Creating Interdisciplinary Engagement Through a Hospital-Based Endowed Chair in Nursing Research: The "Conway Chair Conversations".

Although clinical nurses' involvement in research is a role expectation, efforts to engage clinical nurses in nurse-led research have had notably mixed results. These efforts have most typically been single discipline-focused (nursing), although nursing care is a collaborative, interdisciplinary practice. Adding an interdisciplinary strategy to multiple other efforts to engage clinical nurses in research may contribute to more nurse involvement. Here, we describe the use of a hospital-based endowed chair in nursing research to simultaneously engage nursing and other disciplines in a monthly dialogue about clinically relevant, research-related challenges and solutions. Outcomes indicate that the research-related dialogue among nurses and interprofessional colleagues would likely not have taken place without this approach.

High Incidence of Veno-Occlusive Disease With Myeloablative Chemotherapy Following Craniospinal Irradiation in Children With Newly Diagnosed High-Risk CNS Embryonal Tumors: A Report From the Children's Oncology Group (CCG-99702).

BACKGROUND: The outcomes with high-risk central nervous system (CNS) embryonal tumors remain relatively poor despite aggressive treatment. The purposes of this study using postirradiation myeloablative chemotherapy with autologous hematopoietic stem cell rescue (ASCR) were to document feasibility and describe toxicities of the regimen, establish the appropriate dose of thiotepa, and estimate the overall survival (OS) and event-free survival (EFS). PROCEDURE: The Children's Cancer Group conducted this pilot study in children and adolescents with CNS embryonal tumors. The treatment consisted of induction chemotherapy to mobilize hematopoietic stem cells, chemoradiotherapy, and myeloablative consolidation chemotherapy with ASCR. RESULTS: The study accrued 25 subjects in 40 months and was closed early due to toxicity, namely, veno-occlusive disease (VOD) of the liver, more recently termed sinusoidal obstructive syndrome (SOS). Of 24 eligible subjects, three of 11 (27%) receiving thiotepa Dose Level 1 (150 mg/m(2) /day × 3 days) and three of 12 (25%) receiving de-escalated Dose Level 0 (100 mg/m(2) /day × 3 days) experienced VOD/SOS. One additional subject experienced toxic death attributed to septic shock; postmortem examination revealed clinically undiagnosed VOD/SOS. The 2-year EFS and OS were 54 ± 10% and 71 ± 9%, respectively. The 5-year EFS and OS were 46 ± 11% and 50 ± 11%. CONCLUSIONS: The treatment regimen was deemed to have an unacceptable rate of VOD/SOS. There was complete recovery in all six cases. The overall therapeutic strategy using a regimen less likely to cause VOD/SOS may merit further evaluation for the highest risk patients.

Impact of Pediatric Primary Palliative Care Education and Mentoring in Practice.

Primary palliative care education and mentoring strengthens frontline clinicians' confidence and competence in pediatric palliative care, and potentially mitigates their moral distress. The project aims were to improve the knowledge, attitudes, and skills of frontline intradisciplinary clinicians in caring for children with serious conditions and their families. We undertook an intensive educational initiative consisting of didactic and mentoring sessions, and mentored quality improvement projects. Outcomes included the following: 93.3% of participants reported comfort in discussing death, suffering, spirituality, and hope with families, and increased comfort in end-of-life care (89.5%), increased knowledge (94.7%) and skills (100%), improved communication (100%), and being better prepared to discuss and access palliative care resources (100%). Secondary outcomes included 33% increase in specialty pediatric palliative care consults and 98% increase in the integration of specialty palliative care for patients with high-risk cancers. Specialty pediatric palliative care referral became standard for patients with cystic fibrosis, high-risk solid and brain tumors, heart failure, and patients receiving a stem cell transplant. Clinician self-reported moral distress decreased by 30%. This project improved primary palliative care knowledge, attitudes, and confidence in skills, access to care, and family satisfaction, and decreased clinician self-reported moral distress. We report on the 4-year period of project implementation and sustainability.

Integrating the Comfort Theory™ Into Pediatric Primary Palliative Care to Improve Access to Care.

Primary palliative care improves access to symptom control and quality-of-life care for children and families and can reduce moral distress in clinicians. This article describes the application of a nursing theory framework for an evidence-based practice/quality improvement project that embedded pediatric primary palliative care into a hospital-based setting using unit-specific projects. An evidence-based practice/quality improvement project, guided by the Comfort Theory™, provided primary palliative care education and mentorship to improve knowledge, skills, and attitudes of direct care clinicians. Training consisted of didactic and self-directed learning, mentoring, and completion of unit-based projects to establish meaning and impact best practices and policies. A total of 149 direct care clinicians, comprising 3 cohorts, enrolled in the program. Improvements in interdisciplinary collaboration in care were demonstrated through 21 unit-based projects, the development of triggers for specialty palliative care consults in several high-risk populations, and the development of institutional guidelines for end-of-life care. The Comfort Theory™ guided integration of palliative care for children with serious illness and their families. This project empowered direct care clinicians in caring for patients, providing support to clinical staff, and in developing best practices.

