Pediatric Experience Research Articles

SARS-CoV-2 reinfections in the pediatric cohort-a single-center experience.

This study focused on timelines of infection episodes and dominant variants and aims to determine disease severity and outcome of pediatric patients with reinfection. This study retrospectively evaluated the medical records of the hospitalized patients and/or outpatients aged 0-18 with a positive severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) polymerase chain reaction between March 2020 and September 2022 at Ege University Children's Hospital. Ninety-one pediatric patients reinfected with SARS-CoV-2 were included in the study. There was an underlying disease in 26.4% of the patients. The median time between the two infection episodes was 184 (90-662) days. There were 24 patients (26.3%) with the first infection in pre-Delta period; 17 (18.6%) of them were reinfected in Omicron BA.1 period, while 7 (7.6%) in Omicron BA.4/BA.5 period. Forty-five patients (49.4%) were infected initially in the Delta period; 35 patients (38.4%) were reinfected in the Omicron BA.1 period, while 10 patients (10.9%) were reinfected in the Omicron BA.4/BA.5 period. Twenty-two patients (24.1%) had the first infection in the Omicron BA.1 period and then reinfected in the Omicron BA.4/BA.5 period. Patients with reinfection more frequently displayed a symptom (84.6% vs. 94.5%, p = 0.03). The hospitalization rate significantly declined in reinfection (15.3% vs. 7.6%, p = 0.03). Severe disease, treatment needs and steroid use were decreased in reinfections without a significant difference (p > 0.05). Intensive care unit admission was not altered. This study revealed that reinfections frequently develop in previously healthy children but do not cause more severe outcomes. The risk of symptomatic reinfections is still high due to the effect of the Omicron variant.

Virtual Reality and 3D Simulation in the Treatment of Pediatric Patients with Central Nervous System Tumors

Pediatric central nervous system tumors are the primary solid malignancies in children and remain a leading cause of mortality in infancy. Advances in pediatric neuro-oncology, driven by molecular oncology research, emphasize the critical need for high-quality pathological tissue to support advanced molecular investigations. However, the vast heterogeneity of these tumors requires precise discrimination of collection sites, aligning with preoperative imaging data. Surgical resection, a pivotal step in diagnosis and treatment, could result in potential morbidities influencing children's neurological status. This, in turn, affects the feasibility of subsequent oncological treatments, influencing overall prognosis and quality of life. To address these challenges, technological tools enhance neurosurgeon orientation in pre-surgical planning and resection. While stereotactic navigation systems reduce morbidity, limitations persist in providing only two-dimensional anatomical information. Recent developments in 3D surgical simulation and virtual reality revolutionize procedural planning, offering real-time integration with intraoperative navigation systems. Beyond surgery, virtual reality has potential in case discussions, preoperative planning, and operative guidance, aiming to improve care and patient outcomes. The virtual reality experience, coupled with detailed anatomical visualization, facilitates meticulous surgical strategy planning for minimal invasiveness. Despite expanding literature on virtual reality applications in neurosurgery, pediatric neurosurgical oncology experiences remain limited. Scientific evaluation of simulation systems' impact on techniques and outcomes, combined with advances in neuroimaging, offers promise for adapting surgical approaches based on neoplastic brain lesion behavior.
 In conclusion, incorporating 3D surgical simulation and virtual reality technologies in pediatric neurosurgical oncology holds substantial benefits, offering improved procedural planning, enhanced precision, and patient-specific adaptation. Despite limited reported experiences, the compelling advantages underscore the need for further exploration and consideration in the evolving landscape of pediatric neuro-oncology.

Clinical Characteristics and Treatment Outcomes of Idiopathic Multicentric Castleman Disease: Data from a Pediatric Cohort

