1
40
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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December 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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December 2019 List
URL Address
<a href="http://doi.org/10.1136/bmjpo-2019-000547" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjpo-2019-000547</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Access to paediatric palliative care in children and adolescents with complex chronic conditions: A retrospective hospital-based study in Brussels, Belgium
Publisher
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BMJ Paediatrics Open
Date
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2019
Subject
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adolescent; article; Belgium; cardiovascular disease; child; chronic disease; complex chronic condition; congenital disorder; data base; female; gastrointestinal disease; genetic disorder; groups by age; health care access; hematologic disease; hospital; hospital admission; hospitalized adolescent; hospitalized child; human; Icd-9; immune deficiency; infant; length of stay; major clinical study; male; malignant neoplasm; metabolic disorder; morbidity; neurologic disease; newborn; palliative therapy; patient care; patient referral; pediatric patient; pediatric ward; priority journal; respiratory tract disease; retrospective study; urinary tract disease
Creator
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Friedel M; Gilson A; Bouckenaere D; Brichard B; Fonteyne C; Wojcik T; De Clercq E; Guillet A; Mahboub A; Lahaye M; Aujoulat I
Description
An account of the resource
BACKGROUND: Paediatric complex chronic conditions (CCCs) are life-limiting conditions requiring paediatric palliative care, which, in Belgium, is provided through paediatric liaison teams (PLTs). Like the number of children and adolescents with these conditions in Belgium, their referral to PLTs is unknown. OBJECTIVES: The aim of the study was to identify, over a 5-year period (2010-2014), the number of children and adolescents (0-19 years) living with a CCC, and also their referral to PLTs. METHODS: International Classification of Disease codes (ICD-9) corresponding to a CCC, as described by Feudtner et al, and national registration numbers were extracted from the databases of all hospitals (n=8) and PLTs (n=2) based in the Brussels region. Aggregated data and pseudonymised national registration number were transmitted to the research team by a Trusted Third Party (eHealth). Ages and diagnostic categories were calculated using descriptive statistics. RESULTS: Over 5 years (2010-2014) in the Brussels region, a total of 22 721 children/adolescents aged 0-19 years were diagnosed with a CCC. Of this number, 22 533 were identified through hospital registries and 572 through PLT registries. By comparing the registries, we found that of the 22 533 children/adolescents admitted to hospital, only 384 (1.7%) were also referred to a PLT. CONCLUSION: In Belgium, there may be too few referrals of children and adolescents with CCC to PLTs that ensure continuity of care.
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<a href="http://doi.org/10.1136/bmjpo-2019-000547" target="_blank" rel="noreferrer noopener">10.1136/bmjpo-2019-000547</a>
Rights
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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).
2019
Adolescent
Article
Aujoulat I
Belgium
BMJ Paediatrics Open
Bouckenaere D
Brichard B
Cardiovascular Disease
Child
Chronic Disease
complex chronic condition
congenital disorder
Data Base
De Clercq E
December 2019 List
Female
Fonteyne C
Friedel M
gastrointestinal disease
Genetic Disorder
Gilson A
groups by age
Guillet A
Health Care Access
hematologic disease
Hospital
Hospital Admission
hospitalized adolescent
Hospitalized Child
Human
Icd-9
immune deficiency
Infant
Lahaye M
Length Of Stay
Mahboub A
Major Clinical Study
Male
Malignant Neoplasm
Metabolic Disorder
Morbidity
Neurologic Disease
Newborn
Palliative Therapy
Patient Care
Patient Referral
pediatric patient
pediatric ward
Priority Journal
Respiratory Tract Disease
Retrospective Study
urinary tract disease
Wojcik T
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2018 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
What do transplant physicians think about palliative care? A national survey study
Publisher
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Blood
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
