Symptom Clusters and their Association with Health-Related Quality of Life in Pediatric Cancer Survivors After Treatment Completion

A critical area of cancer research, symptom management, has evolved from focusing on individual symptoms to recognizing the complexity of co-occurring symptoms, commonly referred to as symptom clusters. However, most studies on pediatric cancer symptom clusters have focused primarily on the treatment phase or long-term survivorship, overlooking the early post-treatment period. This dissertation examines the prevalence of multiple symptoms and symptom clusters in pediatric cancer survivors post-treatment; factors associated with the total number of symptoms and symptom clusters; and the association of the total number of symptoms and symptom clusters with health-related quality of life (HRQoL). We developed and tested a symptom cluster framework by adapting Tabudlo’s Theory of Symptom Cluster Management. Using a cross-sectional design, data were collected from 136 pediatric cancer survivors aged 10–25 who were within 8 years of treatment completion at Nebraska Medicine and Children’s Nebraska. Findings revealed that approximately 80% of participants experienced multiple symptoms, with four distinct symptom clusters identified: fatigue, mood disturbance, gastrointestinal, and neurologic-autonomic. Factors associated with the total number of symptoms were participants’ state of residence, treatment modality, diagnosis, father’s education level, and median household income. Also, higher symptom numbers were negatively associated with HRQoL. Sociodemographic factors (sex, cohabitation status, education level, and race/ethnicity); clinical factors (diagnosis and treatment modality combinations); and parental factors (mother’s education) were associated with symptom clusters. Additionally, symptom clusters were negatively associated with HRQoL, reinforcing their impact on long-term survivorship outcomes. This association was further validated by our developed and tested conceptual framework of symptom clusters that incorporated clinical factors, survivors’ sociodemographic characteristics, parental sociodemographics, and HRQoL. Empirical testing confirmed the relevance and applicability of this model in pediatric cancer survivorship research. The findings emphasize that the total number of symptoms and symptom clusters vary across sociodemographic groups, clinical characteristics, and parental contexts, highlighting the heterogeneity of survivorship experiences. These differences point to the inadequacy of uniform symptom management approaches and reinforce the need for personalized strategies that account for individual risk profiles, contextual factors, and developmental needs. Tailored interventions that are grounded in symptom cluster science and responsive to the survivor’s unique circumstances are essential for improving HRQoL and long-term outcomes in pediatric cancer survivors.