“Job Lock” Among Long-term Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study

Key Points

Question  What are the associations between “job lock” and a history of childhood cancer?

Findings  In this cross-sectional survey study, almost 1 in 4 of the 394 full-time employed survivors of childhood cancer reported a history of “job lock” (staying at a job to keep work-related health insurance). Job lock was associated with factors including female sex, history of health insurance denial, problems paying medical bills, and a severe, disabling, or life-threatening chronic health condition.

Meaning  The need for insurance coverage may limit childhood cancer survivors’ employment trajectory.

Importance  Childhood cancer survivors may be reluctant to make changes in their employment because of access to health insurance.

Objective  To examine the prevalence of “job lock” (staying at a job to keep work-related health insurance) in a sample drawn from an established, multi-institutional cohort of full-time employed childhood cancer survivors compared with a random sample of siblings and to explore factors associated with job lock among cancer survivors.

Design, Setting, and Participants  Cross-sectional survey of full-time employed adult survivors of childhood cancer and a random sample of siblings derived from a cohort of 25 US pediatric oncology centers.

Exposures  Data collection included sociodemographic factors, insurance coverage, chronic medical conditions, and treatment.

Main Outcomes and Measures  Self-report of job lock and factors associated with job lock.

Results  Among the 522 participants, 394 were cancer survivors (54.5% male) and 128 were siblings (51.5% male). Job lock was reported by 23.2% (95% CI, 18.9%-28.1%) of survivors, compared with 16.9% (95% CI, 11.1%-25.0%) of siblings (P = .16). Job lock was more common among survivors reporting previous health insurance denial (relative risk [RR], 1.60; 95% CI, 1.03-2.52) and problems paying medical bills (RR, 2.43; 95% CI, 1.56-3.80). Among survivors, being female (RR, 1.70; 95% CI, 1.11-2.59; P = .01) and having a severe, disabling, or life-threatening health condition (RR, 1.72; 95% CI, 1.09-2.69; P = .02) were associated with job lock.

Conclusions and Relevance  Job lock is common among long-term childhood cancer survivors who are employed full-time. A survivor’s decision to remain employed at a job in order to maintain health insurance coverage may affect career trajectory, diminish potential earning power, and ultimately impact quality of life.

Among the almost 400 000 survivors of childhood cancer in the United States, 55% are between ages 20 and 59 years, the prime years for labor force participation.¹ As they age, many childhood cancer survivors develop chronic health conditions as a consequence of cancer and its treatment,² which may affect their ability to work. Childhood cancer survivors are less likely to be employed compared with their siblings and healthy controls.^3,4 In addition, employed survivors are more likely to work in lower-income occupations with less access to employee benefits (including health insurance) compared with their siblings.^5,6

Survivors who are employed may be at increased risk for real or perceived “job lock.” Job lock is a term used to describe the self-reported inability of an employee to freely leave a job because of the limited portability of health insurance. In the United States, where the majority of insurance is provided via an employer, job lock may be particularly problematic for individuals with chronic health conditions.⁷ In the past 20 years, legislation has sought to mitigate job lock occurrence. The 1997 Health Insurance Portability and Accountability Act (HIPAA) limited health insurers’ ability to enforce preexisting condition exclusions for insured individuals. HIPAA guaranteed continued employer-sponsored insurance coverage for workers and their families during job transitions.⁸ In 2010, the Patient Protection and Affordable Care Act (ACA) expanded insurance options outside of employment.⁹

A previous qualitative study found that many childhood cancer survivors feared losing their employer-sponsored insurance coverage, which led them to avoid or forgo job changes.¹⁰ In the present study, we sought to quantify the prevalence of self-reported job lock in a sample of full-time employed childhood cancer survivors and their siblings from the Childhood Cancer Survivor Study (CCSS). We examined the association of job lock among survivors with a history of health insurance denial and difficulty paying medical bills, since these concerns may affect survivors’ experiences with job lock. We also examined sociodemographic factors associated with job lock.

