Abstract
It is unknown how common job lock (i.e., staying at job to maintain health insurance) remains among childhood cancer survivors after Affordable Care Act (ACA) implementation in 2010. We examined prevalence of and factors associated with job lock using a cross-sectional survey from the Childhood Cancer Survivor Study (3,503 survivors; 942 siblings). Survivor, spousal, and any survivor/spouse job lock were more frequently reported by survivors than siblings. Survivor job lock/any job lock were associated with older age, low income, severe chronic conditions, and debt/inability to pay debt. Job lock remains more common among survivors than siblings after ACA implementation.
Brief Report
Background
Currently, over 85% of children diagnosed with cancer will become five-year survivors. Survivors often receive multimodal therapy that places them at risk for long-term adverse health conditions, which can affect their ability to work as adults and access to employer-sponsored health insurance.1,2 Due to the need to maintain health insurance, job lock (i.e., inability to leave a job or seek promotion due to the fear of losing health insurance coverage) was common among childhood cancer survivors prior to the 2010 Patient Protection and Affordable Care Act (ACA).3
The ACA increased access to health insurance across the United States and is still in effect today, with over 20 million individuals gaining coverage.4,5 The ACA included provisions that decreased reliance on employer-sponsored coverage, the most common type of coverage for working age adults.6 Provisions include health insurance marketplaces (which created coverage options outside of employment) and Medicaid income eligibility expansion in certain states, both of which substantially expanded access to care.4,7
The ACA could reduce job lock prevalence among vulnerable populations, such as long-term survivors of childhood cancer. We used the Childhood Cancer Survivor Study (CCSS) cohort to assess the prevalence of job lock, as well as sociodemographic, treatment, and economic factors associated with job lock, among survivors and their spouses, compared to siblings.
Methods
The CCSS is a multi-institutional retrospective cohort study with longitudinal follow-up of survivors of childhood cancer and a randomly selected sibling sample among 30 U.S. sites. Survivors were diagnosed between 1970–1999 before 21 years of age and survived at least five years after diagnosis. The cohort has abstracted medical records data and participates in survey-based follow-up every two to three years, described elsewhere.8,9 Institutional Review Boards at each of the sites approved the study.
Between 2017–2019, 4,030 survivors and 987 siblings completed a survey that included items assessing job lock. The analytic sample was restricted to 3,503 (86.9%) survivors and 942 (95.4%) siblings who were employed within the past 2 years or that their spouse worked at some point.
Job lock was measured among participants employed in the last 2 years with the question, “In the past 2 years, did you ever stay at a job in part because you were concerned about losing your health insurance? (Yes/No)” Regardless of working status, all participants were also asked about job lock experienced by their spouse or significant other: “Did your spouse or significant other ever stay at a job in part because he/she was concerned about losing health insurance for the family? (Yes/No)”. Outcomes were for both survivors and siblings: 1) participant-reported job lock, 3) spousal job lock, and 3) any job lock (i.e., a combined category of participant or spousal job lock).
Additional data included age at survey and diagnosis, sex, race and ethnicity, cancer treatment, Common Terminology Criteria for Adverse Events (CTCAE)-graded chronic health conditions,10 household income, debt, inability to pay debt, and bankruptcy history from 2017–2019 and other surveys and medical records. Residence in a Medicaid expansion state at the 2017–2019 survey was based on zip code.
Descriptive statistics compared sociodemographic and economic characteristics between survivors and siblings. We fit multivariable logistic regression models for the three job lock outcomes between survivors and siblings, with the generalized estimating equation to account for potential within-family correlation. Among survivors, multivariable logistic regression models evaluated sociodemographic, clinical, and economic characteristics associated with the outcomes; variables were selected based on associations of p<0.2 in univariate comparisons. All analyses included sample weights. Statistical significance was set at α<0.05. Analyses were conducted in SAS 9.4.
Results
Survivor and sibling demographic characteristics were generally similar (Table 1). Most participants (>88%) had worked for pay within the past 2 years. Siblings were older at the time of survey and reported having a severe/life-threatening chronic health condition less frequently than survivors (14.6% vs. 36.2%). The most common cancer diagnosis was leukemia (40.8%).
