TAILIEUCHUNG - báo cáo khoa học:" Double disadvantage: a case control study on health-related quality of life in children with sickle cell disease"

Tuyển tập báo cáo các nghiên cứu khoa học quốc tế ngành y học dành cho các bạn tham khảo đề tài: Double disadvantage: a case control study on health-related quality of life in children with sickle cell disease | Hijmans et al. Health and Quality of Life Outcomes 2010 8 121 http content 8 1 121 HEALTH AND QUALITY of life outcomes RESEARCH Open Access Double disadvantage a case control study on health-related quality of life in children with sickle cell disease 2 3 2 2 Channa T Hijmans Karin Fijnvandraat Jaap Oosterlaan Harriet Heijboer Marjolein Peters Martha A Grootenhuis 1 Abstract Background Low health-related quality of life HRQoL of children with sickle cell disease SCD may be associated with consequences of the disease or with the low socio-economic status SES of this patient population. The aim of this study was to investigate the HRQoL of children with SCD controlling for SES by comparing them to healthy siblings matched for age and gender and to a Dutch norm population. Methods The HRQoL of 40 children with homozygous SCD and 36 healthy siblings was evaluated by the KIDSCREEN-52. This self-report questionnaire assesses ten domains of HRQoL. Differences between children with SCD and healthy siblings were analyzed using linear mixed models. One-sample t-tests were used to analyze differences with the Dutch norm population. Furthermore the proportion of children with SCD with impaired HRQoL was evaluated. Results In general the HRQoL of children with SCD appeared comparable to the HRQoL of healthy siblings while children with SCD had worse HRQoL than the Dutch norm population on five domains Physical Well-being Moods Emotions Autonomy Parent Relation and Financial Resources . Healthy siblings had worse HRQoL than the Dutch norm population on three domains Moods Emotions Parent Relation and Financial Resources . More than one in three children with SCD and healthy siblings had impaired HRQoL on several domains. Conclusion These findings imply that reduced HRQoL in children with SCD is mainly related to the low SES of this patient population with the exception of disease specific effects on the physical and autonomy domain. We conclude that children .

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