1
40
92
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Dublin Core
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Title
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2023 Special Edition 5 - Low Resource Setting 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
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.3389/fonc.2023.1112788" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fonc.2023.1112788</a>
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Title
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The burden and scope of childhood cancer in displaced patients in Jordan: The King Hussein Cancer Center and Foundation Experience
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Frontiers in Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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child; Neoplasms; childhood cancer; article; female; human; major clinical study; male; social support; palliative therapy; health care cost; follow up; retinoblastoma; cancer patient; overall survival; cancer registry; leukemia; brain tumor; cancer center; refugee; lymphoma; bone sarcoma; Jordanian; public health; Jordan; drug cost; Foundations; Iraqi; Syrian; Yemeni
Creator
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Rihani R; Jeha S; Nababteh M; Rodriguez-Galindo C; Mansour A; Sultan I
Description
An account of the resource
Introduction: Jordan hosts one of the highest numbers of refugees per capita in the world, with the Syrian crisis leading to an influx of displaced persons to the already vulnerable population. However, limited resources and a lack of cancer-care strategies have made it difficult for refugees in Jordan to access quality cancer care. The King Hussein Cancer Center (KHCC) and Foundation (KHCF) have played a pivotal role in providing financial and medical support for displaced children with cancer, treating 968 non-Jordanian children with cancer between 2011-2022, with a median age of 6 years. Of these, 84% were fully funded by KHCF, and nationalities included Syrians (29%), Palestinians (26%), Iraqis (23%), and Yemenis (17%). Cancer diagnoses included solid tumors (44%), leukemia (23%), lymphoma (13%), bone sarcomas (9.5%), and retinoblastoma (9.1%). The median cost of treatment was JOD 18,000 (USD 25,352), with a total estimated cost of JOD 23.8 million (USD 33.5 million). More recently, in partnership with St. Jude Children's Research Hospital (SJCRH), two successive humanitarian funds (HF) were established to optimize cancer care for displaced children in Jordan.
Results: Between February 2018 and September 2022, 51 children were fully treated on KHCC-SJCRH-HF, with a median age of 6 years and nationalities including Syrians (80%), Iraqis (6%), and Yemenis (8%). The most common cancer diagnoses were leukemia (41%), lymphoma (25%), solid tumors (24%), retinoblastoma (6%), and brain tumors (4%). Of these, 94% are alive and 51% are still receiving coverage. The median coverage for patients was JOD 21,808 (USD 30,715), and the total cost of treatment on KHCC/KHCF-SJCRH/American Lebanese Syrian-Associated Charities HF1 and HF2 was JOD 1.44 million (USD 1.97 million) and JOD 1.18 million (USD 1.67 million), respectively.
Conclusion: This experience highlights the high burden of displaced children with cancer in Jordan, and the importance of local foundations like KHCC/KHCF and partnerships with international partners like SJCRH in providing lifesaving humanitarian initiatives and quality cancer care. Innovative cancer-care delivery models and sustainable financing are essential to ensure continuous coverage and access to cancer care for displaced persons in Jordan.
Identifier
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<a href="http://doi.org/10.3389/fonc.2023.1112788" target="_blank" rel="noreferrer noopener">10.3389/fonc.2023.1112788</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 SE5 - Low Resource Setting
Article
bone sarcoma
Brain Tumor
cancer center
Cancer Patient
Cancer Registry
Child
Childhood Cancer
drug cost
Female
Follow Up
Foundations
Frontiers in Oncology
Health Care Cost
Human
Iraqi
Jeha S
Jordan
Jordanian
Leukemia
Lymphoma
Major Clinical Study
Male
Mansour A
Nababteh M
Neoplasms
Overall Survival
Palliative Therapy
Public Health
refugee
retinoblastoma
Rihani R
Rodriguez-Galindo C
Social Support
Sultan I
Syrian
Yemeni
-
Dublin Core
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Title
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2023 Special Edition 5 - Low Resource Setting 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
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1111/ajr.12958" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/ajr.12958</a>
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Fifteen years of shared care for paediatric oncology, haematology and palliative patients across Queensland: The role of Regional Case Managers
Publisher
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Australian Journal of Rural Health
Date
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2023
Subject
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Humans; Child; Hospitals; Neoplasms/th [Therapy]; Case Management; Neoplasms; Queensland; Case Managers; Hematology
Creator
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Slater P; Hastings Y; Nicholson J; Noyes M; Benitez L; Pollock K; Peacock R; Cox A; Gunning R; Caris K; Petersen D; Henry C; Spanner R; Beckett K; Chisholm C
Description
An account of the resource
Objective: A shared care model was implemented in 2006 in Queensland to facilitate paediatric oncology, haematology and palliative care patients receiving care as close to home as possible. Following initial diagnosis, care planning and treatment at the tertiary children's hospital, appropriate local care was coordinated by Regional Case Managers (RCMs) established at each of 10 Shared Care Units (SCUs). This enabled safe and quality regional care supported by a statewide network providing clinical governance and education. This paper examines learnings from 15 years of this shared care.
Setting: Ten hospitals throughout Queensland facilitated a statewide model of shared care for paediatric oncology, haematology and palliative care patients, supported by a tertiary hub in Brisbane.
Participants: Regional Case Managers in Shared Care Units and their supporting staff.
Design: Staff from SCUs were surveyed and focus group interviews conducted.
Results: The paper reviews the attributes, knowledge and experience required for RCMs. Standards of care were supported through education workshops, clinical placements, chemotherapy credentialing, guidelines and standards. RCMs facilitated communication and information sharing with the tertiary centre, advocated for their cohort of patients locally and streamlined and supported the family's experience of care.
Conclusion: The RCM role provided invaluable clinical leadership for the care of paediatric oncology, haematology and palliative patients across Queensland. As new treatments evolve, the expertise and coordination provided by the RCMs will be even more critical. Achieving high-quality shared care outcomes is underpinned by the RCMs drive to achieve statewide safety and support for this cohort of children.
Identifier
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<a href="http://doi.org/10.1111/ajr.12958" target="_blank" rel="noreferrer noopener">10.1111/ajr.12958</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 SE5 - Low Resource Setting
Australian Journal of Rural Health
Beckett K
Benitez L
Caris K
Case Management
Case Managers
Child
Chisholm C
Cox A
Gunning R
Hastings Y
Hematology
Henry C
Hospitals
Humans
Neoplasms
Neoplasms/th [therapy]
Nicholson J
Noyes M
Peacock R
Petersen D
Pollock K
Queensland
Slater P
Spanner R
-
Dublin Core
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Title
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2023 Special Edition 5 - Low Resource Setting 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
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1002/pon.6002" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pon.6002</a>
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Title
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Unmet palliative care needs of a child with cancer in Indonesia
Publisher
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Psycho-Oncology
Date
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2023
Subject
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Humans; Child; Palliative Care; Neoplasms/th [Therapy]; Neoplasms; Only Child; Hospice and Palliative Care Nursing; Indonesia
Creator
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Vassileva S; Pangarso AWS; Mulatsih S; Sitaresmi M; Kaspers G; Mostert S
Description
An account of the resource
Key points Childhood cancer survival varies greatly between high-income (80%) versus Low and middle-income countries (LMIC) (<20%). To bridge this gap, provision of aggressive curative treatment has been prioritized in latter countries. Palliative care (PC), by contrast, has received little or no attention When children who can no longer be cured from cancer continue aggressive treatment, they may suffer unnecessarily from pain, discomfort and low quality-of-life during prolonged periods In many LMIC, families are often not given the opportunity to participate in decision-making whether they want to extend the life of their children or focus on relieving pain and discomfort This case report illustrates difficulties that Indonesian families may face when their child is diagnosed with cancer, receives intensive chemotherapy despite poor prognosis and severe side-effects, and is not informed about choices of treatment children have during final illness This study highlights the importance to start PC immediately at diagnosis. Both physical and psychosocial wellbeing of patients need to be closely monitored through regular symptom burden assessments. Training on open communication in PC is required in universities and hospitals to enable shared decision-making and improve quality-of-life of children and their families
Identifier
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<a href="http://doi.org/10.1002/pon.6002" target="_blank" rel="noreferrer noopener">10.1002/pon.6002</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 SE5 - Low Resource Setting
Child
Hospice And Palliative Care Nursing
Humans
Indonesia
Kaspers G
Mostert S
Mulatsih S
Neoplasms
Neoplasms/th [therapy]
Only Child
Palliative Care
Pangarso AWS
Psycho-Oncology
Sitaresmi M
Vassileva S
-
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Title
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2023 Special Edition 5 - Low Resource Setting 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
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1186/s12904-023-01195-4" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01195-4</a>
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Title
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Impact of an outpatient palliative care consultation and symptom clusters in terminal patients at a tertiary care center in Pakistan
Publisher
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BMC 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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Humans; Female; Male; Palliative Care; Infant; Quality of Life; Syndrome; Tertiary Care Centers; Outpatients; Palliative Care; Referral and Consultation; Neoplasms/th [Therapy]; Symptom Assessment; Neoplasms; Neoplasms/co [Complications]; Neoplasms/ep [Epidemiology]; Pakistan
Creator
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Rafaqat W; Syed AR; Ahmed IM; Hashmi S; Jabeen I; Rajwani S; Qamar U; Waqar MA
Description
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Background: Patients with terminal diseases may benefit physically and psychosocially from an outpatient palliative care visit. Palliative care services are limited in Pakistan. An improved understanding of the symptom clusters present in our population is needed. The first outpatient palliative care center in Karachi, Pakistan, was established at our tertiary care institution. The primary aim of this study was to evaluate the impact of a palliative care outpatient consultation on symptom burden in patients with a terminal diagnosis. The secondary aim was to analyze the symptom clusters present in our population. Methods: Patients with a terminal diagnosis referred to our outpatient palliative department between August 2020-August 2022 were enrolled. The Edmonton Symptom Assessment Scale (ESAS) questionnaire was administered at the initial visit and the first follow-up visit at one month. Change in symptom burden was assessed using a Wilcoxon signed ranks test. A principal component analysis with varimax rotation was performed on the symptoms reported at the initial visit to evaluate symptom clusters. The palliative performance scale (PPS) was used to measure the performance status of palliative care patients. Results: Among the 78 patients included in this study, the average age was 59 ± 16.6 years, 52.6% were males, 99% patients had an oncological diagnosis, and the median duration between two visits was 14 (Q1-Q3: (7.0, 21.0) days. The median PPS level was 60% (Q1-Q3: 50-70). Overall, ESAS scores decreased between the two visits (6.0 (2.8, 11.0), p < 0.001) with statistically significant improvement in pain (5.0 vs. 2.5, p < 0.001), loss of appetite (5.0 vs. 4.0, p = 0.004), depression (2.0 vs. 0.0, p < 0.001), and anxiety (1.5 vs. 0.0, p = 0.032). Based on symptoms at the initial visit, 3 clusters were present in our population. Cluster 1 included anxiety, depression, and wellbeing; cluster 2 included nausea, loss of appetite, tiredness, and shortness of breath; and cluster 3 included drowsiness. Conclusion: An outpatient palliative care visit significantly improved symptom burden in patients with a terminal diagnosis. Patients may benefit from further development of outpatient palliative care facilities to improve the quality of life in terminally ill patients.
