1
40
17
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Title
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1089/jpm.2023.0063" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2023.0063</a>
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Early Versus Late Outpatient Pediatric Palliative Care Consultation and Its Association With End-of-Life Outcomes in Children with Cancer
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Palliative Care; pediatric palliative care; Referral and Consultation; advance care planning; end of life; childhood cancer; supportive care; pediatric oncology
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Lee A; DeGroote NP; Brock KE
Description
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Background: There is no consensus on what constitutes "early" pediatric palliative care (PPC) referral within pediatric oncology. Few studies report outcomes based on PPC timing. Objectives: Investigate associations between early (<12 weeks) or late (≥12 weeks from diagnosis) outpatient PPC consultation with demographics, advance care planning (ACP), and end-of-life (EOL) outcomes. Design: Retrospective chart and database review of demographic, disease, visit data, and PPC/EOL outcomes. Setting/Subjects: Deceased pediatric patients with cancer 0-27 years of age seen at an embedded consultative PPC clinic. Measurements: Patient demographics, disease characteristics, PPC/EOL outcomes: timing/receipt of ACP, hospice enrollment, do-not-resuscitate (DNR) documentation, hospital days in last 90 days of life, concordance between actual and preferred location of death, receipt of cardiopulmonary resuscitation (CPR) at EOL, and death in the intensive care unit. Results: Thirty-two patients received early and 118 received late PPC. Early outpatient PPC was associated with cancer type (p < 0.01). Early PPC (p = 0.04) and ACP documentation (p = 0.04) were associated with documentation of preferred location of death. Early PPC was associated with a preference for home death (p = 0.02). Timing of outpatient PPC was not associated with ACP documentation or other EOL outcomes. In the entire cohort, 73% of PPC patients received hospice, 74% had a DNR order, 87% did not receive CPR at EOL, and 90% died in their preferred location. Conclusions: When using a cutoff of 12 weeks from diagnosis, outpatient PPC timing was only associated with location of death metrics, likely due to high-quality PPC and EOL care among all patients.
Identifier
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<a href="http://doi.org/10.1089/jpm.2023.0063" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0063</a>
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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).
2023
2023 SE3 - Oncology
Advance Care Planning
Brock KE
Childhood Cancer
DeGroote NP
End Of Life
Journal of Palliative Medicine
Lee A
Palliative Care
Pediatric Oncology
Pediatric Palliative Care
Referral And Consultation
Supportive Care
-
Dublin Core
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Title
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June 2023 List
Text
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Citation List Month
June 2022 List
URL Address
<a href="https://spcare.bmj.com/content/early/2023/04/24/spcare-2022-004012">https://spcare.bmj.com/content/early/2023/04/24/spcare-2022-004012</a>
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Title
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Psychological well-being of hospice staff: systematic review
Publisher
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BMJ Supportive and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Hospices; Supportive care; Psychological care; Education and training; Hospice care
Creator
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Papworth A; Ziegler L; Beresford B; Mukherjee S; Fraser L; Fisher V; O'Neill M; Golder S; Bedendo A; Taylor J
Description
An account of the resource
BACKGROUND: Poor psychological well-being among healthcare staff has implications for staff sickness and absence rates, and impacts on the quality, cost and safety of patient care. Although numerous studies have explored the well-being of hospice staff, study findings vary and the evidence has not yet been reviewed and synthesised. Using job demands-resources (JD-R) theory, this review aimed to investigate what factors are associated with the well-being of hospice staff. METHODS: We searched MEDLINE, CINAHL and PsycINFO for peer-reviewed quantitative, qualitative or mixed-methods studies focused on understanding what contributes to the well-being of hospice staff who provide care to patients (adults and children). The date of the last search was 11 March 2022. Studies were published from 2000 onwards in the English language and conducted in Organisation for Economic Co-operation and Development countries. Study quality was assessed using the Mixed Methods Appraisal Tool. Data synthesis was conducted using a result-based convergent design, which involved an iterative, thematic approach of collating data into distinct factors and mapping these to the JD-R theory. RESULTS: A total of 4016 unique records were screened by title and abstract, 115 full-text articles were retrieved and reviewed and 27 articles describing 23 studies were included in the review. The majority of the evidence came from studies of staff working with adult patients. Twenty-seven individual factors were identified in the included studies. There is a strong and moderate evidence that 21 of the 27 identified factors can influence hospice staff well-being. These 21 factors can be grouped into three categories: (1) those that are specific to the hospice environment and role, such as the complexity and diversity of the hospice role; (2) those that have been found to be associated with well-being in other similar settings, such as relationships with patients and their families; and (3) those that affect workers regardless of their role and work environment, that is, that are not unique to working in a healthcare role, such as workload and working relationships. There was strong evidence that neither staff demographic characteristics nor education level can influence well-being. DISCUSSION: The factors identified in this review highlight the importance of assessing both positive and negative domains of experience to determine coping interventions. Hospice organisations should aim to offer a wide range of interventions to ensure their staff have access to something that works for them. These should involve continuing or commencing initiatives to protect the factors that make hospices good environments in which to work, as well as recognising that hospice staff are also subject to many of the same factors that affect psychological well-being in all work environments. Only two studies included in the review were set in children's hospices, suggesting that more research is needed in these settings. PROSPERO REGISTRATION NUMBER: CRD42019136721 (Deviations from the protocol are noted in Table 8, Supplementary material).
