An Interprofessional Team-Based Intervention to Address Barriers to Initiating Palliative Care in Pediatric Oncology: A Multiple-Method Evaluation of Feasibility, Acceptability, and Impact
oncology; Pediatric palliative care; feasibility; codesign; team cohesion; team collaboration
CONTEXT: Many children with advanced cancer are not referred to palliative care despite both professional recommendations to do so and bereaved parental preference for earlier support from sub-specialty palliative care. OBJECTIVES: To assess the feasibility, acceptability, and impact of an adaptive intervention to address individual and team-level barriers to specialty palliative care referrals. METHODS: A multiple-method approach assessed feasibility and acceptability among clinicians from pediatric oncology teams at a single institution. Quantitative measures of comfort with palliative care consultations, team cohesion, and team collaboration were conducted before and after the intervention. Number of palliative care consults were examined before, during, and after sessions. Intervention satisfaction surveys and qualitative interviews were conducted after the intervention. RESULTS: Twenty-six team members (90% of consented) attended at least one intervention session with 20 (69%) participants completing 75% or more sessions. The intervention was modified in response to participant feedback. After the intervention, participants reported greater team cohesion, comfort discussing palliative care consultation, team collaboration, process satisfaction, and decision satisfaction. Participants agreed that the training was useful, effective, helpful, and worthwhile, that they would use the skills, and that they would recommend the training to other providers. The numbers of palliative care consults increased before intervention sessions were conducted, but did not significantly change during or after the sessions. In the interviews, participants reported overall favorably regarding the intervention with some participants reporting changes in practice. CONCLUSION: An adaptive intervention to reduce barriers to initiating palliative care for pediatric oncology teams is feasible and acceptable.
Walter JK; Hill DL; Schall TE; Szymczak JE; Parikh S; DiDomenico C; Carroll KW; Nye RT; Feudtner C
Journal of Pain and Symptom Management
2021
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.2021.06.008" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.06.008</a>
Outcomes of unrelated umbilical cord blood transplantation for X-linked adrenoleukodystrophy
Child; Humans; Male; Survival Rate; Treatment Outcome; Cognition; Predictive Value of Tests; Motor Activity; Preschool; Outcomes; Adrenoleukodystrophy/complications/mortality/physiopathology/therapy; Cord Blood Stem Cell Transplantation/methods; Graft Survival; Graft vs Host Disease; Histocompatibility Testing; Language Development; Myeloablative Agonists/therapeutic use; Neurophysiology; Transplantation Conditioning/methods
Adrenoleukodystrophy (ALD) is an X-linked disorder caused by a defect in the metabolism of long chain fatty acids leading to demyelination, neurodegeneration, and death. The disease typically presents in young boys and adolescent boys. Allogeneic bone marrow transplantation has been used to halt progression of the disease. However, many patients lack suitable HLA- matched related donors and must rely on unmatched donors for a source of stem cells. The purpose of this study was to evaluate outcomes of unrelated donor umbilical cord blood transplantation after chemotherapy-based myeloablative conditioning and retrospectively determine if baseline studies correlate and help predict outcome. Between November 22, 1996, and November 3, 2005, 12 boys with X-linked ALD who lacked HL- matched related donors were referred to Duke University Medical Center for transplantation. These children were conditioned with myeloablative therapy including busulfan, cyclophosphamide, and antithymocyte globulin before receiving umbilical cord-blood transplants from unrelated donors. Baseline studies of neurophysiologic, neuroimaging, and neurodevelopmental status were performed and patients were subsequently evaluated for survival, engraftment, graft-versus-host disease, and neurodevelopmental outcomes. A substudy evaluated whether baseline neuroimaging and neurophysiologic studies correlated with cognitive and motor function and if these studies were predictive of posttransplantation outcomes. The umbilical cord blood grafts had normal levels of very long chain fatty acids. They delivered a median of 6.98 x 10(7) nucleated cells per kilogram of recipient body weight and were discordant for up to 4 of 6 HLA markers. Neutrophil engraftment occurred at a median of 22.9 days after transplantation. Three patients had grade II-IV acute graft-versus-host disease; 2 had extensive chronic graft-versus-host disease. Cumulative incidence of overall survival of the group at 6 months is 66.7% (95% confidence interval 39.9-93.3%). Median follow-up was 3.3 years (range 12 days to 6.3 years). As previously reported with bone marrow transplantation, symptomatic patients faired poorly with lower survival and rapid deterioration of neurologic function. This study included 3 patients transplanted at a very young age (2.6-3.5 years) before the onset of clinical symptoms who continue to develop at a normal rate for 3-5 years posttransplant. Although baseline Loes scores correlated with cognitive and motor outcome, neurophysiologic studies failed to show statistically significant differences. Transplantation of boys with X-linked ALD using partial HLA-matched umbilical cord blood yields similar results to those previously reported after bone marrow transplantation. Superior outcomes were seen in neurologically asymptomatic boys less than 3.5 years of age at the time of transplantation. Baseline Loes scores were a strong predictor of cognitive and motor outcome.
2007
Beam D; Poe MD; Provenzale JM; Szabolcs P; Martin PL; Prasad V; Parikh S; Driscoll T; Mukundan S; Kurtzberg J; Escolar ML
Biology Of Blood And Marrow Transplantation : Journal Of The American Society For Blood And Marrow Transplantation
2007
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).
Journal Article
<a href="http://doi.org/10.1016/j.bbmt.2007.01.082" target="_blank" rel="noreferrer">10.1016/j.bbmt.2007.01.082</a>
Pediatric Palliative Care And Hospice Program Development In 2016: Strategies For Success In An Ever-expanding World
Objectives
Propose pediatric program design or expansion
based on newly acquired skills of defining a
desirable and functional scope that aligns with
health system’s missions and values and identifies
areas of potential growth and collaboration
within the health system.
Discuss the creation of a formal business plan for
development of a pediatric palliative care program
to present to senior hospital leadership
that effectively highlights the benefits and challenges
of a billing revenue only strategy and
thus a need for operating dollars and philanthropic
support as a comprehensive business
plan strategy.
Develop a strategy for their community to implement
PC with limited resources and increase buyin
from stakeholders.
As with adult palliative care, pediatric palliative care is
experiencing rapid growth. Like adult palliative care,
pediatric palliative care practitioners also need to
design and sustain programs that respond to their
own institutional needs and values, that show value
added through metrics and quality improvement
research, that acknowledge the national palliative
care staffing shortage, that address the growing need
for outpatient resources in all communities, and
that have strategies embedded to prevent staff
burnout. Distinct from adult palliative care is pediatrics’
need for greater philanthropic and operational
dollar support as pediatric palliative care has not
had the patient volume to show the reduced cost savings
strategy that drives many adult palliative care
budget plans. This workshop will present strategies
for preliminary pediatric program planning and
budgeting that address these needs through the presentation
of five distinct pediatric palliative care programs.
Education will be heavily driven through case
presentations that contrast resource-rich versus
resource limited environments, newer programs
versus more established programs, and inpatient
versus outpatient arenas. After providing this platform,
the workshop will utilize these experts to assist
in small group discussions that focus on participants’
unique program needs and questions.
Humphrey L; Friebert S; Miller E; Ragsdale L; Parikh S
Journal Of Pain And Symptom Management
2016
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).
DOI: http://dx.doi.org/10.1016/j.jpainsymman.2015.12.113