To achieve optimal outcomes, adolescents with chronic or end-stage kidney disease must undergo healthcare transition (HCT) preparation from a pediatric- to an adult-focused setting. The pediatric nephrology group at the Fundación Valle del Líli in Cali, Colombia, collaborated with the University of North Carolina Chapel Hill STARx Program and Hospital Infantil de México Federico Gómez to start an HCT preparation program using their tools. The objective of this study was to evaluate the efficacy of the "ALL YOU NEED IS LOVE" syllabus (Spanish version) and its effects on HCT readiness in young patients with kidney failure, including renal transplants.

We conducted a pre-test/post-test quasi-experimental study without control group in 11- to 21-year-old consecutive patients with kidney failure followed at the Fundación Valle de Lili. Using the TRxANSITION Index, we measured HCT readiness skills before and after implementing the "ALL YOU NEED IS LOVE" syllabus, an educational curriculum delivered in three monthly 2-hour sessions. Analysis was performed using linear mixed models in R Studio software to evaluate intervention effects while accounting for participant characteristics.

We enrolled 35 patients (57% female, median age 15.4 years [IQR: 12.6-17.1]). Most patients (77%) had received dialysis pre-transplant and 68% had congenital anomalies of the kidneys and urinary tract. Mothers were primary caregivers for 85% of patients. Linear mixed models showed that post-intervention scores increased significantly across all measures (β = 3.28, 95% CI 2.64-3.92, p < 0.001 for transition scores; β = 1.93, 95% CI 1.48-2.38, p < 0.001 for parent scores; β = 9.31, 95% CI 7.66-10.96, p < 0.001 for total scores). College education was associated with higher baseline scores (β = 2.38, 95% CI 0.42-4.35, p = 0.019 for transition scores; β = 7.58, 95% CI 1.23-13.93, p = 0.021 for total scores). Male participants showed slightly lower initial scores (β = - 0.88, 95% CI - 1.76 to 0.00, p = 0.051).

In this cohort of youth with kidney failure from Cali, Colombia, implementation of the Spanish version of the "ALL YOU NEED IS LOVE" syllabus was associated with significant improvements in HCT readiness. Linear mixed models demonstrated robust intervention effects across all domains, with educational level emerging as a significant moderator of intervention effectiveness. Further longitudinal studies are needed to evaluate the long-term impact and sustainability of these improvements in transition readiness scores.

This study was retrospectively registered at ClinicalTrials.gov (NCT06836544, https://clinicaltrials.gov/ct2/show/NCT06836544 ) on February 10, 2025.

Young adults starting kidney replacement therapy (KRT) during childhood and reaching their 18th birthday (i.e. adult survivors of childhood KRT) form a challenging population of interest to nephrologists treating adults, as during this period there will be a transition to adult renal centres. Nonetheless, few studies have focused on the epidemiology of KRT in this group. We aimed to provide an update on these patients' characteristics, treatment history, and graft and patient survival, to report their 5-year prognosis and expected remaining lifetime.

Data on KRT patients reaching their 18th birthday in 2008-19 were collected from 21 European countries/regions providing individual patient data to the European Renal Association (ERA) Registry. Patient characteristics and treatment trajectories were examined before and after turning 18 years old. Kaplan-Meier and Cox proportional hazards regression were used for patient and graft survival analyses.

In total, 2944 patients were included. The proportion of adult survivors initiating KRT at a very young age (0-4 years) and undergoing pre-emptive kidney transplantation increased. Unadjusted 5-year patient survival was 96.9% [95% confidence interval (CI) 96.2-97.5]. Dialysis patients had a higher risk of death than kidney transplant recipients [adjusted hazard ratio 5.44 (95% CI 3.34-8.86)]. Between ages 18 and 23 years, about 21% of the adult survivors lost their kidney transplant and 34% of the dialysis patients continued this treatment. Compared with the general population, life expectancy for 18-year-old kidney transplant and dialysis patients was 17 and 40 years shorter, respectively.

Life expectancy of 18-year-old kidney transplant recipients was lower compared with the general population, yet having a functioning kidney graft at age 18 years resulted in better outcomes than being on dialysis. Nevertheless, between ages 18 and 23 years, about one-fifth of the kidney grafts failed and one-third of the patients remained on dialysis.

There is limited information about psychological distress in adults who underwent kidney replacement therapy (KRT) during childhood. This study aimed to describe psychological distress in adults after KRT during childhood in comparison to the Swiss general population and to evaluate associations with sociodemographic and clinical characteristics.

We sent a questionnaire to 143 people from the Swiss Pediatric Renal Registry (SPRR), who were alive, over 18 years old, started KRT before the age of 18 years, and were German speakers. We measured psychological distress using the Brief Symptom Inventory 18 (BSI-18) and evaluated the Global Severity Index 18 (GSI-18), reflecting the overall level of distress, and the three subscales: depression, somatization, and anxiety. We compared levels of psychological distress to normal data from the Swiss general population and used regression models to identify associations with sociodemographic and clinical characteristics.

Eighty persons with a mean age of 39 years (SD 10.1) responded to the questionnaire (response rate 56%). Overall, the GSI-18 and all subscales of the BSI-18 were similar. Unemployed participants (25%) reported higher levels of somatization and were more likely to experience psychological distress. Participants using psychotropic drugs (14%) reported higher levels of overall psychological distress (10%), depression (13%) and somatization (9%).

Adults after KRT during childhood showed good long-term psychological well-being. These results are encouraging and underline the favorable outcome of these patients. So besides the excellent somatic outcome, these patients can achieve a psychological healthy life after diagnosis of chronic kidney disease.

Use of living donors for kidney transplantation in pediatric recipients provides optimal long-term graft and patient survival; however, it accounts for only 28.5 % of transplants performed in the United States in 2021. Robotic-assisted living donor nephrectomy is shown to be a safe and feasible option, offering enhanced visualization and improved surgical dexterity, allowing for a potential increase in the living donor pool for pediatric kidney transplant recipients, even in cases of grafts with anatomical variants.

