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)....
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Elsevier
2024-12-01
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| Series: | Hematology, Transfusion and Cell Therapy |
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| Online Access: | http://www.sciencedirect.com/science/article/pii/S2531137924003158 |
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| author | Karina Viani William Furlong Vicente Odone Filho Mariana dos Santos Murra Juliana Moura Nabarrete Elena Ladas Ronald Duncan Barr |
| author_facet | Karina Viani William Furlong Vicente Odone Filho Mariana dos Santos Murra Juliana Moura Nabarrete Elena Ladas Ronald Duncan Barr |
| author_sort | Karina Viani |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-b20fe39dfd2645ce943a177a2c728829 |
| institution | DOAJ |
| issn | 2531-1379 |
| language | English |
| publishDate | 2024-12-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Hematology, Transfusion and Cell Therapy |
| spelling | doaj-art-b20fe39dfd2645ce943a177a2c7288292025-08-20T02:52:31ZengElsevierHematology, Transfusion and Cell Therapy2531-13792024-12-0146S228S23310.1016/j.htct.2024.05.014Comprehensive health status and health-related quality of life of children at diagnosis of high-risk neuroblastoma: a multicentric pilot studyKarina Viani0William Furlong1Vicente Odone Filho2Mariana dos Santos Murra3Juliana Moura Nabarrete4Elena Ladas5Ronald Duncan Barr6Instituto de Tratamento do Câncer Infantil (ITACI), Hospital das Clínicas, Faculdade de Medicina, Universidade de São Paulo. São Paulo, Brazil; Corresponding author at: Rua Galeno de Almeida, 148, Pinheiros CEP: 05410-030, São Paulo/SP, Brazil.Centre for Health Economics and Policy Analysis, McMaster University, Hamilton, CanadaInstituto de Tratamento do Câncer Infantil (ITACI), Hospital das Clínicas, Faculdade de Medicina, Universidade de São Paulo. São Paulo, Brazil; Hospital Israelita Albert Einstein, São Paulo, BrazilHospital de Amor Infantojuvenil de Barretos, Hospital de Amor. Barretos, BrazilHospital Israelita Albert Einstein, São Paulo, BrazilDepartment of Pediatrics, Division of Hematology/Oncology/Stem Cell Transplantation, Columbia University Irving Medical Center, New York, NY, USAMcMaster Children's Hospital, Hamilton, CanadaBackground: 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.http://www.sciencedirect.com/science/article/pii/S2531137924003158Quality of lifeNeuroblastomaPediatrics |
| spellingShingle | Karina Viani William Furlong Vicente Odone Filho Mariana dos Santos Murra Juliana Moura Nabarrete Elena Ladas Ronald Duncan Barr Comprehensive health status and health-related quality of life of children at diagnosis of high-risk neuroblastoma: a multicentric pilot study Hematology, Transfusion and Cell Therapy Quality of life Neuroblastoma Pediatrics |
| title | Comprehensive health status and health-related quality of life of children at diagnosis of high-risk neuroblastoma: a multicentric pilot study |
| title_full | Comprehensive health status and health-related quality of life of children at diagnosis of high-risk neuroblastoma: a multicentric pilot study |
| title_fullStr | Comprehensive health status and health-related quality of life of children at diagnosis of high-risk neuroblastoma: a multicentric pilot study |
| title_full_unstemmed | Comprehensive health status and health-related quality of life of children at diagnosis of high-risk neuroblastoma: a multicentric pilot study |
| title_short | Comprehensive health status and health-related quality of life of children at diagnosis of high-risk neuroblastoma: a multicentric pilot study |
| title_sort | comprehensive health status and health related quality of life of children at diagnosis of high risk neuroblastoma a multicentric pilot study |
| topic | Quality of life Neuroblastoma Pediatrics |
| url | http://www.sciencedirect.com/science/article/pii/S2531137924003158 |
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