Is it early enough? The authentic meaning of the pediatric palliative approach between early and late referral in pediatric oncology: a case study.

The literature widely supports the benefits of early integration of palliative care into pediatric oncological care; however, many barriers to its successful integration remain. Integrating palliative care as early as possible in the oncology pathway is critical, but other criteria are relevant to positive results. This paper aims to contribute to the early/late referral dualism in pediatric palliative care (PPC) and highlight the importance of a collaborative approach between oncologists and palliative care teams. This study investigates the impact of early versus late referral to PPC, intersecting it with the synergy work between services and the related outcomes. The four pediatric cancer cases were selected based on clinical (e.g., disease duration, multiple treatments, and pain management), management (e.g., involvement of multiple services and multiple home-hospital transitions), and relevance of multidisciplinary team (e.g., difficult clinical decisions and ethical discussions) criteria. A mixed-methods approach was employed, combining qualitative case analysis using clinical diaries, literature review, and practice guidelines development. Critical clinical information, time course, clinician-family communication, and patient involvement were analyzed. The outcomes show how simultaneous care creates continuous discussion and dialogue between professionals. The results indicate the importance of better communication and care coordination to improve patient and family satisfaction, highlighting the uniqueness of the pediatric field and the relationship with children and families. Through the discussion of clinical cases and a literature review, we provide practical guidance for clinicians working in oncology and PPC. These findings underscore the crucial need for a multidisciplinary approach in pediatric oncology, advocating policy changes to support early PPC integration and translate it into complementarity best operating practices. In conclusion, besides assessing the timeliness of referral to the PPC service, the synergy, harmony, and choral work of the professionals involved are equally valuable for a quality-of-life-oriented care plan.

A 15-year experience in pediatric palliative care: a retrospective hospital-based study.

BACKGROUND: The current Italian scenario of pediatric palliative care (PPC) services is characterized by inadequate coverage of the territory. Therefore, it is important to improve the referral of patients to the most appropriate setting (community care, general PPC, or specialized PPC) and to improve the delivery of PPC care. METHODS: Aiming at obtaining information about the referrals to the Padua Pediatric Hospice that could help estimate the investments needed to improve the provision of care, a retrospective analysis has been carried out. The rate of proper referral and discharge, the number of patients followed at the hospice, the mortality rate, and the length of follow-up were analyzed, and, when possible, data were stratified by oncological and non-oncological diseases. RESULTS: The analysis showed that of the 870 patients referred to the Padua Pediatric Hospice between 2008 and 2022, 76% were affected by non-oncological conditions. 82% of patients referred were taken in charge and most of the remaining patients have been inappropriately referred. The analysis showed a growing number of total referrals, which increased by 195% from 2008 to 2022. An increase in proper referrals and referrals of non-oncological patients was observed alongside a decrease in oncological patient referrals and a trend toward a decrease in discharge rates. A decreased mortality was observed in patients with non-oncological conditions, with only 6% of deceased patients in 2022. Moreover, a longer survival with a median follow-up length of 43 months was observed among patients with non-oncological conditions who were followed up at the Padua Pediatric Hospice for more than 12 months. Conversely, the short survival rate observed for oncological patients suggests that those patients should have been referred to PPC earlier to benefit from palliative care for longer periods. CONCLUSIONS: Considering these data, it is expected that the number of patients needing PPC services will steadily increase in the next years. Hence, there is a need to invest resources to provide the best care delivery model encompassing specific pathways for the transition into adulthood, the establishment of networks within all the Italian regions, and an efficient referral to the more suitable setting of care.

Polypharmacy in Children with Medical Complexity: A Cross-Sectional Study in a Pediatric Palliative Care Center.

BACKGROUND: Children with medical complexity (CMC) often require multiple medications, leading to polypharmacy, which seems to be linked to adverse effects, administration errors, and increased caregiver burden. This study aimed to describe the prevalence of polypharmacy, medication burden, off-label drug use, and associated costs. METHODS: Conducted at the Pediatric Palliative Care Center of Padua, Italy, from August to October 2021, this cross-sectional observational study included patients up to 23 years old with at least one prescribed drug. Data were collected from medical records and caregiver interviews. Drug costs were collected from the Italian Medicine Agency. Descriptive statistical analysis was performed. For comparisons among categorical variables, the Chi-square test was used, and for those among continuous variables, the ANOVA test was used. RESULTS: This study analyzed treatment regimens of 169 patients with a median age of 12.5 years (0.3-23). Polypharmacy was present in 52.7% of patients, and medication burden was observed in 44.4%, both varying significantly by primary diagnosis (p < 0.001). The median daily cost per patient was EUR 2.2 (IQR 0.9-7.1), with significant variation among subgroups. Only 34.6% of prescriptions were off-label. CONCLUSIONS: polypharmacy and medication burden are frequent among our CMC population, with some differences according to primary diagnosis.

Association between Portal Vein Thrombosis after Umbilical Vein Catheterization and Neonatal Asphyxia.

