Children undergoing dialysis experience impaired growth, invasive procedures, school and social constraints. They often have poor self-esteem and a pervasive sense of losing their identity, body integrity, control, independence and opportunity. Interventions are needed to equip children with the capacity to manage their health, participate in community, engage in 'permissible' recreational activities, progress in their studies, and remain vigilant in dialysis and treatment responsibilities, for improved health and treatment outcomes.
We believe this is the first study examining racial differences in access to and outcomes of kidney transplantation in a large European population. We found important differences with less favorable outcomes for black and Asian patients. Further research is required to address the barriers to optimal treatment among racial minority groups.
Health-related quality of life (HRQoL) is increasingly recognized as a key outcome in both clinical and research settings in the pediatric population with end-stage renal disease (ESRD). This review aims to: (1) summarize the current knowledge on HRQoL and socioprofessional outcomes and (2) provide strategies for incorporation of HRQoL assessment into clinical practice. Studies report that pediatric patients with ESRD have significantly lower HRQoL scores compared with children with other chronic diseases. Patients treated by dialysis are at particularly high risk for impaired HRQoL. Furthermore, patients more often have impaired neurocognitive functioning and lower academic achievement. Important determinants of impaired HRQoL include medical factors (i.e., receiving dialysis, disabling comorbidities, cosmetic side effects, stunted growth), sociodemographic factors (i.e., female gender, non-Western background) and psychosocial factors (i.e., noneffective coping strategies). Contrary to the situation in childhood, adult survivors of pediatric ESRD report a normal mental HRQoL. Despite this subjective feeling of well-being, these patients have on average experienced significantly more difficulties in completing their education, developing intimate relationships, and securing employment. Several medical and psychosocial strategies may potentially improve HRQoL in children with ESRD. Regular assessment of HRQoL and neurocognitive functioning in order to identify areas in which therapies and interventions may be required should be part of standard clinical care.
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