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. 2017 Mar;6(1):67-73.
doi: 10.1089/jayao.2016.0023. Epub 2016 Aug 16.

Patterns of Loss to Follow-Up Care Among Childhood Cancer Survivors

Denise A Rokitka  1 , Colleen Curtin  2 , Jennifer E Heffler  1 , Michael A Zevon  3 , Kris Attwood  4 , Martin C Mahoney  5   6
Affiliations

Patterns of Loss to Follow-Up Care Among Childhood Cancer Survivors

Denise A Rokitka et al. J Adolesc Young Adult Oncol. 2017 Mar.

Abstract

Purpose: Surveillance for long-term complications related to previous cancer therapy can help diagnose/manage chronic health conditions in childhood cancer survivors and improve survivor quality of life. However, a challenge to delivering long-term care to childhood cancer survivors is loss to follow-up; many patients discontinue care at specialized survivor care centers. The purpose of this study was to examine patterns of loss to follow-up among a cohort of childhood cancer survivors.

Methods: This retrospective study examined follow-up patterns among a nonrandom representative sample of 370 childhood cancer survivors among 1116 patients from a single institution. The median age of patients at diagnosis was 10.2 years (range <1-21). Factors potentially related to follow-up were utilized to evaluate patterns of follow-up across 5-year intervals following completion of active therapy. The association between patient characteristics and follow-up was evaluated using univariate and multivariate binomial regression models.

Results: The probability of follow-up 1-5 years post-treatment was 91.2% (89.7%-92.5%) but dropped to 68.5% (66.2%-70.8%) during years 6-10, 47.7% (45.0%-50.3%) during years 11-15, and continued to steadily decrease over time. Overall, white race, diagnoses at younger ages, patients with lymphomas/leukemias, and decade of diagnosis were each associated with somewhat better rates of follow-up.

Conclusions: These findings highlight the lack of follow-up by adult survivors of childhood cancer with only approximately one-half of patients returning for follow-up 10 years after completion of therapy. Interventions focused on educating both patients and primary care physicians may help to increase long-term follow-up care among this at-risk population.

Keywords: follow-up care; late effects; long-term follow-up; loss to follow-up; survival; survivorship.

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Conflict of interest statement

Dr. D.A.R. has received research support from Hyundai Hope on Wheels and the Roswell Park Cancer Institute Alliance Foundation related to survivorship research among pediatric cancer patients. Drs. D.A.R., M.C.M., K.A., and M.A.Z., and Ms. C.C. and Ms. J.E.H, all declare that they have no conflicts of interest related to the content of this article.

Figures

<b>FIG. 1.</b>
FIG. 1.
Percent of childhood cancer survivors who attended an annual follow-up visit, by years since completion of treatment. Error bars denote the standard error. y-axis—percent of patients completing annual visit. x-axis—years since treatment completion.
See this image and copyright information in PMC

References

    1. Howlader NNA, Krapcho M, Garshell J, et al. (Eds). SEER cancer statistics review, 1975–2012, April 2015 edn. Bethesda, MD: National Cancer Institute; 2014
    1. Casillas J, Oeffinger KC, Hudson MM, et al. . Identifying predictors of longitudinal decline in the level of medical care received by adult survivors of childhood cancer: a report from the childhood cancer survivor study. Health Serv Res. 2015;50(4):1021–42 - PMC - PubMed
    1. Skinner R, Wallace WH, Levitt G. Long-term follow-up of children treated for cancer: why is it necessary, by whom, where and how? Arch Dis Child. 2007;92(3):257–60 - PMC - PubMed
    1. Mertens AC, Liu Q, Neglia JP, et al. . Cause-specific late mortality among 5-year survivors of childhood cancer: the Childhood Cancer Survivor Study. J Natl Cancer Inst. 2008;100(19):1368–79 - PMC - PubMed
    1. Hudson MM, Ness KK, Gurney JG, et al. . Clinical ascertainment of health outcomes among adults treated for childhood cancer. JAMA. 2013;309(22):2371–81 - PMC - PubMed

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