Table 1.
Demographic Characteristics of Adult Survivors of Childhood Cancer and Siblings
| Survivors N=3503 |
Siblings N=942 |
|||
|---|---|---|---|---|
|
| ||||
| N | % | N | % | |
|
| ||||
| Working for Pay within the Past 2 Years | ||||
| Yes | 3110 | 89.9 | 832 | 88.3 |
| No | 386 | 10.1 | 110 | 11.7 |
|
| ||||
| Age at Survey | ||||
| 18-25 | 236 | 9.4 | 30 | 3.2 |
| 26-29 | 316 | 11.5 | 24 | 2.5 |
| 30-34 | 543 | 18.1 | 85 | 9.0 |
| 35-39 | 721 | 19.3 | 139 | 14.8 |
| 40-44 | 615 | 15.4 | 165 | 17.5 |
| 45-49 | 503 | 12.4 | 159 | 16.9 |
| 50+ | 569 | 14.0 | 340 | 36.1 |
|
| ||||
| Sex | ||||
| Male | 1717 | 49.0 | 402 | 42.7 |
| Female | 1786 | 51.0 | 540 | 57.3 |
|
| ||||
| Hispanic | ||||
| Yes | 220 | 6.7 | 28 | 3.0 |
| No | 3203 | 91.3 | 874 | 92.8 |
| Unknown | 80 | 2.0 | 40 | 4.2 |
|
| ||||
| Race | ||||
| White | 3186 | 90.0 | 868 | 92.1 |
| Black | 151 | 4.5 | 14 | 1.5 |
| American Indian/Alaska Native | 14 | 0.4 | 3 | 0.3 |
| Asian/Pacific Islander | 45 | 1.7 | 8 | 0.8 |
| Other | 93 | 3.0 | 13 | 1.4 |
| Unknown | 14 | 0.3 | 36 | 3.8 |
|
| ||||
| Medicaid Expansion State Resident | ||||
| Yes | 2727 | 78.8 | 731 | 80.2 |
| No | 714 | 21.2 | 181 | 19.8 |
|
| ||||
| Debt | ||||
| No | 988 | 28.8 | 284 | 30.5 |
| Yes | 2489 | 71.2 | 648 | 69.5 |
|
| ||||
| Inability to Pay Debt | ||||
| No | 2496 | 72.3 | 731 | 78.5 |
| Yes | 972 | 27.7 | 200 | 21.5 |
|
| ||||
| Bankruptcy | ||||
| No | 3206 | 92.9 | 862 | 92.6 |
| Yes | 264 | 7.1 | 69 | 7.4 |
|
| ||||
| Household Income | ||||
| <$20,000 | 218 | 7.0 | 26 | 2.8 |
| $20,000-$39,999 | 386 | 11.7 | 61 | 6.5 |
| $40,000-$59,999 | 420 | 11.6 | 93 | 9.9 |
| $60,000-$79,999 | 421 | 11.8 | 89 | 9.4 |
| $80,000-$99,999 | 397 | 11.1 | 119 | 12.6 |
| Over $100,000 | 1147 | 31.5 | 458 | 48.6 |
| Missing | 514 | 15.3 | 96 | 10.2 |
|
| ||||
| Insurance Type | ||||
| No insurance | 256 | 7.7 | 41 | 4.4 |
| Private | 2799 | 79.4 | 837 | 88.9 |
| Public | 381 | 10.5 | 50 | 5.3 |
| Unknown insurance type | 67 | 2.4 | 14 | 1.5 |
|
| ||||
| Chronic Health Conditions | ||||
| None | 585 | 18.9 | 289 | 30.7 |
| Grade 1-2 | 1553 | 44.9 | 515 | 54.7 |
| Grade 3-4 | 1365 | 36.2 | 138 | 14.6 |
|
| ||||
| Age at Diagnosis | ||||
| 0-4 | 1327 | 41.1 | -- | -- |
| 5-9 | 785 | 23.5 | -- | -- |
| 10-14 | 805 | 20.8 | -- | -- |
| 15+ | 586 | 14.6 | -- | -- |
|
| ||||
| Diagnosis | ||||
| Leukemia | 1094 | 40.8 | -- | -- |
| Central Nervous System Malignancy | 492 | 12.1 | -- | -- |
| Hodgkin Lymphoma | 447 | 11.0 | -- | -- |
| Non-Hodgkin Lymphoma | 311 | 7.6 | -- | -- |
| Kidney (Wilms) | 362 | 8.9 | -- | -- |
| Neuroblastoma | 254 | 6.2 | -- | -- |
