Childhood Cancer Survivor Study participants' perceptions and knowledge of health insurance coverage

Implications for the Affordable Care Act

Elyse R. Park, Anne C. Kirchhoff, Jennifer P. Zallen, Joel S. Weissman, Hannah Pajolek, Ann C. Mertens, Gregory Armstrong, Leslie L. Robison, Karen Donelan, Christopher J. Recklitis, Lisa R. Diller, Karen A. Kuhlthau

Research output: Contribution to journalArticle

32 Citations (Scopus)

Abstract

Introduction: Childhood cancer survivors face long-term health consequences, and comprehensive health insurance is critical. However, childhood cancer survivors may face barriers in accessing medical services due to being uninsured or underinsured. Little is known about the quality of survivors' health insurance coverage, and improving health insurance within the context of changes mandated by the 2010 Affordable Care Act requires understanding survivors' coverage. The current study explored adult childhood cancer survivors' quality of health insurance coverage. Methods: From 9/09 to 2/10, we conducted in-depth, semistructured qualitative interviews with 39 adult participants from the Childhood Cancer Survivor Study, a cohort of 5-year survivors of cancers diagnosed before age 21. Interviews were recorded and transcribed; content analyses were conducted by two coders (kappa = 0. 88) using NVivo 8. Results: Most insured survivors reported satisfaction with the quality of their coverage; however, they expressed low expectations. Almost half reported annual out-of-pocket costs exceeding $2,000, yet most felt fortunate to simply have coverage. One third of insured survivors had difficulty obtaining coverage, and many had difficulties understanding how to utilize it. Most uninsured survivors minimized their need for care. Worry about future health care costs seemed inevitable among insured and uninsured survivors. Almost all participants lacked knowledge about existing health insurance-related laws. Conclusions and implications for cancer survivors: Insured survivors had low coverage expectations, and uninsured survivors avoided care. Childhood cancer survivors will likely benefit from assistance in how to access and utilize the new health care reform provisions (e. g., Medicaid expansion, expansion of parents' insurance, and mandatory primary care coverage).

Original languageEnglish (US)
Pages (from-to)251-259
Number of pages9
JournalJournal of Cancer Survivorship
Volume6
Issue number3
DOIs
StatePublished - Jul 1 2012

Fingerprint

Patient Protection and Affordable Care Act
Insurance Coverage
Health Insurance
Survivors
Neoplasms
Major Medical Insurance
Interviews
Health Care Reform
Medicaid

All Science Journal Classification (ASJC) codes

  • Oncology
  • Oncology(nursing)

Cite this

Childhood Cancer Survivor Study participants' perceptions and knowledge of health insurance coverage : Implications for the Affordable Care Act. / Park, Elyse R.; Kirchhoff, Anne C.; Zallen, Jennifer P.; Weissman, Joel S.; Pajolek, Hannah; Mertens, Ann C.; Armstrong, Gregory; Robison, Leslie L.; Donelan, Karen; Recklitis, Christopher J.; Diller, Lisa R.; Kuhlthau, Karen A.

In: Journal of Cancer Survivorship, Vol. 6, No. 3, 01.07.2012, p. 251-259.

Research output: Contribution to journalArticle

Park, ER, Kirchhoff, AC, Zallen, JP, Weissman, JS, Pajolek, H, Mertens, AC, Armstrong, G, Robison, LL, Donelan, K, Recklitis, CJ, Diller, LR & Kuhlthau, KA 2012, 'Childhood Cancer Survivor Study participants' perceptions and knowledge of health insurance coverage: Implications for the Affordable Care Act', Journal of Cancer Survivorship, vol. 6, no. 3, pp. 251-259. https://doi.org/10.1007/s11764-012-0225-y
Park, Elyse R. ; Kirchhoff, Anne C. ; Zallen, Jennifer P. ; Weissman, Joel S. ; Pajolek, Hannah ; Mertens, Ann C. ; Armstrong, Gregory ; Robison, Leslie L. ; Donelan, Karen ; Recklitis, Christopher J. ; Diller, Lisa R. ; Kuhlthau, Karen A. / Childhood Cancer Survivor Study participants' perceptions and knowledge of health insurance coverage : Implications for the Affordable Care Act. In: Journal of Cancer Survivorship. 2012 ; Vol. 6, No. 3. pp. 251-259.
@article{46ba9833245144c98681c92e04f6fc89,
title = "Childhood Cancer Survivor Study participants' perceptions and knowledge of health insurance coverage: Implications for the Affordable Care Act",
abstract = "Introduction: Childhood cancer survivors face long-term health consequences, and comprehensive health insurance is critical. However, childhood cancer survivors may face barriers in accessing medical services due to being uninsured or underinsured. Little is known about the quality of survivors' health insurance coverage, and improving health insurance within the context of changes mandated by the 2010 Affordable Care Act requires understanding survivors' coverage. The current study explored adult childhood cancer survivors' quality of health insurance coverage. Methods: From 9/09 to 2/10, we conducted in-depth, semistructured qualitative interviews with 39 adult participants from the Childhood Cancer Survivor Study, a cohort of 5-year survivors of cancers diagnosed before age 21. Interviews were recorded and transcribed; content analyses were conducted by two coders (kappa = 0. 88) using NVivo 8. Results: Most insured survivors reported satisfaction with the quality of their coverage; however, they expressed low expectations. Almost half reported annual out-of-pocket costs exceeding $2,000, yet most felt fortunate to simply have coverage. One third of insured survivors had difficulty obtaining coverage, and many had difficulties understanding how to utilize it. Most uninsured survivors minimized their need for care. Worry about future health care costs seemed inevitable among insured and uninsured survivors. Almost all participants lacked knowledge about existing health insurance-related laws. Conclusions and implications for cancer survivors: Insured survivors had low coverage expectations, and uninsured survivors avoided care. Childhood cancer survivors will likely benefit from assistance in how to access and utilize the new health care reform provisions (e. g., Medicaid expansion, expansion of parents' insurance, and mandatory primary care coverage).",
author = "Park, {Elyse R.} and Kirchhoff, {Anne C.} and Zallen, {Jennifer P.} and Weissman, {Joel S.} and Hannah Pajolek and Mertens, {Ann C.} and Gregory Armstrong and Robison, {Leslie L.} and Karen Donelan and Recklitis, {Christopher J.} and Diller, {Lisa R.} and Kuhlthau, {Karen A.}",
year = "2012",
month = "7",
day = "1",
doi = "10.1007/s11764-012-0225-y",
language = "English (US)",
volume = "6",
pages = "251--259",
journal = "Journal of Cancer Survivorship",
issn = "1932-2259",
publisher = "Springer New York",
number = "3",

