Integration Of Pediatric Palliative Care Research Articles

Chinese Providers' Perspectives on Early Integration of Palliative Care in Pediatric Oncology: A Mixed-Methods Study.

Internationally, early integration of palliative care in pediatric oncology has been widely recognized. However, little is known about the perspective of Chinese providers in this regard. The aim of this study was to explore the perspective of Chinese providers on the early integration of palliative care in pediatric oncology. This was a convergent mixed-methods study with a survey among 141 Chinese providers (101 nurses, 38 oncologists, and 2 social workers) and 12 individual interviews (5 oncologists, 5 nurses, and 2 social workers). Three categories existed by comparison and merging of quantitative and qualitative findings: (1) attitudes toward early integration of pediatric palliative care: 75% of the participants endorsed early integration because it would bring benefits to patients and their families-participants had concerns about misunderstandings of palliative care among other stakeholders; (2) patient-provider interactions relating to early integration: participants held contradictory views toward the impact on and influencers of early integration regarding patient-provider interactions; and (3) participants suggested a system to support early integration by addressing parents' misconceptions and providers' training, and institutional facilitation. Chinese pediatric oncology providers generally exhibit a reserved willingness toward the early integration of palliative care. They agree that palliative care would be beneficial but have concerns about providing structural support and addressing cultural influencers. Findings of this study emphasize the significance of convening stakeholders and establishing a pediatric palliative care-friendly system in a developing country, particularly by addressing structural support, resource allocation, clarified responsibilities, and capacity building.

Improving Prenatal Palliative Care Consultation Using Diagnostic Trigger Criteria

BackgroundThree percent of pregnancies are complicated by congenital anomalies. Prenatal integration of pediatric palliative care (PPC) may be hindered by non-standardized PPC referral processes. This quality improvement (QI) project aimed to improve prenatal PPC consultation using a diagnostic trigger list. MeasuresMain outcome measure was the percentage of prenatal PPC consults completed based on diagnostic trigger list eligibility. Balancing measures included stakeholder perspectives on PPC consults and products. InterventionInterventions included creation and implementation of a diagnostic trigger list for prenatal PPC consultation, educational initiatives with stakeholders, and iterative modifications of our prenatal consultation process. OutcomesInterventions increased consultation rates ≥80% during the first six months of QI implementation (baseline vs. post-interventions) although this increase was not consistently sustained over a 12-month period. Conclusions/Lessons LearnedDiagnostic trigger lists improve initial rates of prenatal PPC consultation and additional interventions are likely needed to sustain this increase.

Early and often: Promoting early integration of pediatric palliative care for seriously ill children with cancer

Pediatric palliative care, despite substantial overlap with its adult counterpart, is also distinct in some ways. Serious illness and comorbidities are less common in children, for whom there is a stronger presumption toward aggressive treatment. This, along with impressive cure rates for pediatric cancer, can help explain why children typically survive for a longer period of time following initial palliative care consultation. Though many of the studies demonstrating benefit of integration of palliative care early in the course of the disease for seriously ill patients rather than near or at end-of-life were conducted in adults, similar findings have been documented for children with serious illness. Several barriers to early integration exist, however, including misperceptions that palliative care constitutes "giving up" and concerns about potential role confusion with the primary team. By directly addressing these misperceptions and challenges, it is possible for palliative care and oncology to work in constructive partnerships that will benefit children with cancer and their families.

Physician Perceptions of and Barriers to Pediatric Palliative Care for Children With Cancer in Brazil.

Early integration of pediatric palliative care (PPC) for children with cancer is critical to improving the quality of life of both the patient and family. Understanding physician perceptions of palliative care and perceived barriers to early integration is necessary to develop PPC in Brazil. The Assessing Doctors' Attitudes on Palliative Treatment survey was modified for use in Brazil. The survey was open from January 2022 to June 2022 and distributed to physicians of all specialties from participating institutions who treat children with cancer. Statistical analysis was complemented by qualitative analysis of open-ended responses. A total of 272 respondents participated. Most respondents reported access to PPC experts for consultation (77.2%) and 34.5% indicated previous palliative care training. Physician knowledge of PPC was generally aligned with WHO guidance (median alignment, 93.0%; range, 80.5%-98.2%). However, about half (53.3%) felt comfortable addressing physical needs of patients receiving PPC, 35.3% addressing emotional needs, 25.8% addressing spiritual needs, and 33.5% addressing grief and bereavement needs. Most respondents (65.4%) felt palliative care should be involved from diagnosis, but only 10.3% stated that this occurred in their setting. The most important barriers identified were physician discomfort (89.0%), limited physician knowledge (88.6%), and lack of home-based services (83.8%). Despite a strong understanding of the role of palliative care, physicians in Brazil reported low confidence delivering PPC to children with cancer. Additionally, physicians generally believed that PPC should be integrated earlier in the disease trajectory of children with cancer. This work will direct educational and capacity building initiatives to ensure greater access to high-quality PPC for children with cancer in Brazil to address patient and family suffering.