We reviewed all pediatric patients (≤18 years of age) that received an open kidney transplant with a robotically procured living donor graft at our institution between October 2022 and July 2023. Recipient and living donor demographics, peri- and post-operative data, and graft characteristics were obtained and analyzed.

Eight pediatric recipients were evaluated. Mean recipient age was 11 years, and seven recipients were male. Four kidney grafts required back-table reconstruction: three underwent vascular reconstruction (two requiring deceased donor vascular grafts as extensions of renal veins; one requiring conjoining of two renal arteries), and one underwent cyst removal. Mean cold and warm ischemia time were 73 and 29 min, respectively. There were no cases of delayed graft function or post-operative vascular or urological complications. Mean serum creatinine value at 1, 3, 6, and 12 months post-transplant was 0.785 mg/dL (N = 8), 0.808 mg/dL (N = 8), 0.818 mg/dL (N = 8) and 0.9 mg/dL (N = 3), respectively.

Our study shows that robotically procured living donor kidney grafts, even with anatomical variants, are a safe and feasible source for pediatric kidney transplantation. Utilization of grafts with vascular abnormalities for transplantation after vascular reconstruction does not appear to increase the risk of developing complications and therefore, can increase the donor pool for pediatric transplant candidates.

Much of the global chronic kidney disease burden is experienced in low- and middle-income countries. Children living with chronic kidney disease (CKD) face medical and social challenges, and they need support at the individual and family levels. This study aimed to explore children's experiences living with kidney replacement therapy (KRT) who attend the largest pediatric nephrology department in Guatemala.

This qualitative study used photovoice and asked children to take pictures that represented what is like to live with CKD. Each child and their caregiver underwent an interview where the photos were used to elicit and facilitate discussion. The interviews were recorded, transcribed, and then analyzed using thematic analysis.

Eight children and their mothers participated in the study. Three themes were identified: interactions with the health system, changing and difficult family dynamics, and strains on social interactions. Children face social challenges including self-isolation and alienation. The family dynamics and familial structures often are forced to change, inducing stress. This is all exacerbated by the difficulties that arise in navigating the Guatemalan health system.

Photovoice techniques are a feasible way to understand the experiences of children and their families who face CKD. The disease affects all aspects of life and recognizing this while advising and administering care can help provide a comprehensive level of care. Health systems need to make efforts aimed at improving the quality of care as well as the multidisciplinary support available to children and their families.

Transplantation is the standard treatment for end-stage kidney disease but carries with it a non-trivial risk of post-operative complication. There is a need for a continuous, real-time, not additionally invasive method of monitoring organ perfusion. We present an approach to allograft perfusion monitoring using a human kidney model using ex vivo normothermic perfusion (EVNP) and custom spectroscopic optical reflectance probes. Five discarded human kidneys underwent EVNP, spectroscopic measurement and were subjected to perfusion compromising events (rejection, thrombosis or haemorrhage). Oxygenated and deoxygenated haemoglobin spectra were fitted to the spectra acquired from the kidneys in order to estimate the oxygen saturation. Average oxygen saturations before the perfusion compromising events were estimated to be higher than after (or similar in the control cases). Changes in oxygen saturation estimated from measurements made continuously were synchronized well with changes in renal blood flow index measurements. This proof of concept study proves promising in identifying a technique for continuous monitoring of perfusion and oxygenation of a transplanted kidney in vivo with minimal additional invasiveness.

Understanding whether symptoms suggestive of chronic kidney disease (CKD) are reported to primary care before diagnosis may provide opportunities for earlier detection, thus supporting strategies to prevent progression and improve long-term outcomes. Our aim was to determine whether symptoms/signs or consultation frequency recorded in primary care could predict a subsequent diagnosis of chronic kidney disease in children.

We undertook a case-control study within Clinical Practice Research Datalink. Cases were children <21 years with an incident code for severe CKD during the study period (January 2000-September 2018). Controls were matched on age (+/-3 years), sex, and practice-level kidney function testing rate. Conditional logistic regression modelling was used to identify symptoms predictive of severe CKD and differences in consultation frequency in 24- and 6-month timeframes before the index date.

Symptoms predictive of severe CKD in the 24 months before the index date included growth concerns (OR 7.4, 95% CI 3.5, 15.4), oedema (OR 5.7, 95% CI 2.9, 11.2) and urinary tract infection (OR 3.3, 95% CI 2.1, 5.4); within 6 months of the index date, effect estimates and specificity strengthened although sensitivity decreased. Overall, positive predictive value of symptoms was low. Cases consulted more frequently than controls in both timeframes. In combination, symptoms and consultation frequency demonstrated modest discrimination for CKD (c-statistic after bootstrapping 0.70, 95% CI 0.66, 0.73).

Despite increased consultation frequency and several symptoms being associated with severe chronic kidney disease, the positive predictive value of symptoms is low given disease rarity making earlier diagnosis challenging.

This study aimed to assess the risk factors for complications post-Tenckhoff catheter implantation in paediatric patients. All records of children who underwent the procedure from 2002 to 2022 at the University Medical Centre of Hamburg were analyzed. The demographic and anthropometric characteristics were scrutinized, with particular attention given to complications such as catheter leakage, occlusions, and peritonitis. Univariate and multivariate analyses were employed to determine the hazard ratios for complications. In total, 299 implantations were performed in 116 females and 130 males; 67% were under 5 years old, and 85% had renal disease. Fifty-one percent needed an acute catheter insertion, 26% of the patient's required revision, and 24% of the patients experienced peritonitis. Neonates had a 22% mortality rate, and infants had a 37% reimplantation rate. Compared with the other subgroups, a glomerular filtration rate of 15-29 ml/kg/1.7 3m2 was associated with a 10.7-fold higher risk of peritonitis. Male patients had a threefold greater chance of reimplantation or inguinal hernia. Omentectomy revealed no increased risk of peritonitis, and only two catheter occlusions were observed. Patients with inguinal hernias or gastric tubes had higher odds of complications (HR = 3.60, p = 0.003 and OR = 2.47, p = 0.014). Neither the implantation side nor acute insertion was correlated with complications.

