Background: Many childhood cancer survivors experience ongoing symptoms or late-effects following the completion of treatment and into long-term survivorship. These symptoms can co-occur in ‘symptom clusters’ which can significantly impact survivors’ health-related quality of life (HRQoL).
Aims: This multi-perspective cross-sectional study aimed to investigate the prevalence of symptoms in child and adolescent cancer survivors, agreement between parents and survivors regarding symptom-burden, and key symptom-clusters, which may affect HRQoL.
Methods: Participants were recruited from the Long-Term Survivorship Clinic at Sydney Children’s Hospital. We used the Child Health Utilities Index (CHU9-D) to assess symptoms including worry, sadness, pain, fatigue, irritability, problems with daily routine, sleep, ability to join in activities, problems with schoolwork, and overall HRQoL. We used Kappa tests to compare inter-rater reliability between child/adolescent survivors and their parents, and hierarchical cluster analysis to identify symptom clusters.
Results: Questionnaires were completed by 33 child survivors (7-12years), 19 adolescent survivors (13-17years) and 61 parents (child age: 7-17years). The most common diagnosis was Acute lymphoblastic leukaemia. Participants included 47 parent-survivor dyads. The most commonly reported symptoms were fatigue (49.2-57.9%), worry/anxiety (9.1-47.4%) and problems with school (21.2-34.4%). Average inter-rater reliability between parent-child dyads’ symptom reporting was ‘fair’ (mean Kappa=0.362) and ‘weak’ for parent-adolescent dyads (mean Kappa=0.141). We identified four unique symptom-clusters: a [sad + annoyed + pain + worry] symptom-cluster among childhood cancer survivors; a [problems with school + problems with daily routine + worry + pain]; and a [sad + annoyed] symptom-cluster among adolescent cancer survivors; and a [sad-annoyed] symptom-cluster among parent-proxies.
Conclusion: Childhood and adolescent cancer survivors experience a myriad of ongoing symptoms. Low levels of agreement between survivors and parent symptom reporting emphasise the need to capture child and adolescent voices to ensure patient-centred clinical care. The identification of symptom-clusters in this population provides a promising pathway for identifying/developing interventions to improve HRQoL.