Identifier
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<a href="http://doi.org/10.1186/s12904-023-01195-4" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01195-4</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 SE5 - Low Resource Setting
Ahmed IM
BMC Palliative Care
Female
Hashmi S
Humans
Infant
Jabeen I
Male
Neoplasms
Neoplasms/co [complications]
Neoplasms/ep [Epidemiology]
Neoplasms/th [therapy]
Outpatients
Pakistan
Palliative Care
Qamar U
Quality Of Life
Rafaqat W
Rajwani S
Referral And Consultation
Syed AR
Symptom Assessment
Syndrome
Tertiary Care Centers
Waqar MA
-
Dublin Core
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Title
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2023 Special Edition 4 - Parent Perspectives 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
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1080/07347330903516902" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/07347330903516902</a>
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Title
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Challenges and coping styles of fathers as primary medical caretakers: a multicultural qualitative study.
Publisher
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Journal of Psychosocial Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Humans; Male; United States; Neoplasms; Middle Aged; Adult; Qualitative Research; Socioeconomic Factors; Social Support; Anemia, Sickle Cell; *Adaptation, Psychological; *Caregivers/px [Psychology]; *Fathers/px [Psychology]; *Father-Child Relations/eh [Ethnology]; Ethnicity/px [Psychology]; Family Conflict
Creator
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Wolff, Joshua; Pak, Jenny; Meeske, Kathleen; Worden, J William; Katz, Ernest
Description
An account of the resource
Research has focused heavily on mother's experiences of children with life-threatening illnesses. In contrast, fathers' experiences, especially among minorities, are scarcely discussed. This study examined the experiences of 15 fathers as primary medical caretakers of children diagnosed with cancer or sickle cell disease. Using a life story method, fathers completed semistructured interviews regarding their overall experiences. Data was analyzed using narrative analysis with multiple case studies. Results indicated single, low socioeconomic status, and immigrant fathers with limited English proficiencies were at highest risk for coping difficulties. This study also examined gender biases that men experienced and masculine norms in coping.
Identifier
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<a href="http://doi.org/10.1080/07347330903516902" target="_blank" rel="noreferrer noopener">10.1080/07347330903516902</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).
*Adaptation, Psychological
*Caregivers/px [Psychology]
*Father-Child Relations/eh [Ethnology]
*Fathers/px [Psychology]
2010
2023 SE4 - Parent Perspectives
Adult
Anemia, Sickle Cell
Ethnicity/px [Psychology]
Family Conflict
Humans
Journal Of Psychosocial Oncology
Katz, Ernest
Male
Meeske, Kathleen
Middle Aged
Neoplasms
Pak, Jenny
Qualitative Research
Social Support
Socioeconomic Factors
United States
Wolff, Joshua
Worden, J William
-
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
2023 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.12968/ijpn.2023.29.5.236" target="_blank" rel="noreferrer noopener"> http://doi.org/10.12968/ijpn.2023.29.5.236</a>
Dublin Core
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Title
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The need of patients living with cancer for palliative care
Publisher
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International Journal of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Health Services Needs and Demand; Palliative Care; Neoplasms; Anxiety; Questionnaires; Adult; Psychometrics; Adolescence; Middle Age; Health Services Accessibility; Aged; Depression; Stress Psychological; Data Analysis Software; Descriptive Research; Human; Descriptive Statistics; Nursing; Self Report; Palliative Care Nursing; Chi Square Test; Jordan; Psychological Distress; Cross Sectional Studies; Patient Attitudes; Convenience Sample; Aged 80 and Over; Cancer Patients; Spiritual Care
Creator
An entity primarily responsible for making the resource
Alnajar MK; Abdalrahim MS; Mosleh SM; Farhan M; Amro K; Darawad MW
Description
An account of the resource
Background: A comprehensive assessment of patients' problems and needs is
Identifier
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<a href="http://doi.org/10.12968/ijpn.2023.29.5.236" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2023.29.5.236</a>
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).
2023
2023 SE3 - Oncology
Abdalrahim MS
Adolescence
Adult
Aged
Aged 80 And Over
Alnajar MK
Amro K
anxiety
cancer patients
Chi Square Test
Convenience Sample
Cross Sectional Studies
Darawad MW
Data Analysis Software
Depression
Descriptive Research
Descriptive Statistics
Farhan M
Health Services Accessibility
Health Services Needs And Demand
Human
International Journal of Palliative Nursing
Jordan
Middle Age
Mosleh SM
Neoplasms
Nursing
Palliative Care
Palliative Care Nursing
Patient Attitudes
Psychological Distress
Psychometrics
Questionnaires
Self Report
Spiritual Care
Stress Psychological
-
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
2023 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1177/02692163231165100" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163231165100</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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Existential experiences and perceptions of death among children with terminal cancer: An interpretative qualitative study
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Parents; Child; Palliative Care; Quality of Life; Qualitative Research; Neoplasms; Only Child; Terminal Care; Death
Creator
An entity primarily responsible for making the resource
Lin N; Lv D; Hu Y; Zhu J; Xu H; Lai D
Description
An account of the resource
BACKGROUND: Exploring the experience and understanding of death in children with terminal cancer is important to provide them with appropriate care. However, most studies have focused on the perspectives of parents and healthcare professionals, and few have focused on the end-of-life experiences of children., AIM: To advance the understanding of end-of-life experiences and perceptions of death in children with cancer., DESIGN: Interpretative qualitative study using semi-structured interviews. Data were analyzed using reflexive thematic analysis., SETTING/PARTICIPANTS: The study was conducted at the department of oncological surgery, Children's Hospital, Zhejiang University School of Medicine. Ten children aged 8-17 with terminal cancer were included in the study., RESULTS: Four major themes (and eight sub-themes) were identified from the findings: (1) helplessness in the face of death (loneliness, loss of control); (2) desire to connect with the world they left (reluctantly to be forgotten, sense of self-worth); (3) perceptions and attitudes toward death (separating from loved ones, embracing death); (4) expectations of future life (promoting comfort, fulfilling wishes)., CONCLUSIONS: Children with terminal cancer have a strong sense of loneliness and a desire to connect with the world they have left behind. Differences in children's perceptions and attitudes about death suggest that healthcare professionals should focus on their experiences and needs and provide personalized palliative care services to children and their families to improve their quality of life.
Identifier
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<a href="http://doi.org/10.1177/02692163231165100" target="_blank" rel="noreferrer noopener">10.1177/02692163231165100</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).
2023
2023 SE3 - Oncology
Child
Death
Hu Y
Humans
Lai D
Lin N
Lv D
Neoplasms
Only Child
Palliative Care
Palliative Medicine
Parents
Qualitative Research
Quality Of Life
Terminal Care
Xu H
Zhu J
-
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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2023 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1080/07481187.2022.2142324" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/07481187.2022.2142324</a>
Dublin Core
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Title
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Protective and risk factors in the grieving process among cancer-bereaved
Publisher
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Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Parents; Female; Male; Risk Factors; Attitude to Death; Neoplasms; Quality of Life; Bereavement; Grief; Qualitative Studies; Human; Support Psychosocial; Thematic Analysis; Funding Source
Creator
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Rasouli O; Øglænd IS; Reinfjell T; Eilertsen MEB
Description
An account of the resource
This Norwegian nationwide study explored cancer-bereaved parents'
Identifier
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<a href="http://doi.org/10.1080/07481187.2022.2142324" target="_blank" rel="noreferrer noopener">10.1080/07481187.2022.2142324</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
Attitude To Death
Bereavement
Death studies
Eilertsen MEB
Female
Funding Source
Grief
Human
Male
Neoplasms
Øglænd IS
Parents
Qualitative Studies
Quality Of Life
Rasouli O
Reinfjell T
Risk Factors
Support Psychosocial
Thematic Analysis
-
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
June 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
June 2022 List
URL Address
<a href="https://bmccancer.biomedcentral.com/articles/10.1186/s12885-023-10835-0">https://bmccancer.biomedcentral.com/articles/10.1186/s12885-023-10835-0</a>
Dublin Core
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Title
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Symptom management care pathway adaptation process and specific adaptation decisions
Publisher
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BMC Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Child; Palliative Care; Critical Pathways; Neoplasms; Managed Care Programs
Creator
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Vettese E; Sherani F; King AA; Yu L; Aftandilian C; Baggott C; Agarwal V; Nagasubramanian R; Kelly KM; Freyer DR; Orgel E; Bradfield SM; Kyono W; Roth M; Klesges LM; Beauchemin M; Grimes A; Tomlinson G; Dupuis LL; Sung L
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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).