Infants, male patients with kidney disease, prolonged use of catheter, and those with a GFR of 15-29 ml/kg/1.73 m2 were at increased risk. The presence of peritonitis, inguinal hernia, and gastric tubes were adverse prognostic factors.

• Omentectomy can serve as a protective factor and correlates with a lower incidence of catheter malfunction. • The insertion of gastric tubes is commonly associated with complications but has lower risk of complications if inserted prior to the initiation of peritoneal dialysis.

• Males have been found to have a 2.14 hazard ratio for revision in both acute and chronic peritoneal dialysis groups. • The incidence of revisions seems to be greater in the first 36 months, while the incidence of peritonitis rises by 7% for each additional year of age.

Current kidney transplant (KT) policies offer advantages in waiting time and organ allocation priority to pediatric patients waitlisted before 18 years old. This study evaluates the effects of this policy for patients who are on dialysis before, but not waitlisted until after, age 18.

Patients aged 11-25 years and waitlisted between 2001 and 2022 for KT were identified in the OPTN STAR data file for analysis. Cohorts were defined by age and dialysis status at time of listing: Peds if < 18 yo, young adult (YA) if ≥ 18 yo; NYOD-not yet on dialysis or OD-on dialysis at time of listing, with YA groups further segregated by age at dialysis initiation. Cumulative incidence of transplant was calculated for waitlisted patients. Graft survival was assessed using Kaplan-Meier analysis and multivariable Cox proportional hazards modeling. p values < 0.01 were significant.

Amongst 35 764 KT registrations, candidates who initiated dialysis as pediatric patients but were not waitlisted until after turning 18 years old (YA + OD < 18) have the highest rate of nontransplantation (33.5%) and longest time on dialysis (median: 2103 days) before deceased donor (DD) KT. YA + OD < 18 patients were sixfold less likely than Peds + OD patients to undergo DDKT at 5 years after listing. YA + OD < 18 recipients had the worst post-KT graft survival of all groups at 5 years with adjusted hazard ratio of 1.477 (95% confidence interval: 1.218-1.792) compared to Peds-NYOD (p < 0.001).

Current allocation policies significantly disadvantage candidates who initiate dialysis before, but are not listed until after age 18, and should be re-examined to address these inequities.

Intensive blood pressure (BP) control in youth with chronic kidney disease (CKD) slows progression, delaying the need for kidney replacement therapy (KRT). Most youth with CKD have hypertension and BP control is difficult to achieve outside of controlled experimental settings. Implementing effective BP control strategies in this population may be cost-saving despite requiring additional resources. Our objective was to determine the economic and clinical impact of intensive versus usual care for BP management in youth with CKD in a microeconomic model.

We developed a decision tree from the US payer perspective to estimate the total costs and clinical effect of an intensified BP intervention over 5 years, modeled after the ESCAPE trial (Effect of Strict Blood Pressure Control and Angiotensin-Converting Enzyme [ACE] Inhibition on Progression of Chronic Renal Failure in Pediatric Patients) protocol. We compared this intervention to usual care in a hypothetical population of youth with mild-to-moderate CKD. Probabilities were informed by published literature; cost estimates were informed by publicly available data. Our outcomes were the net discounted cost of an intensive BP intervention, number needed to treat with the intervention to prevent 1 KRT episode, and incremental cost per KRT episode avoided.

An intensive BP intervention, with a goal of an average 24-hour mean arterial pressure <50th percentile, improved outcomes with net cost savings of $9440 per participant over 5 years compared with usual care. To prevent 1 episode of KRT over 5 years, 13 participants need to receive intensive BP intervention.

Routine use of the ESCAPE protocol for intensive BP control in youth with CKD could save overall costs for the payer and improve clinical outcomes.

Patients after kidney transplantation (KTx) in childhood show a high prevalence of cardiac complications, but the underlying mechanism is still poorly understood. In adults, myocardial fibrosis detected in cardiovascular magnetic resonance (CMR) imaging is already an established risk factor. Data for children after KTx are not available. This study aimed to explore cardiac function and structure with focus on myocardial fibrosis and associated risk factors in KTx recipients.

Forty-six KTx recipients (mean age 16.0 ± 3.5 years) and 46 age- and sex-matched healthy controls were examined with non-contrast CMR imaging. Native T1 time (nT1), a marker for myocardial fibrosis, was measured at the interventricular septum. Other parameters comprised left ventricular mass index (LVMI), left ventricular ejection fraction (LVEF), and global longitudinal strain (GLS). Multivariable linear regression analyses were used to explore associations with nT1.

Mean nT1 was significantly higher in KTx recipients compared to controls (1198.1 ± 48.8 vs 1154.4 ± 23.4 ms, p < 0.0001). 46% (21/46) had a nT1 above the upper limit of the normal range (mean + 2 standard deviations of controls). KTx recipients showed higher LVMI z-scores (0.1 ± 1.1 vs -0.3 ± 0.7, p = 0.026), higher LVEF (67.3 ± 3.8% vs 65.3 ± 3.6%, p = 0.012), and lower GLS (-19.0 ± 2.1% vs -20.3 ± 2.7%, p = 0.010). Higher systolic blood pressure (ß = 1.284, p = 0.001), LVMI (ß = 1.542, p < 0.001), and LVEF (ß = 3.535, p = 0.026) were associated with longer nT1 only in KTx recipients, but not in controls. Only 2 KTx recipients exhibited left ventricular hypertrophy; however, a total of 18 displayed elevated nT1 with LVMI z-score within the normal range.

Our data suggest the presence of cardiac remodeling with myocardial fibrosis in a significant proportion of young KTx recipients. Non-contrast CMR imaging has the potential to visualize early structural cardiac changes and could become an important diagnostic adjunct in the follow-up of KTx recipients. Longitudinal studies are needed to further evaluate the importance of nT1 in early identification of those at high risk for sudden cardiac death allowing to integrate preventive strategies.

