in-differences model, there was no significant difference in early stage at diagnosis when stratified by insurance type.
Receipt of fertility-sparing cancer treatment increased significantly for women in both age groups during the study period (P for trend=.004 for women aged 21–26 years and P for trend=.001 for women aged 27–35 years). In the difference-in-differences model, there was no significant difference in fertility-sparing treatment between women aged 21–26 and 27–35 years under the ACA (difference in differences=1.8%, 95% CI −1.2 to 4.7, P=.24). Trends in fertility-sparing treatment did not differ by gynecologic cancer type. Receipt of fertility-sparing treatment was greater for privately insured women compared with publicly insured women in both age groups during the study period (Table 3). In the difference-in-differences model, the ACA was associated with a significant increase in receipt of fertility-sparing treatment for publicly insured women aged 21–26 years compared with publicly insured women aged 27–35 years (difference in differences=6.9%, 95% CI 0.4–6.9, P=.008; Table 3).
Our sensitivity analyses with different age groups, women aged 21–25 years compared with women aged 28–35 years, and with adjustment for age-related clustering effects confirmed our main findings with reductions in uninsurance and increases in early-stage diagnosis (Tables 4 and 5). Table 6 shows the regression coefficients for the main analysis, and Table 7 shows counts of gynecologic cancers by year during the study period. There were minimal differences in sociodemographic characteristics between women aged 21–26 years and age 27–35 years post-ACA (Table 8) and when women were stratified by insurance type (Table 9).
This study found that under the ACA's dependent coverage mandate, young women aged 21–26 years with gynecologic cancer were more likely to be insured and diagnosed at an early stage of disease. Women aged 21–26 and 27–35 years were more likely to receive fertility-sparing cancer treatment during the study period.
Although cancer occurs less frequently in young compared with older adults in the United States, it is a leading cause of mortality in this population.22,23 Furthermore, unlike the decreasing incidence in older adults, the incidence of cancer has been increasing in young adults over the past 20 years. The reasons for this trend are not entirely clear, although rising human papilloma virus infection and obesity rates are likely contributors in women.24 Approximately 20% of endometrial, ovarian, and cervical cancer cases occur in women younger than age 35 years. Given the benefits of early-stage diagnosis on cancer survivorship and potential to undergo fertility-sparing treatments, especially for women with gynecologic cancers, the effect of the ACA's dependent coverage mandate as seen in this study has long-term implications for U.S. women.
We found a significant reduction in uninsurance under the ACA's dependent coverage mandate consistent with previous studies in young adults.3–5 In fact, the uninsurance rates equalized for women aged 21–26 and women 27–35 years by 2014. These reductions in uninsurance were likely the driving factor behind the significant improvement in early-stage diagnosis of young women with gynecologic cancer under the ACA.25,26 For young adults overall, the ACA's dependent coverage mandate has been associated with increased access to primary care and fewer delays in seeking care.4,27–29 For cervical cancer, this translation from insurance and access to primary care to earlier stage at diagnosis is intuitive, given that cervical cancer screening begins at age 21 years, and is consistent with the one previous study on cervical cancer post-ACA.12 For endometrial cancer, insurance may facilitate workup of abnormal uterine bleeding or infertility and thus cancer diagnosis. Although diagnosing women at an earlier cancer stage is affected by multiple factors, including access to care, patient compliance with recommended cancer screening, and the interval for a specific cancer to progress from preinvasive to an advanced stage, the latter factors did not appreciably change during the study period. Studies of young adults with cancer pre-ACA demonstrate that inadequate health insurance is associated with a longer interval from the onset of a first cancer-related symptom to diagnosis, a higher likelihood of advanced-stage disease, and decreased receipt of standard cancer treatment.7,30,31 Moreover, patients with insurance coverage experience improved cancer-specific survival rates, especially those with private insurance.
Although receipt of fertility-sparing cancer treatment increased significantly for women in both age groups, we did not find a significant improvement in fertility-sparing treatment related to the ACA's dependent coverage mandate. The one prior study on cervical cancer under the ACA, in contrast, found an increase in fertility-sparing diagnosis 2 years post-ACA.12 As Figure 3 illustrates, this may reflect a temporary increase in younger women not borne out in later years. The overall increase in fertility-sparing treatment for both groups of women is a positive trend given low rates observed pre-ACA. This reflects a nationwide trend in gynecologic oncology toward less radical cancer treatment for select women with early-stage disease, independent of the ACA.32,33 The significant increase we found in fertility-sparing treatment for publicly insured women aged 21–26 years likely reflects this trend, although there remained significant disparities in receipt of fertility-sparing treatment by insurance type.
Our study has limitations, including those inherent to a difference-in-differences study design. We had 80% power to detect pre–post differences of 4% for the sample overall. Given the small number of gynecologic cancers in women aged 21–35 years, we were likely unpowered to detect significant differences in subgroup analysis by cancer and insurance type. The Great Recession occurred during the study period, which may bias results toward the null, given coverage gains in both age groups postrecession. The ACA's other main initiatives—Medicaid expansion, insurance marketplaces, individual mandate—were not implemented until 2014, making the dependent coverage mandate the main policy change during the study period.
Under the ACA's dependent coverage mandate, young women with gynecologic cancer were more likely to be insured and diagnosed at an early stage of disease. Such gains under the ACA have a long-term effect for these women, their families, and society, given lower mortality rates and the potential for cure and fertility-sparing cancer treatments with earlier stage diagnosis. Significant changes in, or repeal of the ACA, may jeopardize these gains in women's health and gynecologic cancer care.
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