Dataset Information

Specialized Pediatric Palliative Care Services in Pediatric Hematopoietic Stem Cell Transplant Centers.

ABSTRACT: Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients as a successful curative therapy for life-threatening conditions. The treatment is intensive, with risks of serious complications and lethal outcomes. This study aimed to provide insight into current data on the place and cause of death of transplanted children, the available specialized pediatric palliative care services (SPPCS), and what services HSCT professionals feel the SPPCS team should provide. First, a retrospective database analysis on the place and cause of death of transplanted pediatric HSCT patients was performed. Second, a survey was performed addressing the availability of and views on SPPCS among HSCT professionals. Database analysis included 233 patients of whom the majority died in-hospital: 38% in the pediatric intensive care unit, 20% in HSCT units, 17% in other hospitals, and 14% at home or in a hospice (11% unknown). For the survey, 98 HSCT professionals from 54 centers participated. Nearly all professionals indicated that HSCT patients should have access to SPPCS, especially for pain management, but less than half routinely referred to this service at an early stage. We, therefore, advise HSCT teams to integrate advance care planning for pediatric HSCT patients actively, ideally from diagnosis, to ensure timely SPPCS involvement and maximize end-of-life preparation.

SUBMITTER: Mekelenkamp H

PROVIDER: S-EPMC8393700 | biostudies-literature | 2021 Jul

REPOSITORIES: biostudies-literature

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Specialized Pediatric Palliative Care Services in Pediatric Hematopoietic Stem Cell Transplant Centers.

Mekelenkamp Hilda H Schröder Teija T Trigoso Eugenia E Hutt Daphna D Galimard Jacques-Emmanuel JE Kozijn Anne A Dalissier Arnaud A Gjergji Marjola M Liptrott Sarah S Kenyon Michelle M Murray John J Corbacioglu Selim S Bader Peter P On Behalf Of The Ebmt-Nurses Group Paediatric Diseases Working Party

Children (Basel, Switzerland) 20210721 8

Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients as a successful curative therapy for life-threatening conditions. The treatment is intensive, with risks of serious complications and lethal outcomes. This study aimed to provide insight into current data on the place and cause of death of transplanted children, the available specialized pediatric palliative care services (SPPCS), and what services HSCT professionals feel the SPPCS team should provide. First, a r ...[more]

PMID: 34438506

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Project description:ObjectivesRacial/ethnic disparities in utilizing inpatient palliative care services are well documented in the adult literature. However, the impact of racial/ethnic disparities in the context of pediatric palliative care is less well understood even in high-acuity patient populations such as stem cell transplant patients. We investigated racial/ethnic differences in the utilization of inpatient palliative care consultations (IPCCs) for pediatric stem cell transplant patients.Study designA retrospective cohort study was conducted using the Pediatric Health Information System database. A generalized linear mixed effects model was developed to assess demographic and clinical characteristics associated with the likelihood of receiving IPCC.SettingThirty-eight tertiary pediatric hospitals in the United States.PatientsPediatric patients undergoing stem cell transplantation for any indication from January 2017 to December 2019.InterventionsNone.Measurements and main resultsOf the 1,193 inpatient encounters studied, 12% (n = 143) included a palliative care consult. IPCC rates varied across hospitals with a median rate of 5.97% (interquartile range, 0.00-20.71). In multivariable analyses, Hispanic/Latinx patients were 59% less likely to receive IPCC compared with non-Hispanic White patients (odds ratio [OR], 0.41; 95% CI, 0.21-0.78). This difference persisted after adjusting for all other sociodemographic and clinical factors. In terms of the other clinical characteristics, having a malignant condition and mechanical ventilation were associated with significantly increased odds of receiving IPCC for the entire cohort (OR Malignancy: 1.93; 95% CI: 1.07-3.51; OR Mechanical Ventilation: 2.37; 95% CI: 1.36-4.13). The remainder of the variables were not found to be significantly associated with IPCC.ConclusionsRacial and ethnic differences exist in the likelihood of receiving palliative care consultations among hospitalized pediatric stem cell transplant recipients. Evaluating the impact of systemic racism and social determinants on palliative care medicine as well as standardizing early integration of IPCC may potentially mitigate disparities in this population.

