Specialized pediatric palliative care services for children dying from cancer: A repeated cohort study on the developments of symptom management and quality of care over a 10-year period
cancer; Palliative care; palliative medicine; pediatrics; quality of health care; symptom assessment
BACKGROUND:: About one quarter of children affected with cancer die. For children and their families, the end-of-life period is highly distressing. AIM:: This study focused on how end-of-life care in pediatric cancer patients changed over a period of 10 years and if changes in pediatric palliative care structures were associated with quality of care. DESIGN:: Over a 10-year period, all pediatric oncology departments in one German federal state were invited to participate in a repeated cross-sectional cohort study at three time-points (2005, 2010, 2015). Departments invited parents whose children died due to cancer 5 years earlier to participate. Identical semi-structured interviews were conducted with each cohort by the Survey of Caring for Children with Cancer. In addition, departments provided information on their pediatric palliative care infrastructure. PARTICIPANTS:: In total, 124 families participated; 73% of interviews were conducted with mothers, 18% with fathers, and 9% with both parents. RESULTS:: Parents' perception of symptom occurrence, symptom burden, and effectiveness of symptom-related treatment remained stable over the 10-year period. Over time, the availability of pediatric palliative care ( p < 0.001) as well as quality and satisfaction ratings of care ( p < 0.001) increased significantly. A growing number of children received specialized pediatric palliative care at home during the end-of-life period ( p = 0.009). Along with this development, more families had the chance to plan the location of death ( p = 0.003), and more children died at the preferred location ( p = 0.001). CONCLUSION:: Advances in the availability of pediatric palliative care were associated with improvement in some aspects of quality of care (e.g. location of death) while other aspects, such as effectiveness of symptom management, remained unchanged. Further research is required to determine whether additional improvement in structural quality may increase the effectiveness of symptom management.
Zernikow B; Szybalski K; Hubner-Mohler B; Wager J; Paulussen M; Lassay L; Jorch N; Weber C; Schneider D T; Janssen G; Oommen P T; Kuhlen M; Brune T; Wieland R; Schundeln M; Kremens B; Langler A; Prokop A; Kiener R; Niehues T; Rose M; Baumann-Kohler M; Poppelmann M; Thorer H; Irnich M; Sinha K; Wolfe J; Schmidt P
Palliative Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0269216318818022" target="_blank" rel="noreferrer noopener">10.1177/0269216318818022</a>
Palliative radiotherapy for pediatric patients: Parental perceptions of indication, intent, and outcomes
analgesia; article; child; clinical article; comfort; controlled study; expectation; female; human; male; palliative therapy; pediatric patient; perception; prospective study; quality of life; questionnaire; radiation oncology; radiotherapy; side effect
Objectives: Palliative radiation therapy (pRT) is often used to improve quality of life for pediatric patients. Though palliative doses are generally lower than those for cure, pRT may still introduce undesirable effects. The decision to pursue additional therapy for a child may be challenging and depends on parents' knowledge and expectations. The goal of this study was to explore parental perceptions of pRT.
Lee B K; Boyle P J; Zaslowe-Dude C; Wolfe J; Marcus K J
Pediatric Blood and Cancer
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/pbc.28003" target="_blank" rel="noreferrer noopener">10.1002/pbc.28003</a>
Models of Pediatric Palliative Oncology Outpatient Care-Benefits, Challenges, and Opportunities
models; oncology; outpatient care; Pediatric palliative care
PURPOSE: Although the bulk of current pediatric palliative care (PPC) services are concentrated in inpatient settings, the vast majority of clinical care, symptom assessment and management, decision-making, and advance care planning occurs in the outpatient and home settings. As integrated PPC/pediatric oncology becomes the standard of care, novel pediatric palliative oncology (PPO) outpatient models are emerging. The optimal PPO model is unknown and likely varies on the basis of institutional culture, resources, space, and personnel. METHODS: We review five institutions' unique outpatient PPO clinical models with their respective benefits and challenges. This review offers pragmatic guidance regarding PPO clinic development, implementation, and resource allocation. RESULTS: Specific examples include a floating clinic model, embedded disease-specific PPC experts, embedded consultative or trigger-based supportive care clinics, and telehealth clinics. CONCLUSION: Organizations that have overcome personnel, funding, and logistical challenges can serve as role models for centers developing PPO clinic models. In the absence of a one-size-fits-all model, pediatric oncology and PPC groups can select, tailor, and implement the model that best suits their respective personnel, needs, and capacities. Emerging PPO clinics must balance the challenges and opportunities unique to their organization, with the goal of providing high-quality PPC for children with cancer and their families.
