Health insurance coverage, care accessibility and affordability for adult survivors of childhood cancer: a cross-sectional study of a nationally representative database

Abstract

Purpose

We describe national patterns of health insurance coverage and care accessibility and affordability in a national sample of adult childhood cancer survivors (CCS) compared to adults without cancer.

Methods

Using data from the 2010–2014 National Health Interview Survey (NHIS), we selected a sample of all CCS age 21 to 65 years old and a 1:3 matched sample of controls without a history of cancer. We examined insurance coverage, care accessibility and affordability in CCS and controls. We tested for differences in the groups in bivariate analyses and multivariable logistic regression models.

Results

Of all respondents age 21–65 in the full NHIS sample, 443 (0.35 %) were CCS. Fewer CCS were insured (76.4 %) compared to controls (81.4 %, p=0.067). Significantly more CCS reported delaying medical care (24.7 vs 13.0 %), needing but not getting medical care in the previous 12 months (20.0 vs 10.0 %), and having trouble paying medical bills (40.3 vs 19.7 %) compared to controls (p<0.0001 for all). More CCS reported trouble with care affordability in the previous 12 months compared to controls on six categories of care and for a combined measure of affordability (p<0.0001 for composite of all). Adjusted analyses demonstrated that these differences comparing CCS to controls remained significant.

Conclusions

CCS report problems with health care accessibility and affordability. These analyses support the development of policies to assure that CCS have access to affordable services.

Implications for Cancer Survivors

Efforts to improve access to high-quality and affordable insurance for CCS may help reduce the gaps in getting medical care and problems with affordability. Health care providers should be aware that such problems exist and should discuss affordability and ability to obtain care with patients.

Introduction

Improvements in cancer treatment have led to an increase in the survival rate of children diagnosed with cancer, and recent estimates suggest that 5-year survival rates now exceed 80 % [1]. Currently, there are over 328,000 childhood cancer survivors (CCS) residing in the USA [2]. Unfortunately, cancer treatment can cause long-term complications and adverse health outcomes for CCS [3, 4]. Adult survivors of childhood cancer face a number of long-term physical and psychosocial challenges [5–8], such as an increased risk for subsequent malignancies [9], psychological distress [10], unemployment [11], lack of insurance, and difficulty accessing quality long-term follow-up medical care [12]. The long-term adverse health effects that CCS encounter may not appear until many years following treatment [13, 14]. Thus, CCS represent a population where access to affordable high-quality ongoing health care is critically important.

Although cancer survivors may experience adverse health outcomes and late effects of treatment, they often lack access to appropriate medical care. Childhood survivors’ have substantial unmet needs related to information about their condition and medical services, including mental health, pain management and financial advice [15]. Studies have shown that these patients often forgo care due to the many obstacles they face when seeking services [16, 17]. Using data from the Childhood Cancer Survivor Study (CCSS), investigators found that at 20 years post-cancer treatment, fewer than 30 % of CCS reported a cancer-related medical visit in the previous 2 years [18]. CCS survivors are a population particularly in need of high-quality medical care; yet current evidence suggests that they have many unmet health needs and experience substantial barriers to adequate health coverage.

Research has shown that CCS have difficulty accessing and maintaining health insurance. A 2005 study using CCSS data found that one-third of CCS reported difficulty obtaining insurance coverage, compared to 3 % of their siblings [12]. A study evaluating insurance coverage among adolescent and young adult (AYA) AYA cancer survivors showed that over one-fourth of this population experienced a period of no health insurance for up to 35 months [19]. In addition, studies suggest that uninsured survivors receive less risk-based, survivor-focused, general preventive health care than those with health insurance [20, 21].

While there is considerable evidence that uninsurance is a problem for CCS, less research has been done to understand problems affording and accessing care. Delayed or forgone care due to cost and lack of coverage for needed services are also indicators of inadequate insurance. In a qualitative study of CCSS participants, a majority of CCS reported being satisfied with their coverage, but expressed dissatisfaction with coverage costs [22]. More than half of the study participants reported paying over $2000 out-of-pocket annually for medical care, thus suggesting underinsurance may be an issue for these patients. Another CCSS study found that CCS reported having more restrictive and costly insurance plans compared to their siblings [12]. CCS face challenges obtaining health insurance suitable to cover their unique health care needs [12, 23]. Additionally, several studies have documented that CCS are more likely than healthy controls to receive public insurance which may also impact the quality of their medical care [20, 24]. Thus, data suggest that CCS may be at elevated risk for underinsurance, but few studies have directly addressed this issue.

