Abstract
BackgroundThe impact of reduced kidney function in children is substantial. End-stage kidney disease (ESKD), the most severe form of chronic kidney disease (CKD), is a devastating illness associated with substantially increased mortality, impaired growth and psychosocial maladjustment in children. Understanding how to address the complex causes of mortality and morbidity in children with CKD requires explicit information about the risk factors that lead to adverse outcomes. In addition to biological influences, the socioeconomic circumstances of caregivers may play a significant role in the health and well-being of children with CKD.Methods/DesignA prospective cohort study (n = 380 children and n = 380 caregivers) will be conducted to determine the prevalence of economic hardship among caregivers of children with CKD. All participants will be followed biennially over a period of 5 years to determine the association between the changing socioeconomic status of the caregivers and the health and overall well-being of school-aged children with CKD. Face to face, semi-structured interviews with the caregivers (n = 45) will also be conducted to understand their perspectives on the economic, financial and psychosocial impact of CKD and how this affects the health outcomes of their child with CKD. The primary outcomes of the study are the effects of the socioeconomic status of the caregivers and self-reported health status of the children. Secondary outcomes included the prevalence of economic hardship and the distribution of wealth among the caregivers of children with CKD.DiscussionFindings from this study presents not only a snapshot of the current economic and social situation of the caregivers of children and adolescents with CKD but will also provide definitive evidence of determining whether a link between socioeconomic status of caregivers and outcomes of children with CKD exists.
Highlights
The impact of reduced kidney function in children is substantial
Findings from this study presents a snapshot of the current economic and social situation of the caregivers of children and adolescents with chronic kidney disease (CKD) but will provide definitive evidence of determining whether a link between socioeconomic status of caregivers and outcomes of children with CKD exists
Data from our pilot study suggested that 30% of the school aged children with CKD rated their current health as fair or poor among those with caregivers of the lowest income quartile, compared to 13% for those whose primary caregivers were at the highest income quartile
Summary
End-stage kidney disease (ESKD), the most severe form of chronic kidney disease (CKD), is a devastating illness associated with substantially increased mortality, impaired growth and psychosocial maladjustment in children. The mortality rate of children with CKD requiring renal replacement therapy in the form of dialysis or kidney transplantation is at least 30-fold higher than their age-matched peers, and health outcomes are not improving [1]. Children undergoing dialysis suffer significant disruption to their daily routine and quality of life. These children are attached to a machine that filters toxins from their blood at least. Transplantation is the preferred form of renal replacement therapy, children with kidney transplants are reliant on long-term maintenance immunosuppression, which is associated with adverse long-term effects such as increased infection and risk of cancer. Apart from physical health, CKD negatively impacts on the overall psychosocial, cognitive and emotional well-being of the child [2,3,4,5]
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