}

TY - JOUR

T1 - Childhood Cancer Survivor Study participants' perceptions and knowledge of health insurance coverage

T2 - Implications for the Affordable Care Act

AU - Park, Elyse R.

AU - Kirchhoff, Anne C.

AU - Zallen, Jennifer P.

AU - Weissman, Joel S.

AU - Pajolek, Hannah

AU - Mertens, Ann C.

AU - Armstrong, Gregory

AU - Robison, Leslie L.

AU - Donelan, Karen

AU - Recklitis, Christopher J.

AU - Diller, Lisa R.

AU - Kuhlthau, Karen A.

PY - 2012/7/1

Y1 - 2012/7/1

N2 - Introduction: Childhood cancer survivors face long-term health consequences, and comprehensive health insurance is critical. However, childhood cancer survivors may face barriers in accessing medical services due to being uninsured or underinsured. Little is known about the quality of survivors' health insurance coverage, and improving health insurance within the context of changes mandated by the 2010 Affordable Care Act requires understanding survivors' coverage. The current study explored adult childhood cancer survivors' quality of health insurance coverage. Methods: From 9/09 to 2/10, we conducted in-depth, semistructured qualitative interviews with 39 adult participants from the Childhood Cancer Survivor Study, a cohort of 5-year survivors of cancers diagnosed before age 21. Interviews were recorded and transcribed; content analyses were conducted by two coders (kappa = 0. 88) using NVivo 8. Results: Most insured survivors reported satisfaction with the quality of their coverage; however, they expressed low expectations. Almost half reported annual out-of-pocket costs exceeding $2,000, yet most felt fortunate to simply have coverage. One third of insured survivors had difficulty obtaining coverage, and many had difficulties understanding how to utilize it. Most uninsured survivors minimized their need for care. Worry about future health care costs seemed inevitable among insured and uninsured survivors. Almost all participants lacked knowledge about existing health insurance-related laws. Conclusions and implications for cancer survivors: Insured survivors had low coverage expectations, and uninsured survivors avoided care. Childhood cancer survivors will likely benefit from assistance in how to access and utilize the new health care reform provisions (e. g., Medicaid expansion, expansion of parents' insurance, and mandatory primary care coverage).

AB - Introduction: Childhood cancer survivors face long-term health consequences, and comprehensive health insurance is critical. However, childhood cancer survivors may face barriers in accessing medical services due to being uninsured or underinsured. Little is known about the quality of survivors' health insurance coverage, and improving health insurance within the context of changes mandated by the 2010 Affordable Care Act requires understanding survivors' coverage. The current study explored adult childhood cancer survivors' quality of health insurance coverage. Methods: From 9/09 to 2/10, we conducted in-depth, semistructured qualitative interviews with 39 adult participants from the Childhood Cancer Survivor Study, a cohort of 5-year survivors of cancers diagnosed before age 21. Interviews were recorded and transcribed; content analyses were conducted by two coders (kappa = 0. 88) using NVivo 8. Results: Most insured survivors reported satisfaction with the quality of their coverage; however, they expressed low expectations. Almost half reported annual out-of-pocket costs exceeding $2,000, yet most felt fortunate to simply have coverage. One third of insured survivors had difficulty obtaining coverage, and many had difficulties understanding how to utilize it. Most uninsured survivors minimized their need for care. Worry about future health care costs seemed inevitable among insured and uninsured survivors. Almost all participants lacked knowledge about existing health insurance-related laws. Conclusions and implications for cancer survivors: Insured survivors had low coverage expectations, and uninsured survivors avoided care. Childhood cancer survivors will likely benefit from assistance in how to access and utilize the new health care reform provisions (e. g., Medicaid expansion, expansion of parents' insurance, and mandatory primary care coverage).

UR - http://www.scopus.com/inward/record.url?scp=84865988109&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84865988109&partnerID=8YFLogxK

U2 - 10.1007/s11764-012-0225-y

DO - 10.1007/s11764-012-0225-y

M3 - Article

VL - 6

SP - 251

EP - 259

JO - Journal of Cancer Survivorship

JF - Journal of Cancer Survivorship

SN - 1932-2259

IS - 3

ER -