- Research Article
- 10.1016/j.ekir.2026.106293
WCN26-7403 THE BURDEN OF C3G IN SPAIN: CHARACTERIZING THE PATIENT JOURNEY FROM SYMPTOMS ONSET TO DAILY LIFE
- Apr 01, 2026
- Kidney International Reports
- Fernando Caravaca-Fontán + 5 more +5
Publications from 2021 to 2026
Showing 10 of 1,165 papers
WCN26-7403 THE BURDEN OF C3G IN SPAIN: CHARACTERIZING THE PATIENT JOURNEY FROM SYMPTOMS ONSET TO DAILY LIFE
FIRST STEPS: A Pilot Randomized Study Analyzing the Preliminary Efficacy of the Incredible Years for Autism Spectrum and Language Delays (IY-ASLD®).
Having access to parenting interventions in the early years is key to improve developmental outcomes of children with neurodevelopmental problems. The Incredible Years® Parent Program has been adapted for families of children with autism or language delays (IY-ASLD®). The aim of this study is to analyze the preliminary efficacy of the intervention in the Spanish public mental health services. The FIRST STEPS study is a multicenter, pilot randomized controlled trial. Sixty-two families of children with autism spectrum disorder and preterm children with communication and/or socialization difficulties (aged 2-5 years) were recruited. Due to the COVID-19 pandemic, the intervention was performed online. A generalized estimating equations model was conducted. No significant differences in parental stress ([Formula: see text] = 2.01, [Formula: see text]0.640), depressive symptoms ([Formula: see text] = - 1.42, [Formula: see text]0.437), child psychopathology ([Formula: see text] = 0.74, [Formula: see text]0.886) ), positive parenting [Formula: see text] = 2.25, [Formula: see text]0.076) or total expressed emotion ([Formula: see text] = - 0.10, [Formula: see text]0.605) were found between groups at T2. In terms of expressed emotion at T2, a significant interaction was observed between positive comments at T1 (a subscale of the expressed emotion tool) and study group ([Formula: see text] = 0.75, [Formula: see text]0.007). Future studies should analyze the efficacy of the program using a larger sample. Families showing higher levels of expressed emotion might need more support during the therapy groups to improve this variable. The protocol for the study was registered in ClinicalTrials.gov (ID number: NCT04358484. Unique Protocol ID: PIC-220-19).
Read moreFocused Abbreviated Survey Technique (FAST) brain magnetic resonance imaging in children: results from a European Society of Pediatric Radiology survey.
Focused abbreviated survey technique (FAST) brain magnetic resonance imaging (MRI) (i.e., sedation-free abbreviated MRI) is progressively being implemented in the daily clinical practice of multiple pediatric institutions for neuroimaging assessment of children presenting with neurological disorders. To survey current awareness, imaging practices, and perception of members of the European Society of Pediatric Radiology (ESPR) regarding pediatric FAST brain MRI. A survey consisting of seven questions related to FAST brain MRI was distributed electronically to all ESPR members. A total of 64 responses from 27 different countries (17 of which were European) were received, corresponding to a 4% response rate. Among responders, 68% were full-time pediatric radiologists and the great majority (94%) were aware of current clinical use of FAST brain MRI in the pediatric setting. Moreover, 83% already apply this imaging approach in daily work activity, more commonly for a few years (85%). The most cited advantage for adopting this imaging approach was radiation risk reduction (95%). Major reported obstacles to routine implementation were technical/human resource limitations (63%), potential medicolegal implications (55%), and lower image quality reducing diagnostic accuracy (53%). Diverse protocols are used, including utilization of inhouse/custom developed solutions (68%) or one of multiple commercially available/published protocols (17%), or both (15%). Near all participants (97%) expressed desire for formal consensus recommendations from the ESPR on the topic. Despite widespread knowledge and high clinical adoption rate of pediatric FAST brain MRI among participants, clinical indications/protocols remain variable and some barriers persist in the daily practice, highlighting the need for evidence-based consensus-driven guidelines.
Read morePediatric cholecystectomy practices and training: an International Multicenter Survey by the European Union of Medical Specialists (UEMS) Section of Paediatric Surgery.
Pediatric cholecystitis and cholelithiasis management is heterogeneous. We surveyed European centers to map current practices, training exposure, and outcomes of pediatric biliary cholecystectomy. A 24-item cross-sectional international survey was developed by the European Union of Medical Specialists (UEMS) Section of Paediatric Surgery and distributed to centers in 31 UEMS member states. Items covered institutional resources, indications and timing, surgical approach and adjuncts (ERCP, ICG), training exposure, and center-level outcomes; results are reported as n (%), median (IQR). Outcomes were reported at the center level and were self-reported by participating institutions. Thirty-two centers from 23/31 states responded (74.2%). Pediatric surgeons were primary operators in 84% (shared with adult surgeons in 16%); ERCP access was 66%. Trainee operator share was 22.5% (IQR 5-50) and simulator access 56%. ICG cholangiography was routine in 12.5% and selective in 31%. Acute calculous cholecystitis: 6% always index-admission and 59.4% interval (29-41 days) cholecystectomy; post-ERCP choledocholithiasis: 16% always index-admission cholecystectomy. In 2023, 185 cases were reported: 98.9% laparoscopic with 1.6% conversion; median age 14 years (IQR 12.25-15), operative time 90min (IQR 60-110), length of stay 2 days (IQR 1-2); 10 complications (5.4%). Substantial heterogeneity persists in both care pathways and training exposure; most centers lack formal pediatric-specific guidelines, and trainee-led operating remains limited, supporting the need for evidence-based protocols and structured training pathways.