Background: Idiopathic multicentric Castleman disease (iMCD) is a rare, atypical hematologic disorder characterized by diffuse lymphadenopathy and systemic inflammation causing potentially fatal multi-organ system dysfunction. Though the etiology remains unknown, interleukin-6 (IL-6) has been implicated in disease pathogenesis and siltuximab, a monoclonal antibody that antagonizes IL-6, is the only FDA-approved iMCD treatment. Despite substantial morbidity for children with iMCD, the pediatric experience has not been well characterized. It is unclear whether insights gleaned from adults apply to children or whether siltuximab, which was never prospectively studied in a pediatric population, achieves similar response rates in children. We sought to correct this knowledge gap and better characterize pediatric iMCD. Methods: The ACCELERATE longitudinal Castleman disease (CD) natural history registry was interrogated for patients under 18 years of age at time of diagnosis. For each patient, complete medical history and lymph node biopsy slides were collected and extracted, and a panel of clinicians and pathologists performed independent adjudication of the diagnosis. Demographics - including age at diagnosis, histopathologic subtype, clinical subtype, clinical symptoms, and most severe laboratory parameters present within ± 90 days from date of pathological diagnosis were aggregated. Lastly, treatments administered to the cohort of pediatric patients were inventoried and both clinical response (defined as at least 50% reduction in abnormal clinical and laboratory criteria) and durable response (defined as a positive clinical response lasting ≥ 365 days with no other CD treating drug administered in between) were determined. Results: Nineteen pediatric patients were confirmed to have iMCD, of which 14 (74%) were male and 5 (26%) were female (Table 1A). The mean (standard deviation [SD]) age at diagnosis was 13.6 (4.3), with the youngest patient diagnosed at 2 years of age. Much of the cohort demonstrated hypervascular lymph node histology (89.5%). Clinically, 84% of the patients demonstrated the severe TAFRO (thrombocytopenia, anasarca, fever, renal dysfunction/reticulin fibrosis, organomegaly) subtype while 16% were not otherwise specified. 95% of patients presented with constitutional symptoms and all but one patient presented with fatigue and fevers. All 19 patients presented with organomegaly and fluid retention (anasarca, ascites, pleural effusions, and/or peripheral edema). No patients demonstrated CD-specific skin abnormalities (violaceous lymphocytic papules or cherry hemangiomata) or interstitial lymphocytic pneumonitis. Labs indicated significant systemic inflammation, with mean (SD) C-reactive protein, erythrocyte sedimentation rates, and albumin values of 128.3 (102.7) mg/L, 74.5 (42.5) mm/hr, and 2.7 (0.6) g/dL, respectively. Eighteen (95%) patients presented with anemia, with a mean (SD) hemoglobin value of 9.5 (2.2) g/dL. Sixteen (84%) patients demonstrated platelet abnormalities, with 13 patients presenting with thrombocytopenia and three with thrombocytosis. No patient demonstrated hypergammaglobulinemia. Nine patients received three unique siltuximab regimens: siltuximab ± CS (corticosteroids), siltuximab + sirolimus ± CS, and siltuximab + other (other being defined as all other treatments such as rituximab, eculizumab, and ravulizumab) (Table 1B). Siltuximab ± CS was administered to six patients; 83% (n=5) had a positive response, and 60% of responders achieved a durable response. Lastly, two patients with TAFRO died from their disease. Conclusions: Overall, real-world medical record data from a cohort of pediatric iMCD patients enrolled in ACCELERATE reveals high disease burden within this population. A notable degree of TAFRO, the most severe iMCD subtype, was observed within this pediatric cohort, with clinical manifestations and laboratory abnormalities commonly observed in adult iMCD. This makes this population particularly vulnerable and highlights the need for prompt and accurate treatment. We also observed a high response rate to siltuximab ± CS in this small cohort, supporting its use in pediatric iMCD. Further research examining the effectiveness of siltuximab in a larger cohort of pediatric patients as well as other treatments is needed to identify optimal treatment approaches.

The dual role of body mass index on Juvenile Idiopathic Arthritis course: a pediatric experience.

Despite the well-known role of obesity as risk factor for Juvenile Idiopathic Arthritis (JIA) severity, emerging but limited evidence suggested a similar role for underweight. We investigated the role of body mass index (BMI) across its full spectrum in a cohort of children with JIA.We retrospectively studied 113 children with JIA classified according to the International League of Association for Rheumatology (ILAR) criteria attending our Rheumatology Clinic. The patients underwent a comprehensive evaluation including both clinical and biochemical assessments. According to BMI Z-score, the cohort was divided into five groups as underweight, normal weight, overweight (OW), obesity (OB), and severe OB. Disease activity was calculated by Juvenile Arthritis Disease Activity Score 10 (JADAS-10) joint reduced count and relapses were defined according to Wallace criteria.The mean age of the cohort was 7.43 ± 4.03years. The prevalence of underweight, normal weight, OW, OB, and severe OB was 7.2%, 54.1%, 10.8%, 17.1%, and 10.8%, respectively. Significant higher ferritin levels and erythrocyte sedimentation rate values were found in patients with severe OB and underweight compared to subjects belonging to normal weight, OW, and OB groups. A greater JADAS-10 score was observed in underweight patients and in those with severe OB than other groups. The relapse rate was higher in patients with severe OB and underweight compared to other groups. Conclusions: Both underweight and OB might negatively affect JIA course. Weight control is fundamental in children with JIA to avoid a more unfavourable course of the disease. What is Known: • Obesity represents a well-known risk factor for JIA severity. • The role of underweight in children with JIA is still poorly explored. What is New: • As observed in children with obesity, underweight young patients with JIA seem to experience a more severe JIA course. • Healthy lifestyle promotion in children with JIA is a crucial step in the management of the disease.