Children with Wilms tumor can rarely experience late relapse of disease. Sometimes bilateral nephrectomy is necessary; as a consequence, the patient needs hemodialysis while waiting for renal transplantation. The waiting time to transplantation after cancer has always been a debated issue.

We present 2 cases of late relapse of Wilms tumor who underwent bilateral nephrectomy. Patient 1 was put in the attending list for renal transplant after 5 years to stop treatment, attending the conventional time; however, she died before transplant because of complications in SARS-COVID-19 infection. Patient 2 underwent a renal transplant sooner compared to the conventional time, improving her quality of life and alive.

If bilateral nephrectomy is necessary in oncological patients, the timing of renal transplant should be discussed by multidisciplinary team. In our cases, the different time to renal transplantation was associated with different outcomes. Clinicians should have common lines about the time of renal transplantation in pediatric oncology; however, a personalized planning could be suggested after discussion among specialists, evaluating case to case. The presented field needs more knowledge and further larger case series are necessary to evaluate outcome related to the timing of renal transplant; in this view, collaboration between oncology centers is strongly required.

Kidney failure at any age has a significant impact on quality of life (QoL) but the overall symptom burden for children and young people (CYP) is poorly described. Kidney failure has no cure and whilst transplantation is the preferred management option, it is not always possible, with patients requiring supportive care at the end of their lives.

To use the literature to understand the symptom burden for CYP with kidney failure who are approaching end-of-life.

Using three databases, a systematic literature review was performed to identify eligible studies to extract data on symptoms experienced in CYP aged < 21 years with kidney failure. Data extraction was completed by two authors using a pre-designed proforma. Study quality assessment was undertaken using the BMJ AXIS tool.

A total of 20,003 titles were screened to yielding 35 eligible studies including 2,862 CYP with chronic kidney disease (CKD), of whom 1,624 (57%) had CKD stage 5. The studies included a median of 30 (range 7-241) patients. Symptoms were subcategorised into eight groups: sleep, mental health, gastrointestinal, dermatology, ear, nose and throat (ENT), neurology, multiple symptoms, and ophthalmology. The prevalences of the most commonly reported symptoms were: restless leg syndrome 16.7-45%, sleep disordered breathing 20-46%, hypersomnia 14.3-60%, depression 12.5-67%, anxiety 5.3-34%, overall gastrointestinal symptoms 43-82.6%, nausea and vomiting 15.8-68.4%, abdominal pain 10.5-67.4%, altered appetite or anorexia 19-90%, xerosis 53.5-100%, pruritis 18.6-69%, headache 24-76.2% and ophthalmological symptoms 26%. Within each subgroup, the symptom definitions used were heterogeneous, the methods of assessment were varied and some symptoms, such as pain and constipation, were poorly represented.

There is a marked lack of evidence relating to the symptom burden for CYP with CKD. This study highlights the high symptom prevalence, particularly in relation to sleep, mental health, headache, dermatological and gastrointestinal symptoms. There is a need for consensus recommendations on the evaluation and management of symptoms for CYP with CKD approaching end-of-life.

CRD42022346120.

Despite a substantial global improvement in infant and child mortality from communicable diseases since the early 1990s there is now a growing burden of chronic disease in children and adolescents worldwide, mimicking the trend seen in the adult population. Chronic diseases in children and adolescents can affect all aspects of their well-being and function with these burdens and their health-related consequences often carried into adulthood. Up to one third of disability-adjusted life years for children and adolescents globally are a result of chronic disease. This has profound implications for the broader family unit, communities, and health systems in which these children and young people reside. Models of chronic care delivery for children and adolescents with chronic disease have traditionally been adapted from adult models. There is a growing recognition that children and adolescents with chronic diseases have a unique set of healthcare needs. Their needs extend beyond disease education and management appropriate to the developmental stage of the child, to encompass psychological well-being for the entire family and a holistic care approach focusing on the social determinants of health. It is for this reason that patient navigators have been proposed as a potential intervention to help fulfil this critical healthcare gap. Patient navigators are trained medical or non-medical personnel (e.g. lay health workers, community health workers, nurses, or people with lived experience) who provide guidance for the patients (and their primary caregivers) as they move through complex (and often bewildering) medical and social systems. The navigator may deliver education, help to co-ordinate patient care, be an advocate for the patient (and their primary caregivers), or combinations of these. Patient navigators can assist people with a chronic illness (especially those who are vulnerable or from a marginalised population, or both) to better understand their diagnoses, treatment options, and available resources. As there is considerable variation in the purpose, design, and target population of patient navigator programmes, there is a need to systematically review and summarise the existing literature on the effectiveness of navigator programmes in children and young adults with chronic disease.

To assess the effectiveness of patient navigator programmes in children and adolescents with chronic diseases.

We searched the Cochrane Library and Epistemonikos up to 20 January 2023 for related systematic reviews using search terms relevant to this review. We searched CENTRAL, MEDLINE, Embase, CINAHL EBSCO, conference proceedings, the International Clinical Trials Register (ICTRP) Search Portal, and ClinicalTrials.gov for primary studies.

We included randomised controlled trials reporting the effect of patient navigator interventions on children and adolescents (aged 18 years or younger) with any chronic disease in hospital or community settings. Two review authors independently assessed the retrieved titles and abstracts, and where necessary, the full text to identify studies that satisfied the inclusion criteria.

Two review authors extracted data using a standard data extraction form. We used a random-effects model to perform a quantitative synthesis of the data. We used the I² statistic to measure heterogeneity amongst the studies in each analysis. We indicated summary estimates as mean differences (MD), where studies used the same scale, or standardised mean differences (SMD), where studies used different scales, with 95% confidence intervals (CI). We used subgroup and univariate meta-regression to assess reasons for between-study differences. We used the Cochrane RoB 1 tool to assess the methodological quality of the included studies. We used GRADE to assess the certainty of the evidence.

