OBJECTIVE: The objective of this study was to describe our experience removing esophageal coins from children in a tertiary care pediatric emergency department over a 4-year period. METHODS: We retrospectively reviewed a continuous quality…
OBJECTIVES: The burden of suffering among patients with end-stage chronic diseases may be greater than those of cancer patients, as a result of longer duration of illness trajectory and high prevalence of symptoms, yet they may be less likely to…
PURPOSE: To determine how decisions to forgo life support are made in European pediatric intensive care units (PICUs). METHODS: A multicenter, prospective study, the Eurydice II study, among 45 PICUs: 20 in France, 21 in Northern/Western (N/W)…
Purpose Research has only begun to examine the complexity of transition to adulthood under illness conditions. A Delphi method may be utilized to identify pertinent research priorities for academics and clinicians in adolescent healthcare transitions…
AIM: To identify the nature of services for children and young people with progressive neuromuscular disorders (NMD) provided by Children's Hospices in the UK. METHODS: A questionnaire requesting aggregate data on the number of patients with a…
Background Working within the landscape of death and dying, professionals in palliative and hospice care provide insight into the nature of mortality that may be of benefit to individuals facing the end of life. Much less is known about how these…
CONTEXT: A small proportion of patients with serious illness or multiple chronic conditions account for the majority of health care spending. Despite the high cost, evidence demonstrates that these patients receive health care of inadequate quality,…
The aim of this study was to identify and describe resilience qualities in families after losing a child. Questionnaires, including an open-ended question, were utilized to collect data independently from the parents and siblings of the deceased in…
Lesch-Nyhan disease (LND) is characterized by dystonia, cognitive abnormalities, and self-injurious behavior. No effective therapies are available. LND is associated with a presynaptic dopaminergic deficit, but the reported effects of dopamine…
Loss of hand function is a core feature of Rett syndrome. This article describes longitudinal hand function at 3 time points for 72 subjects participating in the Australian Rett Syndrome Database. Approximately 40% of subjects with some grasping…
A child’s early experiences and environments have a significant, measurable effect on later life trajectories of health and well-being. Each child’s own world, especially parents and other caregivers, literally sculpts the brain and impacts stress…
Guideline or diagnostic criteria in clinical practice assist physicians in their clinical decision-making and improve health outcomes for patients. Diagnostic and classification criteria are based on evidence from rigorously conducted controlled…
Abstract Background: When a patient is expected to die, the ideal plan of care focuses on comfort. Prior investigation of application of one institution's end-of-life symptom management order (ESMO) protocol suggested that comfort measures were often…
The death of an infant is a profound loss that may complicate, disrupt, or end relationships between parents; and lead to maladaptive grieving, long-term decreased quality of life, and symptoms related to psychological morbidity. Facing neonatal loss…
Patients with advanced dementia often receive poor end-of-life care. We aimed to design and pilot a palliative care and advance care plan (ACP) intervention. Patients had undergone emergency hospital admission and had severe dementia. The…
Pediatric surgeons can play an important role in offering procedures that may improve the quality of life for terminally ill children. As with all palliative interventions, surgical therapies should be evaluated in the context of explicitly defined…
The objective of this qualitative study was to explore the perceptions and needs of families who care for a child with a life-limiting disease. Considering the heterogeneity of life-limiting diseases in childhood, three diagnostic groups were…
Adolescents and young adults (AYA) with advanced or terminal cancer have distinctive medical and psychosocial needs that may not have been adequately provided by either pediatric or adult palliative care services. A discussion group, as part of a…
INTRODUCTION: Palliative care services that address physical pain and emotional, psychosocial, and spiritual needs may benefit individuals with Duchenne muscular dystrophy (DMD). METHODS: The objective of this study was to describe the palliative…
The enormous burden of life-threatening illnesses, including cancer, human immunodeficiency virus infection, and others, such as sickle cell disease, associated with physical and psychosocial suffering explains the illustrious need for palliative…
OBJECTIVE: To assess the benefit of proactive palliative medicine consultation for delineation of goals of care and quality-of-life preferences before implantation of left ventricular assist devices as destination therapy (DT)., PATIENTS AND METHODS:…
OBJECTIVE: The purpose of this study was to assess the impact of a palliative medicine consultation on medical intensive care unit (MICU) and hospital length of stay, Do Not Resuscitate (DNR) designation, and location of death for MICU patients who…
Objectives: To demonstrate feasibility and estimate the effect of an intervention to increase parental involvement in infant pain management in the NICU on parents' stress and postdischarge parenting competence and confidence. Methods: The study…
