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Context: The majority of seriously ill children do not have access to specialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. The Education in Palliative and End-of-Life Care (EPEC)-Pediatrics curriculum and dissemination project was created in 2011 in response to this widespread education and training need. Since its implementation, EPEC-Pediatrics has evolved and has been disseminated worldwide., Objectives: Assessment of past EPEC-Pediatrics participants' ("Trainers") self-reported PPC knowledge, attitudes, and skills; use of the curriculum in teaching; and feedback about the program's utility and future direction., Methods: From 2011 to 2019 survey of EPEC-Pediatrics past conference participants, using descriptive and content analyses., Results: About 172 of 786 (22% response rate) EPEC-Pediatrics past participants from 59 countries across six continents completed the survey. Trainers, including Master Facilitators (MFs), used the curriculum mostly to teach interdisciplinary clinicians and reported improvement in teaching ability as well as in attitude, knowledge, and skills (AKS) in two core domains of PPC: communication and pain and symptom management. The most frequently taught modules were about multimodal management of distressing symptoms. Trainers suggested adding new content to the current curriculum and further expansion in low-medium income countries. Most (71%) reported improvements in the clinical care of children with serious illnesses at their own institutions., Conclusion: EPEC-Pediatrics is a successful curriculum and dissemination project that improves participants' self-reported teaching skills and AKS's in many PPC core domains. Participating clinicians not only taught and disseminated the curriculum content, they also reported improvement in the clinical care of children with serious illness., (Copyright © 2021 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: The field of pediatric palliative care (PPC) continues to encounter challenges and opportunities to improving access to high-quality PPC services. In early 2019, a workshop identified 11 potential "next step" actions, and subsequently a national survey-based poll of members of the PPC community was conducted to prioritize these potential actions in terms of their "actionable importance.", Methods: Invitations to the survey were distributed in October 2019 to interdisciplinary PPC health care professionals via email to two major listservs, one hosted by the Section of Hospice and Palliative Medicine of the American Academy of Pediatrics, the other by the Center to Advance Palliative Care. Respondents rated the "actionable importance" of items relative to each other via a discrete choice experiment. Median importance scores are reported for each item., Results: One hundred seventy-seven individuals responded to the survey. The majority (62.2%) were physicians, with nurses (16.4%), advanced practice nurses (7.9%), and social workers (7.3%) being the other most common responders. The top five potential actions, in descending rank order, were: Determine what parents value regarding PPC (median score of 17.8, out of a total score of all items of 100); Define and disseminate core primary PPC curriculum (median, 15.3); Develop PPC national representation strategy and tactics (median, 12.3); Create PPC-specific program development toolkit (median, 10.9); and, Analyze payment and financing ratios (median, 9.6)., Conclusions: Those seeking to advance the field of PPC should take into account the findings from this study, which suggest that certain actions are more likely to have a beneficial impact on moving the field forward., (Copyright © 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: To dramatically advance the evidence base for pediatric palliative care (PPC) interventions, practices, and programs in the U.S. and similar practice settings, the field needs to better understand the challenges and opportunities for rigorous scholarship., Objectives: The Pediatric Palliative Care Research Network conducted a workshop to clarify challenges and identify key priorities., Methods: The workshop focused on PPC research topics and methods, including outcomes measurement, qualitative inquiry, analyses of big data, prospective collection of research data, case series and cohort studies, and intervention trials, with synthesizing summary and follow-up discussions. All attendees reviewed and approved the final report., Results: Five common challenges were identified: patient diversity and small population size; interdependencies and dynamic interactions between child, family members, and disease processes over time; outcomes and measurement; workforce and infrastructure limitations; and presumed burden of PPC research on participants. Seven priorities emerged: bolster training and development of PPC investigators; develop core resources; advance symptom measurement (and measurements of other exposures and outcomes); improve symptom management and quality of life interventions; improve communication, elicitation of goals of care, and decision making; understand family impact and facilitate or improve family adaptation and coping; and analyze and improve systems of care, policy, and education., Conclusion: These challenges and priorities identify key research areas that can guide individual investigators and research funders to advance the field., (Copyright © 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: Most children living and dying with serious illnesses experience high burden of distressing symptoms. Many seriously ill children and their families do not have access to subspecialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. Lack of PPC education appears to be a significant barrier to PPC implementation., Objectives: Description of the development and dissemination of Education in Palliative and End-of-Life Care (EPEC)-Pediatrics., Methods: Funded through a U.S. $1.6 million National Institutes of Health/National Cancer Institute grant 2010-2017, this 24-module curriculum was designed to teach primary palliative care. The target audience included interprofessional pediatric hematology/oncology providers and all other clinicians caring for seriously ill children., Results: The curriculum is delivered in a combination of online learning and in-person, face-to-face sessions. In addition, a one-day Professional Development Workshop was developed to teach EPEC-Pediatrics graduates, future "Trainers," thus becoming "Master Facilitators." Between 2012-May 2019, a total of 867 EPEC-Pediatric Trainers and 75 Master Facilitators from 58 countries participated in 17 Become an EPEC-Pediatrics-Trainer conferences and three Professional Development Workshops. The curriculum has also been adapted for large-scale dissemination across Canada and Latin-America, with translation to French and Spanish. Participants overwhelmingly report improvements in their PPC knowledge, attitudes, and skills, including teaching. Trainers subsequently anticipated improvements in patient care for children with serious illness at their home institutions., Conclusion: EPEC-Pediatrics has developed into the most comprehensive PPC curriculum worldwide. It is highly adaptable for local settings, became self-sustaining and six conferences are offered around the world in 2019., (Copyright © 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Although outcomes for children with heart disease have improved substantially over the past several decades, heart disease remains one of the leading causes of paediatric mortality. For children who progress to advanced heart disease, disease morbidity is high, with many children requiring multiple surgical interventions and long-term intensive care hospitalisations. Care for children with advanced heart disease requires a multidisciplinary approach, and opportunities for earlier integration of palliative care are being explored. This Viewpoint summarises the relevant literature over the past decade. We also identify gaps in parent and provider understanding of prognosis and communication, propose indications for palliative care consultation in paediatric advanced heart disease, and summarise attitudes and perceived barriers to palliative care consultation. Areas for additional research that we identify include paediatric cardiologist education, parental distress, socioeconomic disparities, and patient-reported outcomes. Interdisciplinary clinical and research efforts are required to further advance the field and improve integration of palliative care in the care of children with heart disease., (Copyright © 2019 Elsevier Ltd. All rights reserved.)