A New Era in Pediatric Hospice Care for Military Families.

: This series on palliative care is developed in collaboration with the Hospice and Palliative Nurses Association (HPNA; https://advancingexpertcare.org). The HPNA aims to guide nurses in preventing and relieving suffering and in giving the best possible care to patients and families, regardless of the stage of disease or the need for other therapies. The HPNA offers education, certification, advocacy, leadership, and research.

Integration of Pediatric Palliative Care Into Cardiac Intensive Care: A Champion-Based Model.

Integration of pediatric palliative care (PPC) into management of children with serious illness and their families is endorsed as the standard of care. Despite this, timely referral to and integration of PPC into the traditionally cure-oriented cardiac ICU (CICU) remains variable. Despite dramatic declines in mortality in pediatric cardiac disease, key challenges confront the CICU community. Given increasing comorbidities, technological dependence, lengthy recurrent hospitalizations, and interventions risking significant morbidity, many patients in the CICU would benefit from PPC involvement across the illness trajectory. Current PPC delivery models have inherent disadvantages, insufficiently address the unique aspects of the CICU setting, place significant burden on subspecialty PPC teams, and fail to use CICU clinician skill sets. We therefore propose a novel conceptual framework for PPC-CICU integration based on literature review and expert interdisciplinary, multi-institutional consensus-building. This model uses interdisciplinary CICU-based champions who receive additional PPC training through courses and subspecialty rotations. PPC champions strengthen CICU PPC provision by (1) leading PPC-specific educational training of CICU staff; (2) liaising between CICU and PPC, improving use of support staff and encouraging earlier subspecialty PPC involvement in complex patients' management; and (3) developing and implementing quality improvement initiatives and CICU-specific PPC protocols. Our PPC-CICU integration model is designed for adaptability within institutional, cultural, financial, and logistic constraints, with potential applications in other pediatric settings, including ICUs. Although the PPC champion framework offers several unique advantages, barriers to implementation are anticipated and additional research is needed to investigate the model's feasibility, acceptability, and efficacy.

Palliative Nursing Summit: Nurses Leading Change and Transforming Care: The Nurse's Role in Coordination of Care and Transition Management.

The Hospice and Palliative Nurses Association Palliative Nursing Summit (Summit) "Nurses Leading Change and Transforming Care" brought nurses from numerous specialties together to discuss collaboration in advancing primary palliative nursing. Nursing leadership was highlighted, and the future of integrating primary palliative care was emphasized. Three workshop groups held discussions on key collaborative topics of communication/advance care planning, pain and symptom management, and coordination of care/transition management (CCTM). Nursing has historically led the way in CCTM, especially in acute- and long-term-care settings. The philosophy and principles of CCTM are in direct alignment with the values and guidelines for quality palliative care. Goals of CCTM include the achievement of optimal health, equal access to care, and appropriate utilization of health care resources, balanced with the patient's right to self-determination. This article presents an overview of the patient and family outcomes and nursing actions identified by the group regarding CCTM.

The Cambia Sojourns Scholars Leadership Program: Conversations with Emerging Leaders in Palliative Care.

BACKGROUND: There is a pressing workforce shortage and leadership scarcity in palliative care to adequately meet the demands of individuals with serious illness and their families. To address this gap, the Cambia Health Foundation launched its Sojourns Scholars Leadership Program in 2014, an initiative designed to identify, cultivate, and advance the next generation of palliative care leaders. This report intends to summarize the second cohort of Sojourns Scholars' projects and their reflection on their leadership needs. OBJECTIVE: This report summarizes the second cohort of sojourns scholars' project and their reflection on leadership needs. METHODS: After providing a written reflection on their own projects, the second cohort participated in a group interview (fireside chat) to elicit their perspectives on barriers and facilitators in providing palliative care, issues facing leadership in palliative care in the United States, and lessons from personal and professional growth as leaders in palliative care. They analyzed the transcript of the group interview using qualitative content analysis methodology. RESULTS: Three themes emerged from descriptions of the scholars' project experience: challenges in palliative care practice, leadership strategies in palliative care, and three lessons learned to be a leader were identified. Challenges included perceptions of palliative care, payment and policy, and workforce development. Educating and collaborating with other clinicians and influencing policy change are important strategies used to advance palliative care. Time management, leading team effort, and inspiring others are important skills that promote effectiveness as a leader. DISCUSSION: Emerging leaders have a unique view of conceptualizing contemporary palliative care and shaping the future. CONCLUSIONS: Providing comprehensive, coordinated care that is high quality, patient and family centered, and readily available depends on strong leadership in palliative care. The Cambia Scholars Program represents a unique opportunity.