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<a href="https://bmccancer.biomedcentral.com/articles/10.1186/s12885-023-10835-0">10.1186/s12885-023-10835-0</a>
2023
Aftandilian C
Agarwal V
Baggott C
Beauchemin M
Bmc Cancer
Bradfield SM
Child
Critical Pathways
Dupuis LL
Freyer DR
Grimes A
Humans
June 2022 List
Kelly KM
King AA
Klesges LM
Kyono W
Managed Care Programs
Nagasubramanian R
Neoplasms
Orgel E
Palliative Care
Roth M
Sherani F
Sung L
Tomlinson G
Vettese E
Yu L
-
Dublin Core
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Title
A name given to the resource
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/10.1016/j.jpainsymman.2020.08.035" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2020.08.035</a>
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Title
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Definitely Mixed Feelings: The Effect of COVID-19 on Bereavement in Parents of Children Who Died of Cancer
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
2020
Subject
The topic of the resource
bereavement; Bereavement; Female; Humans; Male; Parents/psychology; Attitude to Death; Adaptation Psychological; grief; Attitude to Death; pediatric cancer; bereaved parents; Neoplasms; Neoplasms; Adaptation Psychological/physiology; Parents -- Psychosocial Factors; Disease Outbreaks; Pandemics; Covid-19; Bereavement; Coronavirus Infections/psychology; Pneumonia Viral/psychology; Arthritis Impact Measurement Scales; Coronavirus Infections -- Psychosocial Factors; Pneumonia Viral -- Psychosocial Factors; Ways of Coping Questionnaire
Creator
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Helton G; Wolfe J; Snaman JM
Description
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Context: Coronavirus disease 2019 (COVID-19) has impacted most elements of daily life, including the provision of support after a child's death and the experience of parental bereavement.Objectives: This study aims to examine ways in which COVID-19 has affected the bereavement experiences of parents whose children died of cancer before the pandemic.Methods: Parents who participated in a survey-based study examining the early grief experience were invited to complete a semistructured interview. During the interview, which focused on examining the current support for parents and other family members within the first several years after the child's death, participants were asked how COVID-19 has impacted their life and bereavement.Results: Fifteen of 33 eligible parents completed the interview; 14 were white and non-Hispanic, five were males. Parents participated an average of 19 (range 12-34) months after their child's death. COVID-19 was addressed in 13 interviews. Eleven codes were used to describe interview segments; the most commonly used codes were change in support, no effect, familiarity with uncertainty/ability to cope, and change in contact with care/research team.Conclusion: Parents identified multiple and variable ways-both positive, negative, and neutral-how COVID-19 has affected their bereavement. Many parents commented on feeling more isolated because of the inability to connect with family or attend in-person support groups, whereas others acknowledged their experience has made them uniquely positioned to cope with the uncertainty of the current situation. Clinicians must find innovative ways to connect with and support bereaved parents during this unique time.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2020.08.035" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.08.035</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
2021 Special Edition - Oncology
Adaptation Psychological
Adaptation Psychological/physiology
Arthritis Impact Measurement Scales
Attitude To Death
Bereaved Parents
Bereavement
Coronavirus Infections -- Psychosocial Factors
Coronavirus Infections/psychology
COVID-19
Disease Outbreaks
Female
Grief
Helton G
Humans
Journal of Pain and Symptom Management
Male
Neoplasms
Pandemics
Parents -- Psychosocial Factors
Parents/psychology
Pediatric Cancer
Pneumonia Viral -- Psychosocial Factors
Pneumonia Viral/psychology
Snaman JM
Ways of Coping Questionnaire
Wolfe J
-
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Title
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2021 Special Edition 1 - Low Resource Settings
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 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.1089/pmr.2020.0030" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/pmr.2020.0030</a>
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Title
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Pediatric Palliative Care for Children with Cancer in a Children's Tertiary Hospital in China: Six-Year Experience of a Pediatric Palliative Care Service
Publisher
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Palliative Medicine Reports
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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adolescent; child; infant; palliative care; China; neoplasms
Creator
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Zhang A; Bing L; Mi Q; Zhou F; Wang J
Description
An account of the resource
Background: Pediatric palliative care (PPC) does not meet current needs, particularly in low- and middle-income countries. Objective: We evaluated the first PPC team to serve patients with cancer in a tertiary children's hospital in China. Design: Single-center retrospective study. Setting/Participants: The core team members included oncologists, nurses, and a social worker. The team delivered palliative care through the outpatient clinic, consultations, a 24/7 hotline, and a hospice room located in the observation ward. Patients were referred by pediatric oncologists. We analyzed data for 92 children (54 boys and 38 girls; aged 7 months to 16 years) who required palliative care from August 2012 to August 2018. The most common primary diseases were leukemia and neuroblastoma. Measurements: We investigated the time from referral to death, symptoms during the prior month, the effects of informing children above eight years, and family satisfaction. Results: Among 88 deaths, the median time from referral to death was 17 (range 1-218) days. Most children had multiple symptoms (mean ± standard deviation 4.2 ± 3.2 per child). The most common symptoms in the last month of life were pain, loss of appetite, fatigue, fever, and dyspnea. Children above eight years who were not informed about their condition experienced more anxiety or depression. All families were satisfied with the services. Conclusions: The palliative care counseling team is feasible and could be complementary to conventional medicine in caring for children with life-limiting illnesses. This model has an important role in PPC in China or developing countries with scarce medical resources.
Identifier
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<a href="http://doi.org/10.1089/pmr.2020.0030" target="_blank" rel="noreferrer noopener">10.1089/pmr.2020.0030</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 1 - Low Resource Settings
Adolescent
Bing L
Child
China
Infant
Mi Q
Neoplasms
Palliative Care
Palliative Medicine Reports
Wang J
Zhang A
Zhou F
-
Dublin Core
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Title
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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.2021.10.016" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2021.10.016</a>
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Title
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One Size Doesn't Fit All in Early Pediatric Oncology Bereavement Support
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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Helton G; Beight L; Morris SE; Wolfe J; Snaman JM
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.10.016" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.10.016</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
Beight L
Bereavement
Child
Female
Grief
Helton G
Humans
Journal of Pain and Symptom Management
Male
Morris SE
Neoplasms
Neoplasms/px [psychology]
Parents/px [psychology]
Snaman JM
Terminal Care
Wolfe J
-
Dublin Core
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Title
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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/10.1001/jamanetworkopen.2021.21888" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1001/jamanetworkopen.2021.21888</a>
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Title
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Patient, Family, and Clinician Perspectives on Location of Death for Adolescents and Young Adults With Cancer
Publisher
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JCO Oncology Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Creator
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Odejide OO; Fisher L; Kushi LH; Chao CR; Vega B; Rodrigues G; Josephs I; Brock KE; Buchanan S; Casperson M; Cooper RM; Fasciano KM; Kolevska T; Lakin JR; Lefebvre A; Schwartz CM; Shalman DM; Wall CB; Wiener L; Altschuler A; Mack JW
Description
An account of the resource
PURPOSE: Adolescents and young adults (AYAs) with cancer have high rates of hospital deaths. It is not clear if this reflects their preferences or barriers to dying at home. METHODS: Between December 2018 and January 2021, we conducted in-depth interviews with AYAs (age 12-39 years) with stage IV or recurrent cancer, family caregivers including bereaved caregivers, and clinicians of AYAs with cancer. Patients were asked about their priorities for care including location of death, caregivers were asked what was most important in the care of their AYA family member, and clinicians were asked to reflect on priorities identified through caring for AYAs. Directed content analysis was applied to interview data, and themes regarding location of death were developed. RESULTS: Eighty individuals (23 AYAs, 28 caregivers, and 29 clinicians) participated in interviews. Most AYAs and caregivers preferred a home death. However, some AYAs and caregivers opted for a hospital death to alleviate caregiver burden or protect siblings from the perceived trauma of witnessing a home death. Lack of adequate services to manage intractable symptoms at home and insufficient caregiver support led some AYAs/caregivers to opt for hospital death despite a preference for home death. Participants acknowledged the value of hospice while also pointing out its limitations in attaining a home death. CONCLUSION: Although most AYAs prefer to die at home, this preference is not always achieved. Robust home-based services for effective symptom management and caregiver support are needed to close the gap between preferred and actual location of death for AYAs.
Identifier
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<a href="http://doi.org/10.1001/jamanetworkopen.2021.21888" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2021.21888</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
Adolescent
Adult
Altschuler A
Brock KE
Buchanan S
Caregiver
Casperson M
Chao CR
Child
Cooper RM
Fasciano KM
Fisher L
Humans
JCO Oncology Practice
Josephs I
Kolevska T
Kushi LH
Lakin JR
Lefebvre A
Mack JW
Neoplasms
Neoplasms/th [therapy]
Odejide OO
Palliative Care
Rodrigues G
Schwartz CM
Shalman DM
Vega B
Wall CB
Wiener L
Young Adult
-
Dublin Core
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Title
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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/10.1002/pbc.29533" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.29533</a>
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Title
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"Some things are even worse than telling a child he is going to die": Pediatric oncology healthcare professionals perspectives on communicating with children about cancer and end of life
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
2022
Creator
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Laronne A; Granek L; Wiener L; Feder-Bubis P; Golan H
Identifier
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<a href="http://doi.org/10.1002/pbc.29533" target="_blank" rel="noreferrer noopener">10.1002/pbc.29533</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
Child
Communication
Death
Delivery of Health Care
Feder-Bubis P
Golan H
Granek L
Health Personnel/px [psychology]
Humans
Laronne A
Male
Medical Oncology
Medical Oncology/ed [education]
Neoplasms
Neoplasms/px [psychology]
Neoplasms/th [therapy]
Pediatric Blood and Cancer
Wiener L
-
Dublin Core
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Title
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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/10.1002/cncr.34419" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/cncr.34419</a>
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Charting a path to high-quality end-of-life care for children with cancer
Publisher
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Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Creator
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Ananth P; Wolfe J; Johnston EE
Identifier
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<a href="http://doi.org/10.1002/cncr.34419" target="_blank" rel="noreferrer noopener">10.1002/cncr.34419</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
Ananth P
Cancer
Child
Documentation
Humans
Johnston EE
Neoplasms
Neoplasms/th [therapy]
Terminal Care
Wolfe J
-
Dublin Core
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Title
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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/10.1186/s12904-022-01025-z" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-022-01025-z</a>
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Title
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Quality of life in childhood advanced cancer: from conceptualization to assessment with the Advance QoL tool
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Creator
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Avoine-Blondin J; Dumont É; Marquis MA; Duval M; Sultan S
Description
An account of the resource