Context: In our increasingly multicultural society, providing sensitive and respectful pediatric palliative care is vital., Objectives: We held a one-day workshop conference with stakeholders and pediatric clinicians to identify suggestions for navigating conflict when cultural differences are present and for informing standard care delivery., Methods: Participants explored cases in one of four workshops focused on differences based on race/ethnicity, economic disparity, religion/spirituality, or family values. Each workshop was facilitated by two authors; separate transcriptionists recorded workshop discussions in real time. We used content analyses to qualitatively evaluate the texts and generate recommendations., Results: Participants included 142 individuals representing over six unique disciplines, 25 of the U.S., and three nations. Although the conference focused on pediatric palliative care, findings were broadly generalizable to most medical settings. Participants identified key reasons cultural differences may create tension and then provided frameworks for communication, training, and clinical care. Specifically, recommendations included phrases to navigate emotional conflict, broken trust, unfamiliar family values, and conflict. Suggested approaches to training and clinical care included the development of core competencies in communication, history taking, needs assessment, and emotional intelligence. Important opportunities for scholarship included qualitative studies exploring diverse patient and family experiences, quantitative studies examining health disparities, and randomized clinical trials testing interventions designed to improve community partnerships, communication, or child health outcomes., Conclusion: Taken together, findings provide a foundation for collaboration between patients, families, and clinicians of all cultures., (Copyright © 2019 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Based on the strong link between poverty and child health outcomes, both the American Academy of Pediatrics (AAP) and national pediatric oncology associations have advocated for routine clinical poverty screening. Systematic implementation of this recommendation in pediatric oncology is not yet standard, and feasibility data are needed. We report the feasibility of routine poverty screening in a pediatric oncology referral center and baseline poverty characteristics of this population., Methods: From 2013 to 2017, 448 families with newly diagnosed pediatric cancer at Dana-Farber/Boston Children's Cancer and Blood Disorders Center were offered the Psychosocial Assessment Tool 2.0 (PAT) as part of routine care. The PAT includes a two-item screen for household material hardship (HMH). All families were asked about annual household income by a resource specialist. Data were abstracted with sociodemographic and child/disease characteristics. Descriptive statistics are reported., Results: Four hundred and thirteen families completed the PAT (response rate 92%), of whom 394 (95%) completed specific questions assessing for HMH. Ninety-four percent of families who met with a resource specialist disclosed their annual household income. One quarter (27%) of families was ≤200% federal poverty level at diagnosis, and 44% of families endorsed at least one domain of HMH. The most frequent domains of HMH included housing (24%), utilities (20%), and transportation (20%)., Conclusions: Systematic poverty screening per AAP and pediatric oncology psychosocial standards of care is feasible in routine cancer care. There is a high baseline incidence (44%) of HMH in at least one domain in families with newly diagnosed pediatric cancer who may benefit from early identification and resource intervention., (© 2018 Wiley Periodicals, Inc.)

Background: Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology., Objectives: We examined the impact of an enhanced implementation of the Education in Palliative and End-of-Life Care for Pediatrics (EPEC ® -Pediatrics) curriculum on the following: (1) knowledge dissemination; (2) health professionals' knowledge; (3) practice change; and (4) quality of PPC., Design: An integrated knowledge translation approach was used with pre-/posttest evaluation of care quality. Setting/Subjects/Measurements: Regional Teams of 3-6 health professionals based at 15 pediatric oncology programs in Canada became EPEC-Pediatrics Trainers who taught the curriculum to health professionals (learners) and implemented quality improvement (QI) projects. Trainers recorded the number of learners at each education session and progress on QI goals. Learners completed knowledge surveys. Care quality was assessed through surveys with a cross-sectional sample of children with cancer and their parents about symptoms, quality of life, and care quality plus reviews of deceased patients' health records., Results: Seventy-two Trainers taught 3475 learners; the majority (96.7%) agreed that their PPC knowledge improved. In addition, 10/15 sites achieved practice change QI goals. The only improvements in care quality were an increased number of days from referral to PPC teams until death by a factor of 1.54 (95% confidence interval [CI] = 1.17-2.03) and from first documentation of advance care planning until death by a factor of 1.50 (95% CI = 1.06-2.11), after adjusting for background variables., Conclusion: While improvements in care quality were only seen in two areas, our approach was highly effective in achieving knowledge dissemination, knowledge improvement, and practice change goals.

Purpose of Review: Pediatric palliative oncology (PPO) is an emerging field that integrates the principles of palliative care early into the illness trajectory of children with cancer. PPO providers work with interdisciplinary clinicians to provide optimal medical and psychosocial care to children with cancer and their families. Ongoing advances in the field of pediatric oncology, including new treatment options for progressive cancers, necessitate the early integration of palliative care tenets including holistic care, high-quality communication, and assessment and management of refractory symptoms., Recent Findings: Research in this emerging field has expanded dramatically over the past several years. This review will focus on advancements within several key areas of the field, specifically regarding investigation of the communication needs and preferences of patients and families, exploration of educational initiatives and interventions to teach PPO principles to clinicians, study of patient-reported and parent-reported tools to better assess and manage refractory symptoms, and development of novel models to integrate palliative care within pediatric oncology., Summary: Research findings in the field of PPO, concurrent with advances in the treatment of pediatric cancer, may help improve survival and quality of life for children with cancer.

Communication is central to pediatric oncology care. Pediatric oncologists disclose life-threatening diagnoses, explain complicated treatment options, and endeavor to give honest prognoses, to maintain hope, to describe treatment complications, and to support families in difficult circumstances ranging from loss of function and fertility to treatment-related or disease-related death. However, parents, patients, and providers report substantial communication deficits. Poor communication outcomes may stem, in part, from insufficient communication skills training, overreliance on role modeling, and failure to utilize best practices. This review summarizes evidence for existing methods to enhance communication skills and calls for revitalizing communication skills training within pediatric oncology., (© 2016 Wiley Periodicals, Inc.)