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Identifier
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<a href="https://spcare.bmj.com/content/early/2023/04/24/spcare-2022-004012">10.1136/spcare-2022-004012</a>
2023
Bedendo A
Beresford B
BMJ Supportive and Palliative Care
Education And Training
Fisher V
Fraser L
Golder S
Hospice Care
Hospices
June 2022 List
Mukherjee S
O'Neill M
Papworth A
Psychological care
Supportive Care
Taylor J
Ziegler L
-
Dublin Core
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Title
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July 2023 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
July List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2023.05.011" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2023.05.011</a>
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Title
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Pediatric Palliative Care at Home: A Prospective Study on Subcutaneous Drug Administration
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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drug administration; Home Care Services; home care services hospital-based; Palliative Care; Pediatrics; Prospective Studies; subcutaneous infusions; supportive care; symptom management
Creator
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García-López I; Chocarro-González L; Martín-Romero I; Vázquez-Sánchez JM; Avilés-Martínez M; Martino-Alba R
Description
An account of the resource
CONTEXT: The subcutaneous route is a useful alternative for drug administration in palliative care. Although there is scientific evidence on its use in adult patients, the literature in pediatric palliative care is almost nonexistent. OBJECTIVES: To describe the experience of a pediatric palliative care unit (PPCU) with in-home subcutaneous drug administration symptom control. METHODS: Prospective observational study of patients receiving home-based subcutaneous treatment administered as part of a PPCU treatment regimen over 16 months. Analysis includes demographic and clinical variables and treatment received. RESULTS: Fifty-four different subcutaneous lines were inserted in the 15 patients included, mainly in the thigh (85.2%). The median time of needle in situ was 5.5 days (range: 1-36 days). A single drug was administered in 55.7% of treatments. The most frequently used drugs were morphine chloride (82%) and midazolam (55.7%). Continuous subcutaneous infusion was the predominant administration route (96.7%), with infusion rates oscillating between 0.1 mL/h and 1.5 mL/h. A statistically significant relationship was found between the maximum infusion rate and induration onset. Of the 54 lines placed, 29 (53.7%) had an associated complication requiring line removal. The primary cause for removal was insertion-site induration (46.3%). Subcutaneous lines were mainly used to manage pain, dyspnea, and epileptic seizures. CONCLUSION: In the pediatric palliative care patients studied, the subcutaneous route is most frequently used for administering morphine and midazolam in continuous infusion. The main complication was induration, especially with longer dwell times or higher infusion rates. However, further studies are required to optimize management and prevent complications.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2023.05.011" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.05.011</a>
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2023
Avilés-Martínez M
Chocarro-González L
Drug Administration
García-López I
home care services
home care services hospital-based
Journal of Pain and Symptom Management
July List 2023
Martín-Romero I
Martino-Alba R
Palliative Care
Pediatrics
Prospective Studies
subcutaneous infusions
Supportive Care
Symptom Management
Vázquez-Sánchez JM
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2020-002722" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjspcare-2020-002722</a>
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Paediatric Relapsed Acute Leukaemia: Curative Intent Chemotherapy Improves Quality Of Life
Publisher
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BMJ Supportive and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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quality of life; survivorship; paediatrics; supportive care; symptoms and symptom management; leukaemia
Creator
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Salaverria C; Plenert E; Vasquez R; Fuentes-Alabi S; Tomlinson GA; Sung L
Description
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OBJECTIVES: Paediatric patients with leukaemia with relapse or induction failure have poor prognosis. Anticipated quality of life (QoL) is important in treatment decision making. The objective was to determine if curative intent at relapse or induction failure, when compared with palliative intent, was associated with child's physical health, pain or general fatigue and parents' QoL over time among patients with paediatric leukaemia in El Salvador. METHODS: This was a prospective observational cohort study. Children 2-18 years with acute leukaemia at first relapse or induction failure were eligible. Assessments occurred every 2 months for up to 2 years using validated proxy report and self-report scales, where guardians were the primary respondents. Initial curative or palliative intent was categorised at enrolment by physicians. The impact of initial intent on QoL was assessed using linear mixed effects models and interaction between QoL and time. RESULTS: Of the 60 families enrolled, initial treatment intent was curative in 31 (51.7%) and palliative in 29 (48.3%). During the 2-year observation period, 44 children died. Initial curative intent significantly improved child's physical health (estimate=8.4, 95% CI 5.1 to 11.6), pain (estimate=5.4, 95% CI 1.5 to 9.2) and fatigue (estimate=6.6, 95% CI 3.2 to 9.9) compared with palliative intent, but not parents' QoL (estimate=1.0, 95% CI -0.8 to 2.8). CONCLUSIONS: Among paediatric patients with acute leukaemia at relapse or induction failure, initial curative intent treatment plan was associated with better physical health, pain and fatigue when compared with palliative intent. A curative approach may be a reasonable option for patients with acute leukaemia even when prognosis is poor.
