In the Netherlands, around 750 children (0–21 year) die annually from potentially palliative conditions. The majority of these children reside at home, receiving care from hospital services and primary care. This study aims to examine general practice utilization for pediatric palliative care patients in the last 2 years of life.

A retrospective cohort study was performed using the routine healthcare database of the Julius General Practitioners’ Network. The main outcome for general practitioner (GP) utilization was the number of GP consultations for children in the last 3 months of life. Participants were included who were children (0–21 years), and deceased in the period 01-01-2013 to 31-12-2022 from an underlying chronic condition. Data were analyzed using descriptive statistics and tested for differences in provided care between children who died in hospital and who died at home.

Forty-eight children from 32 GP practices met inclusion criteria. Median age was 10.0 years (interquartile range [IQR] 1.5–17.1). Common diagnoses were oncological (29%), congenital (29%), and metabolic conditions (23%). Ninety-six percent of children had contact with their GP in the last 3 months (median 7 consultations, IQR 3.0–10.0), i.e. 26 children who died in hospital had median 3.5 GP consultations compared to 20 children who died at home median 9.5 GP consultations (p < 0.001). Thirty-five percent of children were documented as being palliative, with 54% having some form of advance care planning discussions documented.

These results demonstrate that GPs are highly involved in providing pediatric palliative care. The palliative nature of these children and advance care planning discussions are not routinely documented and/or performed by GPs. Further insights into guidance that supports GPs, in collaboration with other healthcare professionals, in providing palliative care for children at home and their families are needed.

Asthma is a prevalent chronic pediatric condition associated with significant health disparities. The Better Asthma Control for Kids (BACK) program aims to reduce asthma disparities and improve asthma control for children in high-need schools in four regions of Colorado.

We conducted in-depth, semi-structured interviews (Dec 2023–June 2024) with key roles involved in BACK including school nurses, asthma navigators, and caregivers of participating students with asthma. Interviews and rapid qualitative analysis were informed by the Practical Robust, Implementation, and Sustainability Model (PRISM). We gathered perspectives, feedback, and recommendations about BACK to inform adaptation of the intervention and implementation strategy packages.

Participants (n = 39) included 6 asthma navigators, 17 school nurses, and 16 caregivers. Four overarching themes emerged: 1) perceived benefits of the BACK program, 2) challenges with school nurse engagement, communication, and perceptions of BACK, 3) difficulty with identification, documentation, and enrollment of students with asthma at the beginning of the school year, and 4) mismatches in program scope and alignment with school and family contexts.

Identifying key challenges and participant recommendations supported the research team’s “adapt and tailor to context” strategy in annual rapid evaluation and planning cycles. Obtaining feedback from program adopters, implementers, and recipients led to complementary recommendations to improve program delivery and user experiences. This approach may be transferable to other implementation-effectiveness trials, particularly those in schools or with other natural pauses that facilitate annual iterations in program delivery.

Clinicaltrials.gov identifier NCT06003569, registered on August 22, 2023, https://clinicaltrials.gov/study/NCT06003569

This qualitative study sought to explore the unique experiences of children receiving hematopoietic stem cell transplant (HCT) and their caregivers, with a primary focus on the multifaceted aspects of adherence following discharge.

Convenience sampling was used to enroll 14 caregivers and 15 children at a large Midwestern children’s hospital. Children had an allogenic HCT for a malignant or nonmalignant disorder and were 1–12 months off immunosuppression. Participants completed a semi-structured interview in the HCT-clinic or via phone about the child’s experience taking medications and adhering to post-transplant guidelines.

Caregivers were primarily female (n = 13, 87%), White (n = 11, 73%), and not Hispanic (n = 15, 100%). Children were primarily male (n = 9, 60%), White (n = 10, 67%; missing: n = 3), and not Hispanic (n = 13, 87%; missing: n = 2). Children’s average age was 13.14 years (SD = 2.88). Two primary themes emerged from the interviews, (1) family navigation and self-management of post-HCT medications and restrictions with 3 subthemes highlighting structured routines, adaptations to life post-HCT, and experiences with daily restrictions and other aspects of care; (2) advice from families on navigating post-HCT care with 2 subthemes highlighting communication and strategies for maneuvering post-HCT treatment. Of note, half of caregivers (n = 7, 50%) reported the child was responsible for taking their medications, and 43% (n = 6) of children were responsible for knowing when to take their medications.

This study contributes a nuanced understanding of adherence in pediatric HCT, emphasizing the need for tailored interventions that transcend traditional medical frameworks and enable clear communication between families and the medical team. Findings underscore the importance of providers adopting a comprehensive and patient-centered approach. Healthcare providers should consider the psychosocial aspects of HCT, implement tailored family-centered strategies to optimize adherence, and prioritize comprehensive communication to improve outcomes.

To describe neuropathological findings in autopsies of patients with isolated, partial or all classic features of the septo-optic-pituitary dysplasia (SOD) triad, speculate on SOD etiology and ascertain the causes of death.

Retrospective review of autopsy reports of patients with one or more features of the SOD triad.