Context: Few data exist regarding clinician preparedness to participate in advance care discussions (ACD) and the practices surrounding these discussions for children with life-threatening conditions., Objectives: We sought to understand pediatric clinician preparedness to participate in ACD and the practices surrounding these discussions., Methods: A survey was administered to assess clinician attitudes and behaviors regarding ACD., Results: Two hundred sixty-six clinicians (107 physicians and 159 nurses) responded to the survey (response rate 53.6%). Seventy-five percent of clinicians felt prepared to participate in ACD. Most clinicians believed they were prepared to express empathy (98.8%), discuss goals of care for an adolescent patient (90.3%), and elicit a parent's hopes (90.3%). Conversely, several felt unprepared to discuss resuscitation status with school-aged (59.7%) and adolescent (48.5%) patients and to conduct a family conference (39.5%). The most frequent topics addressed were: parents' understanding of the patient's illness (75.5%), primary goals of the parent (75.1%), and the parents' understanding of prognosis (71.1%). Conversely, the topics least commonly discussed were as follows: belief system of the patient/family (22.0%), patient's hopes (21.2%), and the patient's perceptions of his/her quality of life (19.8%). Notably, 40% of clinicians believe that caring for patients with poor prognoses is depressing, and this was more common among less-experienced clinicians (P = 0.048)., Conclusion: Many clinicians believe they are prepared to participate in ACD, but practices are not consistent with expert recommendations for optimal ACD. Educational interventions aimed at improving clinician knowledge, attitudes, and behavior, and greater clinician support may enhance health care provider ACD preparedness and skills., (Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

The study team conducted a systematic review of pediatric and adolescent palliative cancer care literature from 1995 to 2015 using four databases to inform development of a palliative care psychosocial standard. A total of 209 papers were reviewed with inclusion of 73 papers for final synthesis. Revealed topics of urgent consideration include the following: symptom assessment and intervention, direct patient report, effective communication, and shared decision-making. Standardization of palliative care assessments and interventions in pediatric oncology has the potential to foster improved quality of care across the cancer trajectory for children and adolescents with cancer and their family members., Competing Interests: Nothing to declare., (© 2015 Wiley Periodicals, Inc.)

The chronicity of illness that afflicts children in Pediatric Palliative Care and the medical technology that has improved their lifespan and quality of life make prognostication extremely difficult. The uncertainty of prognostication and the available medical technologies make both the neonatal intensive care unit and the pediatric intensive care unit locations where many children will receive Pediatric Palliative Care. Health care providers in the neonatal intensive care unit and pediatric intensive care unit should integrate fundamental Pediatric Palliative Care principles into their everyday practice., (Copyright © 2015 Elsevier Inc. All rights reserved.)

Objective: To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents, to formulate a consensus on prioritization of the PPC research agenda., Study Design: A 4-round modified Delphi online survey was administered to PPC experts and to parents of children who had received PPC. In round 1, research priorities were generated spontaneously. Rounds 2 and 3 then served as convergence rounds to synthesize priorities. In round 4, participants were asked to rank the research priorities that had reached at least 80% consensus., Results: A total of 3093 concepts were spontaneously generated by 170 experts and 72 parents in round 1 (65.8% response rate [RR]). These concepts were thematically organized into 78 priorities and recirculated for round 2 ratings (n = 130; 53.7% RR). Round 3 achieved response stability, with 31 consensus priorities oscillating within 10% of the mode (n = 98; 75.4% RR). Round 4 resulted in consensus recognition of 20 research priorities, which were thematically grouped as decision making, care coordination, symptom management, quality improvement, and education., Conclusions: This modified Delphi survey used professional and parental consensus to identify preeminent PPC research priorities. Attentiveness to these priorities may help direct resources and efforts toward building a formative evidence base. Investigating PPC implementation approaches and outcomes can help improve the quality of care services for children and families., (Copyright © 2015 Elsevier Inc. All rights reserved.)

Purpose of Review: To review the role of pediatric palliative care (PPC) for children with metabolic and neurological diseases., Recent Findings: There is a growing body of literature in PPC, though it remains limited for children with metabolic and neurological diseases. Evidence indicates the benefit of PPC. Utilization of PPC programmes can facilitate communication, ensure that families are better informed, improve certainty with decisions, enhance positive emotions, result in fewer invasive interventions at the end of life, and have an impact on location of death. Barriers to utilization of PPC include concern about taking away hope and uncertainty about prognosis. Challenging areas for children with metabolic and neurological diseases include the identification of distressing symptoms and prognostic uncertainty. This article aims to review literature relevant to this group of children, as well as provide a framework when considering specific palliative care needs., Summary: PPC for children with metabolic and neurological diseases can lessen a child's physical discomfort and enhance parental certainty with decision-making. These areas along with other needs throughout the illness trajectory and bereavement are being increasingly met by the growing availability of PPC programmes.

Over the past two decades, paediatric palliative care has emerged as both a primary approach and as its own medical subspecialty, the overall aim of which is to ease suffering for children with life-threatening illness and their families through a concurrent model of care. However, most discussions have been focused on the transition to palliative care when no realistic hope for cure exists. We believe that, because the course of cancer is so unpredictable, this idea is misleading. Indeed, palliative care is increasingly being recognized as being about not just how to cope with the process of dying, but also about how to engage in living when faced with a life-threatening illness. This article will examine our current understanding of several areas of palliative care, with the ultimate message that palliative care is simply a novel term for the total care of a child and family, an approach that should be applied consistently and concurrently regardless of disease status. By improving familiarity with palliative care and building relationships with palliative care specialists, the paediatric oncology clinician will ensure that the best care possible for children and families is provided, regardless of outcome.

Paediatric palliative care is an emerging subspecialty that focuses on achieving the best possible quality of life for children with life-threatening conditions and their families. To achieve this goal, the individuals working in this field need to: clearly define the population served; better understand the needs of children with life-threatening conditions and their families; develop an approach that will be appropriate across different communities; provide care that responds adequately to suffering; advance strategies that support caregivers and health-care providers; and promote needed change by cultivating educational programmes. Despite these challenges, advances in paediatric palliative care have been achieved in a short period of time; we expect far greater progress as the field becomes more formalised and research networks are established.