INTRODUCTION: Neonatal portal vein thrombosis (PVT) is frequently related to umbilical venous catheterization (UVC), but risk factors remain unclear. This study aims to analyze the variables associated to PVT in near- to full-term newborns with UVC, with a focus on newborns exposed to controlled therapeutic hypothermia (CTH) for hypoxic ischemic encephalopathy (HIE). METHODS: This is retrospective cohort study of infants delivered at or after 36 weeks and with a birthweight over 1,500 g. All infants were assessed for UVC location and PVT using ultrasonography performed between day 5 and day 10 after catheterization. RESULTS: Among 213 eligible patients, PVT was diagnosed in 57 (27%); among them, 54 (95%) were localized in the left portal vein branch. With all significant factors in univariate analysis considered, higher gestational age at birth (adjusted OR 1.35; 95% CI: 1.12-1.64, p = 0.002) and duration of UVC placement (adjusted OR 1.36; 95% CI: 1.11-1.67, p = 0.004) were the main risk factors of PVT. Among 87 infants who were cooled for HIE, 31 (36%) had PVT compared to 26 (21%) in infants without CTH. Using a multivariate model including variables linked to treatment procedures only, an increased PVT incidence was statistically associated with UVC duration (adjusted OR 1.33; 95% CI: 1.08; 1.63, p = 0.01) and CTH (adjusted OR 1.94; 95% CI: 1.04-3.65, p = 0.04). CONCLUSION: Left PVT was frequently observed in near- to full-term neonates with UVC. Among factors linked to treatment procedures, both duration of UVC and CTH exposure for HIE were found to be independent risk factors of PVT.

Pediatric basic course goes virtual: transition from face to face to hybrid learning in pediatric critical care.

BACKGROUND: To explore the impact of the transition from a traditional face-to-face course delivering essential contents in pediatric critical care to a hybrid format consisting of an online pre-course self-directed learning, an online facilitated discussion, and a face-to-face edition. METHODS: Attendees and faculty were surveyed after the face-to-face course and the hybrid version to evaluate the effectiveness and satisfaction of participants with the course. RESULTS: Fifty-seven students attended multiple formats of the Pediatric Basic Course between January 2020 and October 2021 in Udine, Italy. We compared course evaluation data from the 29 attendees of the face-to-face course with the 28 of the hybrid edition. Data collected included participant demographics, participant self-assessed pre and post-course ''confidence'' with a range of pediatric intensive care-related activities, and their satisfaction with elements of the course. There were no statistical differences in participant demographics or pre and post-course confidence scores. Overall satisfaction with the face-to-face course was marginally higher, 4.59 vs. 4.25/5, but did not reach significance. Pre-recorded lectures which could be viewed several times, were highlighted as a positive for the hybrid course. Residents found no significant differences comparing the two courses in rating the lectures and the technical skills stations. Hybrid course facilities (online platform and uploaded material) were reported to be clear, accessible, and valuable by 87% of attendees. After six months, they still find the course relevant to their clinical practice (75%). Candidates considered the respiratory failure and mechanical ventilation modules the most relevant modules. CONCLUSIONS: The Pediatric Basic Course helps residents strengthen their learning and identify areas to improve their knowledge. Both face-to-face and hybrid model versions of the course improved attendees' knowledge and perceived confidence in managing the critically ill child.

Early pediatric palliative care involvement in a child with a large deletion of the short arm (p) of chromosome 10: a case report.

BACKGROUND: We present a case of a Chinese child with one of the largest terminal deletions (21 Mb) of the short arm of chromosome 10 (10p) reported to date. Distal monosomy 10p is a rare chromosomal disorder characterized by intellectual disability, postnatal growth retardation, structural birth defects and dysmorphisms. Mutations in certain 10p regions have been associated with distinct clinical features, but the real weight of each component cannot be estimated in a large deletion like that of our child; therefore, long-term prognosis is difficult to predict precisely, although it certainly foresees a severe impact on the psychomotor development of the child. CASE DESCRIPTION: Diagnosis was made in the early neonatal period because of several dysmorphic features and multiple organ involvement. Since the patient's care needs were complex, the Pediatric Palliative Care (PPC) and Pain Service team was involved as a case manager and coordinator from the beginning. In the Veneto region of Italy, our PPC center offers a palliative care approach, through the national health system, embedded with curative-restorative care providing many support activities (such as physiotherapy, physiological support and home assistance) valuable for patients and their families' quality of life. Despite overlap in many characteristics of our child and other children who receive PPC services, the experience of children who have rare genetic conditions and undetermined prognosis with PPC services is still largely unknown. Periodic hospitalization for multidisciplinary follow-up and reassessment of patient's needs were arranged and any rehabilitation program focused on improving her skills was followed. At 5 years of age, her medical condition is controlled and well managed. CONCLUSIONS: This case represents a good example of complex care management by the PPC team, which takes into account the patient's and family's needs enhancing their quality of lives, as reported and underlined by parents themselves. This approach could be considered for other children with rare medical conditions without a definite prognosis.

End-of-life decisions and practices as viewed by health professionals in pediatric critical care: A European survey study.