| Soft tissue sarcoma | 240 | 5.9 | -- | -- |
| Bone cancer | 303 | 7.4 | -- | -- |
|
| ||||
| Any Radiation | ||||
| Yes | 1767 | 49.1 | -- | -- |
| No | 1549 | 50.9 | -- | -- |
|
| ||||
| Chest Radiation | ||||
| Yes | 750 | 20.7 | -- | -- |
| No | 2490 | 79.3 | -- | -- |
|
| ||||
| Abdominal/Pelvic Radiation | ||||
| Yes | 716 | 19.8 | -- | -- |
| No | 2525 | 80.2 | -- | -- |
|
| ||||
| Limb (Arm or Leg) Radiation | ||||
| Yes | 160 | 4.6 | -- | -- |
| No | 3080 | 95.4 | -- | -- |
|
| ||||
| Total Body Irradiation | ||||
| Yes | 77 | 2.4 | -- | -- |
| No | 3163 | 97.6 | -- | -- |
|
| ||||
| Any Surgery | ||||
| Yes | 2582 | 69.7 | -- | -- |
| No | 730 | 30.3 | -- | -- |
|
| ||||
| Any Chemotherapy | ||||
| Yes | 2767 | 85.9 | -- | -- |
| No | 547 | 14.1 | -- | -- |
|
| ||||
| Received Alkylating Agents | ||||
| Yes | 1762 | 54.4 | -- | -- |
| No | 1535 | 45.6 | -- | -- |
|
| ||||
| Anthracycline Cumulative Dose | ||||
| None | 1624 | 45.8 | -- | -- |
| 1-299 mg/m2 | 1157 | 42.3 | -- | -- |
| 300+ mg/m2 | 423 | 11.9 | -- | -- |
Reported percentages were weighted to account for under-sampling of ALL survivors in the latter recruitment era (1987-1999). Percentages are based upon the total with available data for each variable. Debt includes any type of debt. Bankruptcy can have occurred at any time in the past.
Job lock was reported by 14.7% of survivors (95%CI:13.5%–15.8%) compared to 12.9% of siblings (95%CI:10.6%–15.2%). Spousal job lock was reported by 16.5% of survivors (95%CI:15.1%–17.8%) compared to 14.8% of siblings (95% CI:12.3%–17.3%). Any job lock was reported by 21.8% of survivors (95% CI:20.5%–23.1%) compared to 20.0% of siblings (95%CI:17.4%–22.5%; Supplemental Figure). When adjusting for age at survey, sex, and race and ethnicity, debt, inability to pay debt, and bankruptcy, survivors were significantly more likely than siblings to report job lock for themselves (OR=1.5, 95%CI 1.2–1.9), their spouse (OR=1.4, 95%CI 1.1–1.7), and any job lock (OR=1.4, 95%CI 1.2–1.7; Supplemental Figure).
Among survivors, all age groups 26 years or older (vs. 18–25 years) were more likely to report job lock (Table 2). Female survivors had increased odds of spousal job lock compared to male survivors. Household incomes between $20,000–59,999 (vs. <$20,000) were associated with an increased likelihood of survivor job lock. Few treatment factors were statistically significant; however, higher chronic health condition grades were associated with an increased odds of survivor or spousal job lock. Debt-related factors were also associated with an increased odds of job lock for survivors and spouses (Table 2).