BACKGROUND: Advanced childhood cancer, a condition with no available cancer-focused treatment options, greatly impacts Quality of Life (QoL). We need appropriate assessment strategies to select adapted treatment targets, improve care and optimize communication. Our first goal was to identify the domains of patients' QoL by combining for the first time the perspectives of patients and parents with previously collected reports in professionals. Our second goal was to develop a simple QoL assessment tool and optimize its format and content for use in the childhood advanced cancer population. METHODS: To identify QoL domains, we conducted qualitative interviews with 7 young patients (4 girls, 3 boys, aged 13 ± 4 yrs) and 9 parents (7 mothers, 2 fathers) from our treatment centre. We used inductive thematic content analysis to code and categorize respondents' viewpoints. The first version of the tool (Advance QoL) was then drafted, and structured feedback was collected through interviews and a survey with 15 experts. We computed content validity indices. RESULTS: Apart from the physical, psychological, and social domains, participants insisted on four original themes: autonomy, pleasure, the pursuit of achievement, and the sense of feeling heard. This was in line with the categories found in a preliminary study involving professionals (PMID: 28137343). Experts evaluated the tool as clear, relevant, acceptable, and usable. They formulated recommendations on instructions, timeframe, and item formulations, which we implemented in the refined version. CONCLUSIONS: Advance QoL is an innovative tool targeting key life domains in childhood advanced cancer. It is focused on preserved abilities and targets of care. The refined version is appropriate for adult respondents within families and professionals. Future studies will develop versions for young ages to collect the experience of patients themselves. This will open on future reliability, validity, sensitivity, and implementation studies.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-022-01025-z" target="_blank" rel="noreferrer noopener">10.1186/s12904-022-01025-z</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
Adolescent
Adult
Advanced Cancer
Avoine-Blondin J
BMC Palliative Care
Child
Concept Formation
Dumont É
Duval M
Female
Humans
Male
Marquis MA
Mixed-method
Neoplasms
Palliative Care
Pediatrics
psychology/therapy
Quality Of Life
Reproducibility of Results
Sultan S
Surveys And Questionnaires
-
Dublin Core
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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/10.1371/journal.pone.0270797" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1371/journal.pone.0270797</a>
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Title
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Thinking globally to improve care locally: A Delphi study protocol to achieve international clinical consensus on best-practice end-of-life communication with adolescents and young adults with cancer
Publisher
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PLOS ONE
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Creator
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Sansom-Daly UM; Wiener L; Darlington AS; Poort H; Rosenberg AR; Weaver MS; Schulte F; Anazodo A; Phillips C; Sue L; Herbert AR; Mack JW; Lindsay T; Evans H; Wakefield CE; Global Adolescent and Young Adult Cancer Accord End-of-Life Study Group
Description
An account of the resource
For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been established, however, many health-professionals do not feel confident leading these conversations, leaving gaps in the implementation of best-practice end-of-life communication. We present a protocol for a Delphi study informing the development and implementation of clinician training to strengthen health-professionals' capacity in end-of-life conversations. Our approach will inform training to address barriers to end-of-life communication with adolescents and young adults across Westernized Adolescent and Young Adult Cancer Global Accord countries. The Adolescent and Young Adult Cancer Global Accord team involves 26 investigators from Australia, New Zealand, the United States, Canada and the United Kingdom. Twenty-four consumers, including adolescents and young adults with cancer history and carers, informed study design. We describe methodology for a modified Delphi questionnaire. The questionnaire aims to determine optimal timing for end-of-life communication with adolescents and young adults, practice-related content needed in clinician training for end-of-life communication with adolescents and young adults, and desireability of evidence-based training models. Round 1 involves an expert panel of investigators identifying appropriate questionnaire items. Rounds 2 and 3 involve questionnaires of international multidisciplinary health-professionals, followed by further input by adolescents and young adults. A second stage of research will design health-professional training to support best-practice end-of-life communication. The outcomes of this iterative and participatory research will directly inform the implementation of best-practice end-of-life communication across Adolescent and Young Adult Cancer Global Accord countries. Barriers and training preferences identified will directly contribute to developing clinician-training resources. Our results will provide a framework to support further investigating end-of-life communication with adolescents and young adults across diverse countries. Our experiences also highlight effective methodology in undertaking highly collaborative global research.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1371/journal.pone.0270797" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0270797</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
Adolescent
Anazodo A
Communication
Consensus
Darlington AS
Death
Delphi Technique
Evans H
Global Adolescent and Young Adult Cancer Accord End-of-Life Study Group
Herbert AR
Humans
Lindsay T
Mack JW
Neoplasms
Neoplasms/th [therapy]
Phillips C
PLoS One
Poort H
Rosenberg AR
Sansom-Daly UM
Schulte F
Sue L
Wakefield CE
Weaver MS
Wiener L
Young Adult
-
Dublin Core
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Title
A name given to the resource
December 2022 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
December List 2022
URL Address
<a href="http://doi.org/10.1016/j.spp.2022.07.009" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.spp.2022.07.009</a>
Dublin Core
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Title
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End of Life in Pediatrics. [French]
Publisher
An entity responsible for making the resource available
Soins, Pediatrie, Puericulture
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Child; Death; Family; Humans; Neoplasms; Neoplasms/th [Therapy]; Palliative Care; accompagnement; cancer; caregiving practice; parent; pediatric palliative care; pratique soignante; soins palliatifs pediatriques; support
Creator
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Malezieux ML
Description
An account of the resource
When medicine proves to be powerless to cure a child suffering from cancer, there remains the path of accompaniment by what we call palliative care. This is very different from the treatments that have been administered up to now - since they are not intended to cure - and its main objective is to create a comfortable living environment, a warm and reassuring climate around the young patient and his family. Copyright © 2022. Published by Elsevier Masson SAS.
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<a href="http://doi.org/10.1016/j.spp.2022.07.009" target="_blank" rel="noreferrer noopener">10.1016/j.spp.2022.07.009</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
accompagnement
Cancer
caregiving practice
Child
Death
December List 2022
Family
Humans
Malezieux ML
Neoplasms
Neoplasms/th [therapy]
Palliative Care
Parent
Pediatric Palliative Care
pratique soignante
Soins palliatifs pédiatriques
Soins. Pediatrie, Puericulture
Support
-
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June 2022 List
Text
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June 2022 List
URL Address
<a href="http://doi.org/10.4037/ajcc2022294" target="_blank" rel="noreferrer noopener">http://doi.org/10.4037/ajcc2022294</a>
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Nursing Care at End of Life in Pediatric Intensive Care Unit Patients Requiring Mechanical Ventilation
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American Journal of Critical Care
Date
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2022
Subject
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Acute Disease; Child; Death; Humans; Intensive Care Units Pediatric; Neoplasms; Pain; Respiration Artificial
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Broden EG; Hinds PS; Werner-Lin A; Quinn R; Asaro LA; Curley MAQ
Description
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BACKGROUND: Parents' perceptions of critical care during the final days of their child's life shape their grief for decades. Little is known about nursing care needs of children actively dying in the pediatric intensive care unit (PICU). OBJECTIVES: To examine associations between patient characteristics, circumstances of death, and nursing care requirements for children who died in the PICU. METHODS: A secondary analysis of the data set from the Randomized Evaluation of Sedation Titration for Respiratory Failure trial was conducted. RESULTS: This analysis included 104 children; 67 died after withdrawal of life-sustaining treatments; 21, after failed resuscitation; and 16, after brain death. Patients had a median age of 7.5 years, were cognitively appropriate, and were intubated for acute respiratory failure. Daily pain and sedation scores indicated patients' comfort was well managed (mean pain scores: modal, 0; peak, 2; mean sedation scores: modal, -2; peak, -1). Patients with longer PICU stays more often experienced pain and agitation on the day of death. Illness trajectory (acute, complex chronic condition, or cancer) was associated with pain scores (P = .04). Specifically, children with cancer had higher pain scores than children with acute illness trajectories (P = .01). Many patients (62%) had no change in critical care devices in their last days of life (median, 5 devices). Patterns of pain, sedation, comfort medications, and nursing care requirements did not differ by circumstances of death. CONCLUSION: Children with cancer and longer PICU stays may need comprehensive comfort management. Invasive devices left in place during withdrawal of life support may have inhibited parents' ability to connect with their child. Future research should incorporate parents' perspectives.
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<a href="http://doi.org/10.4037/ajcc2022294" target="_blank" rel="noreferrer noopener">10.4037/ajcc2022294</a>
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2022
Acute Disease
American Journal of Critical Care
April 2022 List
Asaro LA
Broden EG
Child
Curley MAQ
Death
Hinds PS
Humans
Intensive Care Units Pediatric
Neoplasms
Pain
Quinn R
Respiration Artificial
Werner-Lin A
-
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Title
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Special Edition #1 2022 List
Text
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Citation List Month
Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1037/cpp0000403" target="_blank" rel="noreferrer noopener">http://doi.org/10.1037/cpp0000403</a>
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Childhood cancer physical symptom burden and parent distress: The role of parent rumination
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Clinical Practice in Pediatric Psychology
Date
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2021
Subject
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Pain; Family; Pediatrics; Symptoms; Neoplasms; Distress; Parental Role; Caregiver Burden; Income Level; Rumination (Cognitive Process)
Creator
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Fisher RS; Perez MN; Basile NL; Pepper M; Gamwell KL; McNall-Knapp R; Carrick Carter J; Mayes S; Chaney JM; Mullins LL
Description
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Objective: Symptom burden of children with cancer appears to contribute to parent distress, but the mechanisms of this relationship are relatively unexplored. The current cross-sectional study examined rumination (i.e., repeated focus on negative events and experiences) as a mediator of the associations between parent-report of child (a) pain or (b) nausea, and parent posttraumatic stress symptoms (PTSS); parent-report of child symptoms → parent rumination → parent PTSS. Methods: Caregivers (N = 40, MAge = 38.7 years, female = 87.5%, White = 67.5%) of children with cancer (MAge = 9.4 years) were recruited at a Midwest pediatric cancer center following their child’s diagnosis (MMonths = 2.97 ± 1.98). Parents completed the PedsQL-Cancer Module, the Ruminative Response Scale, and the Impact of Events Scale—Revised. To test the hypothesized indirect effects, 2 separate regression models specifying 5,000 bias-corrected bootstrapping resamples were conducted via Hayes’ PROCESS macro. Family income served as a covariate. Results: Bootstrap regression analysis revealed that parent-report of child pain had an indirect effect on parent PTSS via parent rumination, controlling for family income, R2 = .37, ß = −.24, 95% CI [−.494, −.033]. Child nausea demonstrated an indirect effect on parent PTSS via parent rumination, controlling for family income, R2 = .36, ß = −.22, 95% CI [−.428, −.008]. Conclusions: Findings indicate that worse parent perception of child symptoms may lead to elevated parent distress through increased rumination. These results support the role of pediatric psychologists and the interdisciplinary team in alleviating parent distress through clinical management of both child physical symptoms and parent rumination. (PsycInfo Database Record (c) 2021 APA, all rights reserved)
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<a href="http://doi.org/10.1037/cpp0000403" target="_blank" rel="noreferrer noopener">10.1037/cpp0000403</a>
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2021
2022 Special Edition 1 - Parent Perspectives
Basile NL
Caregiver Burden
Carrick Carter J
Chaney JM
Clinical Practice in Pediatric Psychology
Distress
Family
Fisher RS
Gamwell KL
Income Level
Mayes S
McNall-Knapp R
Mullins LL
Neoplasms
Pain
Parental Role
Pediatrics
Pepper M
Perez MN
Rumination (Cognitive Process)
Symptoms
-
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Title
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April 2021 List