Identifier
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<a href="http://doi.org/10.1136/bmjspcare-2020-002722" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2020-002722</a>
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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).
2021
2021 Special Edition - Oncology
BMJ Supportive and Palliative Care
Fuentes-Alabi S
leukaemia
Paediatrics
Plenert E
Quality Of Life
Salaverria C
Sung L
Supportive Care
Survivorship
symptoms and symptom management
Tomlinson GA
Vasquez R
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
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
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2021-003031" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjspcare-2021-003031</a>
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Title
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Children and Adolescent Solid Tumours and High-Intensity End-Of-Life Care: What Can Be Done to Reduce Acute Care Admissions?
Publisher
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BMJ Supportive and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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terminal care; quality of life; paediatrics; supportive care; brain
Creator
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Podda MG; Schiavello E; Clerici CA; Luksch R; Terenziani M; Ferrari A; Casanova M; Spreafico F; Meazza C; Biassoni V; Chiaravalli S; Puma N; Bergamaschi L; Gattuso G; Sironi G; Nigro O; Massimino M
Description
An account of the resource
Despite improvements in survival, cancer remains the leading cause of non-accidental death in children and adolescents, who risk receiving high-intensity end-of-life (HI-EOL) care. OBJECTIVE: To analyse treatments for relapses (particularly in the last weeks of life), assess their impact on the EOL, identify patients most likely to receive HI-EOL care and examine whether palliative care services can contain the intensity of EOL care. METHODS: This retrospective study involved patients treated at the paediatric oncology unit of the Istituto Nazionale Tumori in Milan who died between 2018 and 2020. The primary outcome was HI-EOL care, defined as: ≥1 session of intravenous chemotherapy <14 days before death; ≥1 hospitalisation in intensive care in the last 30 days of life and ≥1 emergency room admission in the last 30 days of life. RESULTS: The study concerned 68 patients, and 17 had HI-EOL care. Patients given specific in-hospital treatments in the last 14 days of their life more frequently died in hospital. Those given aggressive EOL care were less likely to die at home or in the hospice. Patients with central nervous system (CNS) tumours were more likely to have treatments requiring hospitalisation, and to receive HI-EOL care. CONCLUSION: These results underscore the importance of considering specific treatments at the EOL with caution. Treatments should be administered at home whenever possible.The early activation of palliative care, especially for fragile and complicated patients like those with CNS cancers, could help families cope with the many problems they face.
Identifier
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<a href="http://doi.org/10.1136/bmjspcare-2021-003031" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2021-003031</a>
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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).
2021
2021 Special Edition - Oncology
Bergamaschi L
Biassoni V
BMJ Supportive and Palliative Care
Brain
Casanova M
Chiaravalli S
Clerici CA
Ferrari A
Gattuso G
Luksch R
Massimino M
Meazza C
Nigro O
Paediatrics
Podda MG
Puma N
Quality Of Life
Schiavello E
Sironi G
Spreafico F
Supportive Care
Terenziani M
Terminal Care
-
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
2022 Special Edition 3 - Oncology 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
2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.05.007" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.05.007</a>
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Title
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The Supportive Care Clinic: A Novel Model of Embedded Pediatric Palliative Oncology Care
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Creator
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Brock KE; DeGroote NP; Roche A; Lee A; Wasilewski K
Description
An account of the resource
CONTEXT: Pediatric palliative care (PPC) improves quality of life and end-of-life outcomes for children with cancer, but often occurs late in the disease course. The Supportive Care Clinic (SCC) was launched in 2017 to expand outpatient PPC access. OBJECTIVES: To describe the inaugural four years (2017-2021) of an academic, consultative, embedded SCC within pediatric oncology. METHODS: Descriptive statistics (demographic, disease, treatment, visit, and end-of-life) and change over time were calculated. RESULTS: During the first four years, 248 patients (51.6% male; 58.1% White; 35.5% Black; 13.7% Hispanic/Latino) were seen in SCC, totaling 1,143 clinic visits (median 4, IQR 2,6), including 248 consultations and 895 follow-up visits. Clinic visits grew nearly 300% from year one to four. Primary diagnoses were central nervous system tumor (41.9%), solid tumor (37.5%), and leukemia/lymphoma (17.3%). The first point of PPC contact became SCC (70.6%) for most referred patients. Among the 136 deceased patients (54.8%), 77.9% had a do-not-resuscitate or Physician Orders for Life Sustaining Treatment in place, and 72.8% received hospice care. When known (n = 112), 89.3% died in their preferred location. The time from SCC consultation to death increased from 74 to 226 days over the four years (P < 0.0001). The proportion of SCC consultations that occurred greater than 90 days from death increased from 39.1% in year one to 85.0% in year four. CONCLUSION: Embedded SCC clinics can be successful, achieve steady growth, improve referrals and timing of PPC, and enhance end-of-life care for children with cancer. Large pediatric cancer centers should include SCC outpatient services.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2022.05.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.05.007</a>
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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).