Addressing 10 Myths About Pediatric Palliative Care.

With advances in biomedical sciences, a growing number of conditions affecting children have evolved from being considered life-limiting to almost chronic diseases. However, improvements in survival rates often come at a cost of increased medical complexity and lengthy hospitalizations, which can be associated with a poorer quality of life. This is where pediatric palliative care (PPC) can play a significant role. PPC is a specialty of healthcare that focuses on the prevention and relief of suffering in children with serious conditions. Unfortunately, despite the well-identified need for PPC services across pediatric specialties, multiple misconceptions persist. Common myths about palliative care are identified and deconstructed in light of the most recent evidenced-based references in the field to provide guidance to healthcare providers to address these. PPC is often associated with end-of-life care, loss of hope, and cancer. Some healthcare providers and parents also believe that information like diagnosis should be withheld from children for their emotional protection. These examples of misconceptions hinder the integration of pediatric palliative care and its additional layer of support and clinical expertise. PPC providers have advanced communication skills, are able to instill hope in the face of uncertainty, are trained to initiate and implement individualized pain and symptom management plans, and understand how to improve the quality of life in children with serious illnesses. Improved awareness about the scope of PPC is needed to ensure that children benefit from the maximum expertise and support throughout their complex health trajectories.

110 - Early Integration of Pediatric Palliative Care in Pediatric Hematopoietic Stem Cell Transplant Patients

110 - Early Integration of Pediatric Palliative Care in Pediatric Hematopoietic Stem Cell Transplant Patients

Challenges in establishing optimal pediatric palliative care at the university hospital in Slovenia

The integration of pediatric palliative care (PPC) should become a standard of care for all children with life-limiting and life-threatening illnesses. There are many barriers and misperceptions in pediatrics which hinder the early implementation of PPC. The aim of the study was to design starting points for the establishment of accessible PPC with early involvement of patients in a tertiary-level children’s hospital. An intervention, presentation, and discussion on PPC were offered by the hospital PPC team to all employees in the hospital. A total of 237 participants (physicians 30.4%, nurses 49.4%, psychologists 8.4%, and others) completed a questionnaire before and after the intervention. The personnel’s knowledge, self-assessment of their ability to perform PPC, attitude to participate in PPC, and their awareness and understanding of the need for PPC were evaluated. The results were analyzed using Pandas and SciPy libraries in Python. The knowledge, awareness, and attitude of the physicians, nurses, and other professionals improved significantly after the intervention. However, the self-assessment of their ability to perform PPC did not increase. Previous experience with the death of a patient has proven to be a stimulus for self-initiative in acquiring knowledge in PPC and was linked with a better attitude and higher awareness of the need for PPC.Conclusions: More education and practical work tailored to the different professional profiles are needed, with adjustments for specific subspecialist areas, especially where patients could be included in early PPC. Although additional studies are needed, we identified the main directions for the further implementation of PPC in clinical practice in our setting.What is Known:• Every child and adolescent living with a life-limiting or life-threatening condition should receive pediatric palliative care (PPC) to alleviate suffering and enhance their quality of life. There exists a plethora of recognized barriers to the effective implementation of palliative care, specifically PPC. These barriers are often connected to the emotional burden of requesting PPC. Early identification and inclusion of patients is important for improving PPC in hospital settings. Finding strategies to overcome the barriers is crucial for improving the well-being and improving the quality of life of the patients and their families.• Early identification is only possible with a high level of knowledge and understanding of PPC among healthcare professionals. In a hospital setting where there are interdisciplinary palliative care teams, the inclusion is still only possible if all staff are capable of recognizing patients in need of PPC and are willing to start the process. Since most healthcare education systems only recently included PC into the healthcare curriculum, most of the professionals currently working in hospitals are only educated to the extent of self-initiative.What is New:• To bridge the existing gap in knowledge, the hospital PC team organized an intervention, presentation, and discussion on PPC, which was offered to all employees in the hospital who are in contact with patients. The personnel’s knowledge, self-assessment of their ability to perform PPC, attitude to participate in PPC, and their awareness and understanding of the need for PPC were evaluated. These four categories have not been tested together before. The knowledge, awareness, and attitude of the physicians, nurses, and other professionals improved significantly after the intervention. All the profiles that work together in a team were evaluated simultaneously for the first time.• The self-assessment of their ability to perform PPC did not increase—in fact, it decreased. This was unexpected, as existing literature establishes a link between education and quality of PC. Previous experience with the death of a patient has proven to be a stimulus for self-initiative in acquiring knowledge in PPC and was linked with a better attitude and higher awareness of the need for PPC. We re-established the importance of education and practical work tailored to the different professional profiles, with adjustments for specific subspecialist areas, especially where patients could be included in early PPC. Although additional studies are needed, we identified the main directions for the further implementation of PPC in clinical practice in our setting.