Table 2:
Adjusted Odds Ratios and 95% CI of Factors Associated with Survivor or Spouse Job Lock among Childhood Cancer Survivors Post ACA Implementation
| Survivor | Spouse | Any (Survivor or Spouse) | ||||
|---|---|---|---|---|---|---|
|
|
|
|
||||
| OR (95% CI) | P | OR (95% CI) | P | OR (95% CI) | P | |
|
| ||||||
| Age at survey (survivors) | ||||||
| 18-25 | Ref | Ref | Ref | |||
| 26-29 | 3.0 (0.9 - 10.2) | 0.08 | 0.8 (0.3 - 2.3) | 0.70 | 1.6 (0.7 - 3.6) | 0.25 |
| 30-34 | 3.8 (1.1 - 12.9) | 0.03 | 1.2 (0.5 - 3.2) | 0.65 | 2.6 (1.2 - 5.5) | 0.02 |
| 35-39 | 3.9 (1.2 - 12.9) | 0.03 | 1.2 (0.5 - 2.9) | 0.76 | 2.6 (1.2 - 5.5) | 0.01 |
| 40-44 | 5.2 (1.6 - 17.3) | 0.007 | 1.2 (0.5 - 3.2) | 0.65 | 3.5 (1.6 - 7.4) | 0.001 |
| 45-49 | 4.0 (1.2 - 13.5) | 0.03 | 1.3 (0.5 - 3.4) | 0.56 | 2.8 (1.3 - 6.0) | 0.008 |
| 50+ | 6.0 (1.8 - 20.6) | 0.004 | 1.4 (0.6 - 3.7) | 0.46 | 3.6 (1.6 - 7.7) | 0.001 |
|
| ||||||
| Sex (survivors) | ||||||
| Male | Ref | Ref | Ref | |||
| Female | 1.1 (0.9 - 1.4) | 0.39 | 1.5 (1.2 - 1.9) | 0.002 | 1.2 (1.0 - 1.5) | 0.06 |
|
| ||||||
| Age at diagnosis | ||||||
| 0-4 | Ref | Ref | Ref | |||
| 5-9 | 1.0 (0.7 - 1.4) | 0.94 | 1.1 (0.8 - 1.6) | 0.55 | 1.0 (0.7 - 1.3) | 0.81 |
| 10-14 | 1.2 (0.8 - 1.6) | 0.39 | 1.2 (0.8 - 1.7) | 0.44 | 1.1 (0.8 - 1.4) | 0.62 |
| 15+ | 1.3 (0.9 - 1.9) | 0.25 | 1.4 (0.9 - 2.0) | 0.14 | 1.2 (0.9 - 1.6) | 0.34 |
|
| ||||||
| Household Income at survey | ||||||
| <$20,000 | Ref | Ref | Ref | |||
| $20,000-$39,999 | 2.5 (1.3 - 4.8) | 0.004 | 1.1 (0.5 - 2.7) | 0.77 | 2.0 (1.1 - 3.4) | 0.02 |
| $40,000-$59,999 | 2.4 (1.3 - 4.4) | 0.005 | 1.1 (0.5 - 2.5) | 0.90 | 2.0 (1.2 - 3.5) | 0.010 |
| $60,000-$79,999 | 1.3 (0.7 - 2.4) | 0.46 | 0.9 (0.4 - 2.2) | 0.88 | 1.6 (0.9 - 2.7) | 0.10 |
| $80,000-$99,999 | 1.0 (0.5 - 1.9) | 0.97 | 0.8 (0.4 - 2.0) | 0.68 | 1.2 (0.7 - 2.1) | 0.53 |
| over $100,000 | 0.9 (0.5 - 1.6) | 0.69 | 0.7 (0.3 - 1.5) | 0.32 | 1.1 (0.6 - 1.8) | 0.78 |
| Missing | 1.0 (0.5 - 1.9) | 0.94 | 0.7 (0.3 - 1.6) | 0.38 | 0.8 (0.5 - 1.5) | 0.56 |
|
| ||||||
| Chest Radiation or TBI | ||||||
| No | Ref | Ref | Ref | |||
| Yes | 1.0 (0.7 - 1.4) | 0.94 | 1.2 (0.9 - 1.7) | 0.23 | 1.2 (0.9 - 1.5) | 0.25 |
|
| ||||||
| Abdominal/Pelvic Radiation or TBI | ||||||
| No | Ref | Ref | Ref | |||
| Yes | 1.1 (0.8 - 1.6) | 0.53 | 1.0 (0.7 - 1.4) | 0.92 | 1.0 (0.8 - 1.3) | 0.99 |
|
| ||||||
| Any Surgery | ||||||
| No | Ref | Ref | Ref | |||
| Yes | 0.9 (0.7 - 1.3) | 0.66 | 0.9 (0.7 - 1.3) | 0.71 | 0.9 (0.7 - 1.2) | 0.56 |
|
| ||||||
| Anthracycline Dose | ||||||
| None | Ref | Ref | Ref | |||
| 1-299 mg/m2 | 0.7 (0.5 - 0.9) | 0.008 | 0.9 (0.7 - 1.2) | 0.44 | 0.8 (0.6 - 1.0) | 0.04 |
| 300+ mg/m2 | 0.9 (0.7 - 1.4) | 0.76 | 0.9 (0.7 - 1.3) | 0.72 | 0.9 (0.7 - 1.2) | 0.65 |
|
| ||||||
| Chronic health conditions at 2017-2019 | ||||||
| None | Ref | Ref | Ref | |||