Twenty-one (14 females) cases were identified. Median age at death was 2.3 years. Two fetuses died soon after birth, and the rest died at postnatal ages of 3 weeks to 50 years. Ten cases had optic nerve hypoplasia (ONH) with either (i) small pituitary gland/hypopituitarism (five cases) or (ii) absent septum pellucidum (SP)/abnormal corpus callosum (CC) (two cases) or (iii) both (three cases). Eleven cases had one or two features of the SOD triad. A wide spectrum of neuropathological findings was evident, with 12 cases resulting from in utero/perinatal vascular lesions in brain regions that led to ONH/chiasm hypoplasia, hypothalamus/pituitary gland anomalies and agenesis or abnormalities in the SP, CC and olfactory bulbs and tracts. Other suspected causes included three genetic (one with holoprosencephaly), two in utero infection and one arachnoid cyst with hydrocephalus. The most common cause of death was a respiratory illness.

The autopsy findings appear to be the result of destructive or less commonly impaired developmental processes. Our findings suggest that SOD is not a single disease entity but represents a syndrome with ONH and one or more of: hypothalamic-pituitary dysfunction and absent SP or abnormal CC. We consider ONH an essential part of SOD.

Evaluate and improve the accuracy of disaster triage decisions for pediatric patients among clinicians of various training levels using the Sort, Assess, Life-Saving Intervention, Treatment/Transport (SALT) triage system.

We used an online pediatric disaster triage module to evaluate and improve accuracy of triage decisions. During a pre- and post-test activity, participants triaged 20 fictional patients. Between activities, participants completed a didactic covering concepts of disaster triage, SALT triage, and pediatric limitations of triage systems. We assessed accuracy and improvement with non-parametric tests.

There were 48 participants: 27 pediatric emergency medicine attendings (56%), 9 pediatric emergency medicine fellows (19%), 12 pediatric residents (25%). The median (interquartile range [IQR]) pre-test percent accuracy across all participants was 75 (IQR 65-85). Attendings scored higher than residents 80 (IQR 73-88) compared to 60 (IQR 55-65, P < 0.01) but not significantly higher than fellows 75 (IQR 70-85, P = 0.6). For the 44 participants who completed both the pre- and post-test, median score significantly improved from 75 (65-85) to 80 (75-90), P < 0.01.

The accuracy of triage decisions varies at different training levels. An online module can deliver just-in-time triage training and improve accuracy of triage decisions for pediatric patients, especially among pediatric residents.

To quantify optic nerve hypoplasia/septo-optic-pituitary dysplasia (ONH/SOD) all-cause mortality rate and risk of death in Manitoba, Canada.

A retrospective population-based study with a case–control design was undertaken using the Manitoba Population Research Data Repository. Cases were 124 ONH/SOD patients diagnosed during 1990–2019, matched to 620 unrelated population-based controls on year of birth, sex and area of residence. Both cases and controls were followed until March 31, 2022, or until they moved out of the province or died. Crude mortality rate was estimated. Cox proportional hazards models were used to test for differences in all-cause mortality between cases and controls. Hazard ratios (HR) with 95% confidence intervals (CIs) were estimated.

Six of 124 (4.8%) cases with ONH/SOD and 8 of 620 (1.3%) controls died during the study’s follow-up period. The median (25th–75th percentiles) age of death of ONH/SOD patients was 4.6 (2.7–9.1) years. The median duration of follow-up was 12.0 years for the cases and 11.4 years for the controls. The crude mortality rate (95% CIs) was 3.7 (1.7–8.3) per 1000 person-years in patients with ONH/SOD and 1.0 (0.5–2.1) per 1000 person-years in unrelated matched controls. All-cause mortality was significantly higher in ONH/SOD patients compared to unrelated controls (HR = 3.7, 95% CI = 1.3–10.5).

Patients with ONH/SOD have a higher risk of death compared to unrelated controls. Healthcare professionals should be familiar with the morbidities and comorbidities associated with ONH/SOD and the complications that may lead to their demise, since they can be managed to reduce the mortality risk.

Radiofrequency catheter ablation of ventricular arrhythmias, originating from the left ventricular summit, is challenging due to epicardial localisation of the substrate, surrounded by coronary arteries. This paper highlights the successful elimination of LVOT summit ventricular arrhythmia which was ablated from the aortic cusp and aortic mitral continuity in two paediatric patients.

Ventricular tachycardia arising from the basal region of the left ventricular summit was identified in two male patients aged 9 and 13 years. Electroanatomic mapping of ventricular arrhythmia revealed the earliest ventricular signal within the left coronary artery which was successfully ablated from the left coronary cusp. The second patient with exactly similar ECG of ventricular arrhythmia was treated by delivering energy to the aorta-mitral continuity beneath the aortic valve. No recurrences were observed during the follow-up period of 20 months.

Ventricular tachycardia arising from the basal region of the left ventricular summit is very rarely observed in paediatric patients. Utilising radiofrequency catheter ablation in proximity to the source can effectively and safely eliminate tachycardia.