Paediatric palliative care is needed now more than ever. Medical and technological advances mean that children with complex chronic conditions are surviving longer, necessitating longitudinal support from communities and healthcare systems. Efforts need to be made to ensure our healthcare systems and workforce are equipped to meet the needs of this growing population, including gathering data on the effect of many of our primary and specialty palliative care interventions. BMC Palliative Care has launched a new article Collection on "Paediatric palliative care" to provide an open-access resource for all interested in this topic. [ABSTRACT FROM AUTHOR]

Care for U.S. children living with serious illness and their families at home is a complex and patchwork system. Improving home-based care for children and families requires a comprehensive, multilevel approach that accounts for and examines relationships across home environments, communities, and social contexts in which children and families live and receive care. We propose a multilevel conceptual framework, guided by Bronfenbrenner's ecological model, that conceptualizes the complex system of home-based care into five levels. Levels 1 and 2 contain patient and family characteristics. Level 3 contains factors that influence family health, well-being, and experience with care in the home. Level 4 includes the community, including community groups, schools, and providers. Level 5 includes the broader regional system of care that impacts the care of children and families across communities. Finally, care coordination and care disparities transcend levels, impacting care at each level. A multilevel ecological framework of home-based care for children with serious illness and families can be used in future multilevel research to describe and test hypotheses about aspects of this system of care, as well as to inform interventions across levels to improve patient and family outcomes. [ABSTRACT FROM AUTHOR]

Background: The quality of adult end‐of‐life (EOL) cancer care has benefited from quality measures, but corresponding pediatric measures are lacking. Therefore, the authors used a validated expert panel method to recommend EOL quality measures for pediatric oncology. Methods: The authors used the modified Delphi method to assess potential quality measures. Panelists were selected on the basis of professional organization nominations and expert qualifications. Pediatric and adult oncology, pediatric palliative care, social work, nursing, and hospice were represented. The authors provided the panel with a literature review on 20 proposed measures derived from adult measures and bereaved family interviews. The panel first scored the importance of each measure on a 9‐point scale and then discussed the measures via a conference call. The panel then rescored the measures. According to a priori standards, measures with median scores ≥ 7 with at least 7 of 9 experts ranking it as ≥4 were endorsed. Results: The 16 endorsed measures included measures related to avoidance of medically intense care (eg, intensive care unit death and intubation in the last 14 days of life), death location (eg, death in the preferred location), hospital policies/programs (eg, the removal of visitor restrictions at EOL and the presence of a bereavement program), and supportive care services (eg, pediatric palliative care involvement and sibling needs assessment). Unendorsed measures included avoidance of chemotherapy at EOL and home death. Conclusions: Expert panel–endorsed quality measures have been developed for EOL care in pediatric oncology. The measures need validation with bereaved families and further refinement before they are ready for real‐world application as a tool for standardizing EOL care in pediatric oncology. Lay Summary: Quality measures for end‐of‐life care for children with cancer lag behind adult quality measures. Therefore, the authors have conducted an expert panel to develop an endorsed list of quality measures for end‐of‐life care for children with cancer.The 16 endorsed measures include measures related to avoidance of medically intense care (eg, intensive care unit death and intubation in the last 14 days of life), location of death (eg, death in the preferred location), hospital policies/programs (eg, the removal of visitor restrictions at the end of life and the presence of a bereavement program), and supportive care services (eg, pediatric palliative care involvement and sibling needs assessment). An expert panel endorses 16 quality measures for end‐of‐life care for children with cancer. The measures are related to avoidance of medically intense care, location of death, hospital policies/programs, and supportive care services. [ABSTRACT FROM AUTHOR]

Background: Although international guidelines recommend discussions about goals of care and treatment options for children with severe and life-limiting conditions, there are still few structured models of paediatric advance care planning. Aim: The study aimed at identifying key components of paediatric advance care planning through direct discussions with all involved parties. Design: The study had a qualitative design with a participatory approach. Participants constituted an advisory board and took part in two transdisciplinary workshops. Data were collected in discussion and dialogue groups and analysed using content analysis. Setting/participants: We included bereaved parents, health care providers and stakeholders of care networks. Results: Key elements were discussions, documentation, implementation, timing and participation of children and adolescents. Parents engage in discussions with facilitators and persons of trust to reach a decision. Documentation constitutes the focus of professionals, who endorse brief recommendations for procedures in case of emergencies, supplemented by larger advance directives. Implementation hindrances include emotional barriers of stakeholders, disagreements between parents and professionals and difficulties with emergency services. Discussion timing should take into account parental readiness. The intervention should be repeated at regular intervals, considering emerging needs and increasing awareness of families over time. Involving children and adolescents in advance care planning remains a challenge. Conclusion: A paediatric advance care planning intervention should take into account potential pitfalls and barriers including issues related to timing, potential conflicts between parents and professionals, ambiguity towards written advance directives, the role of non-medical carers for paediatric advance care planning implementation, the need to involve the child and the necessity of an iterative process. [ABSTRACT FROM AUTHOR]

Background: Effective communication is a cornerstone of quality paediatric palliative care. Families report struggling, however, to know what to discuss, with whom, and when. Although question prompt lists exist for adult palliative care, they do not suit the unique circumstances of paediatric palliative care. Aim: To develop a prompt list suitable for paediatric palliative care. Design: Underpinned by Delphi methodology, a six-phase procedure was adopted: (1) drafting items based on the findings of a literature review, (2) condensing the list of items based on group discussion, (3) refining items based on a survey of expert healthcare professionals, (4) additional refining of items based on another survey of professionals, (5) further refining of items based on cognitive interviews with family members, and (6) final review by healthcare professional and family member groups. Participants: Three participant groups were involved during various phases: (1) members of an Australasian paediatric palliative care national reference group, (2) healthcare professionals associated with a local paediatric palliative care service, and (3) family members who were users of the same local service. Results: Through multi-phase consultation across participant groups, the draft question prompt list was refined progressively to 28 items, split across two booklets to allow end-of-life items to be provided separately, and reconceptualised as a discussion prompt list rather than a question prompt list. Conclusion: By involving representatives of major stakeholder groups, this study has facilitated the design of a prompt list suited to the circumstances of paediatric palliative care. Future research should trial the effectiveness of this resource. [ABSTRACT FROM AUTHOR]

Background: Home care of children with life-limiting diseases is extremely challenging for parents/family caregivers and their social environment. In order to gain new insights into the perspective of family caregivers, we employed digital Network Maps for the first time in the field of pediatric palliative care. Aim: To examine whether the use of Network Maps helps to identify and visualize significant members of the social support system and the quality of the relationship, as well as the main areas of life that are experienced as being supportive by each individual. Design: The design was an integrated mixed methods study. Creation of Network Maps was assessed in conjunction with qualitative interviews. In addition, participants gave an oral feedback on the Network Maps themselves. Setting/participants: Parents of patients supported by a Specialized Home Pediatric Palliative Care team were eligible for inclusion. Forty-five parents were enrolled in the study. Results: All mothers and fathers were able to generate their individual Network Map without problems. The composition of the support systems differed greatly, even between members of the same family. Parents named on average 11 supporting actors, mainly family members and health care professionals. Some relationships were perceived as helpful and stressful at the same time. Conclusion: Network Maps appear to be an appropriate tool for the collection, reconstruction, and assessment of the current support situation of parents of dying children. Further studies should examine the usefulness of Network Maps for the understanding of the caregivers' support needs and for the development of psychosocial interventional strategies by pediatric palliative care teams. [ABSTRACT FROM AUTHOR]

