Reliability of Self-Reported Late Effects by Childhood Cancer Survivors and Caregivers: A Study of CHOA-CAYACSS Open Access

Rogowski, Kelsey K. (2015)

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Introduction : The survival rate of childhood cancer has risen to over 80%; as of January 1, 2010, an estimated 379,112 survivors of childhood and adolescent cancer were alive in the United States. Research shows that survivors of childhood cancer are at increased risk for long-term complications due to treatments. Most research on late effects relies on self-reported data by childhood cancer survivors and caregivers. This analysis assesses the degree of agreement between medical records and self-reported surveys for certain late effects, as well as factors associated with reporting with high agreement.

Methods: CHOA-CAYACSS is an institutional longitudinal study evaluating health-related characteristics of a cohort of survivors of childhood cancer at Children's Healthcare of Atlanta's Cancer Survivor Program (CSP). We analyzed 244 patients who completed baseline surveys within 1 month of Cancer Survivor Follow-Up (CSFU) visits or between 1 and 15 months of Cancer Survivor (CS) or CSFU visits. Reported prevalence of late effects and agreement between survey report and medical records were determined for 12 late effects surveyed in CHOA-CAYACSS. Logistic regression was performed to determine the factors associated with having overall high agreement, defined as agreeing on 11 or more late effects.

Results: The sample agreed on a range of 9-12 of the 12 late effects comparing survey reports and medical records. Overall significant differences were found in reporting fatigue, hypothyroidism, asthma, and weak bones (p<0.05). Other thyroid problems, weak heart muscle, diabetes, and need for hormone replacement had Kappa ≥ 0.98. Controlling for diagnosis, survey type, sex, and visit count before baseline, surveys completed within 1 month of a CSFU visit were 5.44 times more likely to have high agreement than surveys completed between 12-15 months of visits [OR= 5.44 (95% CI: 1.17, 25.34)].

Discussion: This analysis supports a robust understanding of long-term complications in childhood cancer survivors that require the use of both medical records and self-report. By tailoring education and survivor visits to more closely fit the needs of survivors, CSP can better address and ameliorate each aspect of life affected by cancer treatments and provide comprehensive care for childhood cancer aging and transitioning into adulthood.

Table of Contents

Background and Introduction. 1

Incidence. 1

Types of Childhood Cancers. 1

Epidemiology of Childhood Cancers. 1

Why Survivorship. 3

Prevalence and Risk Factors of Late Effects. 3

Previous Literature of Reporting of Late Effects. 4

Methods. 5

Patient Population. 5

Data Collection. 7

Study Variables. 7

Data Analysis. 9

Results. 10

Study Participation. 10

Descriptive Statistics. 11

Agreement between Survey Report and Medical Records. 11

Factors of Modeling Likelihood of High Agreement 12

Discussion. 13

Strengths. 16

Limitations. 17

Clinical and Public Health Significance. 18

References. 21

Tables and Figures. 27

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