Range and Heterogeneity of Outcomes in Randomized Trials of Pediatric Chronic Kidney Disease

Chong, Lauren; Sautenet, Bénédicte; Tong, Allison; Hanson, Camilla S.; Samuel, Susan; Zappitelli, Michael; Dart, Allison; Furth, Susan L.; Eddy, Allison A.; Groothoff, Jaap W.; Webb, Nicholas J.A.; Yap, Hui-Kim; Böckenhauer, Detlef; Sinha, Aditi; Alexander, Stephen I.; Goldstein, Stuart L.; Gipson, Debbie S.; Raman, Gayathri; Craig, Jonathan C.

doi:10.1016/j.jpeds.2017.03.034

Cited by 41 publications

(51 citation statements)

References 66 publications

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“…There is no precise information about the global prevalence of CKD in children; however, studies show that in Europe, there are 11 to 12 cases per million of age-related population (pmarp) [5,6]. CKD in children is associated with cardiovascular complications, and the identification of the causes, especially in children, help improve treatment and prevent progression of the disease [7]. The causes of CKD in children are very different from those in adults [5,8].…”

Section: Introductionmentioning

confidence: 99%

Causes of Chronic Kidney Disease in Iranian Children: A Meta-Analysis and Systematic Review

Shahdadi

Sheyback

Rafiemanesh

et al. 2019

Annals of Global Health

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This study aimed to determine the causes of chronic kidney disease (CKD) in Iranian children. In this systematic review and meta-analysis study, international (PubMed, Web of Science, Scopus, and Google Scholar) and national (SID, Magiran) databases were searched for articles published through December 30, 2017. The quality of the studies was determined using the Hoy instrument. Out of 2,117 initial studies, 13 studies performed on a total of 3,596 children were included in the final stage of the study. Based on the results of the random effects method (95% CI), the main causes of chronic kidney disease in stages 1-4 (CKD) were CAKUT (37%) and glomerulonephritis (19.96%); in stage 5 (ESRD) they were CAKUT (40.82%) and urological disorders (27.44%). Considering the high prevalence of CAKUT, glomerulonephritis and urinary problems, the use of comprehensive approaches can be very effective in enhancing the knowledge of patients about the causes of kidney disease. The results obtained from the present study can assist policymakers in more accurately planning screenings of the causes of CKD in Iranian children.

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Section: Introductionmentioning

confidence: 99%

Causes of Chronic Kidney Disease in Iranian Children: A Meta-Analysis and Systematic Review

Shahdadi

Sheyback

Rafiemanesh

et al. 2019

Annals of Global Health

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“…The challenges in communication and shared decision-making are highly relevant in childhood chronic kidney disease (CKD). Children with CKD have a 30-fold increased risk of mortality compared with the age-matched population, and are at risk of serious comorbidities and impaired quality of life, which can limit their perceived capacity to participate in shared decision-making (3,17). Limited evidence exists on communicating and shared decision-making with children and families dealing with chronic and complex disorders (15,16,18).…”

Section: Introductionmentioning

confidence: 99%

Child and Parental Perspectives on Communication and Decision Making in Pediatric CKD: A Focus Group Study

Gutman

Hanson

Bernays

et al. 2018

American Journal of Kidney Diseases

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Parents value partnership with clinicians and consider long-term and quality-of-life implications of their child's illness. Children with CKD want more involvement in treatment decision making but are limited by vulnerability, fear, and uncertainty. There is a need to support the child to better enable him or her to become a partner in decision making and prepare him or her for adulthood. Collaborative and informed decision making that addresses the priorities and concerns of both children and parents is needed.

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“…The decision regarding choice of outcome measures should be based upon a core outcome set achieved through consensus, such as is the case with The Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials (PedIMMPACT, McGrath et al., ) and The Outcome Measures in Rheumatology (OMERACT, Tugwell et al., ). Although core outcomes in pediatrics are generally lacking (Chong et al., ), OMERACT and PedIMMPACT have contributed to improved trial feasibility (in these populations) and relevance and acceptability of trial endpoints on a global scale (Bertinotti, Nacci, & Matucci‐Cerinic, ; Sinha et al., ). This has not yet been addressed for VA outcomes, and in the context of a registry dataset, standardization of outcome measures and time points would be essential to positively impact the useability of registry data by researchers, clinicians, and health care.…”

Section: Discussionmentioning

confidence: 99%

Building a Global, Pediatric Vascular Access Registry: A Scoping Review of Trial Outcomes and Quality Indicators to Inform Evidence‐Based Practice

Schults

Rickard

Kleidon

et al. 2019

Worldviews Ev Based Nurs

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Background: Internationally, there is a lack of comparative vascular access (VA) data for pediatric clinicians and organizations to benchmark outcomes, evaluate quality initiatives, and improve practice. A VA registry is needed to address these knowledge and data capture gaps.Objectives: To determine the range and heterogeneity of VA outcome measures or quality indicators reported in randomized controlled trials (RCTs) and clinical registries, to inform development of a homogeneous, reliable, minimum dataset for a pediatric VA registry.Methods: Scoping review framework. A systematic search for RCTs reporting VA outcomes in pediatrics and neonates was undertaken in the Cochrane library, EMBASE, CINAHL, PubMed, MEDLINE, and EBSCO using a medical subject headings and key words related to VA and pediatrics. We included RCTs of children (0-18 years) reporting any VA outcome. We identified clinical registries reporting VA data in children (0-18) through web-based searches using key words related to VA and clinical or quality registries. Additional registries were identified through peer consultation. The frequency and scope of outcome measures and quality indicators were extracted from trials and registries and evaluated.Results: From 93 RCTs included, 214 different VA measures were reported, reflecting 14 outcome domains. The most commonly reported outcome domains were insertion (44 RCTs; 47%), noninfectious complications (33 RCTs; 35%), and infectious complications (30 RCTs; 32%). Of the 22 registries identified, VA-associated infection was the main quality indicator routinely collected (12 registries; 55%). Outcomes such as mechanical complications and patientreported outcomes were infrequently collected.Linking Evidence to Action: Vascular access outcomes reported in pediatric and neonatal RCTs are highly heterogeneous. Internationally, clinical registries currently collect minimal VA data with the exception of infection outcomes. A core dataset of reliable, relevant measures to children and clinicians for VA device quality is needed. This will enable a VA registry that facilitates inter-institutional and international benchmarking.

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Range and Heterogeneity of Outcomes in Randomized Trials of Pediatric Chronic Kidney Disease

Cited by 41 publications

References 66 publications

Causes of Chronic Kidney Disease in Iranian Children: A Meta-Analysis and Systematic Review

Causes of Chronic Kidney Disease in Iranian Children: A Meta-Analysis and Systematic Review

Child and Parental Perspectives on Communication and Decision Making in Pediatric CKD: A Focus Group Study

Building a Global, Pediatric Vascular Access Registry: A Scoping Review of Trial Outcomes and Quality Indicators to Inform Evidence‐Based Practice

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