In the present study, we sought to describe national patterns of insurance coverage and problems regarding care accessibility and affordability in adult survivors of childhood cancer using the National Health Interview Survey (NHIS). We also compared these data to NHIS respondents without a history of cancer (controls). We hypothesized that the CCS group would fair worse on measures of coverage, accessibility and affordability compared to controls. Our assessment of CCS’ insurance comes during implementation of the Patient Protection and Affordable Care Act (ACA) [25] which should help increase access to affordable, quality health care for cancer survivors, improve insurance coverage (via Medicaid expansion and subsidized exchanges), and reduce out-of-pocket medical costs. Understanding the extent of these problems among CCS should inform future interventions to improve the access to and affordability of needed services during this important time of insurance expansion.

Materials and methods

Participants

We analyzed data from the 2010–2014 National Health Interview Survey (NHIS), a nationally representative sample of non-military and non-institutionalized individuals living in the USA [26]. The National Center for Health Statistics administers the NHIS survey annually using computer-assisted personal interviewing to collect health-related information from participants. We used data from the adult interview and the household survey. We examined two groups of adults: CCS and adults with no reported history of cancer during childhood or adulthood whom we refer to as controls. Similar to the CCSS study criteria, we categorized any individual who reported receiving a cancer diagnosis before the age of 21 as a CCS. Both groups were limited to the age range of 21–65 in order to reduce the influence of changes in the insurance system for individuals over age 65. We further limited the analysis sample to all CCS and a 1:3 matched sample of controls, matched on age, gender, race, and ethnicity.

Measures

The survey contains sociodemographic information about participants, including: age at time of survey, geographic region of the country, gender, race/ethnicity, marital status, whether individuals had access to paid sick leave at their current job, income, educational status, and whether the individual worked for pay. Types of insurance included: any coverage by government-sponsored insurance; any coverage by commercial/private insurance; and no insurance coverage (separate binary variables). We also examined usual source of health care including: having a usual place to go when sick; where the participant usually went when sick; whether the participant has a usual place for routine care; and where the participant usually goes for routine care.

Access to care variables included: any delayed medical care in the past 12 months and whether they needed and did not get medical care in the past 12 months, usual place of care, and problems paying medical bills. A series of questions about care affordability asked participants to report if they could afford different types of care in the previous 12 months, such as: prescription medications; mental health care; dental care; eyeglasses; specialist care; and follow-up care. We computed a composite affordability variable that indicates whether the respondent endorsed any of the six areas as not affordable. Participants also reported whether they were worried about paying medical bills if they got sick or had an accident.

Statistical analyses

Participant demographics, insurance coverage and type, and accessibility and affordability of care were described (means) or tabulated (percentage by group—CCS and controls) and unadjusted binary logistic regression was used to compare the groups CCS to controls. Two-sided tests with an alpha level of 0.05 were used. Our outcomes of interest were tested for differences in the groups using binary logistic regression, adjusted for age, region, gender, ethnicity, and marital status. Specifically, our models tested these four binary outcomes: (1) medical care delayed in previous 12 months; (2) needed, but did not get medical care in previous 12 months; (3) unable to afford prescription medication in previous 12 months, and (4) unable to afford at least one of six types of care (including prescription medication). We chose these outcome variables to best represent underinsurance and to remain parsimonious in our list of outcomes. For the regression models we further ran sensitivity analyses stratified by age group (under 40 vs older), gender, and race (white vs. non-white). We used listwise deletion, as our sample was large and levels of missing data were small. NHIS weighting was implemented in all models, and analyses were performed using SAS software, Version 9.4 of the SAS System for Windows. Copyright © 2013 SAS Institute Inc.

