[Show abstract][Hide abstract] ABSTRACT: Highly specialized pediatric medicine provides child-friendly healthcare for children with complex and rare diseases. The creation of models for the structuring and distribution of pediatric competency centers is not coordinated satisfactorily through either national or EU legislative regulations in Europe. Competency centers have evolved mainly spontaneously in all European countries and usually take into account individual needs rather than general societal needs. Here it is not the concept of infrastructure and treatment processes of individual competency centers that have proved to be a problem, but rather their coordination. Consequently, the main problem seems to be that the establishment of child-friendly, regionally balanced and economically viable models has been hampered due to one-sided viewpoints. These all-too-human obstacles are likely to be eliminated by a combination of “bottom up” and “top down” decisions; that is not only do subjective, objective, interactional, and systemic perspectives need to be considered more strongly, but the organization of competency centers as a whole requires responsible socio-economic attitudes of opinion leaders and their cooperation and decisive will for a rapid consensus.
No preview · Article · Aug 2015 · Pädiatrie & Pädologie
[Show abstract][Hide abstract] ABSTRACT: Background
Renal replacement therapy has become available for the majority of patients suffering from severe congenital chronic kidney disease (CKD). Data on the long-term neurocognitive outcome and the impact of early kidney transplantation (KTx) in this setting is unclear.Methods
Neurocognitive outcomes in 15 patients (11 male) with isolated congenital CKD (stage 3-5) requiring KTx at a mean age of 2.8 ±1.3 were assessed at a mean age of 8.3±1.4 years. Patients underwent neurological examination and testing for neuromotor and neurocognitive function using three independent tests.ResultsPre-emptive KTx was performed in 6 patients and 9 patients were dialyzed prior to KTx for a mean period of 11.1 ± 8.6 months. Neuromotor function was abnormal in 8/15 patients. HAWIK III showed a global IQ of 93.5±11.4 (p=0.05) due to a significantly reduced performance IQ of 89.1±11.3 (p<0.01). In 3 patients the global IQ was clinically significantly reduced by > 1 SD to < 85. In patients with neuromotor dysfunction, performance IQ was lower than in patients with normal neuromotor function (83.8 ± 10.2 vs. 96.2 ± 9.0, p=0.04). Time on dialysis was inversely correlated to verbal IQ (r=0.78, p=0.02). Pre-emptive KTx and duration of dialysis treatment less than 3 months was associated with superior neurocognitive outcome.Conclusions
Early (pre-emptive) KTx results in superior long-term neurocognitive outcome in children with severe congenital CKD.This article is protected by copyright. All rights reserved.
No preview · Article · Jan 2015 · Transplant International
[Show abstract][Hide abstract] ABSTRACT: Partizipation dient der Verbesserung der Protektion und Prävention von Krankheit und der Provision einer kindgerechten Gesundheitsversorgung. Die Umsetzung des salutogenen Partizipationsmodells beruht auf internationalen Gesetzesregelungen, die zusammen mit anderen, nationalen Regelungen Rahmenbedingungen schaffen wollen. Partizipation beruht auf bioethischen Grundlagen, die subjektive, objektive, interaktionelle und systemische Sichtweisen berücksichtigen. Partizipation setzt eine sozioethische Haltung der Behandler und ihre Kompetenz in der Kommunikation mit Kindern sowie die Entwicklung von Gesundheitskompetenz bei Kindern voraus. Partizipation von europäischen Kindern in der Medizin hat sich trotz der gesetzlichen Grundlagen bisher nicht ausreichend durchgesetzt. Es ist offensichtlich kein isoliert nationales Problem, sondern eine internationale Herausforderung. Unterschiedliche Länder, Berufsgruppen und Generationen haben verschiedene Vorstellungen von Partizipation. Die Implementierung von Partizipation in der Kindermedizin erfordert nicht nur adäquate Gesetzesregelungen, sondern eine professionelle und soziokulturelle Kompetenz – also Grundhaltung – aller Behandler sowie „empowerment“ von Kindern, um im Rahmen der medizinischen Kooperation einen Konsensus und bessere Heilungsergebnisse zu erzielen.
Full-text · Article · Oct 2014 · Pädiatrie & Pädologie
[Show abstract][Hide abstract] ABSTRACT: Renal involvement in Henoch-Schönlein purpura
Henoch-Schönlein purpura frequently affects the kidneys and can lead to chronic renal insufficiency or end-stage renal disease in severe cases.
