Early Integration of Palliative Care Services in Pediatric Stem Cell Transplant Patients.

Patients undergoing hematopoietic stem cell transplant are at risk for significant morbidity and mortality throughout their treatment course. The aim of this evidence-based practice project was to determine if the use of a palliative care trigger tool impacted the number of palliative care consults and/or the early integration of palliative care services within the pediatric hematopoietic stem cell transplant patient population. A trigger tool was developed to identify patients at highest risk for stem cell transplant-associated morbidity and mortality.

Child and Adolescent Cancer Communication Preferences for Treatment Decision Making: A Meta-Synthesis.

Background: Children and adolescents (C&A) <18 years of age report varying cancer treatment communication preferences. The aim of this qualitative meta-synthesis was to describe C&A voices regarding their preferences for engagement in their treatment communication. This report shares their preferences specific to their involvement in cancer treatment decision-making (TDM).

Clinician Perspectives on Compassionate Deactivation of Pediatric Ventricular Assist Devices.

Following ventricular assist device (VAD) placement, families and clinicians often have differing perspectives. When adverse events reduce patients' quality of life, families and clinicians question the desirability of continuing VAD support. Given the increasing use of VAD in pediatrics, pediatric-specific guidelines for the process of compassionate deactivation (CD) of VAD are needed, based in part on the perspectives of pediatric heart failure clinicians.

Comparative analysis of RNA expression identifies effective targeted drug in myoepithelial carcinoma.

Myoepithelial carcinoma is an ultra-rare pediatric solid tumor with no targeted treatments. Clinical implementation of tumor RNA sequencing (RNA-Seq) for identifying therapeutic targets is underexplored in pediatric cancer. We previously published the Comparative Analysis of RNA Expression (CARE), a framework for incorporating RNA-Seq-derived gene expression into the clinic for difficult-to-treat pediatric cancers.

Developing and evaluating an introduction to evidence-based practice course for staff in a pediatric hospital setting.

Background: Evidence-Based Practice (EBP) is the cornerstone of clinical practice drawing on the best available evidence, clinical practice, and patient preferences. It is a critical component in the provision of high-quality patient care. At a pediatric children's hospital, a course targeted toward EBP education was a priority for its staff nurses and leaders.

Parental and Young Adult Perspectives on Investigative Genomic Tumor Profiling in High-Risk, Recurrent, or Rare Pediatric Cancers: A Qualitative Study.

Background: Although research has improved the prognosis of childhood cancer, many challenges remain, especially for high-risk, recurrent, and rare cancers. The recognition that diverse cancer types may share molecular alterations that can be therapeutically targeted has stimulated "precision medicine" approaches in research. Understanding parent and patient interest in genomic-derived therapeutic options in the clinical setting is limited and offers a potential for improved care.

Comparative analysis of RNA expression in a single institution cohort of pediatric cancer patients.

With the low incidence of mutations in pediatric cancers, alternate genomic approaches are needed to identify therapeutic targets. Our study, the Comparative Analysis of RNA Expression to Improve Pediatric and Young Adult Cancer Treatment, was conducted by the UC Santa Cruz Treehouse Childhood Cancer Initiative and Stanford University School of Medicine. RNA sequencing data from 33 children and young adults with a relapsed, refractory or rare cancer underwent CARE analysis to reveal activated cancer driver pathways and nominate treatments.

Family Presence in Pediatric Cardiac Procedural Settings: A Qualitative Study of Clinicians, A Key Stakeholder Group.

Background: With increased emphasis on healthcare transparency, parents are increasingly asking to be present for procedures performed on their children, especially in high-acuity contexts like care of children with congenital heart disease (CHD), where procedures may inform critical care decisions. In addition, observations of complex care may better communicate clinical knowledge and benefit grieving after adverse events. We examined clinicians' views on current family presence (FP) efforts and on the expansion of FP to include the observation of operative procedures.

The effect of socioeconomic status on pediatric heart transplant outcomes at a single institution between 2013 and 2022.

Background: Disparities in pediatric heart transplant outcomes based on socioeconomic status (SES) have been previously observed. However, there is a need to reevaluate these associations in contemporary settings with advancements in transplant therapies and increased awareness of health disparities. This retrospective study aims to investigate the relationship between SES and outcomes for pediatric heart transplant patients.

The role of ethicists in pediatric hematology/oncology: Current status and future needs.

As pediatric hematology/oncology (PHO) becomes more complex and sub-subspecialized, dedicated PHO ethicists have emerged as sub-subspecialists focused on addressing ethical issues encountered in clinical and research practices. PHO physicians and other clinicians with advanced training in bioethics contribute to the field through ethics research, education, and ethics consultation services. Furthermore, there exists a newer generation of PHO trainees interested in bioethics.

End-of-Life in Pediatric Patients Supported by Ventricular Assist Devices: A Network Database Cohort Study.