The CCSS is a multi-institutional, retrospective cohort study initiated in 1994 with ongoing longitudinal follow-up.¹¹ Eligible participants included cancer survivors diagnosed between 1970 and 1986, younger than 21 years at diagnosis, and alive 5 years after diagnosis. The CCSS includes data about cancer survivors of leukemia, lymphoma, central nervous system malignant neoplasm, Wilms tumor, neuroblastoma, soft-tissue sarcoma, and bone cancers. The original cohort had 14 357 survivors from 26 participating US and Canadian pediatric oncology centers and a cohort of 4023 randomly selected nearest-age siblings. The CCSS protocol was approved by the institutional review boards of St Jude Children’s Research Hospital and the Massachusetts General Hospital/Partners HealthCare.

For the present study, 1101 childhood cancer survivors and 360 siblings were randomly selected by age strata groups from the 25 US institutions. Surveys were completed on paper or via the internet from May 2011 to April 2012.^12,13 The participation rate once known ineligble individuals were removed (ie, deceased, no known contact information) was 71.4% for survivors (698 participants of 978 known eligible individuals) and 64.4% for siblings (210 participants of 326 known eligible individuals). Because part-time employees are often not eligible for employer-sponsored insurance, and thus may not experience job lock, we focused on participants with full-time employment (≥35 h/wk at their main job).

To assess job lock, participants were asked to respond yes, no, or don’t know to the following statement: “Have you ever decided to stay in a job rather than take a new job in order to keep health insurance coverage?” Participants also reported their current insurance status (eg, employer-sponsored insurance, individual, uninsured), marital status, household income, any problems paying medical bills in the past year, or previous denial of health insurance coverage. Data on other sociodemographic, medical, and cancer-related factors were determined from CCSS baseline and follow-up surveys.¹⁴

Analyses were weighted based on the age distribution in the CCSS cohort. We used descriptive statistics to compare demographic characteristics between survivors and siblings. We examined the associations between job lock and reports of health insurance denial or problems paying medical bills using a multivariable, generalized linear model. While adjusting for treatment, we fit a separate generalized linear model to assess the associations between sex, age, household income, marital status, and presence of severe, disabling, or life-threatening chronic disease with job lock among survivors. Statistical significance was determined at a 2-sided level with α = .05. Analyses were conducted using Stata, version 13.

Of the 522 study participants employed full-time, 394 were survivors (54.5% male) and 128 were siblings (51.5% male; Table 1). Characteristics of survivors and siblings were similar, although survivors had greater levels of severe, disabling, or life-threatening chronic conditions than did siblings (33.9% vs 17.7%, P < .001). Treatment characteristics of survivors are shown in Table 2.

Survivors reported job lock (23.2%; 95% CI, 18.9%-28.1% vs 16.9%; 95% CI, 11.1%-25.0%; P = .16) more than siblings (Table 3). Job lock was similar among female survivors and siblings (30.1%; 95% CI, 23.8%-38.3% vs 26.7%; 95% CI, 16.7%-39.9%; P = .59); however, among male survivors and siblings, there was a larger, nonsignificant difference (17.0%; 95% CI, 12.1%-23.2% vs 7.6%; 95% CI, 3.2%-17.3%; P = .07; data not shown in tables).

Survivors reported problems paying medical bills (20.1%; 95% CI, 16.1%-24.7% vs 12.9%; 95% CI, 7.9%-20.6%; P = .09; Table 3) more than siblings. Health insurance denial (13.4%; 95% CI, 10.2%-17.5% vs 1.8%; 95% CI, 0.5%-6.2%; P < .001) was significantly more prevalent among survivors. Insurance denial remained significantly more common among survivors compared with siblings (RR, 7.38; 95% CI, 2.01-27.08) when examined in a multivariable generalized linear model adjusted for sociodemographic factors and severe, disabling, or life-threatening chronic disease (data not shown in tables).