We included 17 studies (2895 randomised participants). All studies compared patient navigators with standard care. Most studies were at unclear or high risk of bias. Meta-analysis was undertaken only for those studies that had the same duration of patient navigator intervention and follow-up/reporting of outcome measures. The evidence is very uncertain about the effects of patient navigator programmes compared with standard care on self-reported quality of life of children with chronic illness (SMD 0.63, 95% CI -0.20 to 1.47; I2 = 96%; 4 studies, 671 participants; very low-certainty evidence); parent proxy-reported quality of life (SMD 0.09, 95% CI -2.21 to 2.40; I2 = 99%; 2 studies, 309 participants; very low-certainty evidence); or parents' or caregivers' quality of life (SMD -1.98, 95% CI -4.13 to 0.17; I2 = 99%; 3 studies, 757 participants; very low-certainty evidence). It is uncertain whether duration of patient navigator intervention accounts for any of the variances in the changes in quality of life. The evidence is very uncertain about the effects of patient navigator programmes compared with standard care on the number of hospital admissions (MD -0.05, 95% CI -0.34 to 0.23; I2 = 99%; 2 studies, 381 participants; very low-certainty evidence) and the number of presentations to the emergency department (MD 0.06, 95% CI -0.23 to 0.34; I2 = 98%; 2 studies, 381 participants; very low-certainty evidence). Furthermore, it is unclear whether patient navigator programmes reduce the number of missed school days as data were sparse (2 studies, 301 participants). Four studies (629 participants) reported data on resource use. However, given the variation in units of analysis used, meta-analysis was not possible (very low-certainty evidence). All studies reported cost savings or quality-adjusted life year improvement (or both) in the patient navigation arm. No studies reported on adverse events (specifically, abuse of any type against the navigator, the patient, or their family members).

There is insufficient evidence at present to support the use of patient navigator programmes for children and adolescents with chronic diseases. The current evidence is based on limited data with very low-certainty evidence. Further studies are likely to significantly change these results.

Cardiovascular disease is the most common cause of mortality across the lifespan of children with chronic kidney disease (CKD). Hypertension is a common and important contributor, but other factors such as obesity, dyslipidemia and mineral bone disease play a role. This narrative review focusses on studies published in the past five years that have investigated hypertension and cardiovascular risk among children with CKD.

Cohort studies such as Chronic Kidney Disease in Children (CKiD) and Cardiovascular Comorbidity in Children with CKD (4C) have continued to develop our understanding of blood pressure (BP) phenotypes, and of progressive changes in the structure and function of the heart and blood vessels occurring in children with CKD. Metabolic risk factors, such as dyslipidemia, may represent an under-recognized component of care. Trial data are less common than observational evidence, but support lifestyle interventions currently used, mainly the low sodium dietary approaches to stop hypertension (DASH) diet. The findings of the recently reported Hypertension Optimal Treatment in Children with Chronic Kidney Disease trial (HOT-KID) are described in relation to the use of office BP treatment targets. Cardiovascular health is critical to the long-term outcomes of children with CKD. Recognizing and treating hypertension remains a critical component to improving outcomes, along with measures to improve concurrent cardiovascular risk factors. Some cardiovascular changes may not be reversible with transplantation and further research is needed for children at all stages of CKD.

The American Pediatric Surgical Association Outcomes and Evidence-Based Practice Committee conducted a systematic review to describe the epidemiology of venous thromboembolism (VTE) in pediatric surgical and trauma patients and develop recommendations for screening and prophylaxis.

The Medline (Ovid), Embase, Cochrane, and Web of Science databases were queried from January 2000 through December 2021. Search terms addressed the following topics: incidence, ultrasound screening, and mechanical and pharmacologic prophylaxis. The Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines were followed. Consensus recommendations were derived based on the best available literature.

One hundred twenty-four studies were included. The incidence of VTE in pediatric surgical populations is 0.29% (Range = 0.1%-0.48%) and directly correlates with surgery type, transfusion, prolonged anesthesia, malignancy, congenital heart disease, inflammatory bowel disease, infection, and female sex. The incidence of VTE in pediatric trauma populations is 0.25% (Range = 0.1%-0.8%) and directly correlates with injury severity, major surgery, central line placement, body mass index, spinal cord injury, and length-of-stay. Routine ultrasound screening for VTE is not recommended. Consider sequential compression devices in at-risk nonmobile, pediatric surgical patients when an appropriate sized device is available. Consider mechanical prophylaxis alone or with pharmacologic prophylaxis in adolescents >15 y and post-pubertal children <15 y with injury severity scores >25. When utilizing pharmacologic prophylaxis, low molecular weight heparin is superior to unfractionated heparin.

While VTE remains an infrequent complication in children, consideration of mechanical and pharmacologic prophylaxis is appropriate in certain populations.

Systematic Review of level 2-4 studies.

Level 3-4.

Live donor kidney transplantation is considered the optimal choice for renal replacement therapy, providing established benefits, such as superior patient survival and improved quality of life. However, immunological challenges, including ABO blood group incompatibility and, particularly, donor-specific HLA antibodies, may impact long-term outcomes considerably or even prevent safe direct transplantation with the intended donor.

In this review, the authors discuss kidney paired donation (KPD) as a viable strategy to overcome immunological barriers to living donation through organ exchanges. We thereby lay special focus on the Czech-Austrian transnational KPD program.

While the benefits of KPD programs are well established for adult recipients, recent data suggest that this may hold true also for pediatric patients. Complex algorithms, considering factors like the intricate patterns of HLA sensitization, play a pivotal role in predicting suitable matches, but for pediatric patients also non-immunological factors including age and weight match may play a role. As pool size proves crucial for program efficacy, several countries in Europe have now initiated transnational collaborations to maximize match rates. Among those, the Czech-Austrian transnational joint program, established in 2015 and now expanded to a cooperation with the Israel transplant program to further increase transplant rates, represents a successful example.

KPD programs, with their innovative approaches and international partnerships, hold promise for enhancing outcomes and addressing the increasing demand for kidney transplantation.

