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. METHODS: Data were collected through a chart review of 176 pediatric patients who underwent first orthotopic heart transplantation (OHT) at a single center from 2013 to 2021. The Area Deprivation Index (ADI), a composite score based on U.S. census data, was used to quantify SES. Cox proportional hazards models and generalized linear models were employed to analyze the association between SES and graft failure, rejection rates, and hospitalization rates. RESULTS: The analysis revealed no statistically significant differences in graft failure rates, rejection rates, or hospitalization rates between low-SES and high-SES pediatric heart transplant patients for our single-center study. CONCLUSION: There may be patient education, policies, and social resources that can help mitigate SES-based healthcare disparities. Additional multi-center research is needed to identify post-transplant care that promotes patient equity.

Trajectories in Intensity of Medical Interventions at the End of Life: Clustering Analysis in a Pediatric, Single-Center Retrospective Cohort, 2013-2021.

OBJECTIVE: Pediatric deaths often occur within hospitals and involve balancing aggressive treatment with minimization of suffering. This study first investigated associations between clinical/demographic features and the level of intensity of various therapies these patients undergo at the end of life (EOL). Second, the work used these data to develop a new, broader spectrum for classifying pediatric EOL trajectories. DESIGN: Retrospective, single-center study, 2013-2021. SETTING: Four hundred sixty-one bed tertiary, stand-alone children's hospital with 112 ICU beds. PATIENTS: Patients of age 0-26 years old at the time of death. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Of 1111 included patients, 85.7% died in-hospital. Patients who died outside the hospital were older. Among the 952 in-hospital deaths, most occurred in ICUs (89.5%). Clustering analysis was used to distinguish EOL trajectories based on the presence of intensive therapies and/or an active resuscitation attempt at the EOL. We identified five simplified categories: 1) death during active resuscitation, 2) controlled withdrawal of life-sustaining technology, 3) natural progression to death despite maximal therapy, 4) discontinuation of nonsustaining therapies, and 5) withholding/noninitiation of future therapies. Patients with recent surgical procedures, a history of organ transplantation, or admission to the Cardiovascular ICU had more intense therapies at EOL than those who received palliative care consultations, had known genetic conditions, or were of older age. CONCLUSIONS: In this retrospective study of pediatric EOL trajectories based on the intensity of technology and/or resuscitation discontinued at the EOL, we have identified associations between these trajectories and patient characteristics. Further research is needed to investigate the impact of these trajectories on families, patients, and healthcare providers.

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. This review details the experiences of current PHO ethicists, providing a blueprint for future educational, research and service activities to strengthen the trajectory of the burgeoning sub-subspecialty of PHO ethics. Creating an American Society of Pediatric Hematology/Oncology (ASPHO) ethics Special Interest Group, enhancing clinical ethics education for pediatric hematologists/oncologists (PHOs), developing multi-institutional research collaborations, and increasing attention to ethical issues germane to nonmalignant hematology will serve the interests of the entire field of PHO, enhancing the care of PHO patients and careers of PHOs.

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. DESIGN: Retrospective database study of a cohort meeting inclusion criteria. SETTING: Thirty-six centers participating in the Advanced Cardiac Therapies Improving Outcomes Network (ACTION) Registry. PATIENTS: Children who died on VAD therapy in the period March 2012 to September 2021. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Of the 117 of 721 patients (16%) who died on VAD, the median (interquartile range) age was 5 years (1-16 yr) at 43 days (17-91 d) postimplant. Initial goals of therapy were bridge to consideration for candidacy for transplantation in 60 of 117 (51%), bridge to transplantation in 44 of 117 (38%), bridge to recovery 11 of 117 (9%), or destination therapy (i.e., VAD as the endpoint) in two of 117 (2%). The most common cause of death was multiple organ failure in 35 of 117 (30%), followed by infection in 12 of 117 (10%). Eighty-five of 92 (92%) died with a functioning device in place. Most patients were receiving invasive interventions (mechanical ventilation, vasoactive infusions, etc.) at the end of life. Twelve patients (10%) died at home. CONCLUSIONS: One-in-six pediatric VAD patients die while receiving device support, with death occurring soon after implant and usually from noncardiac causes. Aggressive interventions are common at the end-of-life. The ACTION Registry data should inform future practices to promote informed patient/family and clinician decision-making to hopefully reduce suffering at the end-of-life.

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. METHODS: A qualitative descriptive study was conducted using content analysis. Fifteen nurse participants completed a precamp questionnaire and semistructured focus groups immediately following camp. Individual interviews were conducted 6 months after camp. RESULTS: Three categories emerged: 1) personal factors, changes in the nurses themselves; 2) patient and family factors, changes in how nurses perceived patients and families; and 3) work-related factors, relationships with colleagues. CONCLUSIONS: Supporting PICU nurses to participate with patients, families, and colleagues outside of the hospital may reduce burnout and support nurses' well-being.

Identifying a conceptual shift in child and adolescent-reported treatment decision making: "Having a say, as I need at this time".

