Validation of Patient-Reported Outcome Measure in Pediatric CKD (PRO-Kid).

Key Points: PRO-Kid is a patient-reported outcome measure of the frequency and burden of symptoms. Higher PRO-Kid scores are associated with lower Pediatric Quality of Life Inventory scores.

Background: Measuring the burden of symptoms that matter most to children and adolescents with CKD is essential for optimizing patient-centered care.

Access to and Health Outcomes of Pediatric Solid Organ Transplantation for Indigenous Children in 4 Settler-colonial Countries: A Scoping Review.

Solid organ transplantation (SOT) is considered the optimal treatment for children with end-stage organ failure; however, increased efforts are needed to understand the gap surrounding equitable access to and health outcomes of SOT for Indigenous children. This scoping review summarizes the literature on the characteristics of access to and health outcomes of pediatric SOT among Indigenous children in the settler-colonial states of Canada, Aotearoa New Zealand, Australia, and the United States. A search was performed on MEDLINE, EMBASE, PsycINFO, and CINAHL for studies matching preestablished eligibility criteria from inception to November 2021.

A Guide for Adult Nephrologists and Hematologists to Managing Atypical Hemolytic Uremic Syndrome and C3 Glomerulopathy in Teens Transitioning to Young Adults.

Atypical hemolytic uremic syndrome and C3 glomerulopathy/immune complex membranoproliferative glomerulonephritis are ultra-rare chronic, complement-mediated diseases with childhood manifestation in a majority of cases. Transition of clinical care of patients from pediatric to adult nephrologists-typically with controlled disease in native or transplant kidneys in case of atypical hemolytic uremic syndrome and often with chronic progressive disease despite treatment efforts in case of C3 glomerulopathy/immune complex membranoproliferative glomerulonephritis-identifies a challenging juncture in the journey of these patients. Raising awareness for the vulnerability of this patient cohort; providing education on disease pathophysiology and management including the use of new, high-precision complement antagonists; and establishing an ongoing dialog of patients, families, and all members of the health care team involved on either side of the age divide will be inevitable to ensure optimal patient outcomes and a safe transition of these patients to adulthood.

Transition of young adult kidney transplant recipients.

Survival of pediatric kidney transplant recipients has improved over the past six decades. However, adolescents and young adults still have the highest graft failure rates of any age group. There is a growing need for well-designed transition programs to ensure the successful integration of young adults into adult society with eventual transfer of care and management in adult transplant centers.

Functional Magnetic Resonance Imaging Findings in Children and Adolescents With Chronic Kidney Disease: Preliminary Findings.

This cross-sectional study provides preliminary findings from one of the first functional brain imaging studies in children with chronic kidney disease (CKD). The sample included 21 children with CKD (ages, 14.4 ± 3.

Development of a patient-reported outcome measure for the assessment of symptom burden in pediatric chronic kidney disease (PRO-Kid).

Background: Chronic kidney disease (CKD) and kidney failure in childhood are associated with significant and life-altering morbidities and lower quality of life. Emerging evidence suggests that management should be guided in part by symptom burden; however, there is currently no standardized assessment tool for quantifying symptom burden in this pediatric population. This study aimed to develop and refine a patient-reported symptom assessment tool for children with CKD/kidney failure (PRO-Kid), to evaluate the frequency and impact of symptoms.

Cost Effectiveness and Impact in Quality of Care of a Pediatric Multidisciplinary Stone Clinic.

Unlabelled: Herein, we assess the cost-effectiveness of a multidisciplinary clinic for children with urinary stones. The clinic's primary goals were to decrease unnecessary visits, imaging, and costs while optimizing the quality of care.

Methods: Between October 2012 and January 2016, children with complex stone disease, previously treated in urology and/or nephrology clinics, were seen at a triannual pediatric combined stone clinic.

Care processes and structures associated with higher medication adherence in adolescent and young adult transplant recipients.

Background: We aimed to identify care processes and structures that were independently associated with higher medication adherence among young transplant recipients.

Methods: We conducted a prospective, observational cohort study of 270 prevalent kidney, liver, and heart transplant recipients 14-25 years old. Patients were ≥3 months post-transplant, ≥2 months post-discharge, and followed in one of 14 pediatric or 14 adult transplant programs in Canada.

Reducing Unnecessary Imaging in Children With Multicystic Dysplastic Kidney or Solitary Kidney.

Background And Objectives: Children with isolated unilateral multicystic dysplastic kidney (MCDK) or congenital solitary kidney (CSK) undergo serial renal ultrasonography with variable frequency until they are transitioned to adult care. A growing body of literature suggests the value of frequent ultrasonography in this population is limited, providing no benefit to overall outcomes. Despite emerging evidence, ultrasound remains overused, resulting in avoidable health care expenditures and unnecessary use of resources.

Kidney disease in children with heart or liver transplant.

Over the past few decades, there has been increasing recognition of kidney disease in children with non-kidney solid organ transplantation. The risk of kidney disease in children undergoing heart or liver transplantation is higher than the general population as the underlying disease and its associated management may directly impair kidney function. Both heart and liver failures contribute to hypoperfusion and kidney ischemia before patients reach the point of transplant.

Association Between Chronic Kidney Disease-Mineral Bone Disease (CKD-MBD) and Cognition in Children: Chronic Kidney Disease in Children (CKiD) Study.

