Electronic Symptom Assessment in Children and Adolescents with Advanced Cancer Undergoing Hematopoietic Stem Cell Transplantation

Abstract

Background Effective symptom assessment and management for children with advanced cancer undergoing hematopoietic stem cell transplantation (HSCT) is critical to minimize suffering. Most literature specific to children receiving HSCT is based upon medical record reviews and parent report, and to a lesser extent, patient self-report. Objectives The purpose of this study was to describe symptom frequency, severity and level of distress in children and adolescents undergoing HSCT using patient self-report via electronic data collection. Methods A modified Memorial Symptom Assessment Scale (MSAS) was electronically administered to children with advanced cancer every two weeks. Clinical data was collected at corresponding time points. A sub-analysis was conducted for the cohort of children with advanced cancer who received autologous or allogeneic HSCT. Results Forty-seven children with advanced cancer were enrolled and completed 563 surveys during the course of the study. Eleven of these 47 children received HSCT and completed 201/563 surveys. The median age of children in the HSCT cohort was 12.7 years, 73% were female, and most children had a hematologic (45%) or solid tumor (45%) malignancy. Ninety-six percent of surveys administered to children receiving HSCT were completed, and 64% of surveys were completed at home. Pain (35%), nausea (30%), sleeping difficulty (29%) and fatigue (22%) were the most commonly reported symptoms in children receiving HSCT. Children in the HSCT cohort had higher total and physical subscale mean MSAS scores, and higher pain, nausea, fatigue, and lack of appetite mean scores compared to children with advanced cancer not receiving HSCT (p Conclusion Children with advanced cancer receiving HSCT may have increased symptom burden with higher levels of distress as compared to those who do not receive HSCT. Increased understanding of the symptom experience for children with advanced cancer undergoing HSCT may promote timely assessment and treatment of distressing symptoms.