Brock K E; Snaman J M;Kaye E C; Bower K A; Weaver M S; Baker J N; Wolfe J; Ullrich C
Journal of Oncology Practice
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1200/jop.19.00100" target="_blank" rel="noreferrer noopener">10.1200/jop.19.00100</a>
Experience of parents receiving results from a quality-of-life study in pediatric advanced cancer: A report from the PediQUEST study
dissemination; pediatric oncology; practice; quality of life; research results
Little is known about the experience of parents receiving results of quality-of-life research in pediatric advanced cancer. The PediQUEST study participants who indicated interest in results during enrollment were mailed summarized findings and the Disseminating Quality-of-Life Research Questionnaire. Respondents (86%,12/14) reported feeling more than "a little" recognized, grateful, or satisfied to receive results. Concurrently, 43% (6/14) endorsed feeling more than "a little" sad, confused, or anxious. Nonetheless, 81% (13/16) prefer to be informed in the future. Although parents experience a spectrum of strong emotions, our findings suggest quality-of-life study results should be shared.
Bilodeau M; Dussel V; Wolfe J
Pediatric Blood and Cancer
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/pbc.27880" target="_blank" rel="noreferrer noopener">10.1002/pbc.27880</a>
Palliative care integration in pediatric cardiac intensive care units: A novel champion-based model
child; comorbidity; conceptual framework; conceptual model; conference abstract; consensus; coronary care unit; feasibility study; heart development; heart disease; hospitalization; human; morbidity; outcome assessment; palliative therapy; prognosis; rotation; simulation; total quality management
Learning Objectives: Integration of pediatric palliative care (PPC) into the management of children with serious illness and their families is widely endorsed by international organizations and experts in the field as standard of care. However, timely referral to, and integration of PPC into the traditionally cure-orientated Cardiac Intensive Care Unit (CICU) remains variable. Despite significant declines in mortality for children with cardiac disease, key challenges confront the pediatric CICU community with regards to prognostication and discussion of goals of care. In the context of significant comorbidities and technological dependence, lengthy hospitalizations and recurrent admissions as well as interventions risking significant morbidity, these patients and families would benefit from PPC involvement across the illness trajectory. Methods: We propose a novel, conceptual framework for palliative care integration into the CICU using expert consensus and literature review. Results: The model utilizes CICU-based, interdisciplinary "champions". Pediatric Palliative Care Champions (PPCCs) would be identified from within the CICU team and receive additional training through PPC courses and rotations with sub-specialty PPC services. PPCCs would perform 3 primary roles. First, their clinical role as a liaison aims to strengthen provision of primary palliative care in daily CICU practice and improve utilization of sub-specialty PPC by encouraging earlier involvement in more complex patients' management. Second, PPCCs will lead educational and communication training of CICU staff including simulation sessions, focused on eliciting preferences, discussing prognosis, providing difficult news, assessing hopes and worries, and making goal-based recommendations. Third, PPCCs will be integral in CICU operational aspects and quality improvement initiatives including the development of CICU protocols and standard operating procedures to enhance the provision of high quality care at the end of life. Conclusions: This novel conceptual model for integration of PPC into CICUs is designed for adaptability in the context of cultural, financial, personnel, and logistic needs and constraints unique to each institution. While the PPCC framework offers several unique advantages over other care models, barriers to implementation are anticipated. Further research is needed to investigate the feasibility, acceptability, and potential efficacy of this model on standard outcome measures as well as patient- and parent-reported metrics.
Moynihan K; Kaye E; Bailey V; Wolfe J; Thiagarajan R; Snaman J
Critical Care Medicine
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/01.ccm.0000551170.37983.db" target="_blank" rel="noreferrer noopener">10.1097/01.ccm.0000551170.37983.db</a>
Integration of Pediatric Palliative Care Into Cardiac Intensive Care: A Champion-Based Model
article; child; human; palliative therapy; skill; coronary care unit; multicenter study; staff; patient referral; clinician; hospitalization; total quality management; mortality; comorbidity; conceptual framework; consensus; feasibility study; heart disease; morbidity; rotation
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. Copyright © 2019 by the American Academy of Pediatrics.