medical oncologist; palliative therapy; Adult; bone marrow; Caregiver; Child; conference abstract; Female; friend; graft recipient; graft versus host reaction; hematologic disease; Hematopoietic stem cell transplantation; Hispanic; hospice; Human; human tissue; Male; outpatient care; patient referral; Perception; Questionnaire; Trust; United States
Creator
An entity primarily responsible for making the resource
El-Jawahri A; LeBlanc TW; Burns LJ; Denzen E; Meyer CL; Mau LW; Roeland EJ; Wood WA; Petersdorf E
Description
An account of the resource
Background: Palliative care (PC) has been shown to improve quality of life, symptom burden, and mood in patients with advanced solid tumors as well as those with hematologic malignancies undergoing hematopoietic stem cell transplantation (HSCT). Despite these improvements in patientcentered outcomes, PC is under-utilized in the care of patients undergoing HSCT. We hypothesized that this may in part be due to transplant physicians' perceptions and attitudes about PC, which have not been fully elucidated. Methods: We conducted a cross-sectional, web-based survey of transplant physicians who care for patients with hematologic diseases in January-February 2017. Participants were recruited from the American Society for Blood and Marrow Transplantation (ASBMT) membership list. Using a 28-item questionnaire adapted from prior studies of medical oncologists, we examined transplant physicians' 1) access to PC services; 2) perceptions and attitudes about PC; and 3) perceptions of the unmet PC needs of HSCT patients and their caregivers. Results: Of 1005 eligible physicians, 277 transplant physicians completed the questionnaire yielding a response rate of 28%. The majority were white (194/277, 70%), not Hispanic or Latino (194/277, 70%), and male (179/277, 65%). All regions in the United States were represented. Most physicians (179/277, 65%) provided care to adult patients, with 28% (77/277) to pediatric patients and 8% (21/277) to both groups. The majority (159/277, 57%) provided care to both non-HSCT and HSCT patients, with 43% (118/277) to HSCT patients only. Overall, 36% (101/277) had < 10 years of practice, 29% (80/277) had 10-20 years, and 35% (96/277) had > 20 years in practice. Physicians collaborated with PC services more often for inpatient (121/277, 44%) than outpatient care (57/277, 21%). The quality of inpatient and outpatient PC services were considered excellent by 45% (124/77) and 30% (82/277) of physicians, respectively. Only 14% (39/277) reported collaborating often with home hospice services. Most physicians (233/277, 84%) felt that they should coordinate the care of their patients across all stages of disease including at the end of life (EOL). The majority (210/277, 76%) stated that they trust PC clinicians to care for their patients, but 40% (110/277) agreed that PC clinicians do not have enough understanding to counsel their HSCT patients regarding their treatment. Most expressed concerns about how patients perceive PC [Figure 1 and Figure 2]. For example, 82% (227/277) of physicians reported that when patients hear the term PC, they feel scared. In addition, 65% (180/277) reported that if a PC referral is suggested, patients might think nothing more can be done for their disease. The majority of transplant physicians reported that the service name 'palliative care' is a barrier to PC utilization [Figure 3]. However, most physicians recognized substantial unmet PC needs in their population including 1) physical symptoms (56%); 2) graft-versus-host disease symptoms (51%), 3) emotional and psychological needs (71%); 4) spiritual needs (63%); 5) preparing for future medical care (65%); and 6) supporting family and friends (69%). Conclusions: Despite reporting immense PC needs for HSCT patients, transplant physicians have a strong sense of commitment to address these needs. While the majority of respondents reported trusting PC, they also expressed substantial concerns about PC clinicians' knowledge about HSCT. In addition, most transplant physicians were concerned about patients' perception of the term 'palliative care'. Interventions are needed to promote collaboration, improve perceptions, and enhance integration of PC for transplant recipients. (Figure Presented).
2017
Rights
Information about rights held in and over the resource
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).
2017
Adult
Blood
bone marrow
Burns LJ
Caregiver
Child
conference abstract
Denzen E
El-Jawahri A
Female
friend
Graft Recipient
graft versus host reaction
hematologic disease
Hematopoietic stem cell transplantation
Hispanic
Hospice
Human
Human Tissue
LeBlanc TW
Male
March 2018 List
Mau LW
medical oncologist
Meyer CL
outpatient care
Palliative Therapy
Patient Referral
Perception
Petersdorf E
Questionnaire
Roeland EJ
Trust
United States
Wood WA