诊断为高危神经母细胞瘤儿童的综合健康状况和健康相关生活质量：一项多中心试点研究。

IF 1.8 Q3 HEMATOLOGY

Hematology, Transfusion and Cell Therapy Pub Date : 2024-12-01 DOI:10.1016/j.htct.2024.05.014

Karina Viani , William Furlong , Vicente Odone Filho , Mariana dos Santos Murra , Juliana Moura Nabarrete , Elena Ladas , Ronald Duncan Barr

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引用次数: 0

摘要

背景：神经母细胞瘤占儿童癌症诊断总数的 8-10%。大多数患者都是晚期高危患者，90%的患者不到五岁。发病率和死亡率很高，可通过衡量健康相关生活质量（HRQL）来量化。测量五岁以下儿童的生活质量是一项特殊的挑战，目前已开发出学前健康效用（HuPS）工具。在低收入和中等收入国家，针对癌症儿童的生活质量研究很少，而且通常是在一个中心进行的，因此得出的结论有限。这项试点研究旨在评估儿童在确诊高危神经母细胞瘤时的健康相关生活质量：这项前瞻性横断面多中心研究评估了高危神经母细胞瘤患儿的生活质量。主要结果：11名患者参与了这项研究：主要结果：11 名患者参与了这项研究。诊断时的发病率很高，通常相当于严重残疾，这表明两名五岁以下儿童的健康状况比死亡还糟糕：本次研究的结果将有助于确定后续调查的研究重点，并为改善高危神经母细胞瘤患儿的支持性护理提供依据。

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Comprehensive health status and health-related quality of life of children at diagnosis of high-risk neuroblastoma: a multicentric pilot study

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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