Moynihan K M; Snaman J M; Kaye E C; Morrison W E; DeWitt A G; Sacks L D; Thompson J L; Hwang J M; Bailey V; Lafond D A; Wolfe J; Blume E D
Pediatrics
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2019-0160" target="_blank" rel="noreferrer noopener">10.1542/peds.2019-0160</a>
Impact of Specialized Pediatric Palliative Care: A Systematic Review
Medline; child; cohort analysis; female; human; male; palliative therapy; controlled study; pediatrics; outcome assessment; quality of life; systematic review; Palliative care; data extraction; Embase; review; synthesis; Web of Science; PsycINFO; risk assessment; consensus; clinical assessment; Cochrane Library; end of life; global health; patient reported outcome; patient-reported outcomes; randomized controlled trial (topic); selection bias
CONTEXT: Specialized pediatric palliative care (SPPC) is increasingly involved in the care of seriously ill children, yet the evidence on its impact has not been comprehensively reviewed. OBJECTIVE(S): To assess the effects of providing SPPC to seriously ill children on patient-, caregiver-, and systems-level outcomes. METHOD(S): We performed a Systematic Review following Cochrane methods. DATA SOURCES: Medline, Embase, PsycINFO, Global Health, The Cochrane Central Register of Controlled Trials, LILACS, and Web of Science were searched from January 1996 to June 2018. STUDY SELECTION/DATA EXTRACTION: We included randomized controlled, cohort, case-control, and before-after studies in which exposure to SPPC services was the intervention of interest. All outcomes reported in these studies were included. Two investigators independently selected articles, extracted data, and assessed risk of bias of included studies using standardized criteria. RESULT(S): Twenty-four studies were included in qualitative synthesis: one non-randomized controlled trial, 16 cohort studies, and seven before-after studies. Evidence certainty was low. Twenty-one studies had >=1 area with high risk of bias, most commonly selection bias, low group comparability, risk for confounding, and inadequate statistical reporting. Studies analyzed 46 domains, operationalized as 136 distinct outcomes. SPPC was associated with better child quality of life (QOL) scores in all four studies that assessed this outcome. No other outcome showed this consistency. CONCLUSION(S): Receiving SPPC was associated with better child QOL. However, the paucity and low certainty of the evidence precluded any firm recommendations about SPPC practice. Larger collaborative networks and greater consensus regarding SPPC research standards are needed. Copyright © 2019. Published by Elsevier Inc.
Marcus K L; Santos G; Ciapponi A; Comande D; Bilodeau M; Wolfe J; Dussel V
Journal of Pain and Symptom Management
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.005" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.08.005</a>
Challenges and Priorities for Pediatric Palliative Care Research in the United States and Similar Practice Settings: Report from a Pediatric Palliative Care Research Network Workshop
palliative care; decision-making; funding; pediatric; family; infrastructure; methodology; research; symptoms; training
CONTEXT: In order to dramatically advance the evidence base for pediatric palliative care (PPC) interventions, practices, and programs in the United States 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 upon 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.
Feudtner C; Rosenberg A R; Boss R D; Wiener L; Lyon M E; Hinds P S; Bluebond-Langner M; Wolfe J
Journal of Pain and Symptom Management
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.011" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.08.011</a>
Development of a Pediatric Palliative Care Curriculum and Dissemination Model: Education in Palliative and End-of-Life Care (EPEC) Pediatrics
Education; Curriculum; Dissemination; Pediatric Palliative Care; post-graduate teaching; Train-the-Trainer
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 US$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. Additionally, a one-day Professional Development Workshop (PDW) was developed to teach EPEC-Pediatrics graduates to teach 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 PDWs. 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. Participants 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. It is highly adaptable for local settings, became self-sustaining and six conferences are offered around the world in 2019.
Friedrichsdorf S J; Remke S; Hauser J; Foster L; Postier A; Kolste A; Wolfe J
Journal of Pain and Symptom Management
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2019.06.008" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.06.008</a>
Experiences of children with trisomy 18 referred to pediatric palliative care services on two continents
palliative care; trisomy 18; pediatrics
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.
Mullin J; Wolfe J; Bluebond-Langner M; Craig F
American Journal of Medical Genetics
2019
<a href="http://doi.org/10.1002/ajmg.a.61149" target="_blank" rel="noreferrer noopener">10.1002/ajmg.a.61149</a>
Communication about prognosis and end-of-life in pediatric organ failure and transplantation
advance care planning; pediatric; communication; end-of-life; solid organ transplant
BACKGROUND: Despite advancements in treatment and survival, pediatric organ failure and transplant populations continue to face significant risks of morbidity and mortality. Little scientific attention has been given to addressing the end-of-life care needs of this growing population of young people. This study characterized current practices, beliefs, and challenges specific to the disclosure of prognosis and end-of-life care topics among providers caring for pediatric organ failure and transplant populations. METHODS: This cross-sectional study included 144 healthcare providers actively caring for children, adolescents, and young adults with organ failure or solid organ transplant history. Participants completed an electronic survey measuring frequency and comfort in discussing the following topics with patients and parents: prognosis/survival statistics, re-transplantation, advance care planning (ACP), and death/dying. Descriptive statistics, two-sample t tests, and analysis of variance were used. RESULTS: Fewer than half of respondents regularly discuss prognosis/survival statistics and potential need for re-transplantation with their pediatric and young adult patients. Less than 20% of providers engage their pediatric patients in ACP discussions, and approximately 30% facilitate such discussions with young adult patients. Pediatric organ failure and transplant providers endorse a number of barriers specific to discussing these topics. CONCLUSION: Pediatric organ failure and transplant providers do not regularly discuss prognosis or end-of-life care topics with this patient population. Communication-focused intervention research is needed to improve honest and compassionate discussion of these topics that is aligned with both patients' and parents' needs and preferences.