Objectives: Most pediatric patients on ventricular assist device (VAD) survive to transplantation. Approximately 15% will die on VAD support, and the circumstances at the end-of-life are not well understood. We, therefore, sought to characterize patient location and invasive interventions used at the time of death.

Balancing Protection and Progress in Pediatric Palliative Care Research: Stakeholder Perspectives.

Pediatric palliative care, including end-of-life care, remains a relatively new area of interdisciplinary clinical practice and research. Improving the multifaceted and complex care of children and their families involves research that (1) documents the experiences of children with serious illness, their families, and clinicians; (2) evaluates relationships between contextual factors and health outcomes; and (3) establishes a stronger foundation for child- and family-focused interventions to improve care. Partnership among stakeholders in family-focused research begins from design through conduct of the study.

Assessing the Needs of Adolescents and Young Adults Receiving Cancer Treatment: A Mixed Methods Study.

This study was designed to assess the most salient health care needs of adolescents and young adults (AYAs) who undergo cancer treatment. Understanding their age-related needs helps providers offer appropriate support when support is vital: as they accept diagnosis and undergo treatment. A mixed methods design was used to obtain quantitative and qualitative data on the overall needs of AYA cancer patients.

Day-to-Day Decision Making by Adolescents and Young Adults with Cancer.

Adolescents and young adults (AYAs) with cancer must negotiate the transition between childhood and adulthood while dealing with a life-threatening illness. AYA involvement in decision making varies depending on the type of decision and when decisions occur during treatment, and evidence suggests that AYAs want to be involved in decision making. To explore involvement of AYAs with cancer in day-to-day decisions affected by their cancer and treatment.

The Impact of Volunteering at a Family Camp for Children and Adolescents With Cancer: The Experience of Pediatric Intensive Care Nurses.

Objective: This study explored the experience of pediatric ICU (PICU) nurses who volunteered at a camp for families of children and adolescents with cancer.

Background: PICU nurses are at risk of developing symptoms of posttraumatic stress disorder, compassion fatigue, depression, and burnout due to exposure(s) to traumatic events. Spending time with patients, families, and nurse colleagues at camp may reduce the effects of this exposure.

Providing Palliative and Hospice Care to Children, Adolescents and Young Adults with Cancer.

Objectives: To describe palliative, concurrent, and hospice care in pediatric oncology in the United States (US), we present a clinical scenario illustrating palliative and hospice care, including eligibility for concurrent care, insurance coverage and billing, barriers to accessing quality pediatric palliative and hospice care, and implications for oncology nursing practice.

Data Sources: Peer-reviewed articles, clinical practice guidelines, professional organizations, and expert clinical opinion examining pediatric oncology, palliative care, and hospice care.

Conclusion: Understanding the goals of palliative and hospice care and the differences between them is important in providing holistic, goal-directed care.

3 Dimensions of Treatment Decision Making in Adolescents and Young Adults With Cancer.

Background: Adolescents and young adults (AYAs) experience treatment nonadherence rates as high as 60%, which can increase the risk of cancer relapse. Involvement of AYAs in treatment decisions might support adherence to medical treatment.

Objective: The aim of this study was to explore the involvement of AYAs, aged 15 to 20 years, in cancer treatment decision making (TDM).

Treatment Decision-Making Involvement in Adolescents and Young Adults With Cancer.

Problem Identification: Involvement in treatment decision making (TDM) is considered a key element of patient- and family-centered care and positively affects outcomes. However, for adolescents and young adults (AYAs) with cancer, little is known about the current state of knowledge about their perspective on and involvement in TDM or the factors influencing AYAs' TDM involvement.

Literature Search: Integrative review focused on AYAs aged 15-21 years, their involvement in TDM, and factors influencing their involvement using the MEDLINE®, PsycINFO®, CINAHL®, and Web of Science databases.

Mentoring in pediatric oncology: a report from the Children's Oncology Group Young Investigator Committee.

A formal Mentorship Program within the Children's Oncology Group (COG) was established to pair young investigators (mentees) with established COG members (mentors). Despite the American Academy of Pediatrics policy statement promoting mentorship programs, there are no publications describing and evaluating national mentorship programs in pediatric subspecialties. In this study, a series of internal program evaluations were performed using surveys of both mentors and mentees.

Making the right decision for my child with cancer: the parental imperative.

Background: Making major treatment decisions with life-altering consequences is a significant challenge faced by parents of children with cancer. The unique experience of parents is not well represented in the growing literature on cancer treatment decision making (TDM).

Objective: The objective of this study was to describe the process of parents making major treatment decisions for their children with cancer.

Feasibility, acceptability, and usability of web-based data collection in parents of children with cancer.

Purpose/objectives: To determine the feasibility of Web-based, multisite data collection using electronic instruments and the feasibility, acceptability, and usability of that data collection method to parents of children with cancer.

Design: Prototype development and feasibility study.

Setting: Three Children's Oncology Group centers in the United States.