Text
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Citation List Month
April 2021 List
URL Address
<a href="http://doi.org/10.1016/j.ijnss.2020.11.005" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ijnss.2020.11.005</a>
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Title
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Focuses and trends of the studies on pediatric palliative care:A bibliometric analysis from 2004 to 2018
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International Journal of Nursing Sciences
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Pediatrics; Communication; Parents; Neoplasms; Bibliometrics; Hospice and palliative care nursing; Decision making; Professional-family relations
Creator
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Zhang M; Li X
Description
An account of the resource
Objectives: To investigate the focuses and trends of the studies on pediatric palliative care (PPC) and provide directions for future research. Method(s): Relevant papers about PPC published from 2004 to 2018 were analyzed using bibliometric analysis methods, including co-word analysis, biclustering analysis, and strategic diagram analysis. The included papers were divided into three groups based on the publication time, including 2004-2008, 2009-2013, and 2014-2018. Result(s): A total of 1132 papers were published between 2004 and 2018, and there were 293 papers published between 2004 and 2008, 396 between 2009 and 2013, and 443 between 2014 and 2018. There were 42 high-frequency MeSH terms/MeSH subheadings in papers published between 2004 and 2018, including 12 between 2004 and 2008, 13 between 2009 and 2013, and 17 between 2014 and 2018. Conclusion(s): Studies on PPC were making progress, with the increasing number, expanding scope, and uneven global distribution. Integration palliative care into pediatrics, cancer treatments in pediatric oncology, education methods on PPC, and establishment of professional teams were the major themes during 2004-2008, then the themes changed into establishing interventions to enhance the quality of life of the patients and parents, building professional-family relationship, and investigating attitude of health personnel in PPC during 2009-2013 and subsequently turned into communication skills, end-of-life decision making, and guidelines making on PPC during 2014-2018. Underdeveloped and protential themes including effective approaches to deal with the ethical dilemmas, training programs on communication skills, family support and guideline making are worth studying in the future. Copyright © 2020 The authors
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<a href="http://doi.org/10.1016/j.ijnss.2020.11.005" target="_blank" rel="noreferrer noopener">10.1016/j.ijnss.2020.11.005</a>
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2021
April 2021 List
Bibliometrics
Communication
Decision Making
Hospice And Palliative Care Nursing
International Journal of Nursing Sciences
Li X
Neoplasms
Parents
Pediatrics
Professional-family Relations
Zhang M
-
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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/10.1177/0269216320908490" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216320908490</a>
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Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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palliative care; child; adolescent; hospice care; terminal care; neoplasms; systematic review
Creator
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Taylor J; Booth A; Beresford B; Phillips B; Wright K; Fraser L
Description
An account of the resource
Background: Specialist paediatric palliative care services are promoted as an important component of palliative care provision, but there is uncertainty about their role for children with cancer. Aim(s): To examine the impact of specialist paediatric palliative care for children and young people with cancer and explore factors affecting access. Design(s): A mixed-methods systematic review and narrative synthesis (PROSPERO Registration No. CRD42017064874). Data sources: Database (CINAHL, Cochrane Database of Systematic Reviews, Embase, MEDLINE, PsycINFO) searches (2000-2019) identified primary studies of any design exploring the impact of and/or factors affecting access to specialist paediatric palliative care. Study quality was assessed using The Mixed Methods Appraisal Tool. Result(s): An evidence base of mainly low- and moderate-quality studies (n = 42) shows that accessing specialist paediatric palliative care is associated with less intensive care at the end of life, more advance care planning and fewer in-hospital deaths. Current evidence cannot tell us whether these services improve children's symptom burden or quality of life. Nine studies reporting provider or family views identified uncertainties about what specialist paediatric palliative care offers, concerns about involving a new team, association of palliative care with end of life and indecision about when to introduce palliative care as important barriers to access. There was evidence that children with haematological malignancies are less likely to access these services. Conclusion(s): Current evidence suggests that children and young people with cancer receiving specialist palliative care are cared for differently. However, little is understood about children's views, and research is needed to determine whether specialist input improves quality of life. Copyright © The Author(s) 2020.
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<a href="http://doi.org/10.1177/0269216320908490" target="_blank" rel="noreferrer noopener">10.1177/0269216320908490</a>
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2020
Adolescent
Beresford B
Booth A
Child
Fraser L
Hospice Care
Neoplasms
Oncology 2020 List
Palliative Care
Palliative Medicine
Phillips B
Systematic Review
Taylor J
Terminal Care
Wright K
-
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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/10.1590/1983-1447.2020.20190223" target="_blank" rel="noreferrer noopener">http://doi.org/10.1590/1983-1447.2020.20190223</a>
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Title
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Perceptions of adolescents with cancer undergoing palliative care about their illness process
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Revista Gaucha de Enfermagem
Date
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2020
Subject
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palliative care; adolescent; neoplasms; oncology nursing
Creator
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Guimaraes T M; Pacheco S T A; Nunes M D R; Silva L F D
Description
An account of the resource
OBJECTIVE: To understand the perception of adolescents with cancer undergoing palliative cares about their illness process. METHOD: An exploratory and qualitative study, per formed at a federal public hospital specialized in oncology disease in Rio de Janeiro, through interviews with nine adolescents aged 12 to 20 years old, from July to August 2017. Data was submitted to thematic analysis and the theoretical framework was Hildegard Peplau's Theory of Interpersonal Relationships. RESULTS: Three categories emerged: Living the difficult moment of the trajectory of the disease; Feeling the social isolation and that life has stopped; and Overcoming the difficult stage of the disease. They addressed the trajectory of the disease since the diagnosis, with the awakening of feelings of isolation and stagnation of life. Moreover, they highlighted the overcoming power of these adolescents. FINAL CONSIDERATIONS: The study made it possible to know the difficulties experienced during the course of the disease, providing subsidies for the practice of nurses to happen in a sensitive, individualized manner and focused on the individual's need thus enhancing comfort and quality of life.
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<a href="http://doi.org/10.1590/1983-1447.2020.20190223" target="_blank" rel="noreferrer noopener">10.1590/1983-1447.2020.20190223</a>
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2020
Adolescent
Guimaraes T M
Neoplasms
Nunes M D R
Oncology 2020 List
Oncology Nursing
Pacheco S T A
Palliative Care
Revista Gaúcha De Enfermagem
Silva L F D
-
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Title
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2018 Oncology List
Text
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Citation List Month
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1002/cncr.30860" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1002/cncr.30860</a>
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Title
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Disparities in location of death of adolescents and young adults with cancer: A longitudinal, population study in California
Publisher
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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
Neoplasms; Death; Male; Hospital Mortality; Young Adult; Humans; Adult; Adolescent; Female; Retrospective Studies; Attitude to Death; Hospital Mortality/td [Trends]; California; Hospices/sn [Statistics & Numerical Data]; Patient Preference/sn [Statistics & Numerical Data]; Nursing Homes/sn [Statistics & Numerical Data]; Residence Characteristics/sn [Statistics & Numerical Data]
Creator
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Rajeshuni N; Johnston EE; Saynina O; Sanders LM; Chamberlain LJ
Description
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BACKGROUND: Patients with a terminal illness should have access to their chosen location of death. Cancer is the leading cause of non-accidental death among adolescents and young adults (AYAs; those aged 15-39 years). Although surveys have suggested that a majority of these patients prefer a home death, to the authors' knowledge, little is known regarding their barriers to accessing their preferred location of death. As a first step, the authors sought to determine, across a large population, 20-year trends in the location of death among AYA patients with cancer. METHODS: Using the Vital Statistics Death Certificate Database of the California Office of Statewide Health Planning and Development, the authors performed a retrospective, population-based analysis of California patients with cancer aged 15 to 39 years who died between 1989 and 2011. Sociodemographic and clinical factors associated with hospital death were examined using multivariable logistic regression. RESULTS: Of 30,573 AYA oncology decedents, 57% died in a hospital, 33% died at home, and 10% died in other locations (eg, hospice facility or nursing facility). Between 1989 and 1994, hospital death rates decreased from 68.3% to 53.6% and at-home death rates increased from 16.8% to 35.5%. Between 1995 and 2011, these rates were stable. Those individuals who were more likely to die in a hospital were those aged <30 years, of minority race, of Hispanic ethnicity, who lived <=10 miles from a specialty center, and who had a diagnosis of leukemia or lymphoma. CONCLUSIONS: Overall, the majority of AYA cancer deaths occurred in a hospital, with a 5-year shift to more in-home deaths that abated after 1995. In-hospital deaths were more common among younger patients, patients of minority race/ethnicities, and those with a leukemia or lymphoma diagnosis. Further study is needed to determine whether these rates and disparities are consistent with patient preferences. Cancer 2017;123:4178-4184. � 2017 American Cancer Society.
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<a href="http://doi.org/%2010.1002/cncr.30860" target="_blank" rel="noreferrer noopener">10.1002/cncr.30860</a>
2017
Adolescent
Adult
Attitude To Death
California
Cancer
Chamberlain LJ
Death
Female
Hospices/sn [statistics & Numerical Data]
Hospital Mortality
Hospital Mortality/td [Trends]
Humans
Johnston EE
Male
Neoplasms
Nursing Homes/sn [Statistics & Numerical Data]
Oncology 2018 List
Patient Preference/sn [Statistics & Numerical Data]
Rajeshuni N
Residence Characteristics/sn [Statistics & Numerical Data]
Retrospective Studies
Sanders LM
Saynina O
Young Adult
-
Text
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Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1002/pbc.24712" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.24712</a>
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Title
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Association between religious and socio-economic background of parents of children with solid tumors and DNR orders
Publisher
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Pediatric Blood & Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
adolescent; Child; Female; Humans; infant; Male; retrospective studies; Survival Rate; Young Adult; Neoplasms; decision making; Adult; Parents; Education; Prognosis; Follow-Up Studies; Socioeconomic Factors; Resuscitation Orders; Religion; Medical Records; Preschool
Creator
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Hileli I; Weyl Ben Arush M; Hakim F; Postovsky S
Description
An account of the resource
BACKGROUND: The influence of socio-economic and religious background on decisions made by parents of children with incurable cancer regarding DNR orders is not fully understood. PROCEDURE: A retrospective analysis of medical charts of patients who died between January 2000 and January 2011 was performed. The following data were sought: written evidence of DNR discussion with parents, religious background, educational level, monthly income. RESULTS: There was evidence of a discussion on DNR in 73/90 charts. DNR consent was obtained in 14/17 (82.4%) cases where at least one parent had >15 years of education versus in only 24/45 (53.3%) cases where both parents had ≤15 years education as determined by univariate analysis (P = 0.03). DNR consent was also more likely to be obtained among parents of children with income >10,000 NIS (24/30, 80.0% vs. 20/38, 52.6%, P = 0.013). Parents of Jewish (22/30, 73.3%), Islamic (16/26, 61.5%), and Christian (8/9, 88.9%) background were equally likely to provide DNR consent. However, Druze families were less likely to do so (2/8, 25.0%, P = 0.036). CONCLUSIONS: The process of decision-making to a DNR request was associated with parents' educational level and monthly family income, and not by religious background, with the exception of Druze families.