This study evaluated parenting stress, anxiety, and depression symptoms and their associated factors in parents of children with chronic kidney disease (CKD).

This cross-sectional study compared parents of patients with CKD (0-18 years) with a matched control group of parents of healthy children. Both groups completed the Parenting Stress Index - Short Form, the Hospital Anxiety and Depression Scale, and a sociodemographic questionnaire.

The study group consisted of 45 parents (median age 39; 32 mothers) of CKD patients (median age 8; 36% female). Nearly 75% of children had CKD stages 2, 3, or 4, and 44.5% had congenital anomaly of the kidney and urinary tract. Five children (11%) were on dialysis, and 4 (9%) had a functioning kidney graft. Compared with parents of healthy children, more stress and anxiety symptoms were reported. Since the CKD diagnosis, 47% of parents perceived a deterioration of their own health, and 40% reduced work on a structural basis. Higher levels of stress, anxiety, and depression symptoms were associated with a more negative perception of own health, and more child medical comorbidities and school absence.

This study showed higher levels of parenting stress and anxiety symptoms in parents of children with CKD compared with parents of healthy children. This was associated with a less positive perception of their own health, especially if the child had more medical comorbidities or more absence from school. Psychosocial interventions to reduce the parental burden should be integrated in the standard care of pediatric nephrology departments.

Kidney transplantation with minimal or no dialysis exposure provides optimal outcomes for children with end-stage kidney disease. We sought to understand disparities in timely access to transplant waitlisting.

We conducted a retrospective, registry-based cohort study of candidates ages 3 to 17 added to the US kidney transplant waitlist 2015 to 2019. We defined "preemptive waitlisting" as waitlist addition before receiving dialysis and compared demographics of candidates based on preemptive status. We used competing risk regression to determine the association between preemptive waitlisting and transplantation. We then identified waitlist additions age >18 who initiated dialysis as children, thereby missing pediatric allocation prioritization, and evaluated the association between waitlisting with pediatric prioritization and transplantation.

Among 4506 pediatric candidates, 48% were waitlisted preemptively. Female sex, Hispanic ethnicity, Black race, and public insurance were associated with lower adjusted relative risk of preemptive waitlisting. Preemptive listing was not associated with time from waitlist activation to transplantation (adjusted hazard ratio 0.94, 95% confidence interval 0.87-1.02). Among transplant recipients waitlisted preemptively, 68% had no pretransplant dialysis, whereas recipients listed nonpreemptively had median 1.6 years of dialysis at transplant. Among 415 candidates initiating dialysis as children but waitlisted as adults, transplant rate was lower versus nonpreemptive pediatric candidates after waitlist activation (adjusted hazard ratio 0.54, 95% confidence interval 0.44-0.66).

Disparities in timely waitlisting are associated with differences in pretransplant dialysis exposure despite no difference in time to transplant after waitlist activation. Young adults who experience delays may miss pediatric prioritization, highlighting an area for policy intervention.

Kidney transplantation (KTx) from small donors is associated with inferior graft survival in registry studies, whereas single-center studies show favorable results.

We compared 175 pediatric KTx from small donors ≤20 kg (SDKTx) with 170 age-matched recipients from adult donors (ADKTx) from 20 centers within the Cooperative European Paediatric Renal Transplant Initiative registry. Graft survival and estimated glomerular filtration rate (eGFR) were analyzed by Cox regression and mixed models. Detailed data on surgical and medical management were tested for association with graft survival.

One-year graft survival was lower after SDKTx compared with ADKTx (90.9% versus 96.5%; odds ratio of graft loss, 2.92; 95% confidence interval [CI], 1.10-7.80; P  = 0.032), but 5-y graft survival was comparable (90.9% versus 92.7%; adjusted hazard ratio of graft loss 1.9; 95% CI, 0.85-4.25; P  = 0.119). SDKTx recipients had an annual eGFR increase of 8.7 ± 6.2 mL/min/1.73 m² compared with a decrease of 6.9 ± 5.7 mL/min/1.73 m² in ADKTx recipients resulting in a superior 5-y eGFR (80.5 ± 25.5 in SDKTx versus 65.7 ± 23.1 mL/min/1.73 m² in ADKTx; P  = 0.008). At 3 y posttransplant, eGFR after single SDKTx was lower than after en bloc SDKTx (86.6 ± 20.4 versus 104.6 ± 35.9; P  = 0.043) but superior to ADKTx (68.1 ± 23.9 mL/min/1.73 m²). Single-kidney SDKTx recipients had a lower rate of hypertension at 3 y than ADKTx recipients (40.0% versus 64.7%; P  = 0.008).

Compared with ADKTx, 5-y graft function is superior in SDKTx and graft survival is similar, even when performed as single KTx. Utilizing small donor organs, preferably as single kidneys in experienced centers, is a viable option to increase the donor pool for pediatric recipients.

Tetralogy of Fallot is the most common cyanotic congenital heart disease. This severe disorder of cardiac physiology can impair renal function and lead to the development of cardiorenal syndrome and eventually to end-stage renal disease. Kidney transplantation may be the best option for renal replacement treatment in patients with tetralogy of Fallot, but only after correcting cardiac abnormalities and optimizing cardiac functions, all of which require a multidisciplinary approach. We report the first case of kidney transplantation in an adolescent patient with tetralogy of Fallot. Our findings confirms that kidney transplantation is a valuable treatment option in selected congenital heart disease cases.

To assess differences between Aboriginal and Torres Strait Islander and non-Indigenous Australian children and young adults in access to and outcomes of kidney transplantation.

A cohort study based on prospectively collected data; analysis of Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) data.

Children and young adults aged 0-24 years who commenced kidney replacement therapy in Australia during 1963-2020.

Proportions of children and young adults who received kidney transplants within five years of commencing dialysis; 5- and 10-year death-censored graft survival; and 5- and 10-year survival of children and young adults who received kidney transplants or who remained on dialysis.