Assessing Treatment Burden in Pediatric Hemophilia: Validation of the Observer-Reported Child Hemophilia Treatment Experience Measure (Child Hemo-TEM)

Background: Despite treatment safety and efficacy advancements for children with hemophilia (CwH), home treatment can be complicated and burdensome. Treatment burdens are major contributing factors to adherence issues. The Child Hemo-TEM is a patient-centric outcome measure developed following the United States (US) Food and Drug Administration guidance for patient-reported outcome measure development. Designed to assess the treatment burden for CwH, the measure is a caregiver observer-reported outcome (ObsRO) measure where questions are answered by the caregiver about the child's treatment experience based on what the caregiver has seen, heard, or been told by the child. Aim: The purpose of this study was to psychometrically validate the Child Hemo-TEM ObsRO. Methods: Data was collected through a cross-sectional, web survey from a population of caregivers of CwH aged 2 to < 12 years in the US. The survey consisted of the Child Hemo-TEM, sociodemographic items, child's hemophilia medical history, and supporting items/measures required to assess the measure's psychometric properties. The survey took up to 45 minutes to complete and was administered at a single time point. To be eligible for the study, caregivers needed to be: aged ≥ 18 years; a caregiver of a male child with a diagnosis of severe to moderate hemophilia A or B, with a factor level of < 2%, with or without an inhibitor, and currently receiving either prophylactic or on-demand treatment; and living in the same residence as the child over the past 2 weeks. Recruitment was conducted by a patient advocacy group and a professional market research firm. Recruitment quotas were targeted to ensure a diverse population and mix of frequency of prophylactic treatment(s) and treatment administration type. All psychometric analyses were conducted following an a-priori statistical analysis plan, which included examination of measurement characteristics, item reduction, factor analysis, measure scoring, internal consistency, reliability, and validity. Results: Caregivers ( n=187) of CwH completed the web survey. The respondents were, on average, 37.8 years of age, mothers (84.0%), and predominantly White/Caucasian (74.3%). Twelve items were dropped from the validation-ready, 19-item measure: 5 items due to high ceiling effects at baseline (>50%) mirrored by the Rasch results and 1 item as it was highly correlated with a retained item. Further, as there were only a small number of children who self-injected, 6 items designed to assess child self-injection were removed. The remaining items underwent further psychometric testing. An exploratory factor analysis generated a single, 7-item factor. The Child Hemo-TEM was found to be internally consistent with a Cronbach's α of 0.855. A-priori validity hypotheses were adapted to match the final factor structure. Hypothesized associations were predominantly confirmed with a few exceptions. For convergent validity (Pearson's r significance set at α = 0.05), a few of the associations, although significant, were below 0.30 (Table 1). The Child Hemo-TEM was able to discriminate between levels of self-complaining about their infusions (p < 0.001), psychological stress reported by parent (p < 0.001), and ease/difficulty of their medication in its current form, among other variables. Based on psychometric findings and taking into consideration learnings from the concept elicitation during measure development, the brief, 7-item Child Hemo-TEM was finalized with 1 domain capturing information from all the hypothesized concepts of treatment concerns (3 items), adherence (1 item), physical impact (1 item), and interference with daily life (2 items) (Figure 1). A five-point Likert response scale with ranges from “Never” to “Always”, or a “Don't know” option, is used. Conclusion: The Child Hemo-TEM ObsRO has been found to be conceptually sound with adequate evidence to support its reliability and validity. Incorporation of the measure into both clinical and research settings will help assess the pediatric patient's experience of living with hemophilia as well as aid clinicians in tailoring treatments to patient characteristics and situations. Future studies are needed to assess test-retest reproducibility, sensitivity to change, and meaningful change thresholds of this new measure.

