Barriers and Facilitators to Attendance at an Initial Long-Term Follow-Up Clinic Visit by Survivors of Childhood Cancer Open Access

Daly, Ashley Janaye Clark (2016)

Permanent URL: https://etd.library.emory.edu/concern/etds/hd76s0634?locale=en
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Abstract

Purpose: Childhood cancer survivors are at risk for a variety of adverse health outcomes. Regular follow-up at a specialized long-term follow-up program is important to ensure the prevention and early detection of these morbidities. The purpose of this study was to describe the survivor population and characterize factors related to engagement in survivor care at Children's Healthcare of Atlanta: a large, regional pediatric clinical care hospital system in the southeastern region of the United States.

Methods: We sought to distinguish barriers and facilitators to attendance in an initial survivor healthcare appointment by conducting a retrospective review of a cohort of children and young adults who have been off-therapy for cancer for at least 2 years. Our study was restricted to survivors greater than 2 years of age; who were diagnosed with and treated for cancer (other than a brain/central nervous system cancer) at a Children's Healthcare of Atlanta location between January 1, 2007 and December 31, 2013; and who were alive and at least 2 years off therapy following their most recent cancer event as of December 31, 2015. We examined demographic, medical, and survivor visit logistic factors related to attendance in Leukemia/Lymphoma and Solid Tumor survivors; and characterized select factors in cancer survivors treated exclusively with surgical intervention and those diagnosed with Retinoblastoma or Other Hematopoietic Disease.

Results: Of the 835 subjects that comprised the primary analysis and modeling cohort of Leukemia/Lymphoma and Solid Tumor survivors 576 (69%) had completed an initial survivor healthcare appointment, while 259 (31%) had not. Variations were seen in diagnosis by age, and therapy history by diagnosis. Race/ethnicity, diagnosis, therapy history, primary treatment location, and time eligible for clinic were found to be significantly associated with clinic attendance after adjusting for other important factors.

Conclusions: Despite the importance of regular follow-up at a specialized long-term follow-up program, our study results suggest that a significant portion of the Children's Healthcare of Atlanta cancer survivor population has not completed an initial survivor healthcare appointment. Our results can be used to help inform future recruitment and retention interventions at this and similar clinics.

Table of Contents

Section 1: Background/Literature Review____________________________________1

· Introduction to Cancer Survivorship

· The Importance of Survivor Care

· Purpose and Improvements upon Previous Work

Section 2: Methods ______________________________________________________5

· Subjects

· Outcome

· Predictors

· Statistical Analysis

Section 3: Results _______________________________________________________9

· Study Sample

· Overall Attendance and Descriptive Statistics of Leukemia/Lymphoma and Solid Tumor Survivors

· Univariate Findings for Leukemia/Lymphoma and Solid Tumor Survivors

· Logistic Regression Modeling and Adjusted Associations for Leukemia/Lymphoma and Solid Tumor Survivors

· Descriptive Statistics of Other Survivor Populations

Section 4: Discussion ___________________________________________________14

Section 5: Strengths, Weaknesses, and Future Directions ______________________18

Section 6: References___________________________________________________21

Section 7: Tables_______________________________________________________24

· Table 1. Characteristics of a cohort of childhood cancer survivors eligible for survivor care (N=835)

· Table 2. Multivariable regression model and adjusted associations between having a completed cancer survivor visit versus no completed visit and predictors for a cohort of childhood cancer survivors eligible for survivor care (N=835)

· Table 3. Select characteristics of a cohort of childhood cancer survivors diagnosed with Retinoblastoma, Other Hematopoietic Disease, or who received only surgical intervention as part of their first-line of therapy (N=163)

Section 8: Figures and Figure Legends_____________________________________28

· Figure 1. Flow diagram of the derivation of the study cohort

· Figure 2. Variations in primary diagnosis by age at diagnosis for a cohort of childhood cancer survivors eligible for survivor care (N=835)

· Figure 3. Kaplan-Meier failure curve representing the probability of having a completed initial survivor clinic visit by time eligible for clinic (days); and the time eligible for clinic in days by year of diagnosis for a cohort of childhood cancer survivors eligible for survivor care (N=835)

· Figure 4. Variations in therapeutic modality history (as reported to the cancer registry) by primary diagnosis for a cohort of childhood cancer survivors eligible for survivor care (N=835)

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