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February 08, 2023Research Article

Association of Employment Status With Symptom Burden and Health-Related Quality of Life in People Living With Primary CNS Tumors

View ORCID ProfileHeather E. Leeper, Elizabeth Vera, Alexa Christ, Alvina Acquaye, Nicole Briceno, Anna Choi, Ewa Grajkowska, Varna Jammula, Jason Levine, Matthew Lindsley, Jennifer Reyes, Kayla N. Roche, James L. Rogers, Michael Timmer, Lisa Boris, Eric Burton, Nicole Lollo, Marissa Panzer, Marta Penas-Prado, Valentina Pillai, Lily Polskin, Brett J. Theeler, Jing Wu, Mark R. Gilbert, Terri S Armstrong
First published February 8, 2023, DOI: https://doi.org/10.1212/WNL.0000000000207082
Heather E. Leeper
1Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
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  • ORCID record for Heather E. Leeper
  • For correspondence: heatherleeper@gmail.com
Elizabeth Vera
1Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
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Alexa Christ
1Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
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Alvina Acquaye
1Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
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Nicole Briceno
1Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
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Anna Choi
1Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
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Ewa Grajkowska
1Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
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Varna Jammula
1Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
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Jason Levine
2Office of Information Technology, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
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Matthew Lindsley
1Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
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Jennifer Reyes
1Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
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Kayla N. Roche
1Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
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James L. Rogers
1Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
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Michael Timmer
1Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
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Lisa Boris
3Leidos Biomedical Research, Frederick National Laboratory for Cancer Research Sponsored by the National Cancer Institute, Frederick, Maryland, USA
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Eric Burton
1Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
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Nicole Lollo
4Concentric Methods, LLC, Manassas, Virginia, USA; 5. Department of Neurology, Uniformed Services University of the Health Sciences, Bethesda, Maryland, USA
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Marissa Panzer
3Leidos Biomedical Research, Frederick National Laboratory for Cancer Research Sponsored by the National Cancer Institute, Frederick, Maryland, USA
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Marta Penas-Prado
1Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
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Valentina Pillai
1Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
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Lily Polskin
1Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
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Brett J. Theeler
1Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
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Jing Wu
1Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
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Mark R. Gilbert
1Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
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Terri S Armstrong
1Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
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Citation
Association of Employment Status With Symptom Burden and Health-Related Quality of Life in People Living With Primary CNS Tumors
Heather E. Leeper, Elizabeth Vera, Alexa Christ, Alvina Acquaye, Nicole Briceno, Anna Choi, Ewa Grajkowska, Varna Jammula, Jason Levine, Matthew Lindsley, Jennifer Reyes, Kayla N. Roche, James L. Rogers, Michael Timmer, Lisa Boris, Eric Burton, Nicole Lollo, Marissa Panzer, Marta Penas-Prado, Valentina Pillai, Lily Polskin, Brett J. Theeler, Jing Wu, Mark R. Gilbert, Terri S Armstrong
Neurology Feb 2023, 10.1212/WNL.0000000000207082; DOI: 10.1212/WNL.0000000000207082

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Abstract

Background and Objectives: Financial toxicity significantly impacts many patients, especially cancer survivors. We evaluated the association of unemployment as a major contributor to financial toxicity with patient-reported outcomes (PROs) assessing multiple illness experience domains in a primary CNS tumor (PCNST) cohort.

Methods: Patient and disease characteristics and PROs measuring symptom burden, interference, psychologic distress, functional impairment, and health-related quality of life (HRQOL) from participants enrolled an IRB-approved observational study at the US National Institutes of Health’s Neuro-Oncology Branch were collected between 9/2016-12/2019. Descriptive statistics, tests of association, and comparison of group means were used to describe and evaluate PROs.

Results: Of the 277 participants diagnosed with a PCNST, 57% were male and 43% were female. Participants reported their race as White, non-Hispanic (78%); White, Hispanic/Latino (9%); Asian (7%); Black (4%); Native Hawaiian/Pacific Islander (1%); other (2%) with 8% missing. The median age of the overall cohort was 45 years (range 18-74). Hispanic participants in the overall sample were 2.3 times more likely, and in the brain tumor group 3.2 times more likely, to report unemployment (p=.043, OR=2.3, 95% CI [1.0, 5.4] and p=.008, OR=3.2, 95% CI [1.3, 7.9], respectively). The 77 (28%) individuals unemployed due to tumor reported more functional impairment with walking, washing, dressing, performing usual activities, and reduced HRQOL (p<.001). More unemployed participants in the total sample reported moderate-to-severe depressive symptoms (25%) than those employed (8%) (X2(1)=13.9, p<.001, OR=3.7, 95% CI [1.8, 7.8]) and more moderate-to-severe anxiety symptoms (30%) than those employed (15%) (X2(1)=7.8, p=.005, OR=2.4, 95% CI [1.3, 4.5]). Unemployed brain tumor participants reported on average 3 more symptoms as moderate-to-severe compared to those employed (t(83)=-4.0, 95% CI Embedded Imagedifference [-5, -2], p<.001, Hedge’s g=.70).

Discussion: Being unemployed due to a PCNST strongly correlated with high symptom burden, functional impairment, psychological distress and reduced HRQOL which may be impediments to returning to work that warrant intervention. Lack of employer-based health insurance and reduced earnings are financial sequelae of unemployment superimposed on the physical, social, and cognitive effects of living with a PCNST. Innovations to screen for and address financial toxicity and its contributing factors are needed.

  • Received June 22, 2022.
  • Accepted in final form January 6, 2023.
  • Written work prepared by employees of the Federal Government as part of their official duties is, under the U.S. Copyright Act, a “work of the United States Government” for which copyright protection under Title 17 of the United States Code is not available. As such, copyright does not extend to the contributions of employees of the Federal Government.

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