Results

Sample characteristics

Of all adult respondents age 21–65 (n = 123,854), 443 (0.35 %) were CCS. There are no differences in the matched sample based on age, gender, race, and ethnicity (our matching variables, see Table 1). CCS participants were less likely to be married than controls (41.7 vs. 53.4 %; p=0.0008). A smaller proportion of CCS participants reported having paid sick leave at their current job compared to controls (44.9 vs. 53.9 %; p=0.015). CCS participants also reported having lower income and less education compared to controls (Table 1), and fewer CCS worked for pay (55.5 vs. 66.2 %; p=0.0005).

Table 1.

Participant demographics and insurance status, unadjusted comparisons for 2010–2014 NHIS data for all CCS and a 1:3 matched sample of adults without cancer (matched on age, sex, race, ethnicity)

Variable	CCS (n=443)	Controls(n = 1329)	CCS vs. controls
	Mean or %	Mean or %	p value
Age in years (mean)	38.3	39.7	0.099
Sex
Female	69.0 %	67.4 %	0.58
Male	31.0 %	32.6 %
Race
White	87.7 %	88.6 %	[ref]
African-American	6.1 %	5.8 %	0.82
Other	6.3 %	5.6 %	0.67
Hispanic ethnicity	8.2 %	9.0 %	0.63
Marital status: married	41.7 %	53.4 %	0.0008
Paid sick leave at current job	44.9 %	53.9 %	0.015
Income
Under $25,000/year	46.8 %	40.1 %	0.017
$25,000 to $54,999/year	37.3 %	36.2 %	0.074
$55,000/year and up	15.8 %	23.7 %	[ref]
Education
Less than HS grad	14.7 %	9.5 %	0.021
HS grad/GED	22.3 %	23.0 %	0.84
More than HS	63.0 %	67.4 %	[ref]
Working for pay	55.5 %	66.2 %	0.0005
Has health insurance	76.4 %	81.4 %	0.067
Has government-sponsored insurance	30.3 %	14.7 %	<0.0001
Has private health insurance	44.8 %	66.8 %	<0.0001

CCS childhood cancer survivor

Type of insurance

CCS were insured less often compared to controls but these differences are not statistically significant (76.4 vs. 81.4 %; p=0.067), (Table 1). CCS received government-sponsored insurance at higher rates than controls (30.3 vs. 14.7 %; p<0.0001) and CCS had private health insurance at lower rates than controls (44.8 vs. 66.8 %; p<0.0001).

Accessibility of care and usual place of care

CCS had a higher proportion of respondents who reported delaying medical care in the previous 12 months compared to controls (24.7 vs. 13.0 %; p < 0.0001) (Table 2). Additionally, CCS were more likely to report needing, but not getting medical care in the previous 12 months compared to controls (20.0 vs. 10.0 %; p<0.0001). Adjusted analyses demonstrated that CCS were more likely to delay medical care (odds ratio (OR) 2.09, 95 % CI 1.48–2.95; p<0.0001) and to report needing, but not getting medical care in the previous 12 months compared to controls (OR 1.99, 95 % CI 1.38–2.87; p=0.0002) (Table 3). When asked about having a usual place to go when sick, a similar proportion of CCS participants reported that they did not have a place to go compared to controls (16.1 vs. 17.0 %), and the same is true of having a usual source of routine/preventative care (8.8 vs. 7.9 %).

Table 2.

Accessibility and affordability of care in previous 12 months: unadjusted comparisons for 2010–2014 NHIS data for all CCS and a 1:3 matched sample controls (matched on age, sex, race, ethnicity)

Variable	CCS	Controls
	Age<21 diagnosed with cancer	Adults with no cancer	CCS vs. controls
	%	%	p value
Accessibility of care
Medical care delayed	24.7	13.0	<0.0001
Need and not get medical care	20.0	10.0	<0.0001
No usual place to go when sick	16.1	17.0	0.70
No usual place for routine/preventive care	8.8	7.9	0.61
Affordability of care
Problems paying medical bills	40.4	19.7	<0.0001
Unable to afford:
Prescription medication	26.1	11.2	<0.0001
Follow-up care	17.3	6.8	<0.0001
Specialist care	15.6	8.2	0.006
Mental health care	11.6	3.4	<0.0001
Dental care	30.9	17.7	<0.0001
Eyeglasses	18.7	10.4	0.001
Unable to afford any of above*	41.6	24.3	<0.0001
Worried paying medical bills if sick/had an accident
Very worried	29.0	21.0	0.011
Somewhat worried	33.1	35.0	0.64
Not worried	37.9	43.9	[ref]
N	443	1,329