To evaluate the indications, outcomes, and recurrence rates of elective paediatric functional endoscopic sinus surgery at a tertiary centre, and to highlight the continued importance of multidisciplinary management.

A retrospective review included 65 patients (age range 5–17 years) undergoing elective paediatric functional endoscopic sinus surgery from January 2017 to December 2024. Data on demographics, surgical details, additional procedures, and revision rates were collected. Logistic regression identified predictors of revision.

Chronic rhinosinusitis was the most common indication (45/65), with 62 per cent requiring polypectomy and 84 per cent undergoing middle meatal antrostomy. Fifteen percent had cystic fibrosis; cystic fibrosis status significantly predicted revision (odds ratio 8.5, p = 0.007). A multidisciplinary approach was crucial for the 20 per cent needing additional procedures. No major complications were reported.

Paediatric functional endoscopic sinus surgery is safe and effective for paediatric sinonasal disease, particularly where balloon sinuplasty is insufficient for polyposis. Multicentre collaborations will help refine selection criteria and enhance long-term outcomes.

Retropharyngeal and parapharyngeal infections can be managed surgically or conservatively. A trial of medical treatment before considering computed tomography (CT) imaging may be appropriate.

This is a retrospective review of patients with retropharyngeal and parapharyngeal infections between October 2022 and April 2023. Descriptive and statistical analysis compared surgically and conservatively managed patients.

There were 33 patients (median age 58 months). CT imaging was acquired for 30 of 33 patients (90.9 per cent) and 25 had a CT scan within 24 hours of presentation. Fourteen patients (42.4 per cent) were managed surgically. The mean duration of antibiotics for surgically and conservatively managed patients was not significantly different (19.9 vs 21.4 days, p = 0.73). Larger lesions were observed on the CT scans of surgically treated patients (22.8 vs 15.6 mm, p = 0.01).

Management of paediatric retropharyngeal and parapharyngeal infections can be surgical or conservative. We propose a management algorithm that allows an initial trial of intravenous antibiotics before CT imaging for selected patients.

Palliative care services are unavailable for the vast majority of children in Bhutan. Children’s palliative care has not been incorporated into training programs for health professions, leading to limited knowledge and awareness of how best to support children facing serious or life-threatening conditions.

To describe the impact of the Project ECHO children’s palliative care course on participants’ knowledge, comfort, and attitudes and to evaluate the overall acceptability of an online training to support palliative care training in Bhutan.

Before-and-after surveys of program participants were conducted, assessing changes in knowledge, comfort, and attitudes. Participants’ overall experiences and acceptability of the learning program were assessed through an end-of-program survey.

Participants were primarily nurses (49%) or physicians (34%). Most participants (68%) worked in pediatric and/or neonatal care. Participants’ knowledge of core palliative care concepts improved significantly between the beginning and end of the course. Participants’ comfort and attitudes toward palliative care also improved, with significance effect sizes in most domains (11/18). Satisfaction with the program was high, with 100% of participants agreeing that the training was applicable to their clinical practice. Although most participants (56%) identified a personal need for additional clinical training to support practice change.

Project ECHO can be used to deliver palliative care education, with improved palliative care knowledge, comfort, and attitudes among program participants. A short online training program can generate interest in palliative care, which can be leveraged to further develop palliative care services in settings where palliative care is currently unavailable.

The prevalence of youth anxiety and depression has increased globally, with limited causal explanations. Long-term physical health conditions (LTCs) affect 20–40% of youth, with rates also rising. LTCs are associated with higher rates of youth depression and anxiety; however, it is uncertain whether observed associations are causal or explained by unmeasured confounding or reverse causation.

Using data from the Norwegian Mother, Father, and Child Cohort Study (MoBa) and Norwegian National Patient Registry, we investigated phenotypic associations between childhood LTCs, and depression and anxiety diagnoses in youth (<19 years), defined using ICD-10 diagnoses and self-rated measures. We then conducted two-sample Mendelian Randomization (MR) analyses using SNPs associated with childhood LTCs from existing genome-wide association studies (GWAS) as instrumental variables. Outcomes were: (i) diagnoses of major depressive disorder (MDD) and anxiety disorders or elevated symptoms in MoBa, and (ii) youth-onset MDD using summary statistics from a GWAS in iPSYCH2015 cohort.

Having any childhood LTC phenotype was associated with elevated youth MDD (OR = 1.48 [95% CIs 1.19, 1.85], p = 4.2×10−4) and anxiety disorder risk (OR = 1.44 [1.20, 1.73], p = 7.9×10−5). Observational and MR analyses in MoBa were consistent with a causal relationship between migraine and depression (IVW OR = 1.38 [1.19, 1.60], pFDR = 1.8x10−4). MR analyses using iPSYCH2015 did not support a causal link between LTC genetic liabilities and youth-onset depression or in the reverse direction.

Childhood LTCs are associated with depression and anxiety in youth, however, little evidence of causation between LTCs genetic liability and youth depression/anxiety was identified from MR analyses, except for migraine.