Background: The interest in outcome measurement in pediatric palliative care is rising. To date, the majority of studies investigating relevant outcomes of pediatric palliative care focus on children with cancer. Insight is lacking, however, about relevant outcome domains for children with severe neurological impairment and their families. Aim: The aim of this study was to identify meaningful outcome domains of pediatric palliative care for children with severe neurological impairment and their families. Design: A qualitative research design following a constructivist research paradigm was employed. Guided interviews were conducted with parents of children with life-limiting conditions and severe neurological impairment and professional caregivers. The data were analyzed using qualitative content analysis. Setting: Overall, 10 cooperating pediatric palliative care institutions across Germany (outpatient and inpatient settings) aided in the recruitment of eligible parents and professional caregivers. A total of 11 interviews with 14 parents and 17 interviews with 20 professional caregivers were conducted. Results: Six core outcome domains of pediatric palliative care for children with severe neurological impairment and their families were identified, namely (1) symptom control, (2) respite and support, (3) normalcy, (4) security, (5) empowerment, and (6) coping with the disease, each consisting of 1 to 13 individual aspects. Conclusion: As for other diagnostic groups, symptom control is a relevant outcome domain for children with severe neurological impairment. However, other outcome domains which focus on the whole family and take into account the long disease trajectory, such as respite and support, security, empowerment, and coping with the disease, are also crucial. [ABSTRACT FROM AUTHOR]

Background: Research ethics committees are commonly perceived as a 'barrier' to research involving seriously ill children. Researchers studying seriously ill children often feel that committees view their applications more harshly compared to applications for research with other populations. Whether or not this is the case in practice is unknown. Aim: The aim of this study was to explore committees' concerns, expectations and decisions for research applications involving seriously ill children submitted for review in the United Kingdom. Design: Content analysis of committee meeting minutes, decision letters and researcher response letters. Setting/participants: Chief investigators for National Institute of Health Research portfolio studies involving seriously ill children were contacted for permission to review their study documents. Results: Of the 77 applications included in this study, 57 received requests for revisions at first review. Committee expectations and concerns commonly related to participant information sheets, methodology, consent, recruitment or formatting. Changes were made to 53 of these studies, all of which were subsequently approved. Conclusion: Our findings suggest that committees review applications for research involving seriously ill children with the same scrutiny as applications for research with other populations. Yet, the perception that committees act as a barrier to this type of research persists. We suggest that this perception remains due to other factors including, but not limited to, the high levels of formatting or administrative revisions requested by committees or additional study requirements needed for research involving children, such as multiple versions of consent forms or participant information sheets. [ABSTRACT FROM AUTHOR]

Background: Multidrug resistant pathogens are a large-scale healthcare issue. In particular, children with life-limiting conditions have a significantly increased risk of multidrug resistant pathogen colonization. Official hygiene requirements recommend children, who are colonized with multidrug resistant pathogens, to be isolated. In the context of pediatric palliative care, such isolation adversely affects the aim of social participation. To overcome this challenge of conflicting interests on a pediatric palliative care inpatient unit, a hygiene concept for patients colonized with multidrug resistant pathogens, called PALLINI, was implemented. Aim: The aim of this study was to identify the nurses' attitudes and opinions toward PALLINI. Methods: Nurses (N = 14) from the pediatric palliative care unit were queried in guideline-oriented interviews. Interviews were analyzed qualitatively by means of content analysis. Results: The following four categories were identified: (1) safety, (2) effort, (3) quality of care, and (4) participation. All categories demonstrated ambivalence by nursing staff regarding PALLINI. Ambivalence arose from guaranteeing infection control versus noncompliance by the families, additional workload for patients with multidrug resistant pathogens versus lack of resources, impaired relationship with the parents versus enabling better care for the child, as well as enabling some limited contact versus the larger goal of genuine social participation. Despite this, nurses reported the importance of arranging everyday-life for the patients so that they experience as much social participation as possible. Conclusion: The implementation of a new hygiene concept is challenging. Despite positive reception of PALLINI from the nurses, ambivalence remained. Addressing these ambivalences may be critical to best implement the new hygiene concept. [ABSTRACT FROM AUTHOR]

Background: Children with serious illness who receive hospice care often interface with nurses who lack training, experience and comfort in the provision of paediatric palliative and hospice care. Hospice nurse preferences for paediatric-specific training are not well known. Aim: To describe the types of paediatric-specific training received and educational content preferred by hospice nurses. Design: Population-level dissemination of a cross-sectional survey with qualitative analysis of open-ended survey items. Setting/participants: Nurses from 71 community-based hospice organizations across 3 states completed the survey. Results: An open-ended response was provided by 278/551 (50.5%) survey respondents. A total of 55 respondents provided 58 descriptions of prior paediatric-specific training, including a formal 2-day course (n = 36; 65.5%), on-the-job education (n = 13, 23.6%), online training (n = 5, 9.1%), nursing school (n = 2, 3.6%) and paediatric advanced life support courses (n = 2, 3.6%). A total of 67 respondents described 74 hospice-led educational efforts, largely comprised of a 2-day course (n = 39; 54.2%) or provision of written materials (n = 11; 15.3%). A total of 189 respondents described 258 preferences for paediatric-specific training, with nearly half (n = 93; 49.2%) requesting 'any' or 'all' types of education and the remainder requesting education around medication use (n = 48; 25.4%), symptom assessment/management (n = 32; 16.9%), pain assessment/management (n = 28; 14.8), communication (n = 29; 15.3%) and psychosocial assessment/management (n = 28; 14.8). Conclusions: Hospice nurses self-report inadequate exposure to educational resources and programs, in conjunction with a strong desire for increased paediatric-specific training. Identification of targetable gaps should inform the development of educational resources, policies and other supportive interventions to improve delivery of care to children and families in the community. [ABSTRACT FROM AUTHOR]

Children with trisomy 18 that survive beyond the neonatal period have multiple congenital anomalies, neurodevelopmental disability, and high mortality rates. The experience of children with trisomy 18 who receive pediatric palliative care services is largely unknown. We conducted a retrospective review of children with trisomy 18 receiving pediatric palliative care services at both Boston Children's Hospital, USA and Great Ormond Street Hospital, UK from January 1, 2004 to January 1, 2015. Fifty‐eight children with trisomy 18 were referred to pediatric palliative care, 38 in the United Kingdom, 20 in the United States. Median age at referral was 19 days (2–89) in the United Kingdom, and 25 days (1–463) in the United States. Median length of time being followed by pediatric palliative care was 32 days (1–1,637) in the United Kingdom and 67 days (3–2,442) in the United States. The only significant difference in the two cohorts (p = .001) was in likelihood of receiving cardiac surgical intervention—37% in the United States, 0% the United Kingdom. Children with trisomy 18 receive pediatric palliative care services, with variable age at referral and for a variable length of time. Further research is needed to understand the experience of children with trisomy 18 and their families receiving pediatric palliative care services. [ABSTRACT FROM AUTHOR]

The article discusses research which investigated the administration of oral cannabis extracts to pediatric patients in palliative care. Topics explored include the selection of patients with life-limiting or terminal illnesses that would receive medical cannabinoids, the observed improvement in the symptoms reported such as pain and nausea, and the importance of compliance to medical guidance to prevent cases of cannabis overdoses.

