Describing Pediatric Oncology Patients Enrolled in Phase 1 Clinical Trials.

Background: Phase 1 trials may expose pediatric oncology patients to potential adverse effects beyond drug-related toxicity, including delays in advance care planning and suboptimal quality of end-of-life (EoL) care. Pediatric palliative care (PPC) can provide symptom management support and assist with EoL planning and care for patients and families enrolling in Phase 1 trials; however, little is known about children with cancer who enroll in Phase 1 studies.

Methods: A retrospective medical record review of pediatric oncology patients enrolled on a Phase 1 clinical trial over a 9-year period was completed at an academic cancer hospital.

Pediatric Hematology-Oncology Provider Attitudes and Beliefs About the Use of Acupuncture for Their Patients.

: Children with cancer suffer due to the underlying disease and prescribed cancer-directed therapies, and non-pharmacologic modalities may offer improved symptom control without additional medications. We sought to elicit knowledge, attitudes, and beliefs of Pediatric Hematology Oncology (PHO) providers surrounding the incorporation of acupuncture for symptom management for their patients. : A cross-sectional survey instrument was created, formatted, and delivered to physicians and advanced practice providers (APPs) at a single US pediatric cancer center.

If You Build It, Will They Come? Pediatric Integrative Medicine Service Utilization in a Comprehensive Cancer Center.

Background: Pediatric patients with hematologic and oncologic diagnoses are at high risk of disease- and/or treatment-related symptoms, and families often seek complementary services alongside disease-directed therapy. Integrative medicine (IM) services can be effective holistic tools for symptom management and support, and are included in multiple NCCN supportive care guidelines. Despite recommendations that IM be included in comprehensive cancer care, availability and access remain variable across cancer centers, and the utilization of IM services-specifically for children-remains largely unknown.

Pediatric Hematology-Oncology Provider Attitudes and Beliefs About the Use of Integrative Modalities for Their Patients: A Cross-Sectional Survey.

Children with cancer suffer from physical and psychological symptoms. Integrative medicine modalities (IMMs) for symptom management are increasingly popular, but whether these are acceptable to pediatric hematology-oncology (PHO) providers remains unknown. To address this knowledge gap and guide integrative medicine (IM) program development, a needs assessment was conducted to understand PHO provider knowledge, attitudes, and beliefs regarding IMMs for symptom management in children with hematologic or oncologic disorders.

Symptom Documentation in Unstructured Palliative Care Notes of Children and Adolescents With Cancer.

Context: Children and adolescents with cancer experiencing complex symptoms can benefit from subspeciality palliative care. However, standardized methods of symptom documentation by pediatric palliative care teams are lacking. Understanding current approaches to symptom documentation will inform next steps to optimize symptom support.

"Understanding why she had to leave me": The roles of religion and spirituality in narratives of parents grieving the loss of a child to cancer.

Religion and spirituality often influence how people experience illness, death, and grief. The roles of religion and spirituality for parents who have lost a child to cancer remain underexplored. This study aimed to describe how cancer-bereaved parents talk about religion and spirituality when reflecting on their experiences.

Factors influencing caregiver decisions to use complementary and integrative therapies in pediatric oncology settings: Findings from a qualitative analysis.

Purpose: Complementary and integrative medicine (CIM) therapies (i.e., non-conventional Western medicine interventions) may reduce side-effects associated with pediatric oncology treatment.

Patient and clinician beliefs about potential barriers to treatment of neuropathic pain for adolescents with sickle cell disease.

Pain is the hallmark symptom causing morbidity for people with sickle cell disease (SCD) and may present as nociceptive, neuropathic, or mixed type pain. Neuropathic pain (NP) is underrecognized and undertreated in patients with SCD and is associated with decreased patient-reported quality of life. Surveys were completed by clinicians caring for adolescents with SCD in the outpatient setting.

Approaches for Discussing Clinical Trials with Pediatric Oncology Patients and Their Families.

Purpose Of Review: This manuscript aims to describe evidence-based best practices to guide clinicians in communicating with pediatric patients and their families about clinical trial enrollment.

Recent Findings: The standard paradigm for discussing clinical trial enrollment with pediatric oncology patients and their families inconsistently enables or facilitates true informed consent. Evidence exists to suggest that adopting a shared decision-making approach may improve patient and family understanding.

Associations of job demands and patient safety event involvement on burnout among a multidisciplinary group of pediatric hematology/oncology clinicians.

Background: Workplace burnout can result in negative consequences for clinicians and patients. We assessed burnout prevalence and sources among pediatric hematology/oncology inpatient nurses, ambulatory nurses, physicians (MDs), and advanced practice providers (APPs) by evaluating effects of job demands and involvement in patient safety events (PSEs).

Methods: A cross-sectional survey (Maslach Burnout Inventory) measured emotional exhaustion, depersonalization, and reduced personal accomplishment.

Leveraging Grief: Involving Bereaved Parents in Pediatric Palliative Oncology Program Planning and Development.

