Demographic and Clinical Characteristics Associated with Perceptions of Follow-up Care in 2-Year Survivors of Childhood and Adolescent Cancer Open Access

Abstract

Background: Survivor care focused on screening and prevention can help attenuate childhood cancer survivors' increased risk for morbidity, diminished quality of life, and premature mortality. Patients' perceptions regarding how long they need follow-up care for potential late effects can affect their motivation to attend a survivor clinic.

Methods: Baseline data from patients or parents of patients <18 years enrolled in the Children's Healthcare of Atlanta Childhood, Adolescent, and Young Adult Cancer Survivor Study (CHOA-CAYACSS) were linked with treatment information from medical records. Eligible subjects were ≥ 2 years off-therapy and ≤ 22 years of age at the time of the survey. We used univariate and bivariate analyses to identify demographic and clinical factors associated with patient perceptions of necessary length of follow-up care. The independent effects were then assessed using multivariable logistic regression.

Results: The sample included 655 survivors (53% male, 72% Caucasian, 33% exposed to radiation). Mean age at diagnosis and survey completion were 5.4 years (range: 0-18) and 13.4 years (range: 3-22), respectively. Of these survivors, 85% attended the Cancer Survivor Clinic during the previous twelve months. When evaluating their perceptions, 411 (64%) believed that they needed lifelong follow-up care; 76% stated this follow-up care should be annually. After controlling for gender, race, and age at survey completion, exposure to radiation (adjusted odds ratio (aOR) 1.7, 95% CI 1.0-2.4), time off therapy (aOR 1.1, 95% CI 1.0-1.5), and preference to receive follow-up care from a cancer survivor program (aOR 1.7, 95% CI 1.0-2.7) were associated with the perceived need for lifelong follow-up care versus limited duration or no follow-up care.

Conclusion: While the majority of survivors had attended a survivor clinic in the past year, only two-thirds believed that they needed lifelong follow-up care and screening for potential treatment-related late effects. Education strategies are needed to improve survivors' awareness of the importance of lifelong survivor care.

Table of Contents

Introduction ..................................................................................................... 1
Childhood and Adolescent Cancer ......................................................................... 1
Epidemiology of Childhood and Adolescent Cancer .................................................... 2
Trends in Incidence, Mortality, and Survival Rates .................................................... 4
Childhood Cancer Survivorship as a Public Health Concern .......................................... 5
Barriers to Follow-up Care in Survivors ................................................................... 6
Context and Significance of this Project ................................................................. 8
Methods.......................................................................................................... 10
Study Setting................................................................................................... 10
Survey Methods ............................................................................................... 10
Study Population .............................................................................................. 11
Survivor Electronic Health Records ....................................................................... 12
Dependent Variables .......................................................................................... 12
Independent and Derived Variables ....................................................................... 13
Statistical Methods ........................................................................................... 15
Results ........................................................................................................... 18
Study Population .............................................................................................. 18
Demographic Characteristics ............................................................................... 19
Clinical Characteristics and Treatment History......................................................... 19
Perceptions of Follow-up Care and Provider Preference ............................................ 20
Predictors of Survivor Perceptions of Follow-up Care Length ..................................... 21
Predictors of Provider Preferences ....................................................................... 23
Discussion ....................................................................................................... 28
Perceptions of Follow-up Care Length.................................................................... 28
Provider Preferences .......................................................................................... 30
Limitations ....................................................................................................... 31
Strengths ........................................................................................................ 32
Conclusions ...................................................................................................... 32
Summary, Public Health Implications, and Future Directions ........................................ 34
Summary .......................................................................................................... 34
Public Health Implications .................................................................................... 34
Future Directions ............................................................................................... 35
Tables .............................................................................................................. 36
Figures.............................................................................................................. 45
References ........................................................................................................ 48
Supplementary Appendix....................................................................................... 53
Additional Tables ................................................................................................ 53

About this Master's Thesis

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• Permission granted by the author to include this thesis or dissertation in this repository. All rights reserved by the author. Please contact the author for information regarding the reproduction and use of this thesis or dissertation.

School	Rollins School of Public Health
Department	Epidemiology
Degree	MPH
Submission	Master's Thesis
Language	English
Research Field	Health Sciences, Oncology Health Sciences, Epidemiology
Keyword	Cancer survivorship Childhood cancer
Committee Chair / Thesis Advisor	Mertens, Ann, Emory University
Committee Members	Effinger, Karen E, Emory University
Partnering Agencies	Hospital or other health care provider

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