Comprehensive Health Status and Health-related Quality of Life of Children at Diagnosis of High-risk Neuroblastoma: a Multicentric Pilot Study

Overview

Journal Hematol Transfus Cell Ther

Specialty Hematology

Date 2024 Sep 20

PMID 39304372

Authors

Karina Viani

William Furlong

Vicente Odone Filho

Mariana Dos Santos Murra

Juliana Moura Nabarrete

Elena Ladas

Ronald Duncan Barr

Affiliations

Soon will be listed here.

Abstract

Background: Neuroblastomas account for 8-10 % of all cancer diagnoses among children. Most patients present with advanced, high-risk disease and 90 % are less than five years old. The burden of morbidity and mortality is high and is quantifiable by measures of health-related quality of life (HRQL). Measuring quality of life in under five-year-old children is a particular challenge that has been met with the development of the Health Utilities Pre-School (HuPS) instrument. Quality of life studies in children with cancer are scarce in low- and middle-income countries and are usually conducted at a single center, thus limiting any conclusions drawn. This pilot study aimed to assess the health-related quality of life of children at the time of diagnosis of high-risk neuroblastomas.

Method: This prospective cross-sectional multicentric study assessed the quality of life of children with high-risk neuroblastoma. The Health Utilities Pre-School instrument was applied to under five-year-olds, and the related Health Utilities Index Mark 3 instrument to over five-year olds.

Main Results: Eleven patients participated in this study. There was a high burden of morbidity at diagnosis, often equating to severe disability, indicative of states of health with scores worse than being dead in two under five-year-old children.

Conclusion: The results of the current study will help to set research priorities for subsequent investigations and provide a basis to improve supportive care for children with high-risk neuroblastoma.

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