2014-02
Identifier
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<a href="http://doi.org/10.1002/pbc.24712" target="_blank" rel="noreferrer">10.1002/pbc.24712</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).
Type
The nature or genre of the resource
Journal Article
2014
Adolescent
Adult
Backlog
Child
Decision Making
Education
Female
Follow-up Studies
Hakim F
Hileli I
Humans
Infant
Journal Article
Male
Medical Records
Neoplasms
Parents
Pediatric Blood & Cancer
Postovsky S
Preschool
Prognosis
Religion
Resuscitation Orders
Retrospective Studies
Socioeconomic Factors
Survival Rate
Weyl Ben Arush M
Young Adult
-
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/10.1007/s00520-014-2178-3" target="_blank" rel="noreferrer">http://doi.org/10.1007/s00520-014-2178-3</a>
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Title
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A cross-sectional study on prevalence of pain and breakthrough pain among an unselected group of outpatients in a tertiary cancer clinic
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Supportive Care In Cancer : Official Journal Of The Multinational Association Of Supportive Care In Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
adolescent; Cross-Sectional Studies; Female; Humans; Male; Young Adult; Neoplasms; Pain Measurement; Cohort Studies; Adult; Prevalence; Aged; Middle Aged; Comorbidity; Ambulatory Care Facilities; Breakthrough Pain; Norway; Outpatients
Creator
An entity primarily responsible for making the resource
Raj Sunil X; Thronaes M; Brunelli C; Hjermstad MJ; Klepstad P; Kaasa S
Description
An account of the resource
PURPOSE: Systematic knowledge about the prevalence and the treatment effects of cancer pain in patients attending a general oncology outpatient department is limited. The purpose of this study was to investigate the prevalence of pain in a large representative cohort of patients attending a general oncology outpatient department in order to guide further screening, classification, and treatment of pain. MATERIAL AND METHODS: A cross-sectional study among patients visiting the outpatient clinic with histologically verified cancer, age≥18 years, adequate cognitive function, and no surgical procedures last 24 h were included. Pain was assessed by the Brief Pain Inventory and the Alberta Breakthrough Pain Assessment Tool. RESULTS: Three hundred five patients were included. The mean age was 60 years, 94% had a WHO performance status of 0-1 and 59% received oncological treatment with a curative intent. The mean score for average pain last 24 h (numerical rating scale, 0-10) and current pain was 1.84 and 1.08, respectively. Twenty-two percent reported pain score of ≥4 as their average pain in the previous 24 h. Twenty-one percent reported breakthrough pain (BTP). In multivariate analyses, sleep, BTP, age, treatment intent, and comorbidity was significantly associated with mean average pain in the previous 24 h and explained 29% of the variability of average pain in the previous 24 h. CONCLUSION: Of the patients at an oncology outpatient clinic, 22% reported clinically significant pain. These findings indicate that all patients are candidates to be screened for pain and, if present, a more detailed pain diagnosis should be established before any interventions can be recommended.
2014-07
Identifier
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<a href="http://doi.org/10.1007/s00520-014-2178-3" target="_blank" rel="noreferrer">10.1007/s00520-014-2178-3</a>
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Type
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Journal Article
2014
Adolescent
Adult
Aged
Ambulatory Care Facilities
Backlog
Breakthrough Pain
Brunelli C
Cohort Studies
Comorbidity
Cross-sectional Studies
Female
Hjermstad MJ
Humans
Journal Article
Kaasa S
Klepstad P
Male
Middle Aged
Neoplasms
Norway
Outpatients
Pain Measurement
Prevalence
Raj Sunil X
Supportive Care In Cancer : Official Journal Of The Multinational Association Of Supportive Care In Cancer
Thronaes M
Young Adult
-
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/10.1016/j.jpainsymman.2013.08.018" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpainsymman.2013.08.018</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
A name given to the resource
Symptoms and problem clusters in cancer and non-cancer patients in specialized palliative care-is there a difference?
Publisher
An entity responsible for making the resource available
Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Female; Humans; Male; Palliative Care; Neoplasms; symptoms; Aged; Inpatients; Germany; cancer; Cluster Analysis; non-cancer; problems
Creator
An entity primarily responsible for making the resource
Stiel S; Matthies Dominik MK; Seuß D; Walsh D; Lindena G; Ostgathe C
Description
An account of the resource
CONTEXT: In clinical practice, some symptoms and problems frequently occur in combination, which may have consequences for symptom management. OBJECTIVES: Facing a growing number of non-cancer patients in palliative care, this study aimed to differentiate symptom clusters in the non-cancer population from those in cancer patients. METHODS: Inpatient data from the German Hospice and Palliative Care Evaluation between 2007 and 2011 were used for a cluster analysis of a 16-item symptom and problem checklist. An agglomerative hierarchical method was chosen. Coefficients from distance matrix ranging between 0 and 1 were calculated to indicate the interrelationship of clustered symptoms. RESULTS: The analysis identified five clusters in cancer patients: 1) nausea and vomiting (d = 0.000); 2) anxiety, tension, and feeling depressed (d = 0.125); 3) wound care and disorientation/confusion (d = 0.229); 4) organization of care and overburdening of family (d = 0.202); and 5) weakness, tiredness, need for assistance with activities of daily living, and loss of appetite (d = 0.207). Five comparable clusters were identified in non-cancer patients: 1) nausea and vomiting (d = 0.000); 2) anxiety, tension, and feeling depressed (d = 0.166); 3) organization of care and overburdening of family (d = 0.187); 4) weakness and need for assistance with activities of daily living (d = 0.139); and 5) tiredness and loss of appetite (d = 0.182). CONCLUSION: As symptom clusters do not significantly differ between cancer and non-cancer patients, specific frequent symptoms in non-cancer patients should be assessed. Identification of symptom clusters may help to target therapies and focus the use of medications to improve patients' quality of life.
2014-07
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2013.08.018" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2013.08.018</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).
Type
The nature or genre of the resource
Journal Article
2014
Aged
Backlog
Cancer
Cluster Analysis
Female
Germany
Humans
Inpatients
Journal Article
Journal of Pain and Symptom Management
Lindena G
Male
Matthies Dominik MK
Neoplasms
non-cancer
Ostgathe C
Palliative Care
problems
Seuß D
Stiel S
Symptoms
Walsh D
-
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/10.1089/jpm.2013.0663" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2013.0663</a>
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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's Missing in Missing Data? Omissions in Survey Responses among Parents of Children with Advanced Cancer
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
adolescent; Female; Humans; Male; Neoplasms; Adult; Parents; Prognosis; Questionnaires; Disease Progression; Research; quality of life; Life Expectancy; prog; surveys
Creator
An entity primarily responsible for making the resource
Rosenberg AR; Dussel V; Orellana L; Kang TI; Geyer JR; Feudtner C; Wolfe J
Description
An account of the resource
Abstract Background: Missing data is a common phenomenon with survey-based research; patterns of missing data may elucidate why participants decline to answer certain questions. Objective: To describe patterns of missing data in the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) study, and highlight challenges in asking sensitive research questions. Design: Cross-sectional, survey-based study embedded within a randomized controlled trial. Setting: Three large children's hospitals: Dana-Farber/Boston Children's Cancer and Blood Disorders Center (DF/BCCDC); Children's Hospital of Philadelphia (CHOP); and Seattle Children's Hospital (SCH). Measurements: At the time of their child's enrollment, parents completed the Survey about Caring for Children with Cancer (SCCC), including demographics, perceptions of prognosis, treatment goals, quality of life, and psychological distress. Results: Eighty-six of 104 parents completed surveys (83% response). The proportion of missing data varied by question type. While 14 parents (16%) left demographic fields blank, over half (n=48; 56%) declined to answer at least one question about their child's prognosis, especially life expectancy. The presence of missing data was unrelated to the child's diagnosis, time from progression, time to death, or parent distress (p>0.3 for each). Written explanations in survey margins suggested that addressing a child's life expectancy is particularly challenging for parents. Conclusions and Relevance: Parents of children with cancer commonly refrain from answering questions about their child's prognosis, however, they may be more likely to address general cure likelihood than explicit life expectancy. Understanding acceptability of sensitive questions in survey-based research will foster higher quality palliative care research.
2014-05
Identifier
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<a href="http://doi.org/10.1089/jpm.2013.0663" target="_blank" rel="noreferrer">10.1089/jpm.2013.0663</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).
Type
The nature or genre of the resource
Journal Article
2014
Adolescent
Adult
Backlog
Disease Progression
Dussel V
Female
Feudtner C
Geyer JR
Humans
Journal Article
Journal of Palliative Medicine
Kang TI
Life Expectancy
Male
Neoplasms
Orellana L
Parents
prog
Prognosis
Quality Of Life
Questionnaires
Research
Rosenberg AR
surveys
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
Backlog
URL Address
<a href="http://doi.org/10.1097/IGC.0000000000000017" target="_blank" rel="noreferrer">http://doi.org/10.1097/IGC.0000000000000017</a>
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Title
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Causes and palliation of transfusion-associated vaginal bleeding in patients with metastatic cancer
Publisher
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International Journal Of Gynecological Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
adolescent; Female; Humans; retrospective studies; Young Adult; Palliative Care; Neoplasms; Adult; Aged; Middle Aged; Treatment Outcome; Neoplasm Metastasis; Uterine Hemorrhage
Creator
An entity primarily responsible for making the resource
Jackson AE; Stephens EK; Jatoi A
Description
An account of the resource
PURPOSE: The current study was undertaken (1) to capture a clinically relevant, systematically collected series of patients with metastatic cancer and transfusion-associated vaginal bleeding and (2) to provide insight into how best to palliate this bleeding. METHODS/RESULTS: As part of a single-institution review, 46 patients with metastatic cancer and transfusion-associated vaginal bleeding were identified. In a minority, 14 (30%), the cancer itself was directly responsible for the bleeding, and under these circumstances, gynecological cancer was the most frequent cause. In 13 patients (28%), more than 1 palliative intervention was attempted. Of all the interventions, a hysterectomy was performed most frequently and was successful in 11 patients. The use of ablation or embolization procedures was rarely tried but successful in 4 patients. However, 2 patients died of vaginal bleeding, despite multiple palliative procedures to control bleeding, including tumor embolization in one. CONCLUSIONS: Transfusion-associated vaginal bleeding in patients with metastatic cancer can arise from nonmalignant causes and often assumes an uneventful course but can, at times, be serious and difficult to control.
