ObjectivesTo assess health-related quality of life (HRQoL) across three renal replacement therapy modalities (preemptive transplant, non-preemptive transplant, and dialysis) in comparison with the healthy norm and other chronic health conditions, and to explore related patient factors.Study designAll prevalent end-stage renal disease (ESRD) patients aged 8–18 years who spent at least 6 months on their current treatment modality in the Netherlands, Belgium, and part of Germany were approached to complete the Pediatric Quality of Life Inventory 4.0 (PedsQL™) questionnaire. We determined the differences between groups on PedsQL™ mean scores, the proportion of children with an impaired HRQoL (≥ 1 SD lower than the healthy norm), the proportion of problems on individual items of the PedsQL™, and the effect of time on current treatment. Linear regression models were used to explore determinants of HRQoL.Results192 out of 278 patients (20% preemptive transplant, 58% non-preemptive transplant, 22% dialysis) filled in the PedsQL™ (response rate 69%). Independent of treatment modality, patients had significantly lower mean scores and consequently higher proportions of impaired HRQoL on almost all domains compared to the healthy norm and other chronic health conditions. Patients with a preemptive transplant only reported higher scores on physical health compared to the other treatment modalities. Having comorbidities was the most important determinant associated with lower HRQoL scores.ConclusionDialysis and renal transplantation both have a severe impact on the HRQoL of children with ESRD. Physicians should be aware of this continuous burden. Furthermore, to develop tailored interventions for children with ESRD, qualitative studies are needed to gain more insight in the determinants of HRQoL in the different treatment modalities.

BackgroundIdentification of children at risk for psychosocial problems is important to be able to provide supportive and tailored care at an early stage. Due to its brevity and wide age range, the Strengths and Difficulties Questionnaire (SDQ) Parent Form is an appropriate instrument for use in paediatric clinical practice as it facilitates assessment of psychosocial functioning from young childhood into adulthood. The aim of the present study was to provide Dutch normative data for the SDQ Parent Form.MethodsA sample of 1947 parents with children aged 2–18 years was drawn from a large panel of a Dutch research agency, stratified on Dutch key demographics of the parents.The SDQ Parent Form assesses the child’s Emotional symptoms, Conduct problems, Hyperactivity-Inattention, Peer problems and Prosocial behaviour. Summary scores can be calculated: Internalising, Externalising and Total difficulties.Internal consistency (Cronbach’s alpha coefficient) and normative scores (mean, median, clinical cut-off scores) of the SDQ- Parent Form were calculated in four age-groups 2–3, 4–5, 6–11 and 12–18 years. Gender differences were tested with independent t-tests.ResultsA total of 1174 parents (60.3%) completed the SDQ. In the age-groups 2–3 and 4–5, norm scores are not available for Conduct problems and Peer problems due to insufficient internal consistency. In addition, in age-group 2–3, norm scores for Emotional symptoms and Internalising are not available because of insufficient internal consistency. In the age-groups 6–11 and 12–18, norm scores are available for all scales, with Cronbach’s alpha coefficients 0.53–0.86. The comparison by gender revealed that boys had more behavioural problems than girls (0.000 < p < 0.048), most prevalent for Hyperactivity-Inattention, Peer Problems, Prosocial behaviour, Externalising and Total Difficulties.ConclusionsDutch normative data by age-group and gender are now available for parent-reported SDQ scores in children aged 2–18 years. Due to insufficient internal consistency, normative scores for 2–5 year-old children could not be presented for several SDQ scales. Yet, the SDQ Total score provides a reliable indication of the psychosocial functioning of younger children. In case of high Total scores in children younger than 6 years, alternatively to scale scores, the answers on the individual items could yield useful clinical information about the child’s problems.