As appropriate controlled studies have not been conducted in either children or adults it has not been defined which cases of Henoch-Schönlein purpura nephritis (HSPN) should be treated, when they should be treated and which medication should be selected. In adults the incidence of HSPN is considerably lower than in children and treatment evidence is unlikely to be gained in adults. Even in children the incidence of severe HSPN is low so that randomized controlled treatment studies would require an international multicenter approach.
As there is no consensus regarding the treatment of pediatric HSPN various protocols are used. The different treatment protocols for HSPN as well as the medication recommended in this consensus represent an off label use. The responsibility for the effects and side effects of the medication lies with the prescribing doctor and the treatment should be chosen based on current clinical and scientific knowledge.
The presented consensus evaluates the current literature and derives recommendations for the treatment of HSPN which reflects the expert opinion of the authors. Standardizing the therapy and documentation of the outcome aim at increasing experience with this entity and will allow better evaluation. To this end treatment modalities and long-term outcome of pediatric patients with HSPN are documented in a registry of the Society for Pediatric Nephrology (GPN).
No preview · Article · Jun 2013 · Monatsschrift Kinderheilkunde
[Show abstract][Hide abstract] ABSTRACT: Background:
The attainment of normal growth and maturation remains a major challenge in the management of children and adolescents requiring renal replacement therapy (RRT).
We compared growth and maturation in 384 German children with RRT who were followed between 1998 and 2009 with 732 children who were enrolled in the European Dialysis and Transplant Association (EDTA) Registry from 1985 to 1988; of these children, 78 and 88 %, respectively, were transplanted.
The data on the German patients included in the EDTA registry did not differ significantly from those of the patients from other European countries. Overall, the mean height standard deviation score (SDS) has improved over the past 20 years from -3.03 to -1.80 (p < 0.001). Until the age of 6 years, the difference in height SDS was not significant, whereas it improved significantly in adolescence (-3.40 vs. -1.52; p < 0.001). Significant improvements in the delay of the pubertal growth spurt, age at menarche, bone maturation and body mass index (BMI) were noted in the recent German group compared to the EDTA group (each p < 0.001).
Our findings demonstrate a marked improvement of growth and maturation in paediatric patients on RRT during the past 20 years.
No preview · Article · May 2013 · Pediatric Nephrology
[Show abstract][Hide abstract] ABSTRACT: Western European health systems are not keeping pace with changes in child health needs. Non-communicable diseases are increasingly common causes of childhood illness and death. Countries are responding to changing needs by adapting child health services in different ways and useful insights can be gained through comparison, especially because some have better outcomes, or have made more progress, than others. Although overall child health has improved throughout Europe, wide inequities remain. Health services and social and cultural determinants contribute to differences in health outcomes. Improvement of child health and reduction of suffering are achievable goals. Development of systems more responsive to evolving child health needs is likely to necessitate reconfiguring of health services as part of a whole-systems approach to improvement of health. Chronic care services and first-contact care systems are important aspects. The Swedish and Dutch experiences of development of integrated systems emphasise the importance of supportive policies backed by adequate funding. France, the UK, Italy, and Germany offer further insights into chronic care services in different health systems. First-contact care models and the outcomes they deliver are highly variable. Comparisons between systems are challenging. Important issues emerging include the organisation of first-contact models, professional training, arrangements for provision of out-of-hours services, and task-sharing between doctors and nurses. Flexible first-contact models in which child health professionals work closely together could offer a way to balance the need to provide expertise with ready access. Strategies to improve child health and health services in Europe necessitate a whole-systems approach in three interdependent systems—practice (chronic care models, first-contact care, competency standards for child health professionals), plans (child health indicator sets, reliable systems for capture and analysis of data, scale-up of child health research, anticipation of future child health needs), and policy (translation of high-level goals into actionable policies, open and transparent accountability structures, political commitment to delivery of improvements in child health and equity throughout Europe).
[Show abstract][Hide abstract] ABSTRACT: In 2006, the German Society for Clinical Chemistry and Laboratory Medicine together with the Society of Nephrology founded a working group with the aim to develop diagnostic pathways for the detection and differentiation of renal diseases. Based on existing recommendations, these pathways may be structured to be a basis for implementation into hospital and laboratory information systems. The present paper describes the contents of these pathways regarding glomerular filtration rate, hematuria, leukocyturia and proteinuria.
No preview · Article · Nov 2012 · Clinical laboratory