Flourishing after depression: Factors associated with achieving complete mental health among those with a history of depression.

This study investigated factors associated with complete mental health among a nationally representative sample of Canadians with a history of depression by conducting secondary analysis of the 2012 Canadian Community Health Survey- Mental Health (n=20,955). Complete mental health was defined as 1) the absence of mental illness, substance abuse, or suicidal ideation in the past year; 2) happiness or life satisfaction almost every day/past month, and 3) social and psychological well-being. The prevalence of complete mental health among those with and without a history of depression was determined. In a sample of formerly depressed respondents (n=2528), a series of logistic regressions were completed controlling for demographics, socioeconomic status, health and lifetime mental health conditions, health behaviours, social support, adverse childhood experiences, and religiosity. Two in five individuals (39%) with a history of depression had achieved complete mental health in comparison to 78% of those without a history of depression. In comparison to the formally depressed adults who were not in complete mental health, those in complete mental health were more likely to be female, White, older, affluent, married, with a confidant, free of disabling pain, insomnia, and childhood adversities and without a history of substance abuse. They were also more likely to exercise regularly and use spirituality to cope.

Preradiation chemotherapy in primary high-risk brainstem tumors: phase II study CCG-9941 of the Children's Cancer Group.

PURPOSE: This Children's Cancer Group group-wide phase II trial evaluated the efficacy and toxicity of two chemotherapy arms administered before hyperfractionated external-beam radiotherapy (HFEBRT). PATIENTS AND METHODS: Thirty-two patients with newly diagnosed brainstem gliomas were randomly assigned to regimen A and 31 to regimen B. Regimen A comprised three courses of carboplatin, etoposide, and vincristine; regimen B comprised cisplatin, etoposide, cyclophosphamide, and vincristine. Both arms included granulocyte colony-stimulating factor. Patients were evaluated by magnetic resonance imaging after induction chemotherapy and HFEBRT at a dose of 72 Gy. RESULTS: Ten percent +/- 5% of regimen A patients objectively responded to chemotherapy. For combined induction and radiotherapy, 27% +/- 9% of patients improved. The neuroradiographic response rate for regimen B was 19% +/- 8% for chemotherapy and 23% +/- 9% after HFEBRT. Response rates were not statistically significant between regimens after induction or chemotherapy/HFEBRT. Event-free survival was 17% +/- 5% (estimate +/- SE) at 1 year and 6% +/- 3% at 2 years. Survival was significantly longer among patients who responded to chemotherapy (P <.05). Among patients who received regimen A induction, grades 3 and 4 leukopenia were observed in 50% to 65%, with one toxicity-related death. For regimen B, severe leukopenia occurred in 86% to 100%, with febrile neutropenia in 48% to 60% per course. CONCLUSION: Neither chemotherapy regimen meaningfully improved response rate, event-free survival, or overall survival relative to previous series of patients with brainstem gliomas who received radiotherapy with or without chemotherapy.

Collaborative clinical research on end-of-life care in pediatric oncology.

OBJECTIVES: To present an overview of research into end-of-life (EoL) care for pediatric patients with cancer and to describe research completed by a newly formed collaboration of researchers. DATA SOURCES: Professional group position papers and guidelines; research studies. CONCLUSION: Studies to date in pediatric EoL care used retrospective, descriptive, or pilot intervention designs, have been conducted in single-institution settings, and have included small numbers of patients. Most studies have explored perspectives of parents and health care professionals but have omitted the perspective of the dying child. IMPLICATIONS FOR NURSING PRACTICE: Advancing the science of EoL care will depend on intervention-based clinical trials that include the perspective of the dying child in addi tion to parents and health care professionals.

Establishing Feasibility of Early Palliative Care Consultation in Pediatric Hematopoietic Stem Cell Transplantation.

Children and adolescents undergoing hematopoietic stem cell transplantation (HSCT) encounter a number of distressing physical symptoms and existential distress but may not be afforded timely access to palliative care services to help ameliorate the distress. This feasibility study investigated the acceptability and outcomes of early palliative care consultation to promote comfort in this population. A longitudinal, descriptive cohort design examined both provider willingness to refer and willingness of families to receive palliative care interventions as well as satisfaction. Feasibility was demonstrated by 100% referral of eligible patients and 100% of patient and family recruitment (N = 12). Each family received 1 to 3 visits per week (ranging from 15 to 120 minutes) from the palliative care team. Interventions included supportive care counseling and integrative therapies. Families and providers reported high satisfaction with the nurse-led palliative care consultation. Outcomes included improvement or no significant change in comfort across the trajectory of HSCT, from the child and parental perspective. Early integration of palliative care in HSCT is feasible and acceptable to families and clinicians.

