Double disadvantage: a case control study on health-related quality of life in children with sickle cell disease
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RESEARCH
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Double disadvantage: a case control study on health-related quality of life in children with sickle cell disease Channa T Hijmans1,2*, Karin Fijnvandraat2, Jaap Oosterlaan3, Harriët Heijboer2, Marjolein Peters2, Martha A Grootenhuis1
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 with SCD are especially vulnerable compared to other patient populations, and have special health care needs.
Background Sickle cell disease (SCD) is a hereditary red blood cell disorder that occurs predominantly in people of African ancestry [1]. SCD is becoming one of the most common genetic disorders in children in Western Europe, due to demographic changes [2]. In the Netherlands, an estimated number of 1000 children, originating from Surinam and Central Africa, have SCD. The disease is characterized by chronic haemolytic anaemia and vascular occlusion, causing recurrent painful episodes, * Correspondence: [email protected] 1 Psychosocial Department, Emma Children’s Hospital, Academic Medical Center, P.O. Box 304, 1100 VC Amsterdam, The Netherlands Full list of author information is available at the end of the article
irreversible organ damage, and neurocognitive deficits. Besides the medical consequences, most families with a child with SCD have to cope with financial and social problems, as the majority belongs to immigrant communities with a low socio-economic status (SES) and is single parented [3]. Nevertheless, the differential impact of lo
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