Given the limited number of pediatric-specific palliative care programs, palliative care providers of all disciplines may be called on to care for infants, children, and adolescents with serious illness. This article provides a review of the unique components of pediatric palliative care, including key roles within an interdisciplinary team, pediatric developmental considerations, use of medical technology and complexities of symptom management in children with serious illness, hospice utilization, as well as pointers for discussions with families regarding a patient's quality of life and goals of care. [ABSTRACT FROM AUTHOR]

Background: There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe suboptimal care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a Train-the-Trainer' model. Methods/design: In this study we are using a pre- post-test design and an integrated knowledge translation approach to assess the impact of the educational roll-out in four areas: 1) self-assessed knowledge of health professionals; 2) knowledge dissemination outcomes; 3) practice change outcomes; and 4) quality of palliative care. The quality of palliative care will be assessed using data from three sources: a) parent and child surveys about symptoms, quality of life and care provided; b) health record reviews of deceased patients; and c) bereaved parent surveys about end-of-life and bereavement care. After being trained in EPEC®-Pediatrics, 'Master Facilitators' will train 'Regional Teams' affiliated with 16 pediatric oncology programs in Canada. Each team will consist of three to five health professionals representing oncology, palliative care, and the community. Each team member will complete online modules and attend one of two face-to-face conferences, where they will receive training and materials to teach the EPEC®-Pediatrics curriculum to 'End-Users' in their region. Regional Teams will also choose a Tailored Implementation of Practice Standards (TIPS) Kit to guide implementation of a quality improvement project in their region; support will be provided via quarterly meetings with Co-Leads and via a listserv and webinars with other teams. Discussion: Through this study we aim to raise the level of pediatric palliative care education amongst health care professionals in Canada. Our study will be a significant step forward in evaluation of the impact of EPEC®-Pediatrics both on dissemination outcomes and on care quality at a national level. Based on the anticipated success of our project we hope to expand the EPEC®-Pediatrics roll-out to health professionals who care for children with non-oncological life-threatening conditions. [ABSTRACT FROM AUTHOR]

Background: Awareness for pediatric palliative care in children with cancer increased in the last ten years in Germany. In this study we sought to determine whether this change in awareness led to improved palliative care outcomes in children dying due to cancer. Methods: In 2005 we interviewed a cohort of 48 bereaved parents who had a lost a child to cancer approximately five years earlier (2000 cohort), and in 2010 we interviewed another cohort of 48 parents who had lost a child due to cancer approximately five years before (2005 cohort). Children of the 2000 cohort were cared for by six specialized oncology departments in North-Rhine-Westphalia (NRW), Germany, and children of the 2005 cohort by 16 specialized pediatric oncology departments in NRW, Germany. Parents of both cohorts were interviewed using the Survey of Caring for Children with Cancer (SCCC). Results: The children of both parental cohorts were similar in terms of disease characteristics and sociodemographic variables. Children suffered in a very similar manner from core symptoms such as pain and dyspnea. However, symptom treatment increased for all symptoms. In case of treatment of anxiety the increase was statistically significant ( p=0.035). Location of care changed with almost three-quarters of the 2005 cohort receiving palliative home care, significantly more than in the 2000 cohort ( p=0.007). Additionally, fewer children of the 2005 cohort died in the intensive care unit. Conclusion: While the location of care during the end-of-life period shifted (from hospital to home), there remains substantial work to ease the suffering in children with cancer at end of life. [ABSTRACT FROM AUTHOR]

Background: Promoting resilience is an aspect of psychosocial care that affects patient and whole-family well-being. There is little consensus about how to define or promote resilience during and after pediatric cancer. Objectives: The aims of this study were (1) to review the resilience literature in pediatric cancer settings; (2) to qualitatively ascertain caregiver-reported perceptions of resilience; and (3) to develop an integrative model of fixed and mutable factors of resilience among family members of children with cancer, with the goal of enabling better study and promotion of resilience among pediatric cancer families. Methods: The study entailed qualitative analysis of small group interviews with eighteen bereaved parents and family members of children with cancer treated at Seattle Children's Hospital. Small-group interviews were conducted with members of each bereaved family. Participant statements were coded for thematic analysis. An integrative, comprehensive framework was then developed. Results: Caregivers' personal appraisals of the cancer experience and their child's legacy shape their definitions of resilience. Described factors of resilience include baseline characteristics (i.e., inherent traits, prior expectations of cancer), processes that evolve over time (i.e., coping strategies, social support, provider interactions), and psychosocial outcomes (i.e., post-traumatic growth and lack of psychological distress). These elements were used to develop a testable model of resilience among family members of children with cancer. Conclusions: Resilience is a complex construct that may be modifiable. Once validated, the proposed framework will not only serve as a model for clinicians, but may also facilitate the development of interventions aimed at promoting resilience in family members of children with cancer. [ABSTRACT FROM AUTHOR]

Background: U.S. children with life-limiting illness face barriers to accessing palliative care. In 2006, Massachusetts signed into law a statute providing for the creation and funding of the Pediatric Palliative Care Network (PPCN). This innovative, exclusively state-funded program provides comprehensive direct and consultative community-based pediatric palliative care services including: (1) pain and symptom management, (2) case management and assessment, (3) social services, counseling, and bereavement services, (4) volunteer support services, (5) respite services, and (6) complementary therapies. Provision of care is through a network of state-licensed hospice programs, and an array of professional and volunteer services. Objective: To describe Massachusetts' experience in implementing a novel pediatric palliative care program. Design: Enrollment and service trends were identified using Massachusetts Department of Public Health administrative data. Responses to a written family satisfaction survey provided to each family enrolled on PPCN are summarized. Results: In fiscal year 2010, PPCN partnered with 11 hospice programs to provide services to 227 children with life-limiting illness. A total of $680,850 (86.7%) of state funding went to direct contract funds for hospices. Admitting diagnoses included cancer (30%), chromosomal abnormalities (17%), neurodegenerative disorders (15%), and other (38%). There were 11 deaths, 100% of which occurred in the family's requested location. Median length of stay on service prior to death was 233 days. Families most commonly implemented psychosocial and case management services, followed by complementary therapies, and volunteer services. Conclusions: Successful implementation of a statewide pediatric palliative care program as modeled in Massachusetts is highly feasible at relatively low cost. [ABSTRACT FROM AUTHOR]