Rationale & Objective: Chronic kidney disease (CKD) in children is associated with cognitive dysfunction that affects school performance and quality of life. The relationship between CKD-mineral and bone disorder and cognitive function in children is unknown.

Study Design: Observational study.

Developing Consensus-Based Outcome Domains for Trials in Children and Adolescents With CKD: An International Delphi Survey.

Rationale & Objective: The inconsistency in outcomes reported and lack of patient-reported outcomes across trials in children with chronic kidney disease (CKD) limits shared decision making. As part of the Standardized Outcomes in Nephrology (SONG)-Kids initiative, we aimed to generate a consensus-based prioritized list of critically important outcomes to be reported in all trials in children with CKD.

Study Design: An online 2-round Delphi survey in English, French, and Hindi languages.

Association of Time-Varying Blood Pressure With Chronic Kidney Disease Progression in Children.

Importance: Optimal blood pressure (BP) management in children with chronic kidney disease (CKD) slows progression to end-stage renal disease. Studies often base progression risk on a single baseline BP measurement, which may underestimate risk.

Objective: To determine whether time-varying BP measurements are associated with a higher risk of progression of CKD than baseline BP measurements.

Brain abnormalities in children and adolescents with chronic kidney disease.

Background: Chronic kidney disease (CKD) is a risk factor for vascular disease and stroke. The spectrum of brain injury and microstructural white matter abnormalities in children with CKD is largely unknown.

Methods: Cross sectional study at two North American pediatric hospitals.

Management and Outcomes of Childhood Renal Artery Stenosis and Middle Aortic Syndrome.

Background: Renal artery stenosis (RAS) in isolation or in conjunction with middle aortic syndrome (MAS) are important vascular causes of childhood hypertension. Few longitudinal studies have assessed the risk of surgical or endovascular intervention, and outcomes by etiology or extent of vascular disease.

Methods: In a retrospective study of 93 children seen over 30 years with RAS and/or MAS, data on vascular involvement (isolated RAS vs.

Cardiovascular Structure and Function in Children With Middle Aortic Syndrome and Renal Artery Stenosis.

Middle aortic syndrome (MAS) is a narrowing of the abdominal aorta, often in conjunction with renal artery stenosis (RAS). Structure and function of the cardiovascular system are not well understood. In a prospective cross-sectional study, 35 children with MAS or RAS or both (MAS/RAS) were compared with 140 age-, sex-, and body surface area-matched healthy children.

Vitamin D insufficiency and deficiency in pediatric renal transplant recipients.

Vitamin D deficiency is prevalent in the pediatric CKD population. Recognizing that renal transplant recipients have CKD, we assessed the prevalence of vitamin D insufficiency and deficiency in pediatric renal transplant recipients, compared to a healthy pediatric population. We prospectively studied 25(OH)D levels in 29 pediatric renal transplant recipients and 45 control patients over one yr.

Disease Beyond the Arch: A Systematic Review of Middle Aortic Syndrome in Childhood.

Background: Middle aortic syndrome (MAS) is a rare clinical entity in childhood, characterized by a severe narrowing of the distal thoracic and/or abdominal aorta, and associated with significant morbidity and mortality. MAS remains a relatively poorly defined disease. This paper systematically reviews the current knowledge on MAS with respect to etiology, clinical impact, and therapeutic options.

Pregnancy outcomes among solid organ transplant recipients in British Columbia.

Objective: Since 1954, over 14 000 women have given birth after having had an organ transplantation. Unfortunately, some women and physicians remain misinformed about the feasibility and outcomes of pregnancy post transplantation. Our primary objective was to assess their perceptions and difficulties with regard to becoming pregnant.

Utility and cost of a renal transplant transition clinic.

Successful transition from paediatric-centred to adult-oriented healthcare positively influences health outcomes for youth with chronic illness. The primary objective is to evaluate outcomes pre- and post provision of multidisciplinary transition clinic (TC) care to renal transplant recipients. We compared patient and allograft survival in renal transplant recipients at British Columbia Children's Hospital who received care within a transition clinic (TC) to a cohort of patients transferred prior to establishment of the TC, pre-TC (PTC) in 2007.

Sleep disturbances in children and adolescents with non-dialysis-dependent chronic kidney disease.

Background: While studies have shown sleep disorders to be common in adults with chronic kidney disease (CKD), pediatric data are scarce.

Objective: To characterize the prevalence of sleep disorders among children and adolescents with non-dialysis-dependent CKD.

Design: Prospective, questionnaire-based, cross-sectional study.

Outcome of kidney transplantation in Canadian Aboriginal children in the province of British Columbia.

Renal transplantation remains the therapy of choice for children and adolescents with ESRD. Differences in graft survival are observed in kidney transplant recipients of different race and ethnicities. Data in pediatric populations are limited and confounded by disparities in access to health care.

Utility of monitoring mycophenolic acid in solid organ transplant patients.

Objectives: To investigate whether monitoring concentrations of mycophenolic acid (MPA) in the serum or plasma of persons who receive a solid organ transplant will result in a lower incidence of transplant rejections and adverse events versus no monitoring of MPA. To investigate whether the incidence of rejection or adverse events differs according to MPA dose or frequency, type of MPA, the form of MPA monitored, the method of MPA monitoring, or sample characteristics. To assess whether monitoring is cost-effective versus no monitoring.