Abstract
Purpose
Because many survivors do not receive recommended follow-up, we sought to characterize patterns and predictors of survivorship clinic attendance in a population-based sample of childhood cancer survivors.
Methods
Using the Connecticut Tumor Registry, we identified all patients diagnosed with cancer at age ≤ 18 years from March 1, 1998 to March 1, 2008, still in follow-up 5 years post-diagnosis, and living <100 miles from Yale. Survivorship clinic attendance, demographics, disease characteristics, and treatment exposures were ascertained. Vital status was confirmed with the National Death Index. The Kaplan-Meier curves and hazard ratios were calculated for survivorship clinic attendance.
Results
Four hundred eighty-nine eligible survivors currently 19.1 ± 6.2 years old were diagnosed at a mean age of 9.1 ± 5.8 years with leukemias/lymphomas (47.2 %), central nervous system tumors (16.4 %), sarcomas (11.2 %), thyroid cancers or melanomas (7.8 %), and other solid tumors (17.4 %). The 10-year post-diagnosis clinic attendance probability was 27.8 % (SE = 2.3) overall, and 36.9 % (SE = 4.4) and 40.8 % (SE = 3.8), in patients with radiation and anthracycline exposure, respectively. In adjusted analysis, patients with insurance (HR = 2.90; p < 0.01 for private and HR = 2.05; p = 0.02 for public assistance), treated with anthracyclines (HR = 3.05; p < 0.01), and treated with radiation (HR = 1.90; p < 0.01) were significantly more likely to attend clinic.
Conclusions
The majority of childhood cancer survivors in our population-based sample had not attended survivorship clinic, even among those with high-risk exposures. Health care access, as measured by insurance status, was an important predictor of clinic attendance.
Implications for Cancer Survivors
More research is needed to clarify the link between insurance status and survivorship care to increase appropriate late effects surveillance in this population.
Similar content being viewed by others
References
Pui C-H, Gajjar AJ, Kane JR, Qaddoumi IA, Pappo AS. Challenging issues in pediatric oncology. Nat Rev Clin Oncol. 2011;8(9):540–9.
Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, Meadows AT, et al. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med. 2006;355(15):1572–82. doi:10.1056/NEJMsa060185.
Landier W, Bhatia S, Eshelman DA, Forte KJ, Sweeney T, Hester AL, et al. Development of risk-based guidelines for pediatric cancer survivors: the Children’s Oncology Group Long-Term Follow-Up Guidelines from the Children’s Oncology Group Late Effects Committee and Nursing Discipline. J Clin Oncol. 2004;22(24):4979–90. doi:10.1200/JCO.2004.11.032.
Friedman DL, Freyer DR, Levitt GA. Models of care for survivors of childhood cancer. Pediatr Blood Cancer. 2006;46(2):159–68. doi:10.1002/pbc.20611.
Kinahan KE, Sanford S, Sadak K, Salsman JM, Koptik KD, Didwania A, editors. Models of cancer survivorship care for adolescents and young adults. Semin Oncol Nurs; 2015: Elsevier.
Eshelman-Kent D, Kinahan KE, Hobbie W, Landier W, Teal S, Friedman D, et al. Cancer survivorship practices, services, and delivery: a report from the Children’s Oncology Group (COG) nursing discipline, adolescent/young adult, and late effects committees. J Cancer Survivorship. 2011;5(4):345–57.
Staba Hogan MJ, Ma X, Kadan‐Lottick NS. New health conditions identified at a regional childhood cancer survivor clinic visit. Pediatr Blood Cancer. 2013;60(4):682–7.
Nathan PC, Greenberg ML, Ness KK, Hudson MM, Mertens AC, Mahoney MC, et al. Medical care in long-term survivors of childhood cancer: a report from the childhood cancer survivor study. J Clin Oncol. 2008;26(27):4401–9.
Barakat LP, Schwartz LA, Szabo MM, Hussey HM, Bunin GR. Factors that contribute to post-treatment follow-up care for survivors of childhood cancer. Journal of Cancer Surviv. 2012;6(2):155–62.
Connelly RR, Campbell PC, Eisenberg H. Central registry of cancer cases in Connecticut. Public Health Rep. 1968;83(5):386.
Google Maps. Google, Google Maps. 2015. https://www.google.com/maps. 2015.
Council FFIE. Geocoding system based on 2013 tract definition of the 2013 US Census for Median Household Income. http://www.ffiec.gov/Geocode/default.aspx. 2014.
Group CO, Group CO. Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers. Arcadia, CA: Children’s Oncology Group; 2008.
Legacy.com. Obitfinder. http://www.legacy.com/ns/obitfinder/obituary-search.aspx. 2014.