2022
2022 Special Edition 3 - Oncology List
Brock KE
DeGroote NP
End Of Life
Journal of Pain and Symptom Management
Lee A
outpatient clinic
palliative oncology
Pediatric Oncology
Pediatric Palliative Care
Roche A
Supportive Care
Wasilewski K
-
Dublin Core
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Title
A name given to the resource
2020 Oncology 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
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2019-002005" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2019-002005</a>
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Title
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Preferred place of death in paediatric, teenage and young adult haemato-oncology patients: a retrospective review
Publisher
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BMJ supportive & palliative care
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
home care; supportive care; hospice care; cancer; paediatrics; end-of-life care
Creator
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Stilwell P; Bhatt A; Mehta K; Carter B; Bisset M; Soanes L; Shankar A
Description
An account of the resource
OBJECTIVES: Identifying the preferred place of death for children/young people with cancer and determining whether this is achieved is pertinent to inform palliative care service provision. The aims of this retrospective case series review were to determine where children/young people with cancer want to die and whether their preferred place of death is achieved. METHOD(S): Clinical/demographic details, including preferred and actual places of death, were recorded for 121 patients who died between 2012 and 2016 at a tertiary haematology-oncology centre. A logistic regression model was used to determine the odds of achieving the preferred place of death in patient subgroups. RESULT(S): 74 (61%) patients had a documented discussion regarding place of death preference. Where a preferred location was identified, 72% achieved it. All patients who wanted to die in the hospital (n=17) or a hospice (n=9) did, but only 58% of patients who wanted to die at home (n=40) achieved this. Of the 42% (n=17) who wanted to die at home but did not, 59% of these were due to rapid deterioration in clinical status shortly after the discussion. Having supportive treatment in the last month of life was associated with increased odds of achieving the preferred place of death versus those who were undergoing chemotherapy/radiotherapy (OR 3.19, 95%CI 1.04 to 9.80, p value=0.04). CONCLUSION(S): Where hospice/hospital was chosen as the preferred place of death, this was always achieved. Achieving home as the preferred place of death was more challenging and frequently prevented by rapid clinical deterioration. Clinicians should be encouraged to address end-of-life preferences at an early stage, with information provided adequately. Further research should explore implications of these findings on both end-of-life experience and overall service provision. Copyright © Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjspcare-2019-002005" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2019-002005</a>
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2020
Bhatt A
Bisset M
BMJ Supportive & Palliative Care
Cancer
Carter B
End-of-life Care
Home Care
Hospice Care
Mehta K
Oncology 2020 List
Paediatrics
Shankar A
Soanes L
Stilwell P
Supportive Care
-
Dublin Core
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Title
A name given to the resource
2020 Oncology 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
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1089/jayao.2020.0081" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jayao.2020.0081</a>
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Title
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Palliative Care Referral Patterns for Adolescent and Young Adult Patients at a Comprehensive Cancer Center
Publisher
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Journal of adolescent and young adult oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
palliative care; supportive care; cancer care continuum; referral patterns; symptom burden
Creator
An entity primarily responsible for making the resource
Lockwood B J; Ntukidem O L; Ehrman S E; Schnell P M; Klemanski D L; Bhatnagar B; Lustberg M
Description
An account of the resource
Palliative care (PC) serves a valuable role throughout the disease trajectory for adolescents and young adults (AYAs) living with cancer. A 3-year retrospective chart review was performed to characterize AYA PC referral patterns in patients aged 18-39 years to identify strategies for improving PC access. Despite known benefits, AYA referrals to PC during oncologic treatment occurred only for a small percentage of eligible patients (8.4%), largely occurred in the inpatient setting (73%), and were more likely in specific cancer types with high symptom burden and/or poor survival, with the greatest penetrance noted in lung cancer (51%).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jayao.2020.0081" target="_blank" rel="noreferrer noopener">10.1089/jayao.2020.0081</a>
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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).
