PURPOSE: Physicians sometimes selectively convey prognostic information to support patients' hopes. However, the relationship between prognostic disclosure and hope is not known. PATIENTS AND METHODS: We surveyed 194 parents of children with cancer…
BACKGROUND AND OBJECTIVES: Although many adults experience resource-intensive and costly health care in the last year of life, less is known about these health care experiences in children with life-threatening complex chronic conditions (LT-CCCs).…
Pediatric palliative care (PPC) is a relatively new but rapidly expanding specialty area with a variety of models of care provision. Identification and validation of quality indicators specific to PPC is essential to accurately monitor and assess the…
PURPOSEEvidence suggests that adolescents and young adults (AYAs) with cancer (defined as age 15-39 years) receive high-intensity (HI) medical care at the end-of-life (EOL). Previous population-level studies are limited and lack information on the…
Outcomes: 1. Explain the impact of specialized palliative care on reducing high-intensity end-of-life care in adolescents and young adults with cancer 2. Identify subpopulations among adolescents and young adults with cancer who are at highest risk…
Background: Nearly 2000 children die due to a malignancy in the United States annually. Emerging data suggest that home is the desired location of care for children with cancer at end of life. However, one obstacle to enrollment in a pediatric…
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…
We conducted a retrospective cohort study of 125 pediatric oncology patients who died in 2010-2014 to explore how healthcare utilization, pediatric palliative care (PPC) receipt, and end-of-life care (EOLC) differed between patients enrolled in early…
CONTEXT: Since the publication of the IMPaCCT project in 2007, much effort has been made to develop new approaches to pediatric palliative care (PPC). Fifteen years later, it is time to redefine the standards in PPC. OBJECTIVES: An international…
The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships,…
The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships,…
CONTEXT.: The death of a child from cancer affects the entire family. Little is known about the long-term psychosocial outcomes of bereaved siblings. OBJECTIVES: To describe 1) the prevalence of risky health behaviors, psychological distress, and…
Medical marijuana (MM) has become increasingly legal at the state level and accessible to children with serious illness. Pediatric patients with cancer may be particularly receptive to MM, given purported benefits in managing cancer-related symptoms.…
BACKGROUND AND OBJECTIVES: Decisional regret is common in bereaved parents. We aimed to identify factors associated with and to explain patterns of parental decisional regret. METHODS: We used a convergent mixed-methods design including quantitative…
Abstract Background: Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology. Objectives: We examined the impact of an enhanced implementation of the Education in Palliative and…
Abstract Background: Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology. Objectives: We examined the impact of an enhanced implementation of the Education in Palliative and…
From the time when children enter the preteen years onward, pediatric medical decision-making can entail a complex interaction between child, parents, and pediatrician. When the child and parents disagree regarding medical decisions, the pediatrician…
Background: In 2013, 23,446 infants died in the U.S.. For infants hospitalized in the neonatal intensive care unit (NICU), advances in medicine have prolonged the lives of many infants who would not have previously survived, resulting in complex…
Context: Children, adolescents and young adults with cancer continue to experience significant symptom suffering throughout their illness. Objective(s): To identify barriers to effective symptom management in pediatric advanced cancer. Method(s):…
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:…
Adolescents and young adults (AYAs) with cancer represent a unique and challenging group of patients with distinct developmental and psychosocial needs that may be unrecognized or unmet during their cancer experience. Palliative care refers to the…
Purpose/Objective(s): Palliative radiation therapy (pRT) for pediatric cancer patients is often used to treat pain, neurologic symptoms, and other conditions from progressive cancer that affects quality of life. However, though the doses used are…
Death from cancer is often painful. Usually, the pain can be relieved in ways that allow patients to remain awake and alert until the end. Sometimes, however, the only way to relieve pain is to sedate patients until they are unconscious. This method…
Context : Few studies have explored the impact of the Coronavirus Pandemic (COVID-19) on the care of seriously ill children which may be especially affected due to the child's vulnerability, complexity of care, and high reliance on hospital-based…
Context : Few studies have explored the impact of the Coronavirus Pandemic (COVID-19) on the care of seriously ill children which may be especially affected due to the child's vulnerability, complexity of care, and high reliance on hospital-based…
BACKGROUND: Current options for location of end-of-life (EOL) care for children with cancer include home, hospital, and freestanding pediatric hospice (FSPH). However, access to these options varies greatly depending on geographical location. We…
PURPOSE: To ascertain parents' and physicians' assessments of quality of end-of-life care for children with cancer and to determine factors associated with high-quality care as perceived by parents and physicians. METHODS: A survey was conducted…
CONTEXT: Childhood cancer care is delivered by interprofessional healthcare teams however little is known about how parents perceive overall team-delivered care (TDC). OBJECTIVES: We sought to describe parent perceptions of TDC and associated…
Importance: Robust quality measures to benchmark end-of-life care for children with cancer do not currently exist; 28 candidate patient-centered quality measures were previously developed. Objective(s): To prioritize quality measures among parents…
CONTEXT: The death of a child from cancer is a devastating event, placing bereaved parents at risk for both physical and psychosocial morbidities. Despite growing awareness of these outcomes and increased hospital-based support, bereaved parents…
CONTEXT: The death of a child from cancer is a devastating event, placing bereaved parents at risk for both physical and psychosocial morbidities. Despite growing awareness of these outcomes and increased hospital-based support, bereaved parents…
OBJECTIVE: To describe parent perspectives regarding the end-of-life experience of children with advanced heart disease. DESIGN: Cross-sectional multicenter survey study of bereaved parents. SETTING: Two tertiary care pediatric hospitals. SUBJECTS:…
