Disease burden and quality of life of in children with sickle cell disease in Italy: time to be considered a priority
Abstract The objective of the present article is to highlight the need for attention to Quality of Life of patients with Sickle Cell Disease living in Italy. The transformation of sickle cell disease from a severe life-threatening disease of childhood into a chronic, lifelong condition due to the si...
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doaj-2d83387564d74419b8c473391d03fdae2021-08-01T11:46:43ZengBMCItalian Journal of Pediatrics1824-72882021-07-014711510.1186/s13052-021-01109-1Disease burden and quality of life of in children with sickle cell disease in Italy: time to be considered a priorityRaffaella Colombatti0Maddalena Casale1Giovanna Russo2Clinic of Pediatric Hematology Oncology, Department of Woman’s and Child’s Health, University of PadovaDepartment of Women, Child and General and Specialized Surgery, University “Luigi Vanvitelli”Pediatric Hemato-Oncology Unit, Department of Clinical and Experimental Medicine, University of CataniaAbstract The objective of the present article is to highlight the need for attention to Quality of Life of patients with Sickle Cell Disease living in Italy. The transformation of sickle cell disease from a severe life-threatening disease of childhood into a chronic, lifelong condition due to the significant improvements in care and treatment options, imposes increasing new challenges to health care providers and patients. Patients now face physical, psychosocial and emotional challenges throughout their lives. They generally have to receive chronic treatments and regular multidisciplinary monitoring which increase social and emotional burden rendering adherence to treatment sometimes complicated. A chronic disease impacts all aspects of patients’ lives, not only the physical one, but also the social and emotional aspects as well as the educational and working life. The entire “Quality of Life” is affected and recent evidence demonstrates the importance quality of life has for patients with chronic illness. The results of this review focus on emerging data regarding quality of life across the lifespan of patients with Sickle Cell Disease, and highlight the need for more action in this field in Italy, where recent immigration and improved care determine an increasing population of children with sickle cell disease being taken into long term care.https://doi.org/10.1186/s13052-021-01109-1Sickle cell diseaseChildAdolescentDisease burdenQuality of lifeItaly |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Raffaella Colombatti Maddalena Casale Giovanna Russo |
spellingShingle |
Raffaella Colombatti Maddalena Casale Giovanna Russo Disease burden and quality of life of in children with sickle cell disease in Italy: time to be considered a priority Italian Journal of Pediatrics Sickle cell disease Child Adolescent Disease burden Quality of life Italy |
author_facet |
Raffaella Colombatti Maddalena Casale Giovanna Russo |
author_sort |
Raffaella Colombatti |
title |
Disease burden and quality of life of in children with sickle cell disease in Italy: time to be considered a priority |
title_short |
Disease burden and quality of life of in children with sickle cell disease in Italy: time to be considered a priority |
title_full |
Disease burden and quality of life of in children with sickle cell disease in Italy: time to be considered a priority |
title_fullStr |
Disease burden and quality of life of in children with sickle cell disease in Italy: time to be considered a priority |
title_full_unstemmed |
Disease burden and quality of life of in children with sickle cell disease in Italy: time to be considered a priority |
title_sort |
disease burden and quality of life of in children with sickle cell disease in italy: time to be considered a priority |
publisher |
BMC |
series |
Italian Journal of Pediatrics |
issn |
1824-7288 |
publishDate |
2021-07-01 |
description |
Abstract The objective of the present article is to highlight the need for attention to Quality of Life of patients with Sickle Cell Disease living in Italy. The transformation of sickle cell disease from a severe life-threatening disease of childhood into a chronic, lifelong condition due to the significant improvements in care and treatment options, imposes increasing new challenges to health care providers and patients. Patients now face physical, psychosocial and emotional challenges throughout their lives. They generally have to receive chronic treatments and regular multidisciplinary monitoring which increase social and emotional burden rendering adherence to treatment sometimes complicated. A chronic disease impacts all aspects of patients’ lives, not only the physical one, but also the social and emotional aspects as well as the educational and working life. The entire “Quality of Life” is affected and recent evidence demonstrates the importance quality of life has for patients with chronic illness. The results of this review focus on emerging data regarding quality of life across the lifespan of patients with Sickle Cell Disease, and highlight the need for more action in this field in Italy, where recent immigration and improved care determine an increasing population of children with sickle cell disease being taken into long term care. |
topic |
Sickle cell disease Child Adolescent Disease burden Quality of life Italy |
url |
https://doi.org/10.1186/s13052-021-01109-1 |
work_keys_str_mv |
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1721245535495520256 |