Project description:Purpose Inpatient palliative care integrated with transplant care improves patients' quality of life (QOL) and symptom burden during hematopoietic stem-cell transplant (HCT). We assessed patients' mood, post-traumatic stress disorder (PTSD) symptoms, and QOL 6 months post-transplant. Methods We randomly assigned 160 patients with hematologic malignancies who underwent autologous or allogeneic HCT to inpatient palliative care integrated with transplant care (n = 81) or transplant care alone (n = 79). At baseline and 6 months post-transplant, we assessed mood, PTSD symptoms, and QOL with the Hospital Anxiety and Depression Scale and Patient Health Questionnaire, PTSD checklist, and Functional Assessment of Cancer Therapy-Bone Marrow Transplant. To assess symptom burden during HCT, we used the Edmonton Symptom Assessment Scale. We used analysis of covariance while controlling for baseline values to examine intervention effects and conducted causal mediation analyses to examine whether symptom burden or mood during HCT mediated the effect of the intervention on 6-month outcomes. Results We enrolled 160 (86%) of 186 potentially eligible patients between August 2014 and January 2016. At 6 months post-transplant, intervention participants reported lower depression symptoms on the Hospital Anxiety and Depression Scale and Patient Health Questionnaire (adjusted mean difference, -1.21 [95% CI, -2.26 to -0.16; P = .024] and -1.63 [95% CI, -3.08 to -0.19; P = .027], respectively) and lower PTSD symptoms (adjusted mean difference, -4.02; 95% CI, -7.18 to -0.86; P = .013), but no difference in QOL or anxiety. Symptom burden and anxiety during HCT hospitalization partially mediated the effect of the intervention on depression and PTSD at 6 months post-transplant. Conclusion Inpatient palliative care integrated with transplant care leads to improvements in depression and PTSD symptoms at 6 months post-transplant. Reduction in symptom burden and anxiety during HCT partially accounts for the effect of the intervention on these outcomes.

Project description:ObjectivesResearch suggests palliative care to be translated and integrated in non-specialized palliative care services throughout the palliative care continuum across populations and settings. A need has been identified to build on the existing research literature in order to design strong knowledge translation strategies that can be evaluated in future research. The aim was to map strategies for knowledge translation of a palliative approach to care into non-specialized palliative care services for adult patients. The objectives were to explore the primary research activities, the specific type of knowledge translation strategies used, the research designs and study settings for such evaluations along with the major results thereof, and to identify major research gaps in this area.MethodsA scoping review was performed to map the volume and characteristics of research literature (project registered in PROSPERO #2018 CRD42018100663). The ten-year period 2010 to 2019 was searched in six major databases for original articles published in English in which the knowledge translation of a palliative approach for adult patients was evaluated in non-specialized palliative healthcare settings, and all type of empirical data-based research designs. We excluded non-English, non-empirical articles, non-evaluation of knowledge translations, specialized palliative care settings, and other types of publications (i.e. non-original articles).ResultsMost of the 183 included articles focused on patients with cancer who were dying in hospitals and in high income countries. Only 13 articles focused on early palliative care. A palette of different strategies was used to implement palliative care in non-specialist palliative settings; no strategy was identified as outstanding. The majority of the articles had unspecified essential components of the research designs.ConclusionPrevious suggestions for utilization of implementation science for knowledge translation of a palliative approach to care into non-specialized palliative care services are confirmed, and established knowledge translation theories can strengthen the field. To advance this specific field of knowledge, meticulously detailed reporting of studies is required as related to research designs, clarifications of contextual influences and mechanisms at work. Specific systematic reviews and meta-syntheses in the field are merited.

Dataset Information

Specialized Pediatric Palliative Care Services in Pediatric Hematopoietic Stem Cell Transplant Centers.

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Specialized Pediatric Palliative Care Services in Pediatric Hematopoietic Stem Cell Transplant Centers.

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