Oral Presentation 2025 Joint Meeting of the COSA ASM and IPOS Congress

A multi-perspective cross-sectional analysis of symptom burden and symptom clusters in childhood and adolescent cancer survivors in Australia. (126776)

Sarah J Ellis 1 2 , Mohammed Huda 1 2 , Clarissa E Schilstra 1 2 , Claire E Wakefield 1 2 3 , Richard J Cohn 1 2 , Joanna E Fardell 1 2 4
  1. Behavioural Sciences Unit, Discipline of Paediatrics and Child Health, School of Clinical Medicine, UNSW, Sydney, NSW, Australia
  2. Kids Cancer Centre, Sydney Children's Hospital, Sydney, NSW, Australia
  3. Division of Quality of Life and Pediatric Palliative Care, Department of Pediatrics,, Stanford Medicine Children’s Health, Palo Alto, California, USA
  4. Western Sydney Youth Cancer Service, Crown Princess Mary Cancer Centre, Westmead Hospital, Westmead, NSW, Australia

Objectives/purpose: Improvements in survival rates for children and adolescents with cancer have led to a growing population of survivors, yet many experience ongoing symptoms or late-effects following treatment completion. Co-occurring symptoms or ‘symptom clusters’ can significantly impact survivors’ health-related quality of life (HRQoL). The purpose of this study was to investigate the prevalence of symptoms in childhood/adolescent cancer survivors, agreement between parents and survivors regarding symptom-burden, and key symptom-clusters which may affect HRQoL. 

Sample and setting: We recruited participants from the Long-Term Survivorship Clinic at Sydney Children’s Hospital. Thirty-three child survivors (7-12years), 19 adolescent survivors (13-17years) and 61 parents completed questionnaires, including 47 parent-survivor dyads.

Procedures: 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 school/work, 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: The most frequently reported symptoms were fatigue (49.2-57.9%), worry/anxiety (9.1-47.4%) and problems with school/work (21.2-34.4%). Cumulatively, the prevalence of symptoms was higher among adolescent survivors compared with childhood survivors or parent proxies. 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 among childhood cancer survivors including: [sad-annoyed], [sleep-school-daily routine-joining activities], [sad-worry-daily routine] and [worry-pain]; and three unique symptom-clusters among adolescent cancer survivors: [sad-annoyed], [sad-worry-sleep-daily routine] and [worry-pain-school-daily routine].

Conclusion and clinical implications: Childhood and adolescent cancer survivors can experience multiple ongoing symptoms. Low levels of agreement between survivors and parent symptom reporting emphasises 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.