Pediatric palliative care in childhood cancer nursing: from diagnosis to cure or end of life.

OBJECTIVES: To describe selected components of pediatric palliative care from diagnosis to cure or end of life that combine to help nurses and other clinicians achieve goals of care for children with cancer and their families. DATA SOURCES: Published articles. CONCLUSION: Pediatric palliative care is characterized by diversity of care delivery models; effect of cancer on the family as the central focus of care; and consideration of culture, spirituality, communication, and ethical standards. End-of-life issues that can be anticipated by nurses and other clinicians include symptoms of cancer or its treatment, the importance of hopefulness, the relevance of trying to be a good parent in decision making, the meaning of legacy making of ill children, and family bereavement. IMPLICATIONS FOR NURSING PRACTICE: Direct nursing care strategies to achieve pediatric palliative care goals are vital to reduce child and family suffering from cancer.

Phase I clinical trial of cilengitide in children with refractory brain tumors: Pediatric Brain Tumor Consortium Study PBTC-012.

PURPOSE: A phase I trial of the antiangiogenesis agent cilengitide (EMD 121974), an alpha v beta 3,5 integrin antagonist, was performed to estimate the maximum-tolerated dose (MTD) and describe dose-limiting toxicities (DLTs) and the incidence and severity of other toxicities when administered to children with refractory brain tumors. PATIENTS AND METHODS: Thirty-one assessable patients received intravenous cilengitide over 1 hour twice a week for up to 52 weeks at dosages from 120 to 2,400 mg/m(2). Serial blood and urine samples for clinical pharmacology studies were obtained in a subset of consenting patients. RESULTS: No DLTs were observed, and thus, the MTD was not estimated. Three of 13 patients at the dosage level of 2,400 mg/m(2) experienced grade 3 or 4 intratumoral hemorrhage (ITH) possibly related to the study drug; however, two of the ITH events were asymptomatic and, by the current toxicity criteria, would be classified as grade 1. For patients treated at cilengitide 2,400 mg/m(2), the 6-month cumulative incidence estimate of ITH is 23% (SE = 13%). No ITH was observed at 1,800 mg/m(2). Three patients completed 1 year of protocol therapy; one patient with glioblastoma multiforme demonstrated complete response, and two patients had stable disease (SD). An additional patient had SD for more than 5 months. CONCLUSION: The phase II dosage of intravenous cilengitide in children with refractory brain tumors is 1,800 mg/m(2). A phase II trial to assess the efficacy of cilengitide therapy for children with refractory brain tumors is being developed by the Children's Oncology Group.

Phase III study of craniospinal radiation therapy followed by adjuvant chemotherapy for newly diagnosed average-risk medulloblastoma.

PURPOSE: To determine the event-free survival (EFS) and overall survival of children with average-risk medulloblastoma and treated with reduced-dose craniospinal radiotherapy (CSRT) and one of two postradiotherapy chemotherapies. METHODS: Four hundred twenty-one patients between 3 years and 21 years of age with nondisseminated medulloblastoma (MB) were prospectively randomly assigned to treatment with 23.4 Gy of CSRT, 55.8 Gy of posterior fossa RT, plus one of two adjuvant chemotherapy regimens: lomustine (CCNU), cisplatin, and vincristine; or cyclophosphamide, cisplatin, and vincristine. Results Forty-two of 421 patients enrolled were excluded from analysis. Sixty-six of the remaining 379 patients had incompletely assessable postoperative studies. Five-year EFS and survival for the cohort of 379 patients was 81% +/- 2.1% and 86% +/- 9%, respectively (median follow-up over 5 years). EFS was unaffected by sex, race, age, treatment regimen, brainstem involvement, or excessive anaplasia. EFS was detrimentally affected by neuroradiographic unassessability. Patients with areas of frank dissemination had a 5-year EFS of 36% +/- 15%. Sixty-seven percent of progressions had some component of dissemination. There were seven second malignancies. Infections occurred more frequently on the cyclophosphamide arm and electrolyte abnormalities were more common on the CCNU regimen. CONCLUSION: This study discloses an encouraging EFS rate for children with nondisseminated MB treated with reduced-dose craniospinal radiation and chemotherapy. Additional, careful, step-wise reductions in CSRT in adequately staged patients may be possible.