An experience of multi-dimensional symptom assessment for children treated in a tertiary paediatric oncology unit: a prospective survey-based study

Abstract Background: Children undergoing cancer-directed treatment experience distressing symptoms. Multi-dimensional patient-reported symptom assessment scales have been validated in children with cancer, but are not routinely used in clinical practice. Aim: To describe the symptom prevalence and burden for children receiving treatment in a paediatric oncology unit, as described by both children where possible, and their parents. Methods: Prospective survey-based study during which the Memorial Symptom Assessment Scale was administered to children and parents. Participants were offered the opportunity to complete the survey on multiple occasions. Demographic and clinical data were obtained from electronic medical records. Results: Forty-one children were recruited, aged 8 months to 18 years and 54% were female. In total, 54 parent surveys and 29 child surveys were completed. The vast majority of surveys (81%) were completed in the inpatient setting, and more than half within 10 days of chemotherapy. Haematological malignancies predominated. There was a median of 4.8 months between diagnosis and recruitment. Eleven children died after the study closed; no patients died during the study period. Symptom prevalence did not always correlate with distress. Conclusions: Exploration of the impact of a symptom, and not just its presence, is vital for patient-centred care and can be achieved using multi-dimensional symptom scales. Both the child and caregiver’s voices should be obtained where possible. Further studies are needed to explore how these scales can be used to identify distress and guide supportive care delivery.