Abstract
This study assessed a randomly selected, age-stratified sample of 698 childhood cancer survivors and 210 siblings and insurance coverage characteristics to determine the impact of underinsurance.
Advances in treatment have resulted in a growing population of more than 375 000 adult survivors of childhood cancer who are at high risk for long-term, treatment-related morbidity requiring ongoing medical surveillance. Previous research with the multi-institutional Childhood Cancer Survivor Study (CCSS) revealed that childhood survivors were vulnerable to being uninsured and may be underinsured (ie, inadequate coverage without financial protection).
Methods
One year after the enactment of the Affordable Care Act provisions, we assessed a randomly selected, age-stratified sample of 698 CCSS survivors and 210 siblings and assessed insurance coverage characteristics and the impact of underinsurance (cost, worry about health care costs, and the effects of worry on health care access). t Tests and χ2 analyses compared responses of survivors vs siblings and insured vs uninsured survivors. Multivariable logistic regressions compared survivors vs siblings and insured vs uninsured survivors on health care costs, worry, and effects on health care access, adjusting for age, sex, marital status, and chronic health conditions.
All procedures were approved by the institutional review boards of St Jude Children’s Research Hospital and the Massachusetts General Hospital/Partners HealthCare. All study participants had consented prior to be a part of the CCSS cohort at St Jude Children’s Research Hospital.
Results
Among the 89.8% (698) and 92.2% (210) of insured survivors and siblings, respectively (Table 1), survivors had lower rates of employer-sponsored coverage, higher rates of Medicaid, greater difficulty obtaining coverage, and higher rates of being denied coverage; only 14.9% and 11.5%, respectively, rated their health insurance coverage as “fair to poor.” However, survivors reported higher annual out-of-pocket costs than siblings (mean, $2372 vs $1568; P < .01); insured survivors reported higher out-of-pocket costs than uninsured survivors (mean, $2487 vs $1293; P = .003) (data not shown). Survivors were more likely than siblings to borrow money because of medical expenses (odds ratio [OR], 1.84; 95% CI, 1.03-3.28), worry that they would not be able to get a needed medical procedure (OR, 1.80; 95% CI, 1.09-2.98), and not fill a prescription (OR, 1.74; 95% CI, 1.01-3.04) (Table 2). Compared with insured survivors, uninsured survivors were more likely than insured survivors to borrow money because of medical expenses (OR, 3.11; 95% CI, 1.67-5.79), worry about not being able to pay medical bills (OR, 6.21; 95% CI, 3.27-11.77), not have a primary care provider (OR, 12.17; 95% CI, 6.16-24.01), postpone preventive care (OR, 8.28; 95% CI, 4.41-15.55), not get a needed medical test or follow-up (OR, 8.53; 95% CI, 4.59-15.88), and not fill a prescription (30.9% vs 14.1%; OR, 3.31; 95% CI, 1.64-6.69).
Table 1. Sociodemographic and Treatment Characteristics and Health Insurance Coverage and Quality Among Survivors of Childhood Cancer and Siblingsa.
| Characteristic | No. (Weighted %)b | P Value | |
|---|---|---|---|
| Survivors (n = 698) |
Siblings (n = 210) |
||
| Age at survey, y | .06 | ||
| 22-29 | 214 (11.3) | 61 (13.5) | |
| 30-39 | 228 (42.3) | 68 (33.6) | |
| 40-62 | 256 (46.2) | 81 (53.0) | |
| Sex | .11 | ||
| Male | 314 (45.5) | 82 (38.9) | |
| Female | 384 (54.5) | 128 (61.1) | |
| Household income, $ | .02 | ||
| <20 000 | 91 (12.0) | 12 (5.2) | |
| 20 000-39 999 | 106 (14.9) | 24 (10.7) | |