2014-01
Identifier
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<a href="http://doi.org/10.1097/IGC.0000000000000017" target="_blank" rel="noreferrer">10.1097/IGC.0000000000000017</a>
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).
Type
The nature or genre of the resource
Journal Article
2014
Adolescent
Adult
Aged
Backlog
Female
Humans
International Journal Of Gynecological Cancer
Jackson AE
Jatoi A
Journal Article
Middle Aged
Neoplasm Metastasis
Neoplasms
Palliative Care
Retrospective Studies
Stephens EK
Treatment Outcome
Uterine Hemorrhage
Young Adult
-
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/10.1111/cch.12020" target="_blank" rel="noreferrer">http://doi.org/10.1111/cch.12020</a>
Dublin Core
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Title
A name given to the resource
Was there a plan? End-of-life care for children with life-limiting conditions: a review of multi-service healthcare records
Publisher
An entity responsible for making the resource available
Child: Care, Health And Development
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Child; Female; Humans; Male; Advance Directives; Physician-Patient Relations; Pediatrics; Practice Guidelines as Topic; Communication; Resuscitation Orders; Time Factors; quality of life; end of life; adolescent; Preschool; decision making; infant; retrospective studies; DNAR; Parents; documentation; Parents/px [Psychology]; Terminal Care; Patient Care Planning/og [Organization & Administration]; Terminal Care/og [Organization & Administration]; review; Medical Records; Neoplasms; advance planning; child and family wishes; Neoplasms/mo [Mortality]; Patient Care Planning/st [Standards]; Terminal Care/px [Psychology]
Creator
An entity primarily responsible for making the resource
Beringer AJ; Heckford EJ
Description
An account of the resource
BACKGROUND: Planning for care at the end of life (EoL) is an essential component of support and care for families of children with life-limiting conditions. The purpose of this review was to compare documented EoL planning with published children's palliative care standards, across a range of children's healthcare services and to assess the impact on practice of written guidelines to support EoL care planning. METHOD: A manual retrospective review of healthcare records using a purpose-built form. Inclusion criteria were the records of children with a diagnosed life-limiting or life-threatening condition, who had died before the age of 18 years, between October 2008 and March 2010, within a defined geographical area served by one or more of the participating services. The sample was 114 sets of notes relating to a cohort of 48 children: 24 girls and 24 boys, the majority of whose deaths were cancer related. RESULTS: Examples of good practice were found in the records of individual services. Services had each developed their own systems and documents to support EoL care planning rather than using a unified documentation system. Where documented practice fell short, this was related to a lack of evidence that choice in location of death had been offered, delays in sharing of information between services, and information being buried in the narrative of the notes, making it difficult to find. CONCLUSIONS: Current documented EoL planning varies between services. Those who are infrequently involved in the provision of EoL care may benefit from support by those for whom this is part of their daily working life. These professionals can help prepare staff to engage families in these difficult but important conversations - and encourage them to document them in a way that can be easily and readily accessed and shared.
2014-03
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/cch.12020" target="_blank" rel="noreferrer">10.1111/cch.12020</a>
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).
Type
The nature or genre of the resource
Journal Article
2014
Adolescent
Advance Directives
advance planning
Backlog
Beringer AJ
Child
child and family wishes
Child: Care, Health and Development
Communication
Decision Making
DNAR
Documentation
End Of Life
Female
Heckford EJ
Humans
Infant
Journal Article
Male
Medical Records
Neoplasms
Neoplasms/mo [mortality]
Parents
Parents/px [psychology]
Patient Care Planning/og [Organization & Administration]
Patient Care Planning/st [Standards]
Pediatrics
Physician-patient Relations
Practice Guidelines As Topic
Preschool
Quality Of Life
Resuscitation Orders
Retrospective Studies
Review
Terminal Care
Terminal Care/og [organization & Administration]
Terminal Care/px [psychology]
Time Factors
-
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/10.1200/JCO.2013.53.4271" target="_blank" rel="noreferrer">http://doi.org/10.1200/JCO.2013.53.4271</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
A name given to the resource
Using patient-reported outcomes in clinical practice: a promising approach?
Publisher
An entity responsible for making the resource available
Journal Of Clinical Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Female; Humans; Male; Palliative Care; Neoplasms; Electronic Health Records
Creator
An entity primarily responsible for making the resource
Snyder CF
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1200/JCO.2013.53.4271" target="_blank" rel="noreferrer">10.1200/JCO.2013.53.4271</a>
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).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2014-04
2014
Backlog
Electronic Health Records
Female
Humans
Journal Article
Journal Of Clinical Oncology
Male
Neoplasms
Palliative Care
Snyder CF
-
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/10.2196/resprot.3041" target="_blank" rel="noreferrer">http://doi.org/10.2196/resprot.3041</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
A name given to the resource
A smartphone-based pain management app for adolescents with cancer: establishing system requirements and a pain care algorithm based on literature review, interviews, and consensus
Publisher
An entity responsible for making the resource available
Jmir Research Protocols
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Pain; adolescent; algorithms; Neoplasms; cellular phone
Creator
An entity primarily responsible for making the resource
Jibb LA; Stevens BJ; Nathan PC; Seto Emily; Cafazzo JA; Stinson JN
Description
An account of the resource
BACKGROUND: Pain that occurs both within and outside of the hospital setting is a common and distressing problem for adolescents with cancer. The use of smartphone technology may facilitate rapid, in-the-moment pain support for this population. To ensure the best possible pain management advice is given, evidence-based and expert-vetted care algorithms and system design features, which are designed using user-centered methods, are required. OBJECTIVE: To develop the decision algorithm and system requirements that will inform the pain management advice provided by a real-time smartphone-based pain management app for adolescents with cancer. METHODS: A systematic approach to algorithm development and system design was utilized. Initially, a comprehensive literature review was undertaken to understand the current body of knowledge pertaining to pediatric cancer pain management. A user-centered approach to development was used as the results of the review were disseminated to 15 international experts (clinicians, scientists, and a consumer) in pediatric pain, pediatric oncology and mHealth design, who participated in a 2-day consensus conference. This conference used nominal group technique to develop consensus on important pain inputs, pain management advice, and system design requirements. Using data generated at the conference, a prototype algorithm was developed. Iterative qualitative testing was conducted with adolescents with cancer, as well as pediatric oncology and pain health care providers to vet and refine the developed algorithm and system requirements for the real-time smartphone app. RESULTS: The systematic literature review established the current state of research related to nonpharmacological pediatric cancer pain management. The 2-day consensus conference established which clinically important pain inputs by adolescents would require action (pain management advice) from the app, the appropriate advice the app should provide to adolescents in pain, and the functional requirements of the app. These results were used to build a detailed prototype algorithm capable of providing adolescents with pain management support based on their individual pain. Analysis of qualitative interviews with 9 multidisciplinary health care professionals and 10 adolescents resulted in 4 themes that helped to adapt the algorithm and requirements to the needs of adolescents. Specifically, themes were overall endorsement of the system, the need for a clinical expert, the need to individualize the system, and changes to the algorithm to improve potential clinical effectiveness. CONCLUSIONS: This study used a phased and user-centered approach to develop a pain management algorithm for adolescents with cancer and the system requirements of an associated app. The smartphone software is currently being created and subsequent work will focus on the usability, feasibility, and effectiveness testing of the app for adolescents with cancer pain.
2014
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.2196/resprot.3041" target="_blank" rel="noreferrer">10.2196/resprot.3041</a>
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).
Type
The nature or genre of the resource
Journal Article
2014
Adolescent
algorithms
Backlog
Cafazzo JA
cellular phone
Jibb LA
Jmir Research Protocols
Journal Article
Nathan PC
Neoplasms
Pain
Seto Emily
Stevens BJ
Stinson JN
-
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/10.3322/caac.21215" target="_blank" rel="noreferrer">http://doi.org/10.3322/caac.21215</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
A name given to the resource
Because statistics don't tell the whole story: a call for comprehensive care for children with cancer
Publisher
An entity responsible for making the resource available
Ca: A Cancer Journal For Clinicians
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Delivery of Health Care; Humans; Palliative Care; Neoplasms; decision making; Pediatrics; Professional-Family Relations; social support; Palliative Care; quality of life; Adaptation; Psychological; Statistical; Grief; Data Interpretation; Integrated
Creator
An entity primarily responsible for making the resource
Cullen J
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3322/caac.21215" target="_blank" rel="noreferrer">10.3322/caac.21215</a>
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).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2014-04
2014
Adaptation
Backlog
Ca: A Cancer Journal For Clinicians
Cullen J
Data Interpretation
Decision Making
Delivery of Health Care
Grief
Humans
Integrated
Journal Article
Neoplasms
Palliative Care
Pediatrics
Professional-family Relations
Psychological
Quality Of Life
Social Support
statistical
-
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/10.3322/caac.21219" target="_blank" rel="noreferrer">http://doi.org/10.3322/caac.21219</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
A name given to the resource
Childhood and adolescent cancer statistics, 2014
Publisher
An entity responsible for making the resource available
Ca: A Cancer Journal For Clinicians
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
adolescent; Child; Female; Humans; infant; Male; United States; Young Adult; Neoplasms; Survival Analysis; Risk Factors; Incidence; American Cancer Society; Centers for Disease Control and Prevention (U.S.); National Cancer Institute (U.S.); Registries; SEER Program; Preschool; Newborn
Creator
An entity primarily responsible for making the resource
Ward E; DeSantis C; Robbins A; Kohler B; Jemal A
Description
An account of the resource
In this article, the American Cancer Society provides estimates of the number of new cancer cases and deaths for children and adolescents in the United States and summarizes the most recent and comprehensive data on cancer incidence, mortality, and survival from the National Cancer Institute, the Centers for Disease Control and Prevention, and the North American Association of Central Cancer Registries (which are reported in detail for the first time here and include high-quality data from 45 states and the District of Columbia, covering 90% of the US population). In 2014, an estimated 15,780 new cases of cancer will be diagnosed and 1960 deaths from cancer will occur among children and adolescents aged birth to 19 years. The annual incidence rate of cancer in children and adolescents is 186.6 per 1 million children aged birth to 19 years. Approximately 1 in 285 children will be diagnosed with cancer before age 20 years, and approximately 1 in 530 young adults between the ages of 20 and 39 years is a childhood cancer survivor. It is therefore likely that most pediatric and primary care practices will be involved in the diagnosis, treatment, and follow-up of young patients and survivors. In addition to cancer statistics, this article will provide an overview of risk factors, symptoms, treatment, and long-term and late effects for common pediatric cancers.