Ideal vs Actual Timing of Palliative Care Integration for Children With Cancer in Latin America

Early integration of pediatric palliative care (PPC) for children with cancer is critical for the quality of life of both patient and family. To improve access to PPC in resource-limited settings, barriers to early integration must be understood. To evaluate the ideal vs actual timing of PPC integration for children with cancer and to uncover barriers to early integration identified by physicians in Latin America. The Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey was distributed electronically from August 1, 2020, to January 31, 2021, to physicians who treat children with cancer in 17 countries in Latin America. The ADAPT survey queried for understanding of ideal vs actual timing of PPC for children with cancer and for identification of barriers to PPC integration. Descriptive statistics were used to summarize the data. For secondary analyses, a comparison of the associations of previous palliative care training with physician specialty was performed using the Pearson χ2 test or the Fisher exact test. The McNemar test was used to assess responses regarding the actual vs ideal timing of PPC consultation. Analysis of variance was used to compare mean values for perceived barriers by country income level. Answers to open-ended questions were analyzed qualitatively. A total of 831 physicians (578 women [69.6%]; 275 physicians [33.1%] aged <35 years and 556 physicians [66.9%] aged ≥35 years) from 17 countries participated, with an overall response rate of 37.9% (831 of 2193) and a median country response rate of 51.4% (range, 22.2%-88.9%). Most respondents (572 [68.8%]) said that PPC should be involved from diagnosis, but only 117 (14.1%) stated that this occurred at their institution (P < .001). The most significantly ranked barriers to PPC were lack of home-based services (713 [85.8%]), personnel (654 [78.7%]), and knowledge about PPC (693 [83.4%]), along with physician (676 [81.3%]) and family (603 [72.6%]) discomfort about PPC involvement. In addition, these barriers were rated as more important in lower-middle income countries compared with upper-middle income countries and high-income countries. This study highlights the discrepancy between ideal and actual timing of PPC for children with cancer and barriers to early PPC integration in Latin America. Interventions addressing access to PPC resources, didactic training, and clinical education (with a particular focus on equitable access to basic resources and support) are critical to improve the timing and quality of PPC in the region.

Challenges of paediatric palliative care in Romania: a focus groups study

BackgroundThe availability of palliative care facilities for children vary considerably among the European member states. In Romania, a country where health expenditure is among the lowest in Europe, palliative care has been mainly provided by charitable organizations. Despite the high number of children needing palliative care, there is scant literature and research available on paediatric palliative care in Romania. The study explores the viewpoints of various paediatric oncology providers with regard to paediatric palliative care provision in Romania.MethodsFour mixed focus groups were conducted at four university-affiliated paediatric oncology centres located in three distinct Romanian regions (Bucuresti-llfov, Nord-Est and Nord-Vest). The focus groups were analyzed using thematic coding.ResultsFor many healthcare professionals, emotional burden inherent to the profession; unhealthy work-life balance and understaffing were among the biggest barriers to the successful integration of pediatric palliative care. The lack of staff was attributed to a shortage of financial resources, and to the persisting cultural stigma surrounding palliative care and oncology. Also political turmoil was identified as an important obstacle to palliative care implementation.ConclusionSignificant barriers persist limiting the broader implementation of pediatric palliative care in Romania. In order to render palliative care in pediatric oncology more sustainable, more attention should be paid to the mental health care of healthcare professionals working in this field, to the development of mobile palliative care services and to the emigration of skilled medical staff.