Evaluation of Pediatric Readiness Using Simulation in General Emergency Departments in a Medically Underserved Region.

Regionalization of pediatric care in the United States was developed to improve care by directing patients to hospitals with optimal pediatric resources and experience, leading to less pediatric-trained providers in medically underserved areas. Children with emergencies, however, continue to present to local general emergency departments (GEDs), where pediatric emergencies are low-frequency, high-risk events. The goals of this project were to: increase exposure of GEDs in the southeast United States to pediatric emergencies through simulation, assess pediatric emergency clinical care processes with simulation, describe factors associated with readiness including volume of pediatric patients and ED location (urban/rural), and compare these findings to the 2013 National Pediatric Readiness Project. This prospective in situ simulation study evaluated GED readiness using the Emergency Medical Services for Children Pediatric Readiness Score (PRS) and team performance in caring for 4 simulated pediatric emergencies. Comparisons between GED and pediatric ED (PED) performance and PRS, GED performance, and PRS based on pediatric patient volume and hospital location were evaluated. A Composite Quality Score (CQS) was calculated for each ED. Seventy-five teams from 40 EDs participated (39 GED; 1 PED). The PED had a significantly higher volume of pediatric patients (73,000 vs 4492; P = 0.003). The PRS for GEDs was significantly lower (57% [SD, 17] vs 98%; P = 0.022). The CQSs for all GEDs were significantly lower than the PED (55% vs 87%; P < 0.004). Among GEDs, there was no statistically significant difference in PRS or CQS based on pediatric patient volume, but urban GEDs had significantly higher CQSs versus rural GEDs (59.8% vs 50.6%, P = 0.001). This study shows a significant disparity in the performance and readiness of GEDs versus a PED in a medically underserved area. More education and better access to resources is needed in these areas to adequately care for critically ill pediatric patients.

Pediatric pituitary neuroendocrine tumors-a 13-year experience in a tertiary center.

Pediatric pituitary neuroendocrine tumor is a rare condition, and despite previous research focusing on this specific group, the main factors influencing the surgical cure rate have not been identified. We conducted a single-center retrospective study on pediatric pituitary neuroendocrine tumor patients who visited Peking Union Medical College Hospital between 2010 and 2023. We collected data on their clinical characteristics, imaging features, surgical outcomes, and follow-up information. Additionally, we used multiple-factor logistic regression to investigate the factors affecting the surgical cure rate of pediatric pituitary neuroendocrine tumor. 232 patients were diagnosed with pediatric pituitary neuroendocrine tumors, with a higher incidence in females. The most common type was ACTH-secreting adenoma (90/232), followed by prolactin-secreting adenoma (63/232), and growth hormone-secreting adenoma (41/232). The majority of pediatric adenomas were macroadenomas (139/232), and some tumors were associated with cystic changes or hemorrhage (58/232), while a few exhibited invasion of the cavernous sinus (33/232). The results of the multivariate analysis indicated that the different hormone secretion types, macroadenoma or the presence of cystic changes or hemorrhage were not significant risk factors for the cure rate after the first surgery. However, the invasion of the cavernous sinus was found to be an important factor influencing the postoperative cure rate. Most pediatric pituitary neuroendocrine tumors with cavernous sinus invasion were macroadenomas, and some displayed characteristics of refractory pituitary neuroendocrine tumors, with some patients experiencing irreversible complications after surgery. Pediatric pituitary neuroendocrine tumors are complex, and the postoperative cure rate is particularly poor for tumors with cavernous sinus invasion. Although macroadenoma itself does not significantly impact the postoperative cure rate, it is still recommended to diagnose and treat early to avoid unnecessary surgery or surgical complications.