| Grade 1-2 | 1.5 (1.0 - 2.4) | 0.05 | 1.8 (1.1 - 2.9) | 0.03 | 1.5 (1.1 - 2.2) | 0.02 |
| Grade 3-4 | 2.2 (1.4 - 3.5) | <.001 | 2.6 (1.5 - 4.3) | <.001 | 2.3 (1.6 - 3.3) | <.001 |
|
| ||||||
| Medicaid Expansion State Resident | ||||||
| No | Ref | Ref | Ref | |||
| Yes | 0.9 (0.7 - 1.2) | 0.52 | 1.1 (0.8 - 1.5) | 0.69 | 0.9 (0.7 - 1.2) | 0.44 |
|
| ||||||
| Debt | ||||||
| No | Ref | Ref | Ref | |||
| Yes | 1.4 (1.0 - 2.0) | 0.06 | 1.5 (1.1 - 2.2) | 0.01 | 1.6 (1.2 - 2.1) | <.001 |
|
| ||||||
| Inability to Pay Debt | ||||||
| No | Ref | Ref | Ref | |||
| Yes | 1.3 (1.0 - 1.8) | 0.05 | 1.5 (1.1 - 2.0) | 0.02 | 1.5 (1.1 - 1.9) | 0.002 |
|
| ||||||
| Bankruptcy | ||||||
| No | Ref | Ref | Ref | |||
| Yes | 0.8 (0.5 - 1.2) | 0.28 | 1.0 (0.6 - 1.6) | 0.99 | 0.9 (0.6 - 1.2) | 0.46 |
TBI: Total Body Irradiation. Debt includes any type of debt. Bankruptcy can have occurred at any time in the past.
Discussion
In this report from a nationwide cohort of long-term childhood cancer survivors and their siblings, 21.8% of survivors reported job lock for themselves or their spouse in comparison to 20.0% of siblings, which was maintained in multivariable analyses. In our earlier study conducted prior to ACA implementation (2011–2012), job lock was more prevalent among survivors (23.2%) than in this current report (14.7%).3 The ACA’s expanded insurance options may have positively impacted survivors’ ability to leave jobs or seek promotion related to their ability to maintain health insurance coverage. Notably, the earlier study was limited to survivors who were currently employed full-time (rather than working for pay within the past 2 years) and represented a slightly older sample, as it did not include the CCSS expansion cohort (i.e., a younger cohort recruited to CCSS to enrich racial and ethnic, disease, and treatment diversity),8 which may affect job lock perceptions.3
Further, 16.5% of survivors reported spouse job lock, highlighting the overall impact of job lock on families. In a recent study in a nationally representative sample of adult cancer survivors, 10.7% of survivors reported job lock for spouses.11 Future inquiry should investigate differences in the burden of maintaining health insurance within families of cancer survivors. Our findings underscore the need for interventions to minimize adverse financial outcomes including affordability of health insurance coverage among childhood cancer survivors, which may help mitigate job lock.12–14 Chronic conditions caused by late effects of treatment have been consistently associated with poor economic outcomes, including job lock, among childhood cancer survivors,1–3 and are an important area for intervention. However, other treatment factors associated with reduced job lock such as lower dose anthracycline have not previously been documented and should be studied further.