Interdisciplinary clinician perspectives on an embedded palliative oncology model in pediatric cancer care.

9 Background: Integration of palliative care into cancer care is recognized as best practice by international oncology and pediatrics organizations. However, optimal strategies for integration of pediatric palliative care (PPC) within cancer care remain understudied. While the majority of PPC provision for cancer patients occurs through subspeciality consultation, growing evidence suggests that models embedding PPC within cancer care have the potential to improve quality of care. Embedded models rely on partnerships with multidisciplinary clinicians, whose perspectives regarding this model are not well known. Methods: We conducted 25 focus groups with 175 clinicians in an academic pediatric cancer center, with groups stratified by discipline (physicians, advance practice providers (APPs), nurses, psychosocial providers) and by care team (hematologic malignancy, bone marrow transplant, solid tumor, brain tumor). Focus groups were led by trained research facilitators and audio-recorded for subsequent targeted content analysis to identify clinician perspectives regarding embedded PPC models. Results: Across 4 physician, 5 APP, 12 nurse, and 4 psychosocial focus groups, 25 physicians, 30 APPs, 71 nurses, and 49 psychosocial providers participated, respectively. When asked to describe features of an “ideal” PPC model, physicians, APPs, and nurses predominantly discussed care delivery and identified early integration of PPC into cancer care as a core feature of an ideal model. Physicians, nurses, and psychosocial providers also emphasized the importance of having a formalized, structured care model. The need for collaboration was the dominant theme for psychosocial providers. Clinicians in all disciplines identified potential benefits from an embedded model, including access to PPC across care settings, normalization of PPC integration, and emphasis on collaboration, teamwork, communication, and earlier PPC involvement. Physicians, APPs, and nurses anticipated similar challenges with an embedded model, including possible reticence of oncology providers and inadequate PPC staffing. Nurses, APPs, and psychosocial providers also voiced concern about potential lack of clarity in delegation of roles and responsibilities between PPC and oncology providers. Conclusions: Pediatric oncology multidisciplinary providers recognize the potential value of an embedded model for integration of PPC in the care of children with cancer. Though providers at times identified similar themes with respect to ideal PPC provision and the benefits and challenges to an embedded model, some identified priorities varied by discipline. These findings highlight the importance of integrating varied interdisciplinary perspectives when developing an embedded care model to align with priorities of diverse pediatric cancer stakeholders.

Organizational and individual barriers and facilitators to the integration of pediatric palliative care for children: A grounded theory study

Background: Pediatric palliative care has established benefits for children with cancer and their families. Overcoming organizational and healthcare provider barriers have been demonstrated as central for the provision of palliative care in pediatric oncology. A deeper understanding is needed of the influence of these barriers and the interactions between them, specifically in primary palliative care in hospital settings. Aim: To identify the organizational and healthcare provider barriers to the provision of primary pediatric palliative care. Design: This study utilized the grounded theory method. Semi-structured interviews were conducted and analyzed line by line, using NVivo software. Setting/participants: Forty-six pediatric oncologists, nurses, psychosocial team members, and other healthcare providers from six academic hospital centers participated in the research. Results: Organizational and healthcare provider factors were identified, each of which acted as both a barrier and facilitator to the provision of pediatric palliative care. Organizational barriers included lack of resources and management. Facilitators included external resources, resource management, and a palliative care center within the hospital. Individual barriers included attitudes toward palliative care among pediatric oncologists, pediatric oncologists’ personalities, and the emotional burden of providing palliative care. Facilitators include dedication and commitment, initiative, and sense of meaning. Provider facilitators for palliative care had a buffering effect on organizational barriers. Conclusion: Organizational and healthcare provider factors influence the quality and quantity of palliative care given to children and their families. This finding has implications on interventions structured to promote primary palliative care for children, especially in healthcare systems and situations where resources are limited.