During 1963-2020, 3736 children and young adults received kidney replacement therapy in Australia: 213 (5.8%) Aboriginal and Torres Strait Islander and 3523 (94.2%) non-Indigenous children and young adults. During follow-up (median, eight years; interquartile range [IQR], 2.6-15 years), 2762 children and young adults received kidney transplants: 93 Aboriginal and Torres Strait Islander (43.7% of those receiving kidney replacement therapy) and 2669 non-Indigenous children and young adults (75.8%). Smaller proportions of Aboriginal and Torres Strait Islander than of non-Indigenous children and young adults received transplants within five years of commencing dialysis (99, 46% v 2924, 83.0%), received living donor transplants (19, 20% v 1170, 43.9%), or underwent pre-emptive transplantation (one, 1.1% v 363, 13.6%). Five-year graft survival for Aboriginal and Torres Strait Islander recipients was similar to non-Indigenous recipients (61% v 75%; adjusted hazard ratio [aHR], 1.43; 95% confidence interval [CI], 0.02-2.05), but 10-year graft survival was lower (35% v 61%; aHR, 1.69; 95% CI, 1.25-2.28). Five- and 10-year survival after kidney transplantation was similar for Aboriginal and Torres Strait Islander and non-Indigenous people. Among those who remained on dialysis, 10-year survival was poorer for Aboriginal and Torres Strait Islander than non-Indigenous children and young adults (aHR, 1.50; 95% CI, 1.08-2.10).

Five-year graft and recipient survival were excellent for Aboriginal and Torres Strait Islander children and young adults who received kidney transplants; however, a lower proportion received transplants within five years of dialysis initiation, than non-Indigenous children and young adults. Improving transplant access within five years of dialysis commencement should be a priority.

We aimed to compare the outcomes of pediatric kidney transplantation (KT) between preemptive KT (PEKT) and non-PEKT in children aged < 6 years. Seventy-four pediatric recipients aged < 6 years who underwent KT were divided into the PEKT and non-PEKT groups. They were retrospectively evaluated for patient and graft survival, graft function, growth, and cytomegalovirus (CMV) infection. Comparison of the groups (PEKT, n = 14; non-PEKT, n = 60) revealed no significant differences between them in terms of distribution of sex, age, weight, primary disease, or population of pre-transplant CMV immunoglobulin G-positive patients. The median estimated glomerular filtration rate before KT in the PEKT and non-PEKT groups was 11.4 and 7.3 (mL/min/1.73 m2) (P < .001), respectively, and the median duration of dialysis was 2.7 years in the non-PEKT group. Graft survival at 5 years was 100% and 95% in the PEKT and non-PEKT groups, respectively (P = .634). One patient in the non-PEKT group had vascular complications, with subsequent early graft loss. Incidence of CMV infection was significantly lower in the PEKT group (P = .044). There were no significant differences in post-transplant estimated glomerular filtration rate, acute rejection, or growth. The height standard deviation score showed catch-up growth after KT in both groups. There was no significant difference in transplant outcomes in recipients aged < 6 years, with or without pre-transplant dialysis, except for the incidence of CMV infection. Therefore, PEKT in younger children should be performed aggressively by experienced multi-disciplinary teams.

Children requiring kidney replacement therapy experience high burden of cardiovascular (CV) disease leading to increased mortality. Intima-media thickness (IMT) indicating atherosclerosis is a validated surrogate marker for future CV events.

We investigated the effect of different treatment modalities (dialysis, preemptive kidney transplantation (KTx), late KTx after dialysis) on IMT by multivariable linear mixed-effect modeling. Patients were enrolled in a prospective cohort study.

A total of 261 analyzed children had a mean follow-up of 3 y. Children after preemptive and late KTx had lower levels of IMT when compared with dialysis. Using an interaction term, a significant progression of IMT over time was seen during dialysis (β = 0.0053 mm/y, P   =  0.004). IMT before the start of therapy was the most influential determinant in all models. Low IMT was associated with maintenance steroid treatment after preemptive KTx. High IMT on dialysis was associated with higher systolic blood pressure, lower body mass index, lower serum albumin, and lower bicarbonate.

IMT remained rather stable in children several years after KTx. In contrast, children on dialysis had higher IMT values, which increased over time. In these children, blood pressure control, calorie and protein intake, and acid-base homeostasis seem important. Taken together, children might profit from early transplantation to limit accumulation of CV risk.

Kidney transplantation remains the treatment of choice for children with kidney failure (KF). In South Africa, kidney replacement therapy (KRT) is restricted to children eligible for transplantation. This study reports on the implementation of the Paediatric Feasibility Assessment for Transplantation (pFAT) tool, a psychosocial risk score developed in South Africa to support transparent transplant eligibility assessment in a low-resource setting.

Single-center retrospective descriptive analysis of children assessed for KRT using pFAT tool from 2015 to 2021.

Using the pFAT form, 88 children (median [range] age 12.0 [1.1 to 19.0] years) were assessed for KRT. Thirty (34.1%) children were not listed for KRT, scoring poorly in all domains, and were referred for supportive palliative care. Fourteen of these 30 children (46.7%) died, with a median survival of 6 months without dialysis. Nine children were reassessed and two were subsequently listed. Residing >300 km from the hospital (p = .009) and having adherence concerns (p = .003) were independently associated with nonlisting. Of the 58 (65.9%) children listed for KRT, 40 (69.0%) were transplanted. One-year patient and graft survival were 97.2% and 88.6%, respectively. Only one of the four grafts lost at 1-year posttransplant was attributed to psychosocial issues.

Short-term outcomes among children listed using the pFAT form are good. Among those nonlisted, the pFAT highlights specific psychosocial/socioeconomic barriers, over which most children themselves have no power to change, which should be systemically addressed to permit eligibility of more children and save lives.