Our results are subject to general limitations of survey data, including recall bias and non-response bias. Causality of the ACA on job lock could not be established. Finally, spousal and survivor job lock timeframes differed limiting their comparability.
In more recent years (2017–2019), one in five (21.8%) childhood cancer survivors or their spouses experienced job lock, which suggests that the ACA alone has not eliminated job lock among childhood cancer survivors, and that health system-, policy-, employer- and individual-level interventions are needed to address employment and health insurance challenges.12–14 Future inquiry should investigate the long-term economic and health-related consequences of job lock among childhood cancer survivors and their families.
Supplementary Material
Funding:
This work was supported by the National Cancer Institute (CA55727, G.T. Armstrong, Principal Investigator). Austin R. Waters is supported by the National Cancer Institute’s National Research Service Award sponsored by the Lineberger Comprehensive Cancer Center at the University of North Carolina (T32 CA116339). Support to St. Jude Children’s Research Hospital also provided by the Cancer Center Support (CORE) grant (CA21765, C. Roberts, Principal Investigator), the American Lebanese-Syrian Associated Charities (ALSAC) and American Cancer Society (R.M.C).
Abbreviations
- ACA
Affordable Care Act
- CCSS
Childhood Cancer Survivor Study
- OR
Odds Ratio
- 95%CI
95% Confidence Interval
Footnotes
Conflicts of Interest:
The authors declare that they have no conflicting interests.
Data Availability:
The Childhood Cancer Survivor Study is a US National Cancer Institute funded resource (U24 CA55727) to promote and facilitate research among long-term survivors of cancer diagnosed during childhood and adolescence. CCSS data are publicly available on dbGaP at https://www.ncbi.nlm.nih.gov/gap/ through its accession number phs001327.v2.p1. and on the St Jude Survivorship Portal within the St. Jude Cloud at https://survivorship.stjude.cloud/. In addition, utilization of the CCSS data that leverages the expertise of CCSS Statistical and Survivorship research and resources will be considered on a case-by case basis. For this utilization, a research Application Of Intent followed by an Analysis Concept Proposal must be submitted for evaluation by the CCSS Publications Committee. Users interested in utilizing this resource are encouraged to visit http://ccss.stjude.org. Full analytical data sets associated with CCSS publications since January of 2023 are also available on the St. Jude Survivorship Portal at https://viz.stjude.cloud/community/cancer-survivorship-community~4/publications.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
The Childhood Cancer Survivor Study is a US National Cancer Institute funded resource (U24 CA55727) to promote and facilitate research among long-term survivors of cancer diagnosed during childhood and adolescence. CCSS data are publicly available on dbGaP at https://www.ncbi.nlm.nih.gov/gap/ through its accession number phs001327.v2.p1. and on the St Jude Survivorship Portal within the St. Jude Cloud at https://survivorship.stjude.cloud/. In addition, utilization of the CCSS data that leverages the expertise of CCSS Statistical and Survivorship research and resources will be considered on a case-by case basis. For this utilization, a research Application Of Intent followed by an Analysis Concept Proposal must be submitted for evaluation by the CCSS Publications Committee. Users interested in utilizing this resource are encouraged to visit http://ccss.stjude.org. Full analytical data sets associated with CCSS publications since January of 2023 are also available on the St. Jude Survivorship Portal at https://viz.stjude.cloud/community/cancer-survivorship-community~4/publications.