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PURPOSE: Adolescents and young adults (AYA) with cancer require highly individualized, age-specific end-of-life care. This study identified the characteristics of AYA patients with cancer receiving home-based palliative care and explored their unique…
BACKGROUND: The death of a child is one of the most devastating events a family can face, resulting in significant physical and psychosocial morbidity. Bereavement support programs have been developed in high-income contexts to address this need.…
Pediatric palliative care is a holistic care of children suffering from life-threatening or life-limiting illnesses and encompasses care of a child's body, mind, and spirit and involves giving support to the family. According to the Global Atlas of…
Abstract Palliative care for children with neurological conditions is essential to improve their quality of life and that of their family, given their uncontrollable symptoms and associated disabilities. These conditions include genetic diseases,…
Introduction: Patients managed in the Pediatric Palliative Care Integral Unit (PPCIU) have serious neurological conditions that involve significant damage at central nervous system level. The movement disorder is a very common clinical problem and…
OBJECTIVE: To identify factors associated with the receipt, completion, and goals of palliative care birth plans during the prenatal period. DESIGN: Retrospective observational study of medical record data. SETTING: Midwestern U.S. quaternary…
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…
Background: Understanding interventions preceding death in children with immunocompromised conditions is important to ensure a peaceful and dignified perideath experience. The aim of this study was to describe the number of interventions performed in…
Paediatric Palliative Care Ambulance Plans ('Plans') are used by New South Wales Ambulance (Australia) to support the care needs of children with life-limiting conditions. We aimed to describe the population of children with Plans and provide details…
BACKGROUND: Childhood cancer causes significant physical and emotional stress. Patients and families benefit from palliative care (PC) to reduce symptom burden, improve quality of life, and enhance family-centered care. We evaluated palliative…
BACKGROUND: Patterns in location of death among children with life-threatening conditions (e.g., cancer, genetic disorders, neurologic conditions) may reveal important inequities in access to hospital and community support services. We aimed to…
Objectives: About 16,000 infants die in the neonatal intensive care unit (NICU) each year with many experiencing invasive medical treatments and high number of symptoms.1 To inform better management, we characterized diagnoses, symptoms, and patterns…
Abstract Context: Palliative sedation practices evolved in France when the Claeys-Leonetti law passed in 2016 authorized patient-requested continuous deep sedation (CDS) until death. Its implementation in the pediatric setting is less frequently…
BACKGROUND: Pain is the most common symptom reported by caregivers of children with severe neurological impairment (SNI), a descriptive term for children with disorders affecting the neurological system across multiple domains. In SNI, cognition,…
BACKGROUND: Autism spectrum disorder (ASD) is a neurodevelopmental condition estimated to affect 1 in 66 children in Canada and 1 in 270 individuals worldwide. As effective therapies for the management of ASD core and associated symptoms are limited,…
OBJECTIVE: To determine the prevalence of life support limitation (LSL) in patients who died after at least 24h of a pediatric intensive care unit (PICU) stay, parent participation and to describe how this type of care is delivered. METHODS:…
BACKGROUND AND OBJECTIVE: To assess the racial and ethnic disparity in the prevalence of complex chronic conditions (CCC) and/or in-hospital death among US-born very low birth weight (VLBW,
AIM: Hospital readmissions within 28 days are an important performance measurement of quality and safety of health care. The aims of this study were to examine the rates, trends and characteristics of paediatric intensive care unit admissions, and…
OBJECTIVE: Reducing emergency department (ED) use in children with complex chronic conditions (CCC) is a national health system priority. Emergency department visits with minimal clinical intervention may be the most avoidable. We assessed…
Background: Children with life-limiting conditions receive specialist paediatric care in childhood, but the transition to adult care during adolescence. There are concerns about transition, including a lack of continuity in care and that it may lead…
BACKGROUND: Early identification of patients in the pediatric intensive care unit (PICU) at risk of nutritional status (NS) deterioration and poor outcomes is desirable. We aimed to identify factors associated with NS deterioration and prolonged PICU…
BACKGROUND: Palliative sedation is consciously reducing the patient's consciousness to alleviate the refractory symptoms. However, studies on palliative sedation for children are scarce. We aimed to survey the symptom control and risks for children…
Objective The goal of this study was to compare rural and urban pediatric hospice patients in Appalachia. Methods Using a retrospective, nonexperimental design, we sought to compare characteristics of Appalachian rural and urban children younger than…
BACKGROUND: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. OBJECTIVE: Our study adds to the literature both by describing…
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).…
OBJECTIVES: To characterize patterns of surgery among pediatric patients during terminal hospitalizations in children's hospitals. METHODS: We reviewed patients ≤20 years of age who died among 4 424 886 hospitalizations from January 2013-December…
Neonatal organ and tissue donation is not common practice in the Netherlands. At the same time, there is a transplant waiting list for small size-matched organs and tissues. Multiple factors may contribute to low neonatal donation rates, including a…
OBJECTIVES: Children with medical complexity (CMC) have an increased risk of adverse events after hospital discharge. Authors of previous studies have evaluated discharge communication practices with primary care providers (PCPs) in adults and…
OBJECTIVES: Hospital discharge offers an opportunity to initiate coordination of follow-up care, preventing readmissions or emergency department (ED) recidivism. We evaluated how revisits and costs of care varied in a 12-month period between children…
Objectives The objective of this study was to describe the characteristics of pediatric palliative care (PPC) patients presenting to a pediatric emergency department (ED) and these patients' ED visits. Methods This retrospective chart review was…
AIM: To examine paediatric deaths following withdrawal or withholding of medical treatment (WWMT) from a hospital-wide perspective and identify changes over a 10 year period. METHODS: A retrospective review of medical records was conducted for all…
OBJECTIVES: To assess the ability of two illness severity scores, Pediatric Logistic Organ Dysfunction Score 2 and Pediatric Index of Mortality 3, in predicting PICU-acquired morbidity. DESIGN: Retrospective chart review conducted from April 2015 to…
OBJECTIVE: To assess the validity of an electronic version of the Pediatric Index of Mortality 2 score. DESIGN: Retrospective observational study. SETTING: Pediatric and cardiac ICUs at a quaternary medical center. PATIENTS: Patients more than 60…
BACKGROUND: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. OBJECTIVE: Our study adds to the literature both by describing…
Lived experiences of childhood cancer patients and their families have been described as interrupted and as a loss of normal life. Apart from symptoms due to the cancer disease, families continuously experience burden of treatment. Since coping…
Neurodegeneration with brain iron accumulation encompasses a heterogeneous group of rare neurodegenerative disorders that are characterized by iron accumulation in the brain. Severe generalized dystonia is frequently a prominent symptom and can be…
Twenty-one patients with the diagnosis of mucopolysaccharidosis or mucolipidosis and a history of respiratory complaints or thorough respiratory evaluation were studied retrospectively. Anatomic factors affecting respiratory status included: (i)…
OBJECTIVES: To clarify the feature of sleep disordered breathing (SDB) associated with childhood-onset acid maltase deficiency (AMD): the progressive nature of SDB and the stage of AMD.;STUDY DESIGN: We retrospectively studied 4 patients with…
Rett syndrome is a rare but severe neurological disorder typically associated with a mutation in the MECP2 gene. We describe change in gross motor function over 3 to 4 years for 70 subjects participating in the Australian Rett Syndrome Database.…