| 40 000-59 999 | 104 (15.8) | 35 (16.9) | |
| 60 000-79 999 | 95 (14.8) | 32 (16.1) | |
| >80 000 | 240 (38.3) | 90 (48.7) | |
| Don't know | 36 (4.2) | 8 (2.4) | |
| Cancer diagnosis | |||
| Leukemia | 255 (35.0) | NA | |
| Central nervous system tumor | 104 (14.9) | NA | |
| Hodgkin lymphoma | 71 (12.9) | NA | |
| Neuroblastoma | 67 (6.1) | NA | |
| Non-Hodgkin lymphoma | 39 (6.7) | NA | |
| Wilms (kidney) tumor | 66 (8.1) | NA | |
| Soft-tissue sarcoma | 51 (8.3) | NA | |
| Bone | 45 (8.1) | NA | |
| Years since diagnosis (25th-75th interquartile range) | 31.3 (27.4-35.1) | NA | NA |
| Prevalence of chronic health condition (CTCAE grade) | <.001 | ||
| None | 111 (15.2) | 68 (32.3) | |
| Mild-moderate (grades 1-2) | 319 (45.2) | 114 (52.0) | |
| 1 Severe to life-threatening (grades 3-4) | 172 (25.1) | 28 (15.7) | |
| Multiple severe to life-threatening (grades 3-4) | 96 (14.6) | 0 | |
| Health insurance | .31 | ||
| Insured | 619 (89.8) | 189 (92.2) | |
| Uninsured | 79 (10.2) | 21 (7.9) | |
| Policy owner for primary insurance planc | .34 | ||
| Self | 486 (71.0) | 141 (67.5) | |
| Spouse | 154 (24.5) | 55 (29.9) | |
| Parent | 36 (3.6) | 8 (2.1) | |
| Other | 3 (<1.0) | 1 (<1.0) | |
| Don’t know | 4 (<1.0) | 0 | |
| Types of insurance (“most recent” for uninsured) | |||
| Employer-sponsored/military | 525 (79.1) | 172 (86.0) | .03 |
| Medicaid/state | 93 (12.1) | 10 (4.4) | .002 |
| Individual | 54 (7.5) | 21 (8.9) | .52 |
| Medicare | 56 (7.4) | 2 (<1.0) | <.001 |
| Don't know | 6 (<1.0) | 1 (<1.0) | .94 |
| Ever been denied coverage of health insurance | <.001 | ||
| Yes | 101 (15.4) | 4 (1.6) | |
| No | 551 (80.0) | 200 (97.7) | |
| Don’t know | 36 (4.6) | 2 (<1.0) | |
| Difficulty obtaining coverage in the past 2 y | <.001 | ||
| Yes | 46 (6.8) | 2 (<1.0) | |
| No | 612 (88.7) | 202 (97.6) | |
| Don’t know | 32 (4.5) | 3 (1.7) | |
| Coverage characteristics among insured | Survivors (n = 619) | Siblings (n = 189) | |
| Participants’ rating of their health insurance coverage | .25 | ||
| Excellent | 154 (24.3) | 39 (22.2) | |
| Very good | 220 (37.0) | 65 (34.5) | |
| Good | 141 (23.1) | 57 (31.3) | |
| Fair | 82 (12.6) | 20 (8.6) | |
| Poor | 14 (2.3) | 5 (2.9) | |
| Don’t know | 5 (<1.0) | 2 (<1.0) | |
| Physician selection | .21 | ||
| I can see any physician I want, and if he/she is out-of-network I have the same copay | 125 (20.8) | 27 (14.0) | |
| I can see any physician I want, but if he/she is out-of-network I have a higher copay | 303 (50.9) | 103 (57.3) | |
| I can only see physicians who are within my insurance network | 123 (19.4) | 36 (18.3) | |
| Don't know | 62 (8.9) | 21 (10.4) | |
| Referral required to see specialist | .002 | ||
| Yes | 254 (42.9) | 58 (31.0) | |
| No | 277 (45.4) | 87 (48.2) | |
| I don’t know | 85 (11.8) | 42 (20.7) | |
| Types of services covered | |||
| Medical care | .20 | ||
| Most care covered | 536 (87.4) | 151 (82.0) | |
| Some/no care covered | 75 (12.0) | 34 (17.1) | |
| Don’t know | 6 (<1.0) | 2 (1.0) | |
| Prescription medication | .01 | ||
| Most prescriptions covered | 455 (74.7) | 119 (64.2) | |
| Some/none covered | 154 (24.5) | 64 (33.2) | |
| Don’t know | 6 (<1.0) | 5 (2.6) | |
Abbreviations: CTCAE, Common Terminology Criteria for Adverse Events, version 4.03; NA, not applicable.
The total number in the table does not sum to 698 for survivors and 210 for siblings, for certain variables, because of missing data..
Percentages and P values calculated with weights that reflect the population age distribution of the full Childhood Cancer Survivor Study cohort.
Most recent plan for uninsured.