DELAYED DISCHARGE OF PATIENTS WITH SUSPECTED NON-ACCIDENTAL INJURY

Child abuse is an essential discussion within society and poses many challenges. The international literature describes patient and family based risk factors and suspicious injuries. We have created a protocol for the identification and investigation of children with suspected non-accidental injuries. The paediatric orthopaedic ward experiences many children being delayed in the ward once fit for discharge. This study aimed to quanitify those delayed discharges and describe the demographics and risk factors for abuse within the local population.After obtaining ethics clearance, we conducted a retrospective review of records from the Teddy Bear Clinic, as well as admission records. The study examined demographic characteristics, family, injury characteristics and referral to Child Welfare. The delay of discharge from hospital was quantified and was compared to those characteristics.Records were collected from 1 January 2015 to 31 December 2021. Seventy-nine complete records were included. There were 40 males and 39 females with an average age of 20 months. 75.9% were under 36 months old. 94.1% of the cases sustained lower limb fractures. Fifty-two cases had a delayed discharge. The delay ranged from 1 to 233 days. There was an association between an age less than 36 months and delayed discharge. There were no significant correlations between caregiver characteristics and delayed discharge. The later the completion of investigations, the more likely there would be a delay. There was also a significant correlation between referral to Child Welfare and delayed discharge.Children under 36 months on this remain at highest risk for non-accidental injury. Delayed discharge was associated with age less than 36 months, upper limb fractures and referral to Child Welfare.Despite the delayed discharge, most children returned to the same home environments

Exploring Amico H impact: A promising tool to promote children's knowledge and adherence to medical procedures

mHealth (e.g., the use of mobile devices such as smartphones and tablets for delivering healthcare services) has become a crucial resource in pediatric healthcare, providing children with psychoeducation and distraction, and enhancing treatment compliance. Amico H, a newly developed application, is targeted at ameliorating children's and parents' experience of pediat-ric medical procedures and communication with healthcare professionals. With the virtual en-vironment of a castle, Amico H is a mHealth app for children, offering interactive games and psychoeducational support during medical treatments. The present experience explores the im-pact of the Amico H prototype on children, teens, and parents in terms of pleasantness, usabil-ity, and usefulness. Method: A total of 99 children and teens aged 4-19 years (10.53 ± 3.69 years; 73% female), both hospitalized (28%) or not and N=32 caregivers (72% mothers) re-sponded to an ad-hoc survey on the app's user experience. Descriptive analyses and group comparisons have been computed. Results: Findings highlight that children and caregivers were highly amused and satisfied by Amico H. Compared to teens, children needed more help from adults in the use of the app. Conclusion: All the results indicate that Amico H is a pow-erful tool to ameliorate pediatric hospitalization experience and to promote children's knowledge about health and medical procedures. The need for age-specific versions of Amico H emerged. Future directions and limits are discussed.

Our experience with management of congenital urological pathologies in adulthood: What pediatric urologists should know and adult urologists adopt in pediatric practice experience.

To summarize our experience in the management of congenital anomalies in the kidney and urinary tract (CAKUT) in adults. We conducted a retrospective chart review of all adult patients who underwent primary surgical intervention for CAKUT between 1998 and 2021. The study included 102 patients with a median age of 25 (interquartile range, 23-36.5). Of these, 85 (83.3%) patients reported normal prenatal ultrasound, and the remaining 17 (16.7%) patients were diagnosed with antenatal hydronephrosis. These patients were followed-up conservatively postnatally and were discharged from follow-up because of the absence of indications for surgical intervention or because they decided to leave medical care. All studied adult patients presented with the following pathologies: 67 ureteropelvic junction obstructions, 14 ectopic ureters, 9 ureteroceles, and 6 primary obstructive megaureters, and the remaining 6 patients were diagnosed with vesicoureteral reflux. Forty-three percent of the patients had poorly functioning moieties associated with ectopic ureters or ureteroceles. Notably, 67% of patients underwent pyeloplasty, 9% underwent endoscopic puncture of ureterocele, 3% underwent ureteral reimplantation, 6% underwent endoscopic correction of reflux, 7% underwent partial nephrectomy of non-functioning moiety, and the remaining 9% underwent robotic-assisted laparoscopic ureteroureterostomy. The median follow-up period after surgery was 33 months (interquartile range, 12-54). Post-operative complications occurred in 5 patients (Clavien-Dindo 1-2). Patients with CAKUT present clinical symptoms later in life. Parents of patients diagnosed during fetal screening and treated conservatively should be aware of this possibility, and children should be appropriately counseled when they enter adolescence. Similar surgical skills and operative techniques used in the pediatric population may be applied to adults.

Cefiderocol Red Wine Urine Syndrome in Pediatric Patients: A Multicenter Case Series.

Cefiderocol is a novel cephalosporin antibiotic with activity against multidrug-resistant Gram-negative bacteria and limited pediatric experience. This case series describes 3 immunocompromised children receiving blood transfusion who developed benign red or purple urine with administration of cefiderocol. Interaction with iron from blood products is a possible mechanism. It is important to recognize this phenomenon and distinguish it from hematuria to avoid unnecessary diagnostic testing.