Adding Life to Their Years: The Current State of Pediatric Palliative Care in CKD.

Despite continued advances in medical treatment, pediatric CKD remains an unremitting, burdensome condition characterized by decreased quality of life and earlier death. These burdens underscore the need for integration of pediatric palliative care (PPC) into nephrology practice. PPC is an evolving field that strives to (1) relieve physical, psychologic, social, practical, and existential suffering; (2) improve quality of life; (3) facilitate decision making; and (4) assist with care coordination in children with life-threatening or life-shortening conditions. Integration of palliative care into routine care has already begun for adults with kidney disease and children with other chronic diseases; however, similar integration has not occurred in pediatric nephrology. This review serves to provide a comprehensive definition of PPC, highlight the unmet need in pediatric nephrology and current integration efforts, discuss the state of palliative care in adult nephrology and analogous chronic pediatric disease states, and introduce future opportunities for study.

Assessment of physician perceptions of pediatric palliative care for children with cancer in Latin America.

10053 Background: While great strides have transpired in pediatric cancer management in high-income countries (HICs), more than 80% of all children with cancer live in low-and middle-income countries (LMICs),where fewer than 20% will be cured. The World Health Organization (WHO) has stated that early integration of palliative care is an ethical responsibility in the management of children with life-limiting illness. While structural barriers impact the ability to deliver pediatric palliative care (PPC), underlying stigma also prevents early integration of PPC. Methods: The Assessing Doctor’s Attitudes on Palliative Treatment (ADAPT) survey was created for physicians of all specialties who care for children with cancer, initially used in Eurasia. Survey questions evaluated provider perceptions on timing of palliative care integration, scope of palliative treatment, physician responsibility, and ethical issues. This survey was adapted for use in Latin America, including translation to Spanish and reviewed by regional palliative care specialists for syntax, comprehension, and cultural relevance. The survey was then distributed to physicians treating children with cancer in the region. To assess provider’s perspectives on palliative care, we used fifteen statements from the WHO 2018 guidelines, describing general palliative care principles. Results are reported as percent of alignment with guidelines. Results: A total of 1,039 participants from 16 countries in Latin America completed the survey, with a median country response rate of 66% (range 26%-100%). Thirty-six specialties were represented with 34% general pediatricians and 23% pediatric hematologist/oncologists. The majority (59%) had received no PPC training and 37% had no access to PPC experts for consultation in their practice setting. On average, provider’s perspectives on PPC were aligned with the WHO guidelines (81% alignment, range 53%-96%). However, almost half (42%) felt that the integration of pediatric palliative occurred too late in the course of treatment. Additionally, less than half (47%) of respondents felt comfortable addressing the physical symptoms of their patients, 33% felt comfortable addressing emotional symptoms, and only 26% felt comfortable addressing grief and bereavement for the patient’s family. The most common barriers identified were a lack of home-based services (87%), a lack of physician knowledge on the role of PPC (84%), and physician discomfort in discussing palliative care with families (81%). Nearly all (95%) wanted more training in PPC. Conclusions: Most physicians who completed the survey were not confident in providing symptomatic and supportive care for their patients and families. This study will guide targeted interventions for education in PPC for physicians in Latin America as well as interventions to address barriers which impede earlier palliative care integration in the region.

Barriers to Palliative Care in Pediatric Oncology in Switzerland: A Focus Group Study

Introduction: For children with cancer, early integration of pediatric palliative care in conjunction with curative treatments is recommended. In Switzerland, pediatric palliative care is mostly provided by an interdisciplinary primary oncology team that is mainly composed of nurses. However, only a small fraction of children receive pediatric palliative care and only a minority of them in a timely manner. The main aim was to identify barriers to the provision of pediatric palliative care in Swiss pediatric oncology. Method: This qualitative study consisted of five focus groups. In total, 29 pediatric oncology providers participated (13 nurses, 11 physicians, 4 psycho-oncologists, 1 social worker). Data were analyzed employing applied thematic analysis. Results: Analysis revealed eleven barriers: lack of financial resources, lack of prejob education regarding pediatric palliative care, lack of awareness in politics and policy making, absence of a well-established nationwide bridging care system, insufficient psychosocial and professional supervision for staff, understaffing, inadequate infrastructure of hospitals, asymmetry of factual and emotional knowledge between parents and providers, cultural aspects, irrational parental hopes, and "the unspoken." Discussion: Awareness should be raised for pediatric palliative care (in particular in demarcation from palliative care in adults) among politics and policy makers which could lead to increased financial resources that, in turn, could be used to improve bridging care, hospital's infrastructure, and team support. More flexibility for care determining factors is needed, for example, with respect to convening team meetings, short-termed staffing, and reimbursement at the interface between inpatient and outpatient services.