Table 2. Prevalence and Multivariable Odds Ratios (ORs) of Health Care Costs, Worry, and Effects on Health Care Utilization.
| Outcomes | Survivors and Siblings, No. (%)a | OR (95% CI)b | Survivors by Insurance Status, No. (%) | OR (95% CI)c | ||
|---|---|---|---|---|---|---|
| Survivors | Siblings | Uninsured | Insured | |||
| Health Care Costs | ||||||
| In the past year, have any of the following happened because of medical expenses?d | ||||||
| Had to take money out of savings | 212 (32.8) | 56 (26.6) | 1.28 (0.87-1.90) | 31 (39.7) | 181 (32.0) | 1.67 (0.93-3.02) |
| Had to borrow money | 117 (17.3) | 18 (9.1) | 1.84 (1.03-3.28) | 28 (33.9) | 89 (15.5) | 3.11 (1.67-5.79) |
| Worry | ||||||
| In the past year, how much did you worry that:e | ||||||
| You wouldn’t be able to pay for medical bills | 171 (26.7) | 39 (19.1) | 1.45 (0.94-2.23) | 43 (59.2) | 128 (23.3) | 6.21 (3.27-11.77) |
| You wouldn’t be able to get a medical procedure that you needed | 135 (20.6) | 27 (12.4) | 1.80 (1.09-2.98) | 41 (58.5) | 94 (16.6) | 8.53 (4.59-15.88) |
| You wouldn’t be able to go to the health care providers you wanted | 128 (19.4) | 29 (15.0) | 1.32 (0.80-2.16) | 40 (55.1) | 88 (15.6) | 8.63 (4.59-16.20) |
| Effects of Health Care Costs and Cost-Worry on Health Care Utilization | ||||||
| In the past year, was there a time when you did any of the following because you were worried about the cost?d | ||||||
| Skipped medical test, treatment, or follow-up | 159 (24.6) | 38 (19.5) | 1.77 (0.75-2.83) | 34 (45.9) | 125 (22.3) | 4.24 (2.30-7.81) |
| Had a medical problem but did not go to a health care provider or a clinic | 169 (25.3) | 49 (23.7) | 1.03 (0.69-1.55) | 46 (59.8) | 123 (21.6) | 8.00 (4.23-15.15) |
| Did not see a specialist | 82 (13.1) | 21 (11.5) | 1.02 (0.60-1.74) | 13 (17.7) | 69 (12.7) | 1.67 (0.76-3.66) |
| Postponed preventative care | 181 (27.6) | 48 (22.6) | 1.20 (0.79-1.81) | 43 (63.5) | 138 (24.0) | 8.28 (4.41-15.55) |
| Had no primary care provider | 76 (10.1) | 20 (7.7) | 1.32 (0.74-2.39) | 34 (45.7) | 42 (6.3) | 12.17 (6.16-24.01) |
| Did not fill a prescription | 107 (15.7) | 19 (9.0) | 1.74 (1.01-3.04) | 25 (30.9) | 82 (14.1) | 3.31 (1.64-6.69) |
Percentages weighted to reflect the population age distribution of the full Childhood Cancer Survivor Study cohort.
Regression models adjusted for age, sex, marital status, and chronic health condition; ORs show survivor vs siblings (reference category).
Regression models adjusted for age, sex, marital status, and chronic health condition; ORs show uninsured survivors vs insured survivors (reference category).
Participants who reported yes; “don’t know” and missing were excluded. ·
Participants who reported worrying a great deal or a fair amount (other response choices: not at all or a little).
Discussion
During the early stages of the ACA rollout, disparities in many characteristics of childhood cancer survivors’ coverage existed; although survivor-sibling differences were not seen in rates of coverage, survivors had higher out-of-pocket expenses, despite lower household incomes. Childhood survivors reported satisfaction with their insurance coverage despite high costs, which reflects the sentiment gleaned from qualitative work suggesting that childhood survivors may not be selective about their coverage characteristics and cost. In a related finding, more survivors reported not filling a prescription due to financial concerns, despite survivors more frequently reporting that “most” prescription medications were covered by their plan. Uninsured survivors had increased worry about costs that translated into skipping or postponing medical tests or clinic visits. In addition, uninsured survivors reported paying less out-of-pocket compared with insured survivors. This suggests that uninsured survivors likely are avoiding needed health care; indeed, approximately half did not have a primary care provider and forewent treatment for a medical problem.
The generalizability of these findings may be limited, albeit the participant sample is reflective of the overall CCSS population. These data are a benchmark for future research assessing the effects of the rollout of ACA provisions and potential changes in insurance policy. This work should explore whether coverage increases survivors’ access to services yet increases uncovered service costs and explore whether health insurance premiums and cost-sharing increase, which could widen the out-of pocket cost disparities found. Childhood survivors should be counseled on available programs and services to facilitate obtaining affordable coverage and utilize needed health care.
References
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