Leading a Palliative Care Team Through Times of Growth And Change.

High-functioning palliative care teams are essential to high-quality care for individuals with serious illness and their families. Such teams are flexible and adapt to change. However, recent high turnover and understaffing, compounded by a pandemic, challenge even the most resilient and adaptable teams.

Household material hardship and distress among parents of children with advanced cancer: A report from the PediQUEST Response trial.

Background: The prevalence and characteristics of household material hardship (HMH) in families of children with advanced cancer and its association with parent distress are unknown and herein described.

Methods: Parents of children aged ≥2 years with advanced cancer at five cancer centers completed baseline surveys as part of the PediQUEST Response trial. HMH (housing, energy, and food) was operationalized as binary (≥1 HMH domains), ordinal (zero, one, or two or more HMH domains), and housing based (none, nonhousing [food and/or energy], only housing, or housing + other).

Revisiting medical neglect concerns in children with life-threatening complex chronic conditions.

Background/objectives: Life-Threatening Complex Chronic Conditions (LT-CCCs) increase the complexity of medical neglect concerns. Clinicians' perspectives are central in concerns for medical neglect, yet little is currently known regarding clinicians' understanding of and approach to these situations. We explored how clinicians who care for children with LT-CCCs understand medical neglect.

An Automatic Pediatric Palliative Care Consultation for Children Supported on Extracorporeal Membrane Oxygenation: A Survey of Perceived Benefits and Barriers.

Pediatric palliative care (PPC) consultation is infrequent among children on extracorporeal membrane oxygenation (ECMO). Investigate intensive care unit (ICU) team members' perceptions of automatic PPC consultation for children on ECMO in an ICU in the United States. Cross-sectional survey assessing benefits, barriers to PPC, and consultation processes.

Health Care Providers' Perspectives on COVID-19 and Medical Neglect in Children with Life-Threatening Complex Chronic Conditions.

Purpose: Little is known regarding medical neglect in children with Life-Threatening Complex Chronic Conditions (LT-CCCs). We examined the impact of COVID-19 on concern for medical neglect in this population.

Methods: Qualitative interview study of multi-disciplinary health care providers (HCPs) from critical care, palliative care, and complex care services on the topic of medical neglect in children with LT-CCCs.

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 palliative care (SPPC) is associated with improved outcomes for children with cancer and their families is unknown.

Objective: We conducted a systematic review following PRISMA guidelines to investigate outcomes associated with SPPC in pediatric oncology with a focus on intervention delivery, collaboration, and alignment with National Quality Forum domains.

The Palliative Use of Intrathecal Baclofen in Niemann-Pick Disease Type C.

Niemann-Pick disease type C is a rare progressive genetic disorder that leads to the abnormal accumulation of lipids within various tissues of the body, including brain tissue and liver. There is a rapid progression of the disease, resulting in severe disability in only a few years after the first symptoms, and survival is not much longer. Spasticity, dystonia, and chronic pain are common findings that severely impact quality of life in these patients.

Self-reported fatigue in children with advanced cancer: Results of the PediQUEST study.

Background: Pediatric cancer-related fatigue is prevalent and significantly impairs health-related quality of life, yet its patterns and correlates are poorly understood. The objectives of this study were to describe fatigue as prospectively reported by children with advanced cancer and to identify the factors associated with fatigue and associated distress.

Methods: Children (age ≥2 years) with advanced cancer (N = 104) or their parents at 3 academic hospitals reported symptoms at most weekly over 9 months using the computer-based Pediatric Quality of Life Evaluation of Symptoms Technology (PediQUEST) system.

Three sides to a story: Child, parent, and nurse perspectives on the child's experience during hematopoietic stem cell transplantation.

Background: The experience of children undergoing hematopoietic stem cell transplantation (HSCT), including the ways in which different participants (ie, children, parents, and nurses) contribute to the overall picture of a child's experience, is poorly characterized. This study evaluated parent, child, and nurse perspectives on the experience of children during HSCT and factors contributing to interrater differences.

Methods: Participants were enrolled in a multicenter, prospective study evaluating child and parent health-related quality of life over the year after HSCT.

End-of-Life Care Patterns Associated with Pediatric Palliative Care among Children Who Underwent Hematopoietic Stem Cell Transplant.

Stem cell transplantation (SCT) is an intensive therapy offering the possibility of cure for life-threatening conditions but with risk of serious complications and death. Outcomes associated with pediatric palliative care (PPC) for children who undergo SCT are unknown. Therefore, we evaluated whether PPC consultation is associated with differences in end-of-life (EOL) care patterns for children who underwent SCT and did not survive.

Parent Outlook: How Parents View the Road Ahead as They Embark on Hematopoietic Stem Cell Transplantation for Their Child.

Pediatric hematopoietic stem cell transplantation (HSCT) offers cure for high-risk malignancies and other conditions, but carries a risk of complications. Parental outlook regarding their child's transplantation course and future health has been largely unexplored. This report presents the Parent Outlook Scale, describes its properties, and examines the outlook of parents embarking on their child's transplantation course and the associated variables.

Pediatric hospital care for children with life-threatening illness and the role of palliative care.

Under increasing pressure to contain costs, hospitals are challenged to provide high-quality care to an increasingly complex group of children with life-threatening illness (LTI) that often worsen over time. Pediatric palliative care is an essential component of optimal hospital care delivery for these children and their families. This article describes (1) the current landscape of pediatric hospital care for children with LTI, (2) the connection between palliative care and hospital care for such children, and (3) the relationship between health care reform and palliative care for children with LTI.

Fatigue in children with cancer at the end of life.

Context: Fatigue is a prevalent source of suffering in children with advanced cancer; yet, little is known about it.

Objectives: This study aimed to describe fatigue experienced by children with advanced cancer and to identify the factors associated with suffering from fatigue and its treatment.

Methods: A retrospective cross-sectional study of 141 parents of children who died of cancer (response rate: 64%) was conducted in two tertiary-level U.

End-of-life experience of children undergoing stem cell transplantation for malignancy: parent and provider perspectives and patterns of care.

The end-of-life (EOL) experience of children who undergo stem cell transplantation (SCT) may differ from that of other children with cancer. To evaluate perspectives and patterns of EOL care after SCT, we surveyed 141 parents of children who died of cancer (response rate, 64%) and their physicians. Chart review provided additional information.

Assessment and management of fatigue and dyspnea in pediatric palliative care.

Fatigue is one of the most prevalent symptoms in patients with a life-threatening illness. Untreated, fatigue can impair quality of life and prohibit addressing practical needs, psychosocial and spiritual distress, and opportunities for growth and closure at life's end. To this end addressing fatigue is a crucial component of the provision of effective palliative care.