BACKGROUND AND OBJECTIVES: Many patients receiving pediatric palliative care (PPC) present with surgically treatable problems. The role of surgery in the care of these patients, however, has not yet been defined. We conducted a cohort study of children receiving PPC to assess the incidence, type, and likely purpose of surgical interventions performed after the initiation of PPC. METHODS: We performed a cohort analysis of surgical interventions performed on children enrolled in an ongoing, multicenter, prospective cohort study. Patients aged <30 years receiving PPC services were eligible for inclusion in the study. Analyses included descriptive and comparative statistics, as well as logistic regression models. RESULTS: After initiation of PPC, 81.1% (n=5 488) of patients had undergone at least 1 surgical intervention (range, 1-71) with a median of 4 interventions (interquartile range, 1-9). The most frequent surgical interventions were feeding tubes, endoscopic biopsy, tracheostomy, bone marrow biopsy, tunneled catheters, bronchoscopy, and chest tube placement, followed by sternum closure, abdominal closure, atrial and ventricular septal defect repairs, and heart transplantation. Children who underwent surgical interventions were statistically less likely to die while receiving PPC (29% vs 40%, P < .03). CONCLUSIONS: Most children receiving PPC services undergo at least 1 surgical intervention, and many undergo numerous interventions. Undergoing intervention is not futile because surgical intervention is associated with longer survival. Various patient populations that are more likely, as well as less likely, to undergo surgical intervention warrant specific focus. [ABSTRACT FROM AUTHOR]

The article discusses disagreements between families and medical teams about the care of children with serious illnesses. Topics include the importance of skilled communication and awareness of healthcare relationships and decision making, barriers to skilled communication by pediatric subspecialists, and educational intervention aimed at enhancing pediatric palliative care (PPC).

The authors reflect on the significance of pediatric palliative care in providing spiritual and bereavement care to families with various cases such as early miscarriage, peripartum injury, and postnatal disease progression. They explain the challenges faced by the specialized medical care amid cultural practices, religious beliefs, and community norms. They also emphasize the contribution of genetic counselors, obstetricians, and labor and delivery nurses in providing quality and outcomes.

Care for children as they near the end of life is difficult and very complex. More difficult still are the decisions regarding what interventions are and are not indicated during these trying times. Occasionally, families of children who are nearing the end of life disagree with the assessment of the medical team regarding these interventions. In rare cases, the medical team can be moved to enact a do not attempt resuscitation order against the wishes of the patient's parents. This article presents one such illustrative case and discusses the ethical issues relevant to such challenging clinical scenarios. The authors posit that such a unilateral do not attempt resuscitation order is only appropriate in very limited circumstances in pediatric care. Instead, focus should be placed on open discussion between parents and members of the clinical team, shared decision making, and maintenance of the clinician-parent relationship while simultaneously supporting members of the clinical team who express discomfort with parental decisions. The authors propose an alternative framework for approaching such a conflict based on clinician-parent collaboration and open communication. [ABSTRACT FROM AUTHOR]

Hospital-based pediatric palliative care (PPC) may help optimize referrals to community-based hospice and home-based palliative care (HBPC) for children with serious illness, yet little is known about their referral practices. To describe community-based program referrals from a PPC team, identifying factors associated with referral type, and potential misalignment between patient needs and referral received. Chart abstraction of patients seen in 2017 by the PPC team of a large, urban children's hospital, followed for at least 6 months or until death, including clinical and demographic characteristics, and referrals to hospice and HBPC. Of the 302 study-eligible patients, 25% died during the hospitalization of the first 2017 visit. Of the remaining 228 patients, 42 (18.4%) were referred to HBPC and 58 (25.4%) to hospice. Excluding patients referred to hospice care, only one-third with demographic eligibility were referred to HBPC; those seen in the ICU were least likely to be referred. Over half of the 58 patients referred to hospice died within the study period (n = 34, 58.6%); descendants were more likely to have cancer (P = 0.002) and less likely to have a neurologic (P = 0.021) diagnosis. Despite demographic eligibility, a minority of patients seen by a hospital-based PPC team received referrals for hospice or HBPC. Children discharged from an ICU and those with neurologic conditions may be at higher risk of missing referrals best aligned with their needs. Future research should identify and address causes of referral misalignment. Advocacy for programs adaptable to patients' changing needs may also be needed. [ABSTRACT FROM AUTHOR]

Context: Children, adolescents and young adults with cancer continue to experience significant symptom suffering throughout their illness.Objectives: To identify barriers to effective symptom management in pediatric advanced cancer.Methods: Using a qualitative multiple case study we refined the Pediatric Quality of Life and Evaluation of Symptoms Technology Response to the Pediatric Oncology Symptom Experience (PediQUEST Response), a pediatric palliative care (PPC) intervention. Twenty-three children aged ≥2 years old with advanced cancer, their parents and primary and PPC clinicians were enrolled. Children and parents reported symptoms weekly over 4-months using the Memorial Symptom Assessment Scale (MSAS) administered by an electronic system (PediQUEST). When symptom distress episodes (SDEs) were reported (MSAS symptom score ≥33) we studied symptom management processes using interviews of family members/clinicians, and chart abstractions. Data were coded and analyzed using grounded theory and NVivo software.Results: Children reported 308 SDEs within 193 surveys and parents 529 SDEs in 165 surveys administered. We conducted 85 and 88 interviews with families and clinicians respectively. While we confirmed the presence of known barriers, we identified a prominent theme, that symptoms were "normalized." Patients, parents, and all clinicians, including PPC specialists, got accustomed to high symptom burden and lacked expectations that distress could be alleviated. We defined "normalization of symptoms," as the process by which symptom related suffering is appraised as unavoidable.Conclusion: Normalization of symptoms is a pervasive barrier enacted by all involved in caring for children with advanced cancer. Strategies to overcome normalization are critical to ease child distress. [ABSTRACT FROM AUTHOR]