Cousino MK; Schumacher KR; Magee J C; Wolfe J; Yu S; Eder SJ; Fredericks EM
Pediatric Transplantation
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/petr.13373" target="_blank" rel="noreferrer noopener">10.1111/petr.13373</a>
Research Priorities in Pediatric Palliative Care
Palliative Care; Parents/px [Psychology]; Humans; United States; Pediatrics; Delphi Technique; Attitude of Health Personnel; Research
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.
Baker JN; Levine D R; Hinds PS; Weaver MS; Cunningham MJ; Johnson L; Anghelescu D; Mandrell B; Gibson DV; Jones B; Wolfe J; Feudtner C; Friebert S; Carter B; Kane J R
Journal of Pediatrics
2015
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpeds.2015.05.002" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2015.05.002</a>
Pediatric Palliative Care in the Multi-Cultural Context: Findings from a workshop conference
culture; palliative care; Pediatric; family; religion; health disparity; race/ethnicity
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 either 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 6 unique disciplines, 25 of the United States, and 3 nations. Whereas 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.
Rosenberg A R; Bona K; Coker T; Feudtner C; Houston K; Ibrahim A; Macauley R; Wolfe J; Hays R
Journal of Pain and Symptom Management
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2019.01.005" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2019.01.005</a>
Access to Pediatric Palliative Care in the Neonatal Intensive Care Unit by Minorities and Rural-Dwellers in the Deep South: Patterns of Care from 2009-2017 (S816)
infant; hospice; mortality; Mississippi; Alabama; palliative therapy; major clinical study; retrospective study; Caucasian; neonatal intensive care unit; prematurity; time of death; conference abstract; medical record review; human; child; female; male; controlled study; hospitalization; resuscitation; statistics; medicaid; data analysis software; Louisiana; African American; hospitalized infant; travel
Objectives: 1. Describe patterns of pediatric palliative care and care disparities in neonatal intensive care unit (NICU) patients and families hospitalized in the Deep South (Alabama, Louisiana, and Mississippi). 2. Describe implications for practice related to current trends of pediatric palliative care use in the NICU and implications for future research. Original Research Background: Pediatric mortality is the highest in the first year of life. In 2013, 23,446 infants died in the U.S. Access to timely pediatric palliative care (PPC) services are limited for seriously ill infants and their families in the U. S. Deep South. Patterns of PPC in the neonatal intensive care unit (NICU) and the extent of PPC disparities in the Deep South are unknown. Research Objectives: Examine racial and geographical differences in pediatric palliative care (PPC) consultation for seriously ill infants in the neonatal intensive care unit.
Currie E; Wolfe J; Boss R; Ejem D; Perna S; Dionne-Odom J; Buckingham S; McKillip K; Bakitas M
Journal of Pain and Symptom Management
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2018.12.269" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2018.12.269</a>
Neonatal Palliative Care in the United States Deep South: Exploration of Patterns of Care and Health Disparities
infant; newborn; Mississippi; terminal care; palliative therapy; major clinical study; neonatal intensive care unit; conference abstract; medical record review; human; child; female; male; controlled study; resuscitation; statistics; chi square test; Alabama; health disparity; Louisiana; race
Background: In 2013, 23,446 infants died in the U.S.. For infants hospitalized in the neonatal intensive care unit (NICU), advances in medicine have prolonged the lives of many infants who would not have previously survived, resulting in complex clinical scenarios that would benefit from the integration of pediatric palliative care (PPC). PPC is an interdisciplinary specialty that aims to provide the best possible quality of life for seriously ill infants and their families and involves comprehensive treatment of suffering. However, PPC is often underutilized in the NICU, integrated too late in the illness for the patient and family to fully benefit from PPC, or avoided completely. Access to palliative care in the U.S. varies across regions, with limited access to PPC in the Deep South. However, patterns of neonatal palliative care and the extent of disparities within neonatal PPC throughout the Deep South is unknown.
Currie E; Boss R; Wolfe J; Dionne-Odom JN; Ejem D; Bakitas M
Journal of Pain and Symptom Management
2018
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.417" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.417</a>