Patient reported and clinical outcomes in paediatric end stage renal disease: Understanding factors affecting quality of life, access to transplantation and mortality

This thesis addresses to what extent end stage renal disease (ESRD) and its treatment affects quality of life and social functioning in paediatric patients. Special emphasis is placed on the role of demographic and medical factors. Secondly, we studied the very long-term psychosocial outcomes of almost 30 years of renal replacement therapy (RRT) in adult patients with paediatric onset of ESRD. Finally, this thesis describes the influence of racial background on medical outcomes among children with ESRD in Europe.
We aimed:
1. to provide an overview of the current knowledge on health related quality of life (HRQoL) in children with ESRD and to evaluate different methods used to measure HRQoL in this specific patient group.
2. to assess the impact of ESRD and its treatment on the lives of children with ESRD, using different questionnaires (i.e. utility based questionnaires and generic instruments). Special emphasis was put on the role of demographic and medical factors associated with HRQoL.
3. to study the impact of 30 years of RRT since childhood on HRQoL and socioprofessional functioning in adulthood.
4. to investigate the association between ethnic background and important treatment outcomes among European children with ESRD.