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

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

Role of Child Life Specialists in Pediatric Palliative Care

Role of Child Life Specialists in Pediatric Palliative Care

Integration of Pediatric Palliative Care in Children with Cancer: A Systematic Review

In Colombia, cancer is the second cause of mortality in children. The city of Santiago de Cali has one of the biggest Cancer Infant Units in the country, but currently the integration of Pediatric Palliative Care (PPC) is done at the end of life. It is necessary to carry out a systematic review that supports the creation of a program of PPC that is integrated from the moment of the diagnosis of cancer. To compare an early vs late integration of the Palliative care team in children with cancer, establish the viability of the program and describe the acceptance from the patients, family and oncologist when PPC is introduced at the same time as curative treatment. Systematic review. PRISMA methodology. Four databases were searched. English and Spanish articles published between 2007 and 2017 were included. The search terms include key words and terms MeSH: intervention, palliative care, cancer, pediatric oncology. Descriptive statistics and narrative synthesis are used to summarize the findings. 252 studies were identified. Filters were used as: Access to the complete text, repeat articles, publication between 2007 and 2017, Spanish and English language. 25 articles were revised in total, of different methodologies like controlled clinical trials, descriptive, and systematic reviews. 20 articles were included for discussion. The viability of establishing CP programs that intervene early in patients diagnosed with cancer is confirmed. This model of attention integrated into the curative treatment, represents a positive impact in the control of symptoms, improvement of the quality of life, improvement of attention at the end of life, decrease of invasive end-of-life interventions, among others.

High Prevalence of Physical and Psychological Distress among Children with Cancer: A Call for Early Integration of Pediatric Palliative Care

High Prevalence of Physical and Psychological Distress among Children with Cancer: A Call for Early Integration of Pediatric Palliative Care

High Prevalence of Physical and Psychological Distress among Children with Cancer: A Call for Early Integration of Pediatric Palliative Care

Rationale: Data suggests that childhood cancer related symptoms are under reported and that routine symptom screening improves quality of life. Recent studies in adults show that patients who receive palliative care along with standard treatment for advanced cancer report having better symptom control and quality of life than patients who do not. Aim: To measure physical and psychological symptom prevalence among children with cancer, and the degree of distress caused by such symptoms. Method: Memorial Symptom Assessment Scales for Children (MSAS) were obtained via patient self-report for …

Perceptions of barriers and facilitators to early integration of pediatric palliative care: A national survey of pediatric oncology providers.

The goal of this study was to assess pediatric oncology providers' perceptions of palliative care in order to validate previously identified barriers and facilitators to early integration of a pediatric palliative care team (PCT) in the care of children with cancer. A 36-question survey based on preliminary, single-institution data was electronically distributed to pediatric oncology physicians, nurse practitioners, nurses, and social workers nationally. The principal outcomes measured included perceived barriers and facilitators to early integration of pediatric palliative care. Data were analyzed using Rv3.1.2 statistical software. Most respondents agreed that the PCT does not negatively impact the role of the oncologist; however, there were concerns that optimal patient care may be limited by pediatric oncologists' need to control all aspects of patient care (P<0.001). Furthermore, oncologists, more than any provider group, identified that the emotional relationship they form with the patients and families they care for, influences what treatment options are offered and how these options are conveyed (P<0.01). Education and evidence-based research remain important to all providers. Respondents reached consensus that early integration of a PCT would provide more potential benefits than risks and most would not limit access to palliative care based on prognosis. Overall, providers endorse early integration of the PCT for children with cancer. There remains a continued emphasis on provider and patient education. Palliative care is generally accepted as providing a benefit to children with cancer, though barriers persist and vary among provider groups.