74 How Do Patient-Reported Symptoms and Their Associated Attributes Differ Among Children Under 12 Years Old With Cancer From Their Primary Guardian’s Report

Faculty Mentor: Lauri Linder (Nursing, University of Utah)

Abstract

Childhood cancer presents a significant and multifaceted challenge that affects both the physical and emotional well-being of the child and their family members. The diagnosis and treatment process can be lengthy, unpredictable, and emotionally taxing for both children and their parents, requiring vigilant attention to symptoms in order to support the child through their treatment and recovery. Accurate symptom reporting is essential in ensuring appropriate symptom management and in maintaining the child’s quality of life throughout the continuum of care. However, discrepancies between child and parent reports can complicate this symptom assessment process, especially because symptoms such as pain, fatigue, or emotional distress are subjective in nature and may cause a difference in interpretation based on the reporter. This thesis seeks to explore the differences in symptom reporting between school-age children with cancer (ages 6-12) and their parents, using data from the Memorial Symptom Assessment Scale (MSAS 7-12), a validated tool designed to assess pediatric cancer symptoms. This thesis also examines whether the reporting of symptoms varies based on the child’s gender, which has the potential to affect how symptoms are experienced or expressed.

This secondary analysis of data was derived from a larger instrument development study focused on symptom self-management in pediatric oncology populations. A total of 95 child (42% were girls) and parent (67% were mothers) dyads from two pediatric oncology centers participated. Descriptive statistics, including chi-square analysis and independent t-tests, were conducted to compare the prevalence, severity, and distress related to nine commonly reported pediatric cancer symptoms. Findings revealed statistically significant differences in how children and parents reported fatigue (χ=10.79, p<.01) and itchiness (χ=6.28; p=0.02), with children reporting a higher prevalence of both symptoms than their parent counterparts. Parents also often reported sadness and worry more frequently than their children, which suggests a possible overemphasis on emotional symptoms from parents, but these differences were not statistically significant. No gender-based differences in symptom reports were observed, whether based on reports by the child or the parent.

These findings also emphasize the critical importance of directly incorporating the child’s voice into clinical assessments and symptom management practices in order to ensure comprehensive, effective care. When children’s reports are overlooked or not assessed, there is a risk for inadequate treatment of physical symptoms, as well as potential misinterpretations regarding the child’s emotion distress. The results of this thesis have implications for pediatric nursing practice, emphasizing the need for healthcare workers to prioritize both child and parent reports of symptoms. A key limitation of this study was its cross-sectional design as well as the fact that it was a secondary analysis rather than a primary data collection effort. Future research should explore more longitudinal trends in symptom congruence over time and further investigate how psychosocial, developmental, and cultural factors may contribute to difference in symptom reporting between children and their parents.

Improving the understanding of these differences can ultimately lead to more tailored interventions with better patient outcomes. By prioritizing child centered communication in symptom assessment and management, healthcare teams can deliver more effective, responsive, and holistic care in pediatric oncology populations.

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