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 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.

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.

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.

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.

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.

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.

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.

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.

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.

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. METHODS: Using grounded theory methods, we interviewed 15 parents of 13 children with cancer facing major treatment decisions. RESULTS: Parents' determination to make the right decision was both a demanding responsibility and a natural extension of the parental role. Everything parents encountered and undertook during the TDM process was in the service of making the right decision for their child. All parents expressed conviction that they had made the right decision, but conviction was tempered by doubts triggered by the pervasive uncertainty of the childhood cancer experience. Parents described limited TDM participation by extended family members and the affected children themselves, asserting their primary responsibility to act as their child's surrogate in partnership with the child's medical team. CONCLUSIONS: Making the right decision for one's child under challenging conditions is an extension of the parental obligation to act in the child's best interest and a responsibility that parents claim as their own. IMPLICATIONS FOR PRACTICE: The findings from this study can serve as the foundation for future studies to refine the conceptualization of TDM in childhood cancer, which will in turn ground the development and evaluation of interventions to support parents in their critical TDM role.

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. SAMPLE: 20 parents of children with cancer who made a treatment decision within the previous six months. METHODS: Eight instruments were translated from print to electronic format and deployed using a secure Web-based server. Parents completed printed versions of two of the instruments to assess comparability of the two formats. A post-survey interview focused on parents' computer experiences and the acceptability and ease of use of the instruments. MAIN RESEARCH VARIABLES: Time to orient parent to Web site, time to complete instruments, investigators' field notes, and postsurvey questionnaire. FINDINGS: Eighty percent of parents preferred the Web-based data collection and found it at least as easy as completing paper-and-pencil instruments. All parents, regardless of their computer expertise, were comfortable with the electronic data collection system. Statistical analysis demonstrated no evidence of systematic or clinically significant bias. CONCLUSIONS: The Web-based data collection was feasible, reliable, and preferred by most study participants. The authors will use this strategy in future intervention trials of parents making treatment decisions. IMPLICATIONS FOR NURSING: Web-based data entry is feasible and acceptable to parents of children with cancer. Future multicenter collaborative studies should develop and test nursing interventions to support parents making treatment decisions.

Parents of children with cancer: factors influencing their treatment decision making roles.

This study examined the factors that parents identified as influencing their role in treatment decision making (TDM) for their child with cancer. Content analysis of qualitative data from semistructured interviews with 36 parents as part of a mixed-methods study revealed numerous themes related to parents' TDM roles. Factors that were frequently identified included: relationship with the physician, nature of communication, trust in the physician, parents' and physician's knowledge and experience, and importance of parental role. Parents acknowledged a strong sense of responsibility and feeling of "ownership" of their child. Parents initially lacked knowledge and experience, but acquiring these over time contributed to a more active participation in 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.