Purpose: Concurrent hospice care provides important end-of-life care for youth under 21 years. Those nearing 21 years must decide whether to shift to adult hospice or leave hospice for life-prolonging care. This decision may be challenging for young…
BACKGROUND: Few evidence-based psychosocial programs have been tested among adolescents and young adults (AYAs) with advanced cancer (AC), and early advance care planning (ACP) in this population is rare. The authors aimed to determine the…
Context: Most children with cancer die in hospital settings, without hospice, and many suffer from high-intensity medical interventions and pain at end of life (EOL). Objective(s): To examine the effects of COMPLETE: a communication plan early…
BACKGROUND: Pediatric palliative care (PPC) for oncology patients improves quality of life and the likelihood of goal-concordant care. However, barriers to involvement exist. OBJECTIVES: We aimed to increase days between PPC consult and death for…
OBJECTIVE: Meaning-making may assist individuals in adaptation to stressful life events, particularly bereavement. However, few studies have examined meaning-making among pediatric populations with advanced illness to understand how this process…
Context Among adults with cancer, measures for high quality end-of-life care (EOLC) include avoidance of hospitalizations near end of life. For children with cancer, no measures exist to evaluate or improve EOLC, and adult quality measures may not…
Historically, adolescent and young adult (AYA) patients with cancer, diagnosed for the first time at age 15 through 39 years, have often been identified as a "lost tribe" without a medical "home"; neither pediatric nor adult oncology services were…
The extent of Advance Care Planning (ACP) among Adolescent and Young Adult (AYA) cancer patients is not well characterized. This retrospective case note audit scrutinized the records of all AYA patients (aged 16-25 years) known to a regional…
BACKGROUND: Research has highlighted the need for evidence-based interventions to improve paediatric advance care planning (pACP) in adolescents with cancer. Although adolescents express the desire and ability to share their values, beliefs and…
CONTEXT: Many children with advanced cancer are not referred to palliative care despite both professional recommendations to do so and bereaved parental preference for earlier support from sub-specialty palliative care. OBJECTIVES: To assess the…
Objective: We sought to describe palliative care services available to children with cancer along with pediatric oncologists' current and ideal practices of palliative care involvement in children with cancer. Design(s): A novel survey tool was…
AIM: To assess patients' barriers to pain management and analgesic medication adherence in advanced cancer patients METHODS: Prospective cross-sectional study in advanced cancer patients receiving chronic opioid therapy. Age, gender, cancer…
BACKGROUND: Adolescents and young adults (AYAs; aged 15-39 years) with cancer frequently receive intensive measures at the end of life (EoL), but the perspectives of AYAs and their family members on barriers to optimal EoL care are not well…
Background: Integrated pediatric palliative oncology (PPO) outpatient models are emerging to assist oncologists, children, and families throughout their course with cancer. Significant time is devoted to care coordination ("nonbillable"time), but the…
Broaching conversations about goals of care can be difficult for clinicians. Presently, the communication strategies used by pediatric oncologists to approach goals of care conversations are not well understood. We recorded disease re-evaluation…
BACKGROUND: The quality of palliative and end-of-life (EOL) care for adolescents and young adults (AYAs) with cancer remains largely unknown. OBJECTIVE(S): To describe caregivers of AYA cancer decedents perspectives' on EOL care quality related to…
Despite improvements in survival, cancer remains the leading cause of non-accidental death in children and adolescents, who risk receiving high-intensity end-of-life (HI-EOL) care. OBJECTIVE: To analyse treatments for relapses (particularly in the…
BACKGROUND: In medical oncology, palliative care principles and advance care planning are often discussed later in illness, limiting time for conversations to guide goal-concordant care. In pediatric oncology, the frequency, timing and content of…
BACKGROUND: Adult patients with hematologic malignancies are less likely to receive palliative care and more likely to accept intensive anti-cancer treatments until end-of-life than those with solid tumors, but limited data are available regarding…