Investigating the Kazakhstani Pediatric Nurses’ intravenous catheter management knowledge and confidence: A cross-sectional study

AimTo assess Kazakh pediatric nurses’ knowledge and confidence in peripheral intravenous catheter (PIVC) management and examine the personal and professional factors that influenced them. BackgroundDespite the significance of having high levels of PIVC insertion and care knowledge and confidence among pediatric nurses, the literature portrays inadequacies in the knowledge of these nurses in various parts of the globe. DesignThis study is cross-sectional and observational, following the STrengthening the Reporting of OBservational studies in Epidemiology checklist in reporting. MethodsA convenience sample of 200 pediatric nurses working in the University Medical Center in Kazakhstan were surveyed from November to December 2022 using a paper-based questionnaire to assess the PIVC management knowledge and confidence. ResultsThe respondents had poor knowledge of patient assessment, PIVC insertion, maintenance, and removal. Participants reported high confidence in inserting and maintaining PIVCs among pediatric patients. Nurses' education, pediatric nursing experience, and training in PIVC management in the last 12 months were significant predictors of the nurses' knowledge. PIVC insertion and care knowledge directly influenced the nurses' confidence in these procedures. ConclusionsDespite the high confidence of the nurses, their actual knowledge of these skills needed to be higher. Some personal and professional factors influence the knowledge and confidence of pediatric nurses.

A retrospective study of pediatric renal trauma: A single-center experience in Japan.

To report pediatric renal trauma experiences at the National Center for Child Health and Development in Japan according to the Japanese Association for the Surgery of Trauma (JAST) classification 2008. Medical records were retrospectively reviewed for 45 children younger than 18 years old diagnosed with renal trauma from February 2004 to December 2021, regarding details of external causes, treatments, complications, and injury scales according to the JAST classification 2008. The cases who cannot be classified into the JAST classification 2008 will be categorized into our original type 0. There were 24 males and 21 females with a mean age of 8.5 years. Left kidneys were the predominantly affected side. Blunt injury was involved in every case (mainly falls and traffic accidents). Concomitant organ injuries were found in 13 cases. The injury scales were type Ia (13.3%), II (11.1%), IIIa (13.3%), IIIb (24.4%). Type 0 accounted for 37.8%, which were type 0c (congenital anomalies of the kidney and urinary tract without hematoma and/or laceration of kidney parenchyma) at 11.1% and type 0h (only hematuria and normal radiologic finding) at 26.7%. Treatments were blood transfusion, ureteral stenting, nephrostomy, and no nephrectomy. Complications were pseudoaneurysm, hypertension, and infection. Nearly 38% of cases cannot be classified into the JAST classification 2008, comprising at least two irrelevant types (type 0c and type 0h ). Accordingly, a pediatric renal injury scale should be established to achieve the precise diagnosis and treatments. However, further studies are still needed.

Development of a Conceptual Model for the Patient Experience of Focal Segmental Glomerulosclerosis (FSGS): A Qualitative Targeted Literature Review.

Focal segmental glomerulosclerosis (FSGS) is a leading cause of kidney disease and can progress to end stage kidney disease (ESKD). An overview of symptoms and impacts of the disease experienced will help inform the selection or development of fit-for-purpose clinical outcome assessments (COA) to be used in FSGS clinical trials. This study aimed to develop a conceptual model (CM) of the adult and pediatric patient experience of FSGS including disease signs/symptoms, treatment side-effects, and impact on functioning and wellbeing. This study comprised a systematic review and thematic analysis of qualitative studies with adults and pediatric patients diagnosed with FSGS. Data sources were identified through an electronic database search of journal articles (Medline, Embase, PsycINFO; June 2021) and hand-searching of conference proceedings, patient advocacy group websites, and gray literature. Non-English articles were excluded. Identified data (patient/caregiver quotes, author summaries, and interpretations of patient experiences) were extracted from the articles. Extracted data were qualitatively analyzed aided by ATLAS.ti v7. Codes were applied to data and concepts (symptoms/impacts) were identified, named, and refined. A CM was developed by grouping related concepts into domains. In total, 12 sources were identified for analysis: 6 journal articles and 6 series of patient testimonials. Salient sign/symptom/side-effect domains included swelling/puffiness (edema), pain/aches/discomfort, fatigue, weight changes, skin problems, respiratory problems, and sleep problems. Salient impact domains included emotional/psychological wellbeing, physical functioning/activities of daily living, social functioning, and work/school. Secondary analysis of published qualitative literature permitted development of a CM describing the adult and pediatric experience of FSGS. Concept elicitation interviews are recommended to refine the CM, confirm the salient/most bothersome concepts, and confirm the extent of impact on daily life. The refined CM will provide a useful tool to inform the selection, development, and/or amendment of COAs for use in future FSGS clinical trials.