2020
Bhatnagar B
cancer care continuum
Ehrman S E
Journal Of Adolescent And Young Adult Oncology
Klemanski D L
Lockwood B J
Lustberg M
Ntukidem O L
Oncology 2020 List
Palliative Care
referral patterns
Schnell P M
Supportive Care
symptom burden
-
Dublin Core
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Title
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2020 Oncology List
Text
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Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1136/bmjopen-2020-037251" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjopen-2020-037251</a>
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Title
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Pain Squad+ smartphone app to support real-time pain treatment for adolescents with cancer: protocol for a randomised controlled trial
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BMJ Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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pediatrics; supportive care; pain; cancer; protocol; randomised controlled trial; smartphone app; symptom treatment
Creator
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Jibb L; Nathan P C; Breakey V; Fernandez C; Johnston D; Lewis V; McKillop S; Patel S; Sabapathy C; Strahlendorf C; Victor J C; Moretti M E; Nguyen C; Hundert A; Cassiani C; El-Khechen R G; Insull H; Hamilton R; Fang G; Kuczynski S; Stinson J
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INTRODUCTION: Pain negatively affects the health-related quality of life (HRQL) of adolescents with cancer. The Pain Squad+ smartphone-based application (app), has been developed to provide adolescents with real-time pain self-management support. The app uses a validated pain assessment and personalised pain treatment advice with centralised decision support via a registered nurse to enable real-time pain treatment in all settings. The algorithm informing pain treatment advice is evidence-based and expert-vetted. This trial will longitudinally evaluate the impact of Pain Squad+, with or without the addition of nurse support, on adolescent health and cost outcomes. METHODS AND ANALYSIS: This will be a pragmatic, multicentre, waitlist controlled, 3-arm parallel-group superiority randomised trial with 1:1:1 allocation enrolling 74 adolescents with cancer per arm from nine cancer centres. Participants will be 12 to 18 years, English-speaking and with >/=3/10 pain. Exclusion criteria are significant comorbidities, end-of-life status or enrolment in a concurrent pain study. The primary aim is to determine the effect of Pain Squad+, with and without nurse support, on pain intensity in adolescents with cancer, when compared with a waitlist control group. The secondary aims are to determine the immediate and sustained effect over time of using Pain Squad+, with and without nurse support, as per prospective outcome measurements of pain interference, HRQL, pain self-efficacy and cost. Linear mixed models with baseline scores as a covariate will be used. Qualitative interviews with adolescents from all trial arms will be conducted and analysed. ETHICS AND DISSEMINATION: This trial is approved by the Hospital for Sick Children Research Ethics Board. Results will provide data to guide adolescents with cancer and healthcare teams in treating pain. Dissemination will occur through partnerships with stakeholder groups, scientific meetings, publications, mass media releases and consumer detailing. TRIAL REGISTRATION NUMBER: NCT03632343 (ClinicalTrials.gov).
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<a href="http://doi.org/10.1136/bmjopen-2020-037251" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2020-037251</a>
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2020
Bmj Open
Breakey V
Cancer
Cassiani C
El-Khechen R G
Fang G
Fernandez C
Hamilton R
Hundert A
Insull H
Jibb L
Johnston D
Kuczynski S
Lewis V
McKillop S
Moretti M E
Nathan P C
Nguyen C
Oncology 2020 List
Pain
Patel S
Pediatrics
protocol
randomised controlled trial
Sabapathy C
smartphone app
Stinson J
Strahlendorf C
Supportive Care
symptom treatment
Victor J C
-
Dublin Core
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Title
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2020 Oncology 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
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1007/s00520-020-05671-y" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00520-020-05671-y</a>
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Title
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Association of a pediatric palliative oncology clinic on palliative care access, timing and location of care for children with cancer
Publisher
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Supportive Care in Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Pediatric oncology; Pediatric palliative care; Supportive care; End-of-life
Creator
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Brock K E; Allen K E; Falk E; Velozzi-Averhoff C; DeGroote N P; Klick J; Wasilewski-Masker K
Description
An account of the resource
BACKGROUND: Most pediatric palliative care (PPC) services are inpatient consultation services and do not reach patients and families in the outpatient and home settings, where a vast majority of oncology care occurs. We explored whether an embedded pediatric palliative oncology (PPO) clinic is associated with receipt and timing of PPC and hospital days in the last 90 days of life. METHODS: Oncology patients (ages 0-25) with a high-risk event (death, relapse/progression, and/or phase I/II clinical trial enrollment) between 07/01/2015 and 06/30/2018 were included. PPO clinic started July 2017. Two cohorts were defined: pre-PPO (high-risk event(s) occurring 07/01/2015-06/30/2017) and post-PPO (high-risk event(s) occurring 07/01/2017-06/30/2018). Descriptive statistics were performed; demographic, disease course, and outcomes variables across cohorts were compared. RESULTS: A total of 426 patients were included (pre-PPO n = 235; post-PPO n = 191). Forty-seven patients with events in both pre- and post-PPO cohorts were included in the post-PPO cohort. Mean age at diagnosis was 8 years. Diagnoses were evenly distributed among solid tumors, brain tumors, and leukemia/lymphoma. Post-PPO cohort patients received PPC more often (45.6% vs. 21.3%, p < 0.0001), for a longer time before death than the pre-PPO cohort (median 88 vs. 32 days, p = 0.027), and spent fewer days hospitalized in the last 90 days of life (median 3 vs. 8 days, p = 0.0084). CONCLUSION: A limited-day, embedded PPO clinic was associated with receipt of PPC and spending more time at home in patients with cancer who had high-risk events. Continued improvements to these outcomes would be expected with additional oncology provider education and PPO personnel.