Read moreNARRATIVE: A European Prospective Study on the Natural History, Quality of Life, and Patient-Reported Outcomes in Vascular Anomalies
Machine learning models for predicting hospital admission in pediatric emergency departments: A systematic review.
Deaths with preceding hospitalisations within 180 days in eight countries in sub-Saharan Africa and South Asia: A secondary descriptive analysis of the Child Health and Mortality Prevention Surveillance (CHAMPS) network.
To describe (1) the proportion of deaths that were in recently hospitalised children and (2) causes of mortality among deceased children aged 0-59 months with preceding hospitalisations who enrolled in a mortality surveillance programme. Descriptive study using prospectively collected data. Eight Child Health and Mortality Prevention Surveillance (CHAMPS) community and healthcare sites in sub-Saharan Africa and South Asia. Deaths among children aged 0-59 months enrolled in CHAMPS 2016-2023. None. Deaths with antecedent hospitalisations within 180 days of death. Causes of death determined by expert panels who reviewed clinical data and histopathologic and microbiologic results from postmortem minimally invasive tissue sampling. CHAMPS enrolled 8548 deaths; we excluded 3688 neonates who died before discharge or ≤24 hours of birth and 482 with unclear information on antecedent hospitalisations. Out of the 4378 remaining deaths, 16.7% (95% CI 15.7% to 17.9%) were deaths that occurred within 180 days of a hospitalisation (n=733/4378). Of these, 55.7% (95% CI 52.0% to 59.3%) occurred outside healthcare facilities. Among included deaths with minimally invasive tissue sampling completed (n=337), lower respiratory tract infections (41.2%, 95% CI 36.0% to 46.7%), sepsis (39.8%, 95% CI 34.5% to 45.2%) and undernutrition (n=92, 27.3%, 95% CI 22.7% to 32.4%) were most common causes of death among cases with antecedent hospitalisations. The greatest proportion of deaths with antecedent hospital admissions occurred among cases aged 1-11 months (48.0%, 95% CI 44.4% to 51.7%), compared with those aged 0-1 months (21.7%, 95% CI 18.8% to 24.9%) and those aged 1-5 years (30.3%, 95% CI 27.0% to 33.8%). Moreover, the greatest proportion of deaths with antecedent hospital admissions occurred among infants/children with weight-for-age Z-score of <-3 (62.5%, 95% CI 56.5% to 68.0%) compared with those with weight-for-age Z-score of ≥-3 (37.5%, 95% CI 32.0% to 43.5%). We observed a high proportion of deaths with antecedent hospitalisations within 180 days among young children across eight sites in sub-Saharan Africa and Asia. Among those deaths, children aged 1-11 months and undernourished infants were over-represented, suggesting early follow-up as a potential point to focus targeted support and future research.
Read moreSafety Assessment of Aqueous Humor Liquid Biopsy in Retinoblastoma: A Multicenter Study of 1203 Procedures.
Structural covariance network topology in individuals at clinical high risk for psychosis: the ENIGMA-CHR Study.
Brain network architecture is anticipated to influence future grey matter loss in individuals at Clinical High Risk (CHR) for psychosis. However, existing studies on grey matter structural network properties in CHR are scarce and constrained by small sample sizes. Here, we examined network topology differences comparing a) CHR versus healthy controls (HC); b) CHR who transitioned to psychosis (CHR-T) versus those who did not (CHR-NT); and c) different subsyndromes. We included structural scans from 1842 CHR individuals and 1417 HC individuals from 31 sites within the Enhancing NeuroImaging Genetics through Meta-Analysis (ENIGMA) consortium. At the global level, CHR individuals exhibited lower structural covariance (q < 0.001; Cohen's d = 0.164) and less optimal structural network configuration than HC (lower global efficiency and clustering coefficient, d = 0.100,0.087, qs <= 0.027). Though no global difference between CHR-T and CHR-NT, network distinctiveness of the frontal and temporal surface area networks was higher in CHR-T than CHR-NT (d = 0.223,0.237) and HC (d = 0.208,0.219) (qs < 0.001). Network distinctiveness of the frontal cortical thickness network was lower in CHR-T (d = 0.218, q < 0.001) than CHR-NT and HC (d = 0.165, q < 0.001). Importantly, higher network distinctiveness was associated with worse positive symptoms in CHR-NT (frontal surface area, q = 0.008, R2 = 0.013) and at trend with worse negative symptoms in CHR-T (frontal thickness, q = 0.063, R2 = 0.049). Further, the brief intermittent psychotic syndrome subgroup showed more severe network alterations. Together, brain structural networks inform symptoms and the risk of transition to psychosis in CHR individuals.
Read moreLongitudinal care program for families and patients with surgical malformations in a NIDCAP Training Center
Longitudinal care program for families and patients with surgical malformations in a NIDCAP Training Center