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Publication Details
AFRICAN RESEARCH NEXUS
SHINING A SPOTLIGHT ON AFRICAN RESEARCH
biochemistry, genetics and molecular biology
Health related quality of life in Middle Eastern children with beta-thalassemia
BMC Blood Disorders, Volume 12, Article 6, Year 2012
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Description
Background: Thalassemia is a common disorder worldwide with a predominant incidence in Mediterranean countries, North Africa, the Middle East, India, Central Asia, and Southeast Asia. Whilst substantial progress has been made towards the improvement of Health related quality of life (HRQoL) in western countries, scarce evidence-based data exists on HRQol of thalassemia children and adolescents living in developing countries.Methods: We studied 60 thalassemia children from Middle Eastern countries with a median age of 10 years (range 5 to 17 years). HRQoL was assessed with the Pediatric Quality of Life Inventory (PedsQL) 4.0. The Questionnaire was completed at baseline by all patients and their parents. The agreement between child-self and parent-proxy HRQoL reports and the relationship between HRQoL profiles and socio-demographic and clinical factors were investigated.Results: The scores of parents were generally lower than those of their children for Emotional Functioning (mean 75 vs 85; p = 0.002), Psychosocial Health Summary (mean 70.3 vs 79.1; p = 0.015) and the Total Summary Score (mean 74.3 vs 77.7 p = 0.047). HRQoL was not associated with ferritin levels, hepatomegaly or frequency of transfusions or iron chelation therapy. Multivariate analysis showed that a delayed start of iron chelation had a negative impact on total PedsQL scores of both children (p = 0.046) and their parents (p = 0.007).Conclusions: The PedsQL 4.0 is a useful tool for the measurement of HRQoL in pediatric thalassemia patients. This study shows that delayed start of iron chelation has a negative impact on children's HRQoL. © 2012 Caocci et al.; licensee BioMed Central Ltd.
Authors & Co-Authors
Caocci, G.
Italy, Cagliari
Centro Trapianti Di Midollo Osseo
Italy, Cagliari
Università Degli Studi Di Cagliari
Efficace, Fabio
Italy, Rome
Italian Group for Adult Hematologic Diseases Gimema Data Center
Ciotti, Francesca
Italy, Milan
Irccs Ospedale San Raffaele
Roncarolo, Maria Grazia
Italy, Milan
Irccs Ospedale San Raffaele
Vacca, Adriana
Italy, Cagliari
Centro Trapianti Di Midollo Osseo
Piras, Eugenia
Italy, Cagliari
Centro Trapianti Di Midollo Osseo
Littera, R.
Italy, Cagliari
Ats Sardegna, Assl Cagliari Ospedale Binaghi
Markous, Raji Suleiman D.
Iraq
Hevi Pediatric Hospital
Collins, Gary S.
United Kingdom, Oxford
University of Oxford Medical Sciences Division
Ciceri, Fabio
Italy, Milan
Irccs Ospedale San Raffaele
Mandelli, Franco
Italy, Rome
Italian Group for Adult Hematologic Diseases Gimema Data Center
Marktel, Sarah
Italy, Milan
Irccs Ospedale San Raffaele
La Nasa, G. L.
Italy, Cagliari
Centro Trapianti Di Midollo Osseo
Italy, Cagliari
Università Degli Studi Di Cagliari
Statistics
Citations: 97
Authors: 13
Affiliations: 7
Identifiers
Doi:
10.1186/1471-2326-12-6
e-ISSN:
14712326
Research Areas
Disability
Maternal And Child Health
Study Design
Cohort Study
Study Locations
Multi-countries