Aim: To describe the experience involving the early introduction of palliative care (PC) in oncological patients treated within the paediatric oncology unit of the Istituto Nazionale Tumori of Milan and compare this cohort with a cohort of patients…
BACKGROUND: Recent advances in immunology, genomics, and cellular therapy have opened numerous therapeutic possibilities in pediatric hematology-oncology, generating new hope in poor prognosis situations. How decisions are made when it comes to…
BACKGROUND: Children with brain and central nervous system (CNS) tumors experience substantial challenges to their quality of life during their disease course. These challenges are opportunities for increased subspecialty palliative care (PC)…
Context: Coronavirus disease 2019 (COVID-19) has impacted most elements of daily life, including the provision of support after a child's death and the experience of parental bereavement.Objectives: This study aims to examine ways in which COVID-19…
BACKGROUND: The provision of Section 2302 of the 2010 Patient Protection and Affordable Care Act (ACA) allowed pediatric patients who are enrolled in Medicaid to receive hospice care concurrently with curative treatment (i.e., concurrent hospice…
Few studies have investigated palliative and end-of-life care processes among young adults (YAs), aged 18-34 years, who died of cancer. This retrospective study used a natural language processing algorithm to identify documentation and timing of four…
BACKGROUND: Regional studies show that children with cancer receive medically intense end-of-life (EOL) care, but EOL care patterns, including palliative care utilization in Alabama, remain unknown. METHODS: This was a retrospective study of 233…
OBJECTIVES: Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support…
BACKGROUND: In developed countries, cancer remains the leading cause of pediatric death from illness after the neonatal period. OBJECTIVE: To describe the end-of-life care characteristics of children and adolescents with solid tumors (ST) or…
CONTEXT: Children with incurable cancer may participate in research studies at the end of life (EOL). These studies create knowledge that can improve the care of future patients. OBJECTIVE: To describe stakeholder perspectives regarding research…
Purpose: Adolescent patients with cancer experience unique stressors due to their developmental stage, with increased physical, emotional, and social distress. Palliative care (PC) serves an important role in pediatric cancer care. We examined…
BACKGROUND: Despite favorable prognoses, pediatric patients with hematologic malignancies experience significant challenges that may lead to diminished quality of life or family stress. They are less likely to receive subspecialty palliative care…
INTRODUCTION: Despite palliative care being offered to paediatric cancer patients, it has limited utilisation and often excludes parental support. Therefore, this review aims to consolidate evidence regarding experiences and needs of parents of…
Participant recruitment for pediatric palliative intervention studies is a chronic challenge for researchers. Digital recruitment strategies, or digital technology-assisted recruitment methods used to remotely reach and enroll research subjects, can…
Importance: Therapeutic alliance is a core component of patient- and family-centered care, particularly in the setting of advancing cancer. Communication approaches used by pediatric oncologists to foster therapeutic alliance with children with…
PURPOSE: Most pediatric palliative care (PPC) education is trainee-directed, didactic, or simulation-based and therefore limited in scope, realism, and audience. We explored whether an embedded pediatric palliative oncology (PPO) clinic is associated…
BACKGROUND: Children with terminal cancer and their families describe a preference for home-based end-of-life care. Inadequate support outside of the hospital is a limiting factor in home location feasibility, particularly in rural regions lacking…
BACKGROUND: The quality of end-of-life (Q-EOL) care is influenced by various factors such as resources for palliative care (PC). We introduced a multi-professional expert team (MET) in 2014, which provides home-based care for children and adolescents…
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…
BACKGROUND: Adolescents and young adults (AYAs) with cancer may experience elevated rates of high-intensity end-of-life (HI-EOL) care. Locus-of-care (LOC) disparities (pediatric vs adult) in AYA end-of-life (EOL) care are unstudied. METHODS: A…
OBJECTIVE: Despite calls to increase prognosis communication for adolescents with cancer, limited research has examined their perceptions of prognosis as compared with their parents. We assessed adolescents' understanding of their prognosis relative…