Acknowledging the importance of preparing the pediatric dialysis patient for successful transfer to adult providers, centers from the Standardizing Care to Improve Outcomes in Pediatric End Stage Renal Disease (SCOPE) Dialysis Collaborative developed transition tools and performed iterative implementation of a transition of care (TOC) program to gain real-life insight into drivers and barriers towards implementation of a transition program for patients receiving dialysis.

A TOC innovation workgroup was developed in 2019 from within SCOPE Collaborative that developed nine educational modules, along with introductory letter and assessment tool to be utilized by SCOPE centers. A 4-month pilot implementation study among six centers of varying patient population (age ≥ 11 years) was performed. TOC tools were further refined, and broader implementation within the collaborative was performed. Interim assessment of TOC tool utilization and implementation success was performed among 11 centers, as a foundation towards broader discussion regarding process, barriers, and success towards TOC implementation among 26 centers.

Transition champion was a key driver of successful implementation, and lack of institutional support and collaboration with adult dialysis centers were important barriers towards sustainability. COVID pandemic and increased staff turnover affected longer term implementation of TOC program.

Successful transition and transfer of adolescents/young adults with kidney failure on dialysis remains a challenge. This study represents the experience of the largest cohort of pediatric dialysis centers, with diversity in population size and geography, towards development and implementation of a TOC program. This adds to the resources available to assist centers towards transition and transfer, with particular focus on transitioning patients on dialysis.

Disadvantaged socioeconomic position (SEP) is an important predictor of poor health in children with chronic kidney disease (CKD). The time course over which SEP influences the health of children with CKD and their carers is unknown.

This prospective longitudinal study included 377 children, aged 6-18 years with CKD (stages I-V, dialysis, and transplant), and their primary carers. Mixed effects ordinal regression was performed to assess the association between SEP and carer-rated child health and carer self-rated health over a 4-year follow-up.

Adjusted for CKD stage, higher family household income (adjusted odds ratio (OR) (95% CI) 3.3, 1.8-6.0), employed status of primary carers (1.7, 0.9-3.0), higher carer-perceived financial status (2.6, 1.4-4.8), and carer home ownership (2.2, 1.2-4.0) were associated with better carer-rated child health. Household income also had a differential effect on the carer's self-rated health over time (p = 0.005). The predicted probabilities for carers' overall health being 'very good' among lower income groups at 0, 2, and 4 years were 0.43 (0.28-0.60), 0.34 (0.20-0.51), and 0.25 (0.12-0.44), respectively, and 0.81 (0.69-0.88), 0.84 (0.74-0.91), and 0.88 (0.76-0.94) for carers within the higher income group.

Carers and their children with CKD in higher SEP report better overall child and carer health compared with those in lower SEP. Carers of children with CKD in low-income households had poorer self-rated health compared with carers in higher-income households at baseline, and this worsened over time. These cumulative effects may contribute to health inequities between higher and lower SEP groups over time. Graphical abstract A higher resolution version of the Graphical abstract is available as Supplementary information.

Youth who undergo a kidney transplant can experience a fluctuation of successes and challenges throughout their chronic illness journey. Designing to capture their journey could help youth to reflect on their experiences, collaborate on their care, and be empowered to live their lives to the fullest. We interviewed 11 youth kidney transplant patients and 12 caregivers to elicit their transplant journey experiences. We found that probing participants about specific parts of their transplant journey gave them structure to tell us rich stories about their experiences. Based on our findings, we discuss informing the design of a tool to support the capturing of stories for youth with chronic illnesses. Designing such tool could help youth and their caregivers to identify barriers, support reflection, and promote self-efficacy. Youth with chronic illnesses already have to change so many aspects of their lives to accommodate their illness, however, by giving them a platform to capture their chronic illness journey, it could encourage them to take more control of their lives and better collaborate with others.

Congenital anomalies of the kidneys and urinary tract (CAKUT) are the most common cause of end-stage renal disease (ESRD) in children. Approximately one third of children with CAKUT have lower urinary tract dysfunction (LUTD).

This article highlights the important aspects that need to be considered in kidney transplantation of children with complex urogenital malformations.

The paper reviews the existing literature regarding the evaluation, preparation, perioperative management, and follow-up of children with complex urogenital malformations and ESRD undergoing renal transplantation.

Comprehensive diagnostics are required before any pediatric kidney transplantation. If LUTD is suspected, voiding cystourethrography and a urodynamic examination should be performed. Treatment of symptomatic vesicoureterorenal reflux and LUTD is mandatory prior to pediatric kidney transplantation. Following successful kidney transplantation of children with congenital urogenital malformations, lifelong follow-up is required. Regular reevaluations of the bladder by means of urodynamic examinations are necessary. In patients following bladder augmentation with intestinal segments or urinary diversions in childhood, regular endoscopic examinations of the urinary tract are recommended to rule out secondary malignancy.

Treatment of children with complex urogenital malformations should be carried out in centers with appropriate expertise.

Chronic kidney disease (CKD) mineral and bone disorder (MBD) comprises a triad of biochemical abnormalities (of calcium, phosphate, parathyroid hormone and vitamin D), bone abnormalities (turnover, mineralization and growth) and extra-skeletal calcification. Mineral dysregulation leads to bone demineralization causing bone pain and an increased fracture risk compared to healthy peers. Vascular calcification, with hydroxyapatite deposition in the vessel wall, is a part of the CKD-MBD spectrum and, in turn, leads to vascular stiffness, left ventricular hypertrophy and a very high cardiovascular mortality risk. While the growing bone requires calcium, excess calcium can deposit in the vessels, such that the intake of calcium, calcium- containing medications and high calcium dialysate need to be carefully regulated. Normal physiological bone mineralization continues into the third decade of life, many years beyond the rapid growth in childhood and adolescence, implying that skeletal calcium requirements are much higher in younger people compared to the elderly. Much of the research into the link between bone (de)mineralization and vascular calcification in CKD has been performed in older adults and these data must not be extrapolated to children or younger adults. In this article, we explore the physiological changes in bone turnover and mineralization in children and young adults, the pathophysiology of mineral bone disease in CKD and a potential link between bone demineralization and vascular calcification.