Wide Resection for Pediatric Extremity Vascular Malformation-A Tertiary Hospital's Experience.

Vascular malformations of the extremities (VM) are common benign lesions that tend to grow throughout the patient's lifetime. They can cause various issues like pain, swelling, and even limb length discrepancies. Sclerotherapy was the preferred treatment choice in previous studies. However, sclerotherapy and many other treatments have the potential to result in higher recurrence rates. Surgical treatment has been shown to be effective and safe in many cases. Hence, this study aims to evaluate the suitability of wide resection surgery for VM to reduce recurrence. Fort-seven VM cases that underwent wide resection were identified retrospectively in the institution of study. Demographics, depth of malformation, whether malformations were local or diffuse, location and size of malformations, and histology records were taken note of. Records of recurrence and postoperative function were also gathered. We utilized self-reported questionnaires, QuickDASH and Lower Extremity Functional Scale, to determine patients' postsurgical physical function. Out of 47 cases that underwent wide resection, we found a recurrence rate of 2.1%. No patients sustained any loss of function postsurgery, with few patients experiencing minor complications like tenderness, hypertrophic scars/keloids, as well as numbness. Good functionality posttreatment was also seen through self-reported questionnaires, with an average score of 2.12 for QuickDASH and 99.96% for LEFS. Where margins can be obtained without functional impairment, surgical-wide resection for VM is a viable treatment option to minimize recurrence. Level-IV.

Percutaneous Transcatheter Retrieval of Central Venous Port Fragments in Pediatric Patients; A Single-center Experience From the Pediatric Cardiology Department.

Split/fracture and embolization of central venous/shunt catheters are rare but serious complications in children. Percutaneous retrieval of intravascular foreign bodies is an important minimal invasive treatment. This study is aimed to represent our largest pediatric sample experience till now of 17 years from a single institution. Another aim is to compare the results regarding the removal or leaving in place of embolized or ruptured intravascular or cardiac venous catheter parts in children. A total of 26 cases were included in this study. Any pediatric patient with normal coagulation parameters and a fractured catheter fragment was included in this study. Other intravascular foreign bodies related to interventional devices and/or pacemaker/implantable cardiac defibrillator leads were excluded from this study. Twenty-six patients, of whom 25 had oncologic diseases and 1 had a ventriculoatrial shunt, were included. The median age was 83.5 months (between 20 mo and 18 y) at treatment.Superior vena cava (9 cases), followed by the right atrium (5 cases), were the most two common sites of embolization for cardiovascular foreign bodies. The success rate of percutaneous retrieval was 92.3% in all patients. There were neither complications nor deaths. The retrieval technique revealed a predisposition for extraction through the femoral vein (96.1%) and using snare techniques (100%). Additional catheters like pigtail, National Institutes of Health, or ablation catheters were used for stabilization in selective cases in which the permanent central venous fragments stuck to the vessels. A tractional maneuver and capturing the ruptured material in the middle were other trick points for successful retrieval. Patients were asymptomatic in 76.9% of cases (20/26). Percutaneous retrieval of cardiovascular foreign bodies is a reasonable, safe, and effective way in children when the catheter fragments are free and mobile. It should be considered the preferred treatment option instead of surgery. In patients where catheter fragments are stuck and are adherent to vessels, it could be left, and followed up by anticoagulation. Novel techniques accompanied by an experienced team could be helpful in difficult cases.

Clinical Experience of a Long-acting Pegylated Erythropoietin-Stimulating Agent in Pediatric Chronic Kidney Disease.