Bilgrad R. National Death Index user’s manual. US Department of Health and Human Services, Public Health Service, Centers for Disease Control and Prevention, National Center for Health Statistics; 1995.
Institute S. SAS Institute version 9.4. Cary NC; 2013.
Control CfD, Prevention, Lance Armstrong Foundation. A national action plan for cancer survivorship: advancing public health strategies. Atlanta, Ga: CDC and Lance Armstrong Foundation; 2004.
Stovall E, Greenfield S, Hewitt M. From cancer patient to cancer survivor: lost in transition. National Academies Press; 2005.
Hord J, Feig S, Crouch G, Hale G, Mueller B, Rogers Z, et al. Standards for pediatric cancer centers. Pediatrics. 2014;134(2):410–4.
Bowers DC, Adhikari S, El‐Khashab YM, Gargan L, Oeffinger KC. Survey of long-term follow-up programs in the United States for survivors of childhood brain tumors. Pediatr Blood Cancer. 2009;53(7):1295–301.
McBride ML, Lorenzi MF, Page J, Broemeling A-M, Spinelli JJ, Goddard K, et al. Patterns of physician follow-up among young cancer survivors Report of the Childhood, Adolescent, and Young Adult Cancer Survivors (CAYACS) research program. Can Fam Physician. 2011;57(12):e482–90.
Michel G, Kuehni CE, Rebholz CE, Zimmermann K, Eiser C, Rueegg CS, et al. Can health beliefs help in explaining attendance to follow-up care? The Swiss Childhood Cancer Survivor Study. Psycho-Oncology. 2011;20(10):1034–43.
Oeffinger KC, Mertens AC, Hudson MM, Gurney JG, Casillas J, Chen H, et al. Health care of young adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Ann Fam Med. 2004;2(1):61–70.
Ginsberg JP, Hobbie WL, Carlson CA, Meadows AT. Delivering long-term follow-up care to pediatric cancer survivors: transitional care issues. Pediatr Blood Cancer. 2006;46(2):169–73.
Oeffinger KC, Wallace WHB. Barriers to follow-up care of survivors in the United States and the United Kingdom. Pediatr Blood Cancer. 2006;46(2):135–42.
Cherven B, Mertens A, Meacham LR, Williamson R, Boring C, Wasilewski-Masker K. Knowledge and risk perception of late effects among childhood cancer survivors and parents before and after visiting a childhood cancer survivor clinic. Journal of Pediatric Oncology Nursing. 2014:1043454214532022.
Park ER, Kirchhoff AC, Zallen JP, Weissman JS, Pajolek H, Mertens AC, et al. Childhood Cancer Survivor Study participants’ perceptions and knowledge of health insurance coverage: implications for the Affordable Care Act. J Cancer Surviv. 2012;6(3):251–9.
Park ER, Kirchhoff AC, Perez GK, Leisenring W, Weissman JS, Donelan K, et al. Childhood Cancer Survivor Study participants’ perceptions and understanding of the Affordable Care Act. J Clin Oncol. 2015;33(7):764–72.
Park ER, Li FP, Liu Y, Emmons KM, Ablin A, Robison LL, et al. Health insurance coverage in survivors of childhood cancer: the Childhood Cancer Survivor Study. J Clin Oncol. 2005;23(36):9187–97.
Rodean J. Health insurance coverage of young adults aged 19 to 25: 2008, 2009, and 2011. US Department of Commerce, Economics and Statistics Administration, US Census Bureau; 2012.
Collins SR, Garber T, Robertson R. How the Affordable Care Act is helping young adults stay covered. Issue Brief (Commonwealth Fund). 2011;5:1–26.
Mueller EL, Park ER, Davis MM. What the Affordable Care Act means for survivors of pediatric cancer. J Clin Oncol. 2014;32(7):615–7.
Sommers BD, Buchmueller T, Decker SL, Carey C, Kronick R. The Affordable Care Act has led to significant gains in health insurance and access to care for young adults. Health Aff. 2013;32(1):165–74.
Acknowledgments
This publication was made possible by the Yale University School of Medicine Medical Student Research Fellowship at Yale University School of Medicine. NKL was supported by American Cancer Society RSGHP-10-107-01-CPHPS, Research Scholar Grant in Cancer Control.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
We have no conflicts of interest to disclose. All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. For this type of study formal consent is not required. This article does not contain any studies with animals performed by any of the authors.
Ethical approval
The Yale University Human Investigation Committee approved the current study.
Rights and permissions
About this article
Cite this article
Zheng, D.J., Sint, K., Mitchell, HR. et al. Patterns and predictors of survivorship clinic attendance in a population-based sample of pediatric and young adult childhood cancer survivors. J Cancer Surviv 10, 505–513 (2016). https://doi.org/10.1007/s11764-015-0493-4
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11764-015-0493-4