As pediatric palliative care (PPC) became a recognized medical specialty, our developing clinical PPC team longitudinally partnered with bereaved parents to understand the care that their children received as they transitioned towards end of life. Families developed Eight Priorities, shared within, to improve care for children with a poor chance of survival based on their experience of losing a child to cancer. In this paper, we delineate the top eight PPC needs from a parent perspective to offer multi-layered, individually tailored resources for patients and families.

Never Enough Time: Mixed Methods Study Identifies Drivers of Temporal Demand That Contribute to Burnout Among Physicians Who Care for Pediatric Hematology-Oncology Patients.

Purpose: Burnout is a syndrome of emotional exhaustion, depersonalization, and reduced personal accomplishment because of chronic occupational stress. Approximately one third of pediatric hematology-oncology physicians experience burnout. The goal of this mixed methods study was to determine the prevalence and drivers of burnout among physicians caring for pediatric hematology-oncology patients at our institution.

The state of the science for communication training in pediatric oncology: A systematic review.

Within the field of pediatric oncology, communication skills training (CST) has been recognized as a high priority by professional and accrediting organizations. However, the effectiveness of formalized CST interventions for pediatric oncology providers remains poorly understood. We systematically searched PubMed, Web of Science, Scopus, and PsycInfo for original research articles assessing the effectiveness and quality of CST interventions targeting pediatric oncology clinicians.

Are we meeting the informational needs of cancer patients and families? Perception of physician communication in pediatric oncology.

Background: High-quality oncology care is marked by skillful communication, yet little is known about patient and family communication perceptions or content preferences. Our study sought to elicit pediatric oncology patient and parent perceptions of early cancer communication to establish whether informational needs were met and identify opportunities for enhanced communication throughout cancer care.

Method: An original survey instrument was developed, pretested, and administered to 129 patients, age 10-18 years, and their parents at 3 cancer centers between 2011 and 2015.

The Impact of Pediatric Palliative Care Involvement in the Care of Critically Ill Patients without Complex Chronic Conditions.

The impact of pediatric palliative care (PPC) is well established for children with chronic complex diseases. However, PPC likely also benefits previously healthy children with acute life-threatening conditions. To determine the incidence and impact of PPC for previously healthy patients who died in a pediatric hospital.

Factors influencing survival after recurrence in osteosarcoma: A report from the Children's Oncology Group.

Background: Despite drastic improvement in overall survival for pediatric patients with cancer, those with osteosarcoma have stable rates of survival since the 1980s. This project evaluates the effect of several variables on survival after first recurrence in patients with osteosarcoma.

Methods: Data from three prospective North American cooperative group trials for newly diagnosed osteosarcoma are included: INT-0133, POG-9754, and AOST0121.

Advancing the field of communication research in pediatric oncology: A systematic review of the literature analyzing medical dialogue.

Historically, communication research in pediatric oncology has relied on surveys and interviews, resulting in cross-sectional and retrospective studies constrained by selection, recognition, and recall biases. This systematic review identifies and synthesizes the published literature analyzing primary data from recorded conversations between pediatric oncologists, patients with cancer, and their families, with the following objectives: (1) to identify the extent and content of the evidence base, (2) to describe methodological strategies utilized in the analysis of recorded medical dialogue, (3) to aggregate salient findings, and (4) to generate recommendations for future prospective research related to analysis of medical dialogue in pediatric oncology.

Statewide Treatment Center Referral Patterns for Adolescent and Young Adult Patients with Cancer in Utah.

Cancer therapy is selected by individual oncology providers. For adolescent and young adults (AYAs), the type of provider, adult or pediatric, and medical facility type, non- or academic, influence regimens offered. We evaluated the proportions of 15-29-year-old cancer patients in Utah seen at pediatric and adult academic centers between 1994 and 2013 and examined factors that influence treatment location.

Incorporating Bereaved Parents as Faculty Facilitators and Educators in Teaching Principles of Palliative and End-of-Life Care.

Background:: Education and training for interdisciplinary pediatric providers requires training in principles of palliative and end-of-life (EOL) care. The experiences of bereaved parents can inform and enhance palliative care educational curricula in uniquely powerful and valuable ways. The objective of this study is to present an innovative palliative care educational program facilitated by trained bereaved parents who serve as volunteer educators in local and national palliative care educational forums and to describe how incorporation of bereaved parents in these educational forums affects participant comfort with communication and management of children at the EOL.

Patient Navigation Preferences for Adolescent and Young Adult Cancer Services by Distance to Treatment Location.

Purpose: To describe how distance to treatment location influences patient navigation preferences for adolescent and young adult (AYA) cancer patients and survivors.

Methods: This study is part of a statewide needs assessment to inform the development of an AYA cancer patient and survivor navigation program. Participants were recruited from outpatient oncology clinics in Utah.

Adolescent and Young Adult Oncology, Version 2.2018, NCCN Clinical Practice Guidelines in Oncology.

This selection from the NCCN Guidelines for Adolescent and Young Adult (AYA) Oncology focuses on treatment and management considerations for AYA patients with cancer. Compared with older adults with cancer, AYA patients have unique needs regarding treatment, fertility counseling, psychosocial and behavioral issues, and supportive care services. The complete version of the NCCN Guidelines for AYA Oncology addresses additional aspects of caring for AYA patients, including risk factors, screening, diagnosis, and survivorship.