BACKGROUND: Professional organizations and governments recommend child and adolescent involvement in cancer treatment decision making (TDM) despite minimal evidence that children prefer involvement, how best to include them, and the result of doing so. PROCEDURE: Using descriptive qualitative research methods, we interviewed 20 children ages 9-17 years about their TDM preferences and experiences. We shifted our conceptualizations as findings emerged about how children with cancer viewed their decisional experiences. Results from constant comparative analysis of participant interviews yielded a new construct, "Having a say, as I need at this time" ('Having a Say'), which focuses more broadly on child communication preferences and the dynamism of those preferences. Ten additional interviews confirmed 'Having a Say' results. RESULTS: Children's contextually related 'Having a Say' preferences ranged from not wanting to hear information at this time, to being included in treatment discussions, to choosing a treatment option. Children reported both positive and negative effects of being involved (or not) in treatment discussions as they preferred. Children's preferences assumed the presence and involvement of their parents and doctors. Illness conditions (e.g., stage of treatment; symptom distress) informed child communication preferences more so than the child's age. CONCLUSIONS: The 'Having a Say' construct challenges the dominant shared TDM paradigm, which presumes it is best to involve children in their treatment decisions. 'Having a Say' is both a developmental and conceptual fit for children that can inform future research to develop and test clinical care approaches to meet child and adolescent communication needs.

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. Responses were deidentified and analyzed to determine the utility of the program by both participant satisfaction and self-reported academic productivity. Results indicated that mentees were generally satisfied with the program. Mentor-mentee pairs that met at least quarterly demonstrated greater academic productivity than pairings that met less frequently. This formal mentorship program appeared to have subjective and objective utility for the development of academic pediatric subspecialists.

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

Purpose: 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. Methods: A mixed methods design was used to obtain quantitative and qualitative data on the overall needs of AYA cancer patients. Participants, aged 16-29, who enrolled early in their cancer treatment, completed the Stanford Adolescent and Young Adult Cancer (SAYAC) Program survey and a subsequent one-on-one semistructured interview. Results: The quantitative and qualitative data were analyzed separately. The data revealed that AYAs adjusted and adapted to their cancer diagnosis to meet their health care needs. Three themes emerged from the data: acquisition of knowledge and experience, participation in decision-making and self-management behaviors, and gaining perspectives on life inside and outside of the hospital. The quantitative data revealed that the participants agreed or strongly agreed on the importance of being involved in the decision-making process, incorporating hopes and dreams into their treatment, and feeling supported by their family. Conclusion: Understanding the needs of AYAs who undergo cancer treatment is vital to their overall well-being. Using different data collection methods, including interviews, can clarify AYA needs and lead to improved individualized care.

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

Background: 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. Objective: To explore involvement of AYAs with cancer in day-to-day decisions affected by their cancer and treatment. Methods: This qualitative study used interpretive focused ethnography within the sociologic tradition, informed by symbolic interactionism. Semi-structured interviews and informal participant observation took place at two quaternary pediatric oncology programs. Results: Thirty-one interviews were conducted with 16 AYAs ages 15 to 20 years. Major day to day decision-making categories identified included: (1) mental mindset, (2) self-care practices, (3) self-advocacy, and (4) negotiating relationships. Participants described how they came to grips with their illness early on and decided to fight their cancer. They described decisions they made to protect their health, how they advocated for themselves and decisions they made about relationships with family and friends. Conclusions: Through day-to-day decisions, participants managed the impact of cancer and its treatment on their daily lives. Research should focus on developing and implementing interventions to empower AYAs to participate in day-to-day decisions that will affect how they manage their cancer, its treatment and ultimately their outcomes. Implications for Practice: Healthcare providers can facilitate AYA's participation in day-to-day decision making through encouraging autonomy and self-efficacy by providing support and through effective communication.

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. This partnership is the foundation of a dynamic research process that illuminates critical perspectives. We present a hypothetical pediatric palliative study; a qualitative descriptive study of the perspectives of adolescents and young adults with life-limiting illnesses and their parents after a discussion about an end-of-life decision. Pediatric palliative care researchers, institutional review board leaders, and the parent of a child who died comment on how to balance the obligations to improve clinical care and to protect participants in research. Their recommendations include recruiting a wide range of participants, differentiating emotional responses from harm, approaching potential participants as individuals, and seeking feedback from family advisory boards and designated reviewers with content expertise.

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. IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses play a pivotal role in supporting the goals of pediatric palliative care and hospice care and in educating patients and their families. Nurses form trusting relationships with pediatric oncology patients and their families and are in a position to advocate for best palliative care practices as disease progresses to end of life, including when appropriate concurrent care or hospice.