Identifier
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<a href="http://doi.org/10.1007/s00520-020-05671-y" target="_blank" rel="noreferrer noopener">10.1007/s00520-020-05671-y</a>
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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).
2020
Allen K E
Brock K E
DeGroote N P
end-of-life
Falk E
Klick J
Oncology 2020 List
Pediatric Oncology
Pediatric Palliative Care
Supportive Care
Supportive Care In Cancer
Velozzi-Averhoff C
Wasilewski-Masker K
-
Dublin Core
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Title
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2019 Oncology List
Text
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Citation List Month
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1080/08880018.2019.1630537" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/08880018.2019.1630537</a>
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Title
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Medical marijuana use for pediatric oncology patients: single institution experience
Publisher
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Pediatric Hematology and Oncology.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adolescent; adult; adverse drug reaction; anxiety; article; burn; cancer patient; cancer therapy; child; childhood cancer; clinical article; drug safety; drug therapy; female; human; male; medical cannabis; Medical marijuana; microcapsule; mood; nausea and vomiting; pain; palliative therapy; pediatric oncology; prescription; side effect; sleep; smoke; smoking; supportive care; throat; vaporization; young adult
Creator
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Ofir R; Bar-Sela G; Weyl Ben-Arush M; Postovsky S
Description
An account of the resource
Medical marijuana (MM) is widespread in many medical fields, including oncology, with limited use in pediatric oncology where research is scarce and often shows conflicting results. This research focuses on alleviating side effects of anticancer treatment as an integral part of supportive and palliative care of children with cancer. We report our experience with MM treatment in 50 children, adolescents, and young adults with different types of cancer during 2010-2017. The main indications for prescriptions were nausea and vomiting, decreased mood, disturbed sleep, and pain. The medication was supplied to 30 patients via oil drops (60%) and 11 via smoking (22%), followed by vaporization, capsules, or combinations of various routes. Positive effects were reported by verbal children and parents in 80% of cases. MM was generally well tolerated with few patients reporting toxicity, with the most common adverse reactions being burning in the throat and anxiety attacks in subjects who chose to smoke the product. We conclude that MM may serve as a potentially useful complementary therapy to conventional supportive treatment of children suffering from cancer at the end of life. Further research is needed on the safety and efficacy and the consequences of prolonged use in pediatric populations. Copyright © 2019, © 2019 Taylor & Francis Group, LLC.
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<a href="http://doi.org/10.1080/08880018.2019.1630537" target="_blank" rel="noreferrer noopener">10.1080/08880018.2019.1630537</a>
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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
Adult
Adverse Drug Reaction
anxiety
Article
Bar-Sela G
burn
Cancer Patient
Cancer Therapy
Child
Childhood Cancer
Clinical Article
Drug Safety
Drug Therapy
Female
Human
Male
medical cannabis
Medical Marijuana
microcapsule
Mood
Nausea And Vomiting
Ofir R
Oncology 2019 List
Pain
Palliative Therapy
Pediatric Hematology and Oncology.
Pediatric Oncology
Postovsky S
prescription
Side Effect
Sleep
smoke
Smoking
Supportive Care
throat
vaporization
Weyl Ben-Arush M
Young Adult
-
Dublin Core
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Title
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February 2020 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
February 2020 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2019-001934" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2019-001934</a>
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Title
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Paediatric palliative care: a systematic review
Publisher
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BMJ Supportive & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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paediatrics; service evaluation; supportive care; symptoms and symptom management
Creator
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Nilsson S; Ohlen J; Hessman E; Brännström M
Description
An account of the resource
Objectives To review literature relating to evidence, context and facilitation to describe knowledge translation in paediatric palliative care. Paediatric palliative care requires competences including both paediatric specialists as well as services that are developed for this purpose, and there is a need to facilitate paediatric palliative care knowledge translation. Promoting Action on Research Implementation in the Health Services (PARiHS) is a framework for knowledge translation, which highlights the relationships between evidence, context and facilitation. PARiHS framework has been revised and updated in a new version called i-PARiHS. Methods The electronic databases AgeLine, CINAHL, The Cochrane Library, PsycINFO, PubMed and Scopus were searched. Papers included were limited to English and Swedish publications and restricted to publications dated between 1993 and August 2019. All types of observational and experimental studies using any research design were included. Results and conclusions Thirty-eight articles were included and there was a common vision about how and when palliative care should be offered to children. The i-PARiHS was used as a lens to describe the knowledge translation in paediatric palliative care. Symptom relief was the most commonly described evidence-based strategy, and the hospital environment was the most commonly described context. Different types of education were the most commonly used strategies to facilitate knowledge translation. The results mainly focused on increasing knowledge of palliative care in paediatric care. To sum up, the results report strategies to achieve knowledge translation of paediatric palliative care, and these can be interpreted as a guideline for how this process can be facilitated. Trial registration number CRD42018100663.