Content: Parents who experience the death of a child have significantly higher rates of psychological distress compared to non-bereaved parents. The effectiveness of current bereavement supports, and ideal types and timing of future supportive interventions aimed at improving negative sequalae are relatively unknown.Objectives: This interview-based study explored the early bereavement needs of 15 parents of children who died from cancer, including the bereavement support received, perceived barriers to support, and desired additional supportive interventions.Methods: Parents who previously participated in a survey-based study examining the early grief experience were invited to partake in a semi-structured interview. Interviews focused on examining bereavement support for parents within the first three years following the child's death and barriers to adequate support; transcribed interviews underwent thematic analysis.Results: Fifteen parents completed the interview; 14 parents (93%) were White and non-Hispanic, five were male. Parents participated on average 19 months (range 12-34) following their child's death. Parents identified numerous supports that were and were not helpful. Augmented informative materials, professional, organized, and religious/spiritual support, and connections with others were identified as key elements in a supportive intervention.Conclusion: Bereaved parents identified many supportive needs, most of which already exist at the community and institution level. Suggestions outlined by parents may provide a useful framework for developing novel supportive interventions and ways to tailor strategies to support bereaved parents. Researchers must continue to seek feedback from bereaved parents and families about their met and unmet needs and use this information to design early supportive bereavement interventions. [ABSTRACT FROM AUTHOR]

Context: Parents desire more opportunities for advance care planning (ACP), however, large-scale adoption of ACP for seriously ill children remains unrealized. Little is known about current approaches to ACP and strategies to circumvent existing barriers to ACP provision.Objective: To explore multidisciplinary clinician perceptions about perceived barriers and strategies to improve ACP provision.Design: Qualitative study including focus groups conducted with multidisciplinary clinicians at two centers from December 2018-April 2019. Iterative multi-stage thematic analyses were utilized to identify key contexts and themes pertaining to current approaches to ACP, as well as clinician perspectives on ACP barriers and improvement strategies.Results: Thirty-five clinicians (physicians, nurses, and psychosocial clinicians) participated in identifying both clinician and perceived patient and family barriers to initiating and engaging in ACP discussions, including mixed messaging, lack of knowledge of patient and family goals, prognostic uncertainty, poor prognostic awareness, unstandardized documentation, and family dynamics. Clinicians also identified strategies to overcome these barriers and to facilitate ACP discussions, including enhancing multidisciplinary communication, creation of a shared ACP communication framework, and formal training in ACP communication to normalize ACP throughout a child's disease trajectory.Conclusion: Despite ubiquitous recognition of the importance of ACP communication, various clinician- and parent-level barriers were identified which impede ACP in children with serious illness and their families. Improvement strategies should focus on formal clinician training on how to conduct and document longitudinal ACP discussions to ensure care is aligned with family goals and values. [ABSTRACT FROM AUTHOR]

Context: There are no validated Spanish tools to assess symptom burden in pediatric cancer. The Pediatric Memorial Symptom Assessment Scale (Pediatric-MSAS) is an English valid multidimensional and comprehensive instrument.Objectives: To validate Pediatric-MSAS-Spanish (MSAS-Child, MSAS-Teen, and MSAS-Caregiver versions) in patients with cancer treated in two public hospitals in Buenos Aires, Argentina.Methods: Cross-sectional study, classical psychometric theory. We recruited a convenience sample of 148 caregivers of children ≥ two years, 51 young children (seven to 12 years), and 48 adolescents (≥13 years). We assessed feasibility, comprehensibility, internal consistency, and convergent and known-groups validity.Results: Pediatric-MSAS-Spanish was feasible, acceptable, and comprehensible. Reliability of MSAS-total and subscale scores was satisfactory (Cronbach alpha: 0.90, 0.89, 0.71, respectively, for caregiver, teen, and child MSAS-total score). MSAS-total caregiver, teen, and child scores met a priori criteria for convergent validity correlating with Pediatric Quality of Life Inventory total scores (Spearman correlation (rs) = -0.59, -0.66, and -0.32, respectively) and visual -analogue well-being scores (rs = -0.63, -0.46, and -0.4, respectively). Caregiver-teen correlation was strong for total (rs = 0.78) and physical (rs = 0.85) scores, and moderate for global distress index (rs = 0.64) and psychological (rs = 0.45) scores. MSAS-total caregiver-child correlation was moderate (rs = 0.30) and Kappa analysis showed poor agreement. All MSAS-Caregiver scores and MSAS-Teen total and physical scores differentiated inpatients/outpatients and patients on/off-treatment, while MSAS-Teen psychological and global distress index subscales or MSAS-Child scores did not.Conclusion: Pediatric-MSAS-Spanish is feasible and reliable for assessing symptom burden in children with cancer. Validity of MSAS-Caregiver and MSAS-Teen was largely supported. Further work on MSAS-Child is warranted. [ABSTRACT FROM AUTHOR]

OBJECTIVES: With evidence of benefits of pediatric palliative care (PPC) integration, we sought to characterize subspecialty PPC referral patterns and end of life (EOL) care in pediatric advanced heart disease (AHD). METHODS: In this retrospective cohort study, we compared inpatient pediatric (,21 years) deaths due to AHD in 2 separate 3-year epochs: 2007-2009 (early) and 2015--2018 (late). Demographics, disease burden, medical interventions, mode of death, and hospital charges were evaluated for temporal changes and PPC influence. RESULTS: Of 3409 early-epoch admissions, there were 110 deaths; the late epoch had 99 deaths in 4032 admissions. In the early epoch, 45 patients (1.3% admissions, 17% deaths) were referred for PPC, compared with 146 late-epoch patients (3.6% admissions, 58% deaths). Most deaths (186 [89%]) occurred in the cardiac ICU after discontinuation of life-sustaining therapy (138 [66%]). Medical therapies included ventilation (189 [90%]), inotropes (184 [88%]), cardiopulmonary resuscitation (68 [33%]), or mechanical circulatory support (67 [32%]), with no temporal difference observed. PPC involvement was associated with decreased mechanical circulatory support, ventilation, inotropes, or cardiopulmonary resuscitation at EOL, and children were more likely to be awake and be receiving enteral feeds. PPC involvement increased advance care planning, with lower hospital charges on day of death and 7 days before (respective differences $5058 [P = .02] and $25 634 [P = .02]). CONCLUSIONS: Pediatric AHD deaths are associated with high medical intensity; however, children with PPC consultation experienced substantially less invasive interventions at EOL. Further study is warranted to explore these findings and how palliative care principles can be better integrated into care. [ABSTRACT FROM AUTHOR]