Management of anemia of chronic kidney disease (CKD) often includes subcutaneous or intravenous administration of erythropoietin-stimulating agents (ESAs). Mircera, a pegylated continuous erythropoietin receptor agonist, has a longer duration of action and requires less frequent administration than other ESAs. Pediatric experience with Mircera is limited. We retrospectively reviewed our long-term experience of Mircera in a national pediatric nephrology center. Patients were identified via an electronic patient record database. Data collected included demographics (sex, age, etiology of CKD, CKD stage, dialysis modality), dosing information, and laboratory data-hemoglobin (Hb), parathormone (PTH), ferritin, hematinics prior to commencing Mircera and all subsequent values associated with dose adjustments. Seventy-seven patients aged 2 to 18 years, with CKD stages 2 to 5T had received at least 1 dose of Mircera, with 75 patients having sufficient data and a total of 1473 doses. No patients discontinued Mircera owing to adverse effects. One patient experienced a potential severe adverse drug reaction. Mircera was effective in improving or maintaining Hb ≥10.0 g/dL in most (58/75, 77.3%) patients. The median dose to achieve Hb ≥10.0 g/dL was 2.1 µg/kg/4 wk. Most doses (1039, 71.5%) were administered 4-weekly. The doses (161, 11.1%) that were administered 6-weekly remained efficacious. Thirty-two patients started Mircera with Hb <10.0 g/dL; 26 (81%) achieved Hb ≥10.0 g/dL within a median time of 4 months. Mircera was less effective if given every 8 weeks, or in the presence of hyperparathyroidism or hyperferritinemia. Mircera appears safe and effective in pediatric patients with CKD.

3.75 Assessing for the Presence of Trauma Using Pearls (Pediatric Adverse Childhood Experiences and Related Life Events Screener)

3.75 Assessing for the Presence of Trauma Using Pearls (Pediatric Adverse Childhood Experiences and Related Life Events Screener)

Transcallosal approach and post-operative subdural collections: 12-year paediatric neurosurgery tertiary centre experience.

Following transcallosal surgery for tumour resection, the formation of convexity or interhemispheric subdural cerebrospinal fluid collections may lead to clinical deterioration and may influence decision-making with regards to additional interventions. The aim of this study was to determine the incidence, risk factors, and management of subdural collections following the transcallosal approach in a paediatric cohort. A retrospective case note and radiological review of all children who underwent transcallosal surgery for intraventricular and thalamic tumours was carried out covering a 12-year period (2012-2023) in a single-centre tertiary paediatric neurosurgery unit. Parameters including demographics and clinical information including lesion location, pathology, extent of resection, need for and type of shunt required, as well as depth, laterality, and location of the collection were analysed prior to shunting, and at approximately 3 weeks, 3 months, and latest follow-up available post-operatively in order to further elucidate the natural history of these subdural collections and their clinical significance. Sixty-four cases satisfied the inclusion criteria of transcallosal surgery for tumour resection; 13 did not have adequate post-operative imaging and were excluded. Of the remaining 51 cases, there were 32 children (63%) with post-operative CSF subdural collections, of which 59% were ipsilateral, with the remainder showing bilateral distribution. The overall shunt insertion rate was 25.5% (12 ventriculoperitoneal and 1 subdural-peritoneal shunt) at 3 months, with a mean time to shunting of 19 days post-operatively. Children who developed post-operative subdural collections had a higher rate of shunting, at 37.5%, compared to 5.2% in those who did not. Pre- and post-operative hydrocephalus and subtotal resection were identified as risk factors for development of subdural collections post-operatively. Subdural collections showed a natural course of reduction and regression over follow-up, with the exception of 3 children where they persisted or increased over time; although none of these required shunting. Those children who underwent shunt insertion showed greater regression in the size of the subdural collection over time compared to the non-shunted group. In this paediatric cohort, 25.5 % of children required insertion of a shunt by 3 months following transcallosal surgery. Pre- and post-operative hydrocephalus and subtotal tumour resection were risk factors for development of subdural collections post-operatively.

Evaluating Transition Readiness in Older Adolescents and Young Adults With Type 1 Diabetes.

For older adolescents and young adults (AYAs) with type 1 diabetes, successful transition from pediatric to adult diabetes care requires ongoing planning and support. Yet, the transition to adult care is not always smooth. Some AYAs struggle to leave pediatric care or experience significant gaps between pediatric and adult diabetes care. The use of diabetes-specific transition readiness assessments can inform transition planning and support successful preparation for adult care. This study evaluated transition readiness in a diverse sample of AYAs nearing transition to adult diabetes care. Findings suggest that AYAs may benefit from additional preparation and education related to sexual health, tobacco use, and diabetes complications.