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<a href="http://doi.org/10.1136/bmjspcare-2019-001934" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2019-001934</a>
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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
BMJ Supportive & Palliative Care
Brännström M
February 2020 List
Hessman E
Nilsson S
Ohlen J
Paediatrics
Service Evaluation
Supportive Care
symptoms and symptom management
-
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
Backlog
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2014-000653.17" target="_blank" rel="noreferrer">http://doi.org/10.1136/bmjspcare-2014-000653.17</a>
<a href="http://spcare.bmj.com/content/4/1/110.3" target="_blank" rel="noreferrer">http://spcare.bmj.com/content/4/1/110.3</a>
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Title
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Recruiting Parents to Paediatric Palliative Care Research: Impact of Low Invitation Rates on Sample Bias
Publisher
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Bmj Supportive & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Supportive care
Creator
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Crocker JC; Beecham EC; Kelly P; Dinsdale AD; Hemsley J; Jones L; Bluebond-Langner M
Description
An account of the resource
Introduction Recruitment in paediatric palliative care is widely reported as challenging, with low rates of invitation by clinicians. The impact of this on sample bias is unknown. Aim(s) and method(s) We studied recruitment to a qualitative interview study about parental decision making for children cared for by a specialist palliative care (PC) team. PC clinicians were encouraged to introduce the study to parents over 12 months. With ethical approval, we used information from the PC team database and feedback from clinicians to explore the impact of low invitation rates on sample bias. Results The families of 519 living and 73 deceased patients were retrospectively identified as potentially eligible for recruitment. Clinicians invited parents of 28 (5.4%) living patients compared to 21 (28.8%) deceased patients (p=0.0001). On multivariable analyses, there was no association between patient demographics and invitation, but for living patients, total and out-of-hours contact time between family and PC team while eligible were independently associated with invitation (p<0.05). The most common reasons clinicians gave for not inviting parents of living and deceased patients were little or no contact with them and perceived burden. Conclusion(s) Invitation rates were especially low among parents of living patients. There was no evidence that this led to major demographic bias. However, the strong influence of family contact may have introduced bias potentially relevant to the project (e.g. patient stability and parent-clinician relationships) that we were unable to measure. We recommend that researchers consider levels of patient contact when planning studies requiring recruitment via clinicians.
2014-03
Identifier
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<a href="http://doi.org/10.1136/bmjspcare-2014-000653.17" target="_blank" rel="noreferrer">10.1136/bmjspcare-2014-000653.17</a>
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Type
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Journal Article
2014
Backlog
Beecham EC
Bluebond-Langner M
BMJ Supportive & Palliative Care
Crocker JC
Dinsdale AD
Hemsley J
Jones L
Journal Article
Kelly P
Supportive Care
-
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
Backlog
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2014-000653.24" target="_blank" rel="noreferrer">http://doi.org/10.1136/bmjspcare-2014-000653.24</a>
<a href="http://spcare.bmj.com/content/4/1/112.3" target="_blank" rel="noreferrer">http://spcare.bmj.com/content/4/1/112.3</a>
Dublin Core
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Title
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Palliative Care in the Young Person's Community: Support for Schools
Publisher
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Bmj Supportive & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Supportive care
Creator
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Craig F; Kelly P; Boden C; Samuel J
Description
An account of the resource
Introduction Being part of a school community, where young people develop peer relationships and experience a sense of their value in society, is integral to childhood/young adulthood. Supporting terminally ill young people to maintain a role within this community can be crucial to their overall well –being. Essential to this is the ability of school staff to support their physical and psychological health while in school, yet little is known about the support they require to facilitate this. Aim(s) and method(s) We utilised survey methods to investigate the confidence and support needs of school staff. Results 78% of the target population completed the survey. In discussions with students, staff were confident ascertaining concerns about the effect of their condition on schooling and participation in activities, but less confident discussing concerns about illness, death and dying. In discussions with parents, staff were relatively confident exploring concerns the child might have about illness and dying and symptoms they may experience. However, they were less confident discussing the option of the child staying at school. Respondents identified meetings in school with Health Care Professional's, the availability of telephone advice during the school day and written medical plans amongst the most valuable forms of support. Conclusion(s) School staff are confident when talking to parents/students about symptom progression and impact on education, but are uncertain what this means in terms of school participation. HCP's must work directly with schools to provide real-time advice and written plans, to enable our patients to be supported within their school community.
