2021 Special Edition 2 - Oncology
Title
2021 Special Edition 2 - Oncology
Collection Items
A Pilot Study of the Effects of COMPLETE: A Communication Plan Early Through End of Life, on End-of-Life Outcomes in Children With Cancer
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…
Homestead Together: Pediatric Palliative Care Telehealth Support for Rural Children with Cancer during Home-Based End-Of-Life Care
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…
End-of-Life Childhood Cancer Research: A Systematic Review
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…
Triggers for Palliative Care Referral in Pediatric Oncology
Palliative care (PC) integration into the care of pediatric oncology patients is growing in acceptance and has been shown to improve the quality of life of children with cancer. Yet timing for referrals and referral practices remain inconsistent, and…
Impact of Palliative Care Involvement on End-of-Life Care Patterns Among Adolescents and Young Adults With Cancer: A Population-Based Cohort Study
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…
Race, Ethnicity, and Goal-Concordance of End-Of-Life Palliative Care in Pediatric Oncology
BackgroundRacial and ethnic minority children with cancer disproportionately receive intensive care at the end of life (EOL). It is not known whether these differences are goal-concordant or disparities. The authors sought to explore patterns of…
The Most Important Aspects for a Good Death: Perspectives from Parents of Children with Cancer
A good death is an important concept in pediatric palliative care. To improve the quality of pediatric palliative care, it is imperative to identify which domain is most important for a good death among children with cancer and their parents. This…
Polypharmacy among Pediatric Cancer Patients Dying In the Hospital
BACKGROUND: Decisions on medication treatment in children dying from cancer are often complex and may result in polypharmacy and increased medication burden. There is no information on medication burden in pediatric cancer patients at the end of life…
Sociodemographic and Hospital-Based Predictors of Intense End-Of-Life Care among Children, Adolescents, and Young Adults with Hematologic Malignancies
Background: Children, adolescents, and young adults with hematologic malignancies tend to receive high-intensity end-of-life care (HI-EOLC), but sociodemographic and hospital-based predictors of HI-EOLC remain unclear. Method(s): The authors…
Defining and Timing of Palliative Opportunities in Children with Central Nervous System Tumors
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)…
The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review
CONTEXT: Children with cancer and their families have complex needs related to symptoms, decision-making, care planning, and psychosocial impact extending across the illness trajectory, which for some includes end of life. Whether specialty pediatric…
Broaching Goals-Of-Care Conversations in Advancing Pediatric Cancer
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…
Facilitators Associated With Building and Sustaining Therapeutic Alliance in Advanced Pediatric Cancer
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…
Differences in Characteristics of Children with Cancer Who Receive Standard versus Concurrent Hospice Care
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…
Refining Patient-Centered Measures of End-of-Life Care Quality for Children With Cancer
PURPOSE: There are no existing quality measures (QMs) to optimize end-of-life care for children with cancer. Previously, we developed a set of 26 candidate QMs. Our primary objective in this study was to achieve stakeholder consensus on priority…
Advance Care Planning For Adolescents with Cancer and Their Parents: Study Protocol of the Boost Pacp Multi-Centre Randomised Controlled Trial and Process Evaluation
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…
Palliative Care Training for Pediatric Hematology/Oncology Fellows: a Canadian Perspective
Children with cancer experience suffering, particularly at the end of life. Pediatric hematology/oncology (PHO) fellows need dedicated palliative care (PC) training in order to adequately manage this suffering. Our objectives were to understand (1)…
A Stakeholder-Driven Qualitative Study to Define High Quality End-of-Life Care for Children With Cancer
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…
Supporting the Needs of Adolescents and Young Adults: Integrated Palliative Care and Psychiatry Clinic for Adolescents and Young Adults with Cancer
Clinical guidelines aimed at cancer care for adolescents and young adults (AYAs) encour-age early integration of palliative care, yet there are scarce data to support these recommendations. We conducted a retrospective chart review of AYA patients,…
Behind the Scenes: Care Coordination Time in an Outpatient Pediatric Palliative Oncology Clinic
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…
Adolescents and Young Adults Living With an Uncertain or Poor Cancer Prognosis: The "New" Lost Tribe
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…
Caregiver Reported Quality of End-of-Life Care of Adolescent and Young Adult Decedents With Cancer
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…
Early Palliative Care Is Associated With Less Intense Care in Children Dying With Cancer in Alabama: A Retrospective, Single-Site Study
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…
Relationship Between Household Material Hardship and Distress in Parents of Children with Advanced Cancer: A Report from the PediQUEST Response Trial (T315A)
Objectives: 1. Explain the association between household material hardship and distress in parents of children with advanced cancer. 2. Propose how housing insecurity can be modified for families of children with advanced cancer through providing…
Feasibility, Acceptability, and Education of Pediatric Oncology Providers Before and After an Embedded Pediatric Palliative Oncology Clinic
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…
A Quality Improvement Project to Increase Palliative Care Team Involvement in Pediatric Oncology Patients
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…
Longitudinal Understanding of Prognosis among Adolescents with Cancer
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…
Decision-Making in the Era of New Medical Technologies in Pediatric Hematology-Oncology: The Death of Palliative Care?
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…
Parental Perceptions of Hospital-Based Bereavement Support Following a Child's Death from Cancer: Room for Improvement
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…
Definitely Mixed Feelings: The Effect of COVID-19 on Bereavement in Parents of Children Who Died of Cancer
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…
Impact of a Multi-Professional Expert Team on Eol Care of Children with Cancer
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…
Quality Measures for End-Of-Life Care for Children with Cancer: A Modified Delphi Approach
BACKGROUND: The quality of adult end-of-life (EOL) cancer care has benefited from quality measures, but corresponding pediatric measures are lacking. Therefore, the authors used a validated expert panel method to recommend EOL quality measures for…
Communication around Palliative Care Principles and Advance Care Planning Between Oncologists, Children with Advancing Cancer and Families
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…
End of Life Communication among Caregivers of Children with Cancer: A Qualitative Approach to Understanding Support Desired By Families
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…
Evaluating Palliative Opportunities Across the Age Spectrum in Children and Adolescent Patients with Cancer
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…
Evaluating Palliative Opportunities in Pediatric Patients with Leukemia and Lymphoma
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…
Oncologist Conceptualizations of Pediatric Palliative Care: Challenges and Definitions
PURPOSE: Pediatric palliative care (PC) is an evolving field and involves a comprehensive approach to care of children with cancer. The goal of this paper was to explore how pediatric oncologists define, interpret, and practice pediatric palliative…
Shared Spiritual Beliefs between Adolescents with Cancer and Their Families
BACKGROUND: FAmily CEntered (FACE) Advance Care Planning helps family decision makers to understand and honor patients' preferences for future health care, if patients cannot communicate. Spiritual well-being is a key domain of pediatric oncology…
Barriers to Optimal End-of-Life Care for Adolescents and Young Adults With Cancer: Bereaved Caregiver Perspectives
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…
Patient, Family, and Clinician Perspectives on End-of-Life Care Quality Domains and Candidate Indicators for Adolescents and Young Adults with Cancer
Importance: End-of-life care quality indicators specific to adolescents and young adults (AYAs) aged 12 to 39 years with cancer have not been developed. Objective(s): To identify priority domains for end-of-life care from the perspectives of AYAs,…