Guidelines for Managing Children on Chronic Dialysis
Guidelines for Managing Children on Chronic Dialysis
Background. Clinical practice guidelines aim to improve the quality of care, yet for users of guidelines it is often not clear how these guidelines were developed and whether the recommendations are robust. We aimed to identify all current published guidelines for the management of children on chronic dialysis, assess the quality of their development and evaluate consistency among their recommendations.
Methods. We searched Medline (1948 to January 2012), and relevant websites of guideline development programmes. Three reviewers appraised all 17 identified guidelines with the Appraisal of Guidelines for Research and Evaluation (AGREE) II instrument.
Results. The guidelines were developed by five different professional associations. The overall mean AGREE II score from seven Kidney Disease Outcomes Quality Initiatives (KDOQI) guidelines was considered sufficient (mean scores 64–75%), and from all other 10 guidelines poor (29–44%). Five out of seven KDOQI guidelines scored weak on applicability. We found important inconsistencies between recommendations concerning initiation of renal replacement therapy, management of haemoglobin level and the use of mupirocin to prevent exit-site infections.
Conclusions. While the recently developed KDOQI guidelines meet the modern quality standards, advice for implementation of these recommendations is lacking. There is an urgent need for international collaboration and coordination to ensure that the management of children on chronic dialysis is informed by relevant and high-quality evidence.
End-stage kidney disease in children is a rare but serious disorder. In the Western world, the yearly incidence rate of end-stage kidney disease in patients younger than 19 years of age is about 6–8 per million, with an overall mortality in young adults about 30 times greater than in healthy age-matched controls. In survivors to adulthood, juvenile end-stage kidney disease has an important impact on somatic and psychosocial functioning in adult life: at least 40% of the adult survivors of end-stage kidney disease with childhood onset suffer daily from somatic comorbidity and about 20% are severely disabled. Despite all the progress that has been made in the technical aspects of chronic renal replacement therapy (RRT), recent data on children on RRT suggest that most of the unfavourable long-term consequences still occur in today's population.
Clinical practice guidelines aim to improve outcomes by optimizing management policies. Several studies have shown that adherence to evidence-based guidelines may indeed improve quality of care, but, for many health conditions, it appears that treatment differs considerably from what has shown to be effective practice. We recently reported a large and unwanted variation in management policies between all units providing dialysis for children in the Netherlands and Belgium, despite the existence of comprehensive guidelines in this field. Previous literature showed that there are several barriers to physician adherence to clinical practice guidelines (e.g. lack of awareness, lack of familiarity, lack of agreement, lack of self-efficacy, lack of outcome expectancy and external barriers). One of the reasons for not following a guideline might be that for most users it is often unclear how the existing guidelines are developed and whether the recommendations are robust.
The aims of this study were to assess the quality of published guidelines for the management of chronic dialysis in children, and evaluate consistency among the recommendations, and possible sources of inconsistency such as the evidence retrieval and appraisal processes.
Abstract and Introduction
Abstract
Background. Clinical practice guidelines aim to improve the quality of care, yet for users of guidelines it is often not clear how these guidelines were developed and whether the recommendations are robust. We aimed to identify all current published guidelines for the management of children on chronic dialysis, assess the quality of their development and evaluate consistency among their recommendations.
Methods. We searched Medline (1948 to January 2012), and relevant websites of guideline development programmes. Three reviewers appraised all 17 identified guidelines with the Appraisal of Guidelines for Research and Evaluation (AGREE) II instrument.
Results. The guidelines were developed by five different professional associations. The overall mean AGREE II score from seven Kidney Disease Outcomes Quality Initiatives (KDOQI) guidelines was considered sufficient (mean scores 64–75%), and from all other 10 guidelines poor (29–44%). Five out of seven KDOQI guidelines scored weak on applicability. We found important inconsistencies between recommendations concerning initiation of renal replacement therapy, management of haemoglobin level and the use of mupirocin to prevent exit-site infections.
Conclusions. While the recently developed KDOQI guidelines meet the modern quality standards, advice for implementation of these recommendations is lacking. There is an urgent need for international collaboration and coordination to ensure that the management of children on chronic dialysis is informed by relevant and high-quality evidence.
Introduction
End-stage kidney disease in children is a rare but serious disorder. In the Western world, the yearly incidence rate of end-stage kidney disease in patients younger than 19 years of age is about 6–8 per million, with an overall mortality in young adults about 30 times greater than in healthy age-matched controls. In survivors to adulthood, juvenile end-stage kidney disease has an important impact on somatic and psychosocial functioning in adult life: at least 40% of the adult survivors of end-stage kidney disease with childhood onset suffer daily from somatic comorbidity and about 20% are severely disabled. Despite all the progress that has been made in the technical aspects of chronic renal replacement therapy (RRT), recent data on children on RRT suggest that most of the unfavourable long-term consequences still occur in today's population.
Clinical practice guidelines aim to improve outcomes by optimizing management policies. Several studies have shown that adherence to evidence-based guidelines may indeed improve quality of care, but, for many health conditions, it appears that treatment differs considerably from what has shown to be effective practice. We recently reported a large and unwanted variation in management policies between all units providing dialysis for children in the Netherlands and Belgium, despite the existence of comprehensive guidelines in this field. Previous literature showed that there are several barriers to physician adherence to clinical practice guidelines (e.g. lack of awareness, lack of familiarity, lack of agreement, lack of self-efficacy, lack of outcome expectancy and external barriers). One of the reasons for not following a guideline might be that for most users it is often unclear how the existing guidelines are developed and whether the recommendations are robust.
The aims of this study were to assess the quality of published guidelines for the management of chronic dialysis in children, and evaluate consistency among the recommendations, and possible sources of inconsistency such as the evidence retrieval and appraisal processes.
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