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). METHODS: Using interpretive focused ethnography, we conducted interviews with 16 AYAs (total of 31 interviews) receiving cancer treatment within 1 year of diagnosis. Participants reflected on a major recent TDM experience (eg, clinical trial, surgery) and other treatment decisions. RESULTS: Participants distinguished important major cancer treatment decisions from minor supportive care decisions. We identified 3 common dimensions related to AYAs' involvement in cancer TDM: (1) becoming experienced with cancer, (2) import of the decision, and (3) decision-making roles. The preferences of AYAs for participation in TDM varied over time and by type of decision. We have proposed a 3-dimensional model to illustrate how these dimensions might interact to portray TDM during the first year of cancer treatment for AYAs. CONCLUSIONS: As AYAs accumulate experience in making decisions, their TDM preferences might evolve at different rates depending on whether the decisions are perceived to be minor or major. Parents played a particularly important supportive role in TDM for AYA participants. IMPLICATIONS FOR PRACTICE: Clinicians should consider the AYAs' preferences and the role they want to assume in making different decisions in order to support and encourage involvement in their TDM and care.

Chemotherapy and Supportive Care Agents as Essential Medicines for Children With Cancer.

In resource-rich countries, 5-year survival rates for children with cancer approach 85%. This impressive statistic is largely the result of integrating research with clinical care. At the core of this endeavor are multiagent combination chemotherapy and supportive care agents (CASCA). Most CASCAs belong to the class of sterile injectable drugs, which make up the backbone of many proven and life-saving pediatric oncology regimens. There are few if any alternative agents available to treat most life-threatening childhood cancers. In the United States, shortages of CASCAs are now commonplace. The consequences of drug shortages are far reaching. Beyond the economic costs, these shortages directly affect patients' lives, and this is especially true for children with cancer. Drug shortages in general and shortages of CASCAs specifically result in increased medication errors, delayed administration of life-saving therapy, inferior outcomes, and patient deaths. One way to mitigate drug shortages is to adopt an essential medicines list and ensure that these medications remain in adequate supply at all times. We argue for creation of a CASCA-specific essential medicines list for childhood cancer and provide ethical and policy-based reasoning for this approach. We recognize that such a call has implications beyond pediatric cancer, in that children with other serious disease should have an equal claim to access to guaranteed evidence-based medicines. We provide these arguments as an example of what should be claimed for medical indications that are deemed essential to preserve life and function.

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. DATA EVALUATION: 4,047 articles were identified; 21 met inclusion criteria. SYNTHESIS: Five factors were identified. IMPLICATIONS FOR RESEARCH: Research is needed to understand AYAs' preferences for TDM, the type and degree of their involvement, and the interactions between factors that contribute to or impede TDM.

Parental treatment decision making in pediatric oncology.

OBJECTIVE: To review progress and future plans for a research program about parents' making treatment decisions for their children with cancer. DATA SOURCES: Theoretical papers, review articles, and research reports. CONCLUSION: Three important questions need to be addressed to achieve the goal of supporting parents in treatment decision making: 1) Whatfactors predict a parent's preferred role iln decision making? 2) What are the critical outcomes from parental decision making that nurses could help to improve? 3) Is it role choice, actual role assumed, or congruence between preferred and actual role in decision making that predicts decision outcomes for the parents? IMPLICATIONS FOR NURSING PRACTICE: Research-based responses to the remaining questions about parent treatment decision making will help nurses develop and test interventions designed to support parents in their decision making experiences.

Infusion pump-mediated mechanical hemolysis in pediatric patients.

CONTEXT: Hemoglobinuria was observed after packed red blood cell transfusion in a series of patients at our pediatric treatment center. Laboratory testing was suggestive of intravascular hemolysis with no support for an immunohematologic process. OBJECTIVE: We investigated these adverse events to define a quality improvement plan and to prevent future hemolytic adverse events. Multiple factors were investigated, and the only change identified was the implementation of a new infusion pump (Pump A) that replaced a previous model (Pump B). DESIGN: In vitro pump analyses, a retrospective review of urinalyses, and prospective urinalysis and nursing surveillances were also performed. RESULTS: In in vitro analysis of the pumps, irradiated units with higher hematocrit at a low flow rate through Pump A had a greater than thirty-fold increase in free hemoglobin from baseline compared to minimal free hemoglobin changes seen with Pump B. Irradiated units with a lower hematocrit had a minimal change in free hemoglobin from baseline with both Pumps A and B at either low or high flow rate. Subsequently, only units with lower hematocrits were issued for transfusion of pediatric patients, and Pump A was replaced by Pump B in the outpatient unit. Retrospective and prospective surveillances found no additional unexplained cases of gross hemoglobinuria associated with transfusion. CONCLUSION: The investigation determined that infusion of higher hematocrit units using a specific commercial pump was associated with mechanical hemolysis. The change to units with lower hematocrit through an alternative pump has been an effective corrective action to date.

Hypothesis generation for childhood cancer communication research: results of a secondary analysis.

Secondary analysis of existing qualitative datasets offers an opportunity to efficiently use these difficult-to-collect data to generate hypotheses for future research and expand understanding of the phenomena under study. We conducted a retrospective interpretation of two qualitative datasets regarding childhood cancer treatment decision making to elaborate themes regarding parents' cancer communication (information sharing and involvement of their children in treatment decision making) that were not fully developed in the original analyses. We identified broad variability in parents' cancer communication that was not entirely dependent upon the age of their ill child. We were able to generate multiple hypotheses to help guide our future research.