CCS childhood cancer survivor, N number

Italicized p values indicate p<0.05

^*Unable to afford at least one of the following: prescription medication, follow-up care, specialist care, mental health care, dental care, eyeglasses

Table 3.

Adjusted logistic regression model results

Model outcome variable1	Odds ratio	95 % confidence interval	p value
Medical care delayed
CCS vs. Controls	2.09	1.48–2.95	<0.0001
Need and not get medical care
CCS vs. Controls	1.99	1.38–2.87	0.0002
Unable to afford at least prescription medications previous 12 months
CCS vs. controls	3.13	2.16–4.53	<0.0001
Unable to afford at least one of six services*
CCS vs. controls	2.47	1.82–3.36	<0.0001

¹Models adjusted for age, region, sex, ethnicity, and marital status

Italicized p values indicate p<0.05.

^*unable to afford at least one of the following: prescription medication, follow-up care, specialist care, mental health care, dental care, eyeglasses

Affordability of care

Significantly more CCS reported having problems paying medical bills compared to controls (CCS 40.3 %; controls 19.7 %, p<0.0001) (see Table 2). The CCS group had a high proportion who reported trouble with care affordability in the previous 12 months (e.g., ability to afford prescription medications, mental health services, dental care, eyeglasses, care from a specialist, and follow-up care in the previous 12 months), compared to and controls (p<0.01 for all). On the composite variable, we found that 41.6 % of the CCS reported not being able to afford at least one of the six services compared to 24.3 % for the control group (p<0.0001). Our adjusted analyses demonstrated that CCS were more than twice as likely to report trouble affording medications in the previous 12 months compared to controls (OR 3.13, 95 % CI 2.16–4.53; p<0.0001). The comparison of the CCC with the control group was statistically significant for the composite measure of not being able to afford at least one of six services (OR 2.47, 95 % CI 1.82–3.36; p<0.0001). When asked about being worried about paying their medical bills if they got sick or had an accident, CCS participants were more likely to report being very worried and less likely to report being not worried compared to those in the control group (Table 2).

Sensitivity analyses

Analyses stratified separately by age group, gender, and race showed that although coefficients for the CCS group variable were in many cases no longer statistically significant, this loss of statistical significant was in the group with the smaller sample size and in all cases the odds ratios remained greater than 1.00.

Discussion

We present novel findings demonstrating nationally that CCS face problems with care accessibility and affordability, even when insured. We found that CCS were more likely to have government-sponsored insurance and less likely to have private insurance compared to controls. Regarding care accessibility, CCS consistently reported higher rates of access problems, including delaying medical care and needing, but not getting medical care. Similarly for care affordability, CCS reported more troubles affording care and higher rates of worrying about medical bills. We believe this is the first study to compare care accessibility and affordability among CCS and a control group from a nationally representative sample. Collectively, these findings suggest that the CCS are an underinsured population of cancer survivors with problems regarding care accessibility and affordability that are distinctly different than those of controls.

CCS are at risk for long-term treatment-related adverse effects and poorer general health outcomes than controls, yet they often encounter barriers to adequate health insurance coverage [12, 23, 27]. The risk for these late effects and subsequent malignancies remains for many years after their treatment [3, 4, 28, 29], thus underscoring the importance of ongoing health care for CCS as they age. Consistent with a prior study of survivors of childhood acute lymphoblastic leukemia, our study showed that CCS and controls lacked insurance coverage at similar rates [30]. Although not statistically significantly different from controls, the high uninsurance rates for CCS in our study are concerning, considering that lack of insurance has been shown to correlate with poor access to needed health care services [20, 21, 31, 32]. Moreover, these rates of uninsurance are higher than those previously reported among the CCSS cohort [12, 33], which is a sample of tertiary care center patients in the USA. Additionally, studies suggest that lack of health insurance coverage is associated with lower likelihood of patients receiving cancer-related medical visits [21, 34].