2014-03
Identifier
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<a href="http://doi.org/10.1136/bmjspcare-2014-000653.24" target="_blank" rel="noreferrer">10.1136/bmjspcare-2014-000653.24</a>
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Type
The nature or genre of the resource
Journal Article
2014
Backlog
BMJ Supportive & Palliative Care
Boden C
Craig F
Journal Article
Kelly P
Samuel J
Supportive Care
-
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
Backlog
URL Address
<a href="http://doi.org/10.2147/COAYA.S29757" target="_blank" rel="noreferrer">http://doi.org/10.2147/COAYA.S29757</a>
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Title
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Palliative care for adolescents and young adults with cancer
Publisher
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Clinical Oncology In Adolescents And Young Adults
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
quality of life; end of life; Disease Specific; Pediatric oncology; psychosocial needs; psychosocial oncology; psychosocial outcomes; Supportive care
Creator
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Rosenberg A; Wolfe J
Description
An account of the resource
Adolescents and young adults (AYAs) with cancer represent a unique and challenging group of patients with distinct developmental and psychosocial needs that may be unrecognized or unmet during their cancer experience. Palliative care refers to the total care of a patient, regardless of his or her disease status, and aims to improve quality of life by controlling symptoms and alleviating physical, social, psychological, and spiritual suffering. Integrating palliative care into standard oncology practice for AYAs is therefore valuable, if not imperative, in improving their overall cancer experience. In this review, we aimed to describe the scope, benefits, and challenges of palliative care for AYA oncology patients. We provide a broad impression of the existing literature describing or investigating palliative care in this population. Put together, the evidence suggests that palliative care is not only needed, but can also be critically beneficial to patients, families, and health care professionals alike. As we increase public and professional awareness of the needs and applications of palliative care for AYA patients with cancer, we will ultimately enable better psychosocial outcomes of the AYA patients and their larger communities.
2013
Identifier
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<a href="http://doi.org/10.2147/COAYA.S29757" target="_blank" rel="noreferrer">10.2147/COAYA.S29757</a>
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Type
The nature or genre of the resource
Journal Article
2013
Backlog
Clinical Oncology In Adolescents And Young Adults
Disease Specific
End Of Life
Journal Article
Pediatric Oncology
psychosocial needs
psychosocial oncology
psychosocial outcomes
Quality Of Life
Rosenberg A
Supportive Care
Wolfe J
-
Dublin Core
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Title
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Oncology
Text
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Citation List Month
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1002/pbc.26826" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.26826</a>
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Title
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Medical marijuana in pediatric oncology: A review of the evidence and implications for practice
Publisher
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Pediatric Blood And Cancer
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 Marijuana; Pediatric Oncology; Supportive Care
Creator
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Ananth P; Reed-Weston A; Wolfe J
Description
An account of the resource
Medical marijuana (MM) has become increasingly legal at the state level and accessible to children with serious illness. Pediatric patients with cancer may be particularly receptive to MM, given purported benefits in managing cancer-related symptoms. In this review, we examine the evidence for MM as a supportive care agent in pediatric oncology. We describe the current legal status of MM, mechanism of action, common formulations, and potential benefits versus risks for pediatric oncology patients. We offer suggestions for how providers might approach MM requests. Throughout, we comment on avenues for future investigation on this growing trend in supportive care.
Identifier
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<a href="http://doi.org/10.1002/pbc.26826" target="_blank" rel="noreferrer">10.1002/pbc.26826</a>
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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).
2017
Ananth P
Medical Marijuana
Oncology 2017 List
Pediatric Blood and Cancer
Pediatric Oncology
Reed-Weston A
Supportive Care
Wolfe J
-
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
April 2017 List
Dublin Core
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Title
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Paediatric Palliative Care In The Asia Pacific Region: Where Are We Now?
Publisher
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Bmj Supportive & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Asia Southeastern; Child; Child Health Services/standards/statistics & Numerical Data; Far East; Humans; Oceania; Paediatrics; Palliative Care/standards/statistics & Numerical Data; Service Evaluation; Supportive Care; Terminal Care
Creator
An entity primarily responsible for making the resource
Chong PH; Hamsah E; Goh C
Identifier
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10.1136/bmjspcare-2014-000812
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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).
2017
April 2017 List
Asia Southeastern
BMJ Supportive & Palliative Care
Child
Child Health Services/standards/statistics & Numerical Data
Chong PH
Far East
Goh C
Hamsah E
Humans
Oceania
Paediatrics
Palliative Care/standards/statistics & Numerical Data
Service Evaluation
Supportive Care
Terminal Care