In a multivariable regression adjusted for sociodemographic factors, chronic disease, and treatment, we found that 38% of survivors with a previous insurance denial reported job lock compared with 20% of those who never experienced denial (RR, 1.60; 95% CI, 1.03-2.52). Similarly, job lock occurred among 44% of survivors who reported problems paying their medical bills compared with 16% reporting no problems paying medical bills (RR, 2.43; 95% CI, 1.56-3.80).

We then identified sociodemographic characteristics associated with job lock (Table 4). In a multivariable model, female survivors (RR, 1.70; 95% CI, 1.11-2.59) and survivors with a severe, disabling, or life-threatening chronic condition (RR, 1.72; 95% CI, 1.09-2.69) were more likely to report job lock.

We found that nearly 1 in 4 full-time employed survivors of childhood cancer experienced job lock. Survivors who reported a history of health insurance denial and those who had problems paying their medical bills were more likely to report job lock. Also, job lock was more common for female survivors and those survivors with severe, disabling, or life-threatening chronic conditions.

National data from a Kaiser Family Foundation tracking poll indicate that 20% of participants 18 to 64 years old, with at least 1 household member with a preexisting condition, reported staying in a current job rather than taking a new job because of worries about loss of health benefits compared with 9% of participants without preexisting medical conditions.¹⁵ Our findings demonstrate that full-time employed survivors worry about their insurance coverage at levels similar to the general population with preexisting medical conditions, which may subsequently limit their job mobility.

The potential repeal and replacement of the ACA means that survivors who wish to change jobs, reduce work hours, or launch businesses may face fewer and more costly options to purchase insurance.¹⁶ Replacement proposals for the ACA include waiting periods for those with a lapse in medical coverage who have preexisting conditions, which may further impede job mobility for survivors.

Although drawn from an established national cohort of childhood cancer survivors, this analysis has certain limitations. Data relating to job lock are self-reported. In addition, the cohort has a limited number of racial and ethnic minorities, which may limit the generalizability of the findings.

With proposed ACA changes, concern among survivors about coverage denial, insurance costs, and lack of comprehensive insurance will likely increase. A survivor’s decision to remain working in a job because of insurance coverage may affect career trajectory, diminish potential earning power, and ultimately impact quality of life. Future research should investigate how ACA modifications affect relationships among childhood cancer survivors’ health status, their employment decisions, their insurance access, and their income, and how these factors influence their quality of health care.

Corresponding Author: Anne C. Kirchhoff, PhD, MPH, Huntsman Cancer Institute, 2000 Circle of Hope, Salt Lake City, UT 84112 (anne.kirchhoff@hci.utah.edu).

Accepted for Publication: July 30, 2017.

Published Online: October 19, 2017. doi:10.1001/jamaoncol.2017.3372

Author Contributions: Dr Kirchhoff had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Study concept and design: Kirchhoff, Nipp, Kuhlthau, Donelan, Rabin, Oeffinger, Robison, Park.

Acquisition, analysis, or interpretation of data: Kirchhoff, Nipp, Warner, Kuhlthau, Leisenring, Donelan, Perez, Oeffinger, Nathan, Robison, Armstrong, Park.

Drafting of the manuscript: Kirchhoff, Nipp, Warner, Oeffinger, Park.

Critical revision of the manuscript for important intellectual content: All authors.

Statistical analysis: Kirchhoff, Nipp, Kuhlthau, Leisenring, Armstrong, Park.

Obtained funding: Kuhlthau, Armstrong, Park.

Administrative, technical, or material support: Kirchhoff, Warner, Donelan, Rabin, Perez, Oeffinger, Robison.

Study supervision: Kirchhoff, Nipp, Kuhlthau, Park.

Conflict of Interest Disclosures: None reported.

Funding/Support: This work was supported by grant CA55727 from the National Cancer Institute and the LIVESTRONG Foundation. Support to St Jude Children’s Research Hospital was also provided by grant CA21765 from the Cancer Center Support (CORE) and by the American Lebanese-Syrian Associated Charities.

Role of the Funder/Sponsor: The funding organizations had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.