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Paediatric palliative care is an emerging subspecialty that focuses on achieving the best possible quality of life for children with life-threatening conditions and their families. To achieve this goal, the individuals working in this field need to: clearly define the population served; better understand the needs of children with life-threatening(More)
OBJECTIVE To describe demographic and clinical characteristics and outcomes of patients who received hospital-based pediatric palliative care (PPC) consultations. DESIGN, SETTING, AND PATIENTS Prospective observational cohort study of all patients served by 6 hospital-based PPC teams in the United States and Canada from January to March 2008. RESULTS(More)
PURPOSE Concerns about the harms of prognostic information, including distress and loss of hope, cause some physicians to avoid frank disclosure. We aimed to determine parent preferences for prognostic information about their children with cancer and the results of receiving such information. PATIENTS AND METHODS We surveyed 194 parents of children with(More)
BACKGROUND AND OBJECTIVE Advance care discussions (ACD) occur infrequently or are initiated late in the course of illness. Although data exist regarding barriers to ACD among the care of adult patients, few pediatric data exist. The goal of this study was to identify barriers to conducting ACD for children with life-threatening conditions. METHODS(More)
BACKGROUND Management of uncontrolled symptoms is an important component of quality cancer care. Clinical guidelines are available for optimal symptom management, but are not often integrated into the front lines of care. The use of clinical decision support (CDS) at the point-of-care is an innovative way to incorporate guideline-based symptom management(More)
IMPORTANCE While data exist regarding the frequency and timing of the do-not-resuscitate (DNR) order in children, little is known about clinician attitudes and behaviors regarding this order. OBJECTIVE To identify clinician attitudes regarding the meaning, implication, and timing of the DNR order for pediatric patients. DESIGN Physicians and nurses from(More)
PURPOSE This study aimed to determine whether feeding back patient-reported outcomes (PROs) to providers and families of children with advanced cancer improves symptom distress and health-related quality of life (HRQoL). PATIENTS AND METHODS This study was a parallel, multicentered pilot randomized controlled trial. At most once per week, children age ≥ 2(More)
IMPORTANCE Parent psychological distress can impact the well-being of childhood cancer patients and other children in the home. Recognizing and alleviating factors of parent distress may improve overall family survivorship experiences following childhood cancer. OBJECTIVES To describe the prevalence and factors of psychological distress (PD) among parents(More)
BACKGROUND There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe suboptimal care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in(More)