We found that CCS were more likely to have government-sponsored insurance compared to controls. This is consistent with prior CCSS studies [12]. Other studies have shown that cancer survivors with public insurance are more likely to report difficulty obtaining health care or not receiving needed care more than those with private insurance [24, 30]. Thus, despite having insurance, survivors may not have adequate coverage which can negatively impact their receipt of ongoing medical care. Finally, our study cannot determine the potential impact of the ACA, as data collection occurred during the rollout of the ACA.

Our data also suggest that CCS were more likely to report care accessibility problems. A higher proportion of CCS reported care delays and unmet medical needs compared to controls. Although this study does not elucidate the reasons for the delays and unmet needs, they may be due to inadequate insurance coverage, difficulty with transport or other logistics, and costs of care. Future research should seek to better understand what underlies these differences in care accessibility between CCS and controls. In our study, CCS were more likely to report delaying medical care and not getting needed care in the previous 12 months compared to controls. This concurs with findings from a CCSS study demonstrating that CCS are more likely to report not seeking medical care if they lack health insurance [34].

Financial burden resulting from the high out-of-pocket costs that cancer patients and survivors endure has gained increasing attention in recent years [35, 36]. In our study, over one-quarter of CCS participants reported trouble affording their medications, 42 % reported difficulty affording at least one of the six types of care, and 68 % reported an inability to pay their medical bills. These findings support those of prior studies that suggest a considerable proportion of cancer survivors experience cancer-related financial problems [37–39]. In a study using the 2011 Medical Expenditure Panel Survey and Experiences with Cancer Survivorship Supplement, 33 % of survivors reported financial concerns [40]. Another study utilized this same dataset to demonstrate that cancer survivors have significantly greater out-of-pocket medical expenditures compared to those without cancer [41].

Furthermore, studies have shown that cancer survivors often forgo needed medical care due to financial concerns [24, 37, 39]. In our study, CCS were more likely to report not being able to afford prescription medications, mental health care, dental care, eyeglasses, specialist care and follow-up care in the previous 12 months compared to controls. Matching on age and controlling for age in the regression analyses should alleviate the concern that age is driving the relationship since younger age has been associated with greater likelihood of experiencing financial concerns among cancer survivors [37]. Therefore, CCS represent a population at high risk for experiencing financial burden and the adverse consequences of this burden, including inability to afford the care they need.

Several limitations of our study warrant discussion. First, this was a cross-sectional study, thus we cannot determine how a diagnosis of cancer influences patients’ insurance coverage, access to care, or care affordability over time. Second, the data for this study were collected during the rollout of the ACA and future studies should seek to determine how these results change following implementation of the ACA provisions. Third, we were limited in our ability to look at subgroups due to the small size of the CCS group even once multiple NHIS years were combined. Fourth, we did not have detail on the health insurance plans (for example we lacked information about co-pays and out-of-pocket costs.) Lastly, participant nonresponse and missing data may have impacted our results. In the NHIS data, individuals with poorer health have higher nonresponse [42]; thus, despite using the NHIS weights to adjust analyses, our data may underestimate problems regarding care accessibility and affordability.

Conclusion

Survivors of childhood cancer need attentive, continuous health care for a multitude of potential long-term adverse health effects, but they frequently encounter problems accessing and affording medical care. Our study suggests that 1 out of every 4 CCS do not have adequate coverage; they often lack insurance and are more likely to report problems with care accessibility and affordability. These problems likely play a role in patients’ financial distress and the quality of their care. Clinicians, policy stakeholders, and survivors themselves would all benefit from a better understanding of the mechanisms underlying access and affordability problems and their associated adverse impacts. Future research should include efforts to define underinsurance based on survivors’ out-of-pocket medical costs or specific coverage limitations, while exploring strategies to diminish care accessibility and affordability problems among this vulnerable patient population.