Background and Aim: End-of-Life (EOL) decision-making in paediatric critical care can be complex and heterogeneous, reflecting national culture and law as well as the relative resources provided for healthcare. This study aimed to identify similarities and differences in the experiences and attitudes of European paediatric intensive care doctors, nurses and allied health professionals about end-of-life decision-making and care. Methods: This was a cross-sectional observational study in which we distributed an electronic survey to the European Society of Paediatric and Neonatal Intensive Care (ESPNIC) members by email and social media. The survey had three sections: (i) 16 items about attitudes to EOL care, (ii) 14 items about EOL decisions, and (iii) 18 items about EOL care in practice. We used a 5-point Likert scale and performed descriptive statistical analysis. Results: Overall, 198 questionnaires were completed by physicians (62%), nurses (34%) and allied health professionals (4%). Nurses reported less active involvement in decision-making processes than doctors (64% vs. 95%; p < 0.001). As viewed by the child and family, the child's expected future quality of life was recognised as one of the most critical considerations in EOL decision-making. Sub-analysis of Northern, Central and Southern European regions revealed differences in the optimal timing of EOL decisions. Most respondents (n = 179; 90%) supported discussing organ donation with parents during EOL planning. In the sub-region analysis, differences were observed in the provision of deep sedation and nutritional support during EOL care. Conclusions: This study has shown similar attitudes and experiences of EOL care among paediatric critical care professionals within European regions, but differences persist between European regions. Nurses are less involved in EOL decision-making than physicians. Further research should identify the key cultural, religious, legal and resource differences underlying these discrepancies. We recommend multi-professional ethics education to improve EOL care in European Paediatric Intensive Care.

Ethical responsibilities of European children's teams facing the resurgent COVID-19 pandemic.

The COrona VIrus Disease 2019 (COVID-19) pandemic is posing an unprecedented challenge to healthcare systems around the globe. Europe has been struggling for 1 year now, and despite some encouraging progress (above all, the beginning of vaccination), the second wave is ongoing. Even though children are less affected than adults, the COVID-19 pandemic-and in particular the measures to counter it-is having a considerable impact on the paediatric healthcare setting. It is, therefore, the duty of paediatric teams in Europe to prepare for the challenges ahead. We wish to contribute to this necessary preparedness in two ways: firstly, by assessing the direct and indirect impact of the pandemic on children and on the paediatric setting; secondly, and more importantly, by identifying the various responsibilities of paediatric healthcare professionals, in light of established ethical principles. Only abiding by these responsibilities will it be possible to ensure that ill children and their families are properly supported even in these difficult times and to grant that decisions about children's healthcare remain morally justified and lawful. What is Known: • The COVID-19 outbreak is posing an unprecedented challenge to healthcare systems around the globe • Despite the children are less affected than adults, the COVID-19 pandemic is having a huge impact also on paediatric setting What is New: • The COVID-19 pandemic lays out specific responsibilities of paediatric professionals towards our pa-tients, society and ourselves • The paediatric teams in Europe should assess the direct and indirect impact of the pandemic on the chil-dren and on the paediatric settings, ensuring consistency between centres and across regions in Europe.

Uso de la simulación durante la pandemia COVID-19 en las UCIP españolas. Nuevos retos en educación médica / Simulation during COVID-19 pandemic in the Spanish pediatric intensive care units: New challenges in medical education

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COVID-19 in pediatric palliative care: what can we learn from the pandemic and possible future directions.

INTRODUCTION: Patients in pediatric palliative care (PPC) live with multiple comorbidities which represent a risk factor for severe form of COVID-19. METHODS: This monocentric retrospective study was performed at the PPC Center of Padua (Italy). Testing methodology, prevention strategies and infection characteristics were documented and compared during the first and second peak of SARS-CoV-2 infection. RESULTS: Between April-June 2020 a population swab screening was performed and a strong reduction of the habitual family support was observed. Between November 2020-January 2021 swab testing was limited to specific cases and the support network for families was partially restored. Incidence of COVID-19 was low, resulting in 0.04% of total pediatic cases in the Veneto Region. No severe forms were observed. CONCLUSION: The use of adequate preventive measures by families and support networks associated with testing in specific contests is safe, cost effective and has a minor impact on caregiver's care load.

Therapeutic Plasma Exchange in Neonates and Infants: Successful Use of a Miniaturized Machine.

Therapeutic plasma exchange (TPE) in neonates and small infants is a treatment method at the forefront that may become a potentially life-saving procedure in a wide array of severe conditions. Indications for TPE in the pediatric population have been mainly derived from adult literature, with neonatal hyperbilirubinemia being the most notable exception. The only alternative to TPE in small pediatric patients is manual blood exchange transfusion, which, however, bears an unacceptably high risk of severe complications. Still, technical issues due to extracorporeal circulation in neonates have burdened TPE so far, since machines developed for adults require a relatively large blood volume to operate. We in this study, describe our preliminary experience of TPE for treating 2 potentially life-threatening conditions in neonatal age. To overcome the aforementioned limitations, plasmapheresis was performed in both cases using a machine specifically designed for patients weighing less than 10 kg.