2014-04
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3322/caac.21219" target="_blank" rel="noreferrer">10.3322/caac.21219</a>
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).
Type
The nature or genre of the resource
Journal Article
2014
Adolescent
American Cancer Society
Backlog
Ca: A Cancer Journal For Clinicians
Centers for Disease Control and Prevention (U.S.)
Child
DeSantis C
Female
Humans
Incidence
Infant
Jemal A
Journal Article
Kohler B
Male
National Cancer Institute (U.S.)
Neoplasms
Newborn
Preschool
Registries
Risk Factors
Robbins A
SEER Program
Survival Analysis
United States
Ward E
Young Adult
-
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/10.1177/1049909113492007" target="_blank" rel="noreferrer">http://doi.org/10.1177/1049909113492007</a>
<a href="http://ajh.sagepub.com/content/31/5/480" target="_blank" rel="noreferrer">http://ajh.sagepub.com/content/31/5/480</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
A name given to the resource
Investigations of the Pediatric Hospice Care in Taiwan 2005 to 2010
Publisher
An entity responsible for making the resource available
American Journal Of Hospice & Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Neoplasms; hospice care; referral and consultation; Pediatrics; Taiwan; family medicine
Creator
An entity primarily responsible for making the resource
Kang S-C; Hwang S-J; Wang Wei-Shu
Description
An account of the resource
Background: The utilization of pediatric hospice care remains unclear in Taiwan. Methods: Data were analyzed from the claims of hospice admissions in patients aged 18 years or younger using the National Health Insurance Research Database from 2005 to 2010. Results: A total of 91 patients and 136 admissions were enrolled (male–female = 50:41; mean 11.6 years old). In all, 62 patients were admitted once, including 47 patients who died. All the patients had cancer, with brain cancer (40.7%) accounting the most . Among acute comorbidities, neurological complications (16.2%) were mostly accounted. Family physicians provided most (64.7%) of the hospice services. Hospice stay ≤3 days correlated positively with death in hospices (odds ratio = 2.922, 95% confidence interval = 1.268-6.730). Conclusions: Pediatric hospice care revealed characteristics different from adults. Underlying late referrals were prevalent. There is space to promote the utilization of hospices for terminally ill pediatric patients.
2014-08
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049909113492007" target="_blank" rel="noreferrer">10.1177/1049909113492007</a>
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).
Type
The nature or genre of the resource
Journal Article
2014
American Journal of Hospice & Palliative Medicine
Backlog
family medicine
Hospice Care
Hwang S-J
Journal Article
Kang S-C
Neoplasms
Pediatrics
Referral And Consultation
Taiwan
Wang Wei-Shu
-
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/10.1200/JCO.2014.55.6571" target="_blank" rel="noreferrer">http://doi.org/10.1200/JCO.2014.55.6571</a>
<a href="http://jco.ascopubs.org/content/32/23/2391" target="_blank" rel="noreferrer">http://jco.ascopubs.org/content/32/23/2391</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
A name given to the resource
Milestones in the Curability of Pediatric Cancers
Publisher
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Journal Of Clinical Oncology
Date
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2014
Subject
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Child; Humans; Survival Rate; Neoplasms; Pediatrics
Creator
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Hudson MM; Link MP; Simone JV
Identifier
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<a href="http://doi.org/10.1200/JCO.2014.55.6571" target="_blank" rel="noreferrer">10.1200/JCO.2014.55.6571</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).
Type
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Journal Article
Description
An account of the resource
2014-08
2014
Backlog
Child
Hudson MM
Humans
Journal Article
Journal Of Clinical Oncology
Link MP
Neoplasms
Pediatrics
Simone JV
Survival Rate
-
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
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URL Address
<a href="http://doi.org/10.1200/JCO.2013.51.5981" target="_blank" rel="noreferrer">http://doi.org/10.1200/JCO.2013.51.5981</a>
<a href="http://jco.ascopubs.org/content/early/2014/03/10/JCO.2013.51.5981" target="_blank" rel="noreferrer">http://jco.ascopubs.org/content/early/2014/03/10/JCO.2013.51.5981</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
A name given to the resource
Improving the Care of Children With Advanced Cancer by Using an Electronic Patient-Reported Feedback Intervention: Results From the PediQUEST Randomized Controlled Trial
Publisher
An entity responsible for making the resource available
Journal Of Clinical Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Child; Female; Humans; Male; Palliative Care; Neoplasms; Treatment Outcome; Electronic Health Records; Pilot Projects; Symptom Assessment; Feedback; Intervention Studies; Sickness Impact Profile; quality of life; Preschool
Creator
An entity primarily responsible for making the resource
Wolfe J; Orellana L; Cook EF; Ullrich CK; Kang TI; Geyer JR; Feudtner C; Weeks Jane C; Dussel V
Description
An account of the resource
Purpose This study aimed to determine whether feeding back patient-reported outcomes (PROs) to providers and families of children with advanced cancer improves symptom distress and health-related quality of life (HRQoL). Patients and Methods This study was a parallel, multicentered pilot randomized controlled trial. At most once per week, children age ≥ 2 years old with advanced cancer or their parent completed the computer-based Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) survey consisting of age- and respondent-adapted versions of the Memorial Symptom Assessment Scale (MSAS), Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL4.0), and an overall Sickness question. In the intervention group (n = 51), oncologists and families received printed reports summarizing PROs; e-mails were sent to oncologists and subspecialists when predetermined scores were exceeded. No feedback was provided in the control group (n = 53). Primary outcomes included linear trends of MSAS, PedsQL4.0 total and subscale scores, and Sickness scores during 20 weeks of follow-up, along with child, parent, and provider satisfaction with PediQUEST feedback. Results Feedback did not significantly affect average MSAS, PedsQL4.0, or Sickness score trends. Post hoc subgroup analyses among children age ≥ 8 years who survived 20 weeks showed that feedback improved PedsQL4.0 emotional (+8.1; 95% CI, 1.8 to 14.4) and Sickness (−8.2; 95% CI, −14.2 to −2.2) scores. PediQUEST reports were valued by children, parents, and providers and contributed at least sometimes to physician initiation of a psychosocial consult (56%). Conclusion Although routine feedback of PROs did not significantly affect the child’s symptoms or HRQoL, changes were in expected directions and improvements observed in emotional HRQoL through exploratory analyses were encouraging. Importantly, children, parents, and providers value PRO feedback.
2014-03
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1200/JCO.2013.51.5981" target="_blank" rel="noreferrer">10.1200/JCO.2013.51.5981</a>
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).
Type
The nature or genre of the resource
Journal Article
2014
Backlog
Child
Cook EF
Dussel V
Electronic Health Records
Feedback
Female
Feudtner C
Geyer JR
Humans
Intervention Studies
Journal Article
Journal Of Clinical Oncology
Kang TI
Male
Neoplasms
Orellana L
Palliative Care
Pilot Projects
Preschool
Quality Of Life
Sickness Impact Profile
Symptom Assessment
Treatment Outcome
Ullrich CK
Weeks Jane C
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
Backlog
URL Address
<a href="http://doi.org/10.1002/ana.23910" target="_blank" rel="noreferrer">http://doi.org/10.1002/ana.23910</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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Life at the interface: adults with "pediatric" disorders of the nervous system
Publisher
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Annals Of Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Child; Humans; Neoplasms; Adult; Cerebral Palsy; Epilepsy; Cystic Fibrosis; Heart Defects; Child Development Disorders; Congenital; Pervasive
Creator
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Schor NF
Description
An account of the resource
The increasing longevity of patients with congenital and developmental disorders of the nervous system reflects the palliative and social success of pediatrics in the past 2 decades. This success has resulted in an increasing number of adult patients with residua or sequelae of childhood disease and/or its treatment. It is critically important that residencies and subspecialty fellowships train a cadre of physicians to prepare patients and families for the transition of children with special health care needs to adulthood and to attend to their unique medical, psychological, and social concerns. Health services and education research must better define the needs of this growing population and the best ways to educate their physicians and families and empower them to become as independent as their fullest potential allows.
2013-08
Identifier
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<a href="http://doi.org/10.1002/ana.23910" target="_blank" rel="noreferrer">10.1002/ana.23910</a>
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).
Type
The nature or genre of the resource
Journal Article
2013
Adult
Annals Of Neurology
Backlog
Cerebral Palsy
Child
Child Development Disorders
Congenital
Cystic Fibrosis
Epilepsy
Heart Defects
Humans
Journal Article
Neoplasms
Pervasive
Schor NF
-
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/10.1002/pbc.24590" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.24590</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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Racial and ethnic differences in hospice enrollment among children with cancer
Publisher
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Pediatric Blood & Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
adolescent; Child; Female; Humans; Male; Neoplasms; hospice care; Adult; Patient Acceptance of Health Care; Hispanic Americans; Preschool; Texas
Creator
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Thienprayoon R; Lee SC; Leonard D; Winick N
Description
An account of the resource
BACKGROUND: Hospice is an important provider of end of life care. Adult minorities are less likely to enroll on hospice; little is known regarding the prevalence of pediatric hospice use or the characteristics of its users. Our primary objective was to determine whether race/ethnicity was associated with hospice enrollment in children with cancer. We hypothesized that minority (Latino) race/ethnicity is negatively associated with hospice enrollment in children with cancer. PROCEDURE: In this single-center retrospective cohort study, inclusion criteria were patients who died of cancer or stem cell transplant between January 1, 2006 and December 31, 2010. The primary outcome variable was hospice enrollment and primary predictor was race/ethnicity. RESULTS: Of the 202 patients initially identified, 114 met inclusion criteria, of whom 95 were enrolled on hospice. Patient race/ethnicity was significantly associated with hospice enrollment (P = 0.02), the association remained significant (P = 0.024) after controlling for payor status (P = 0.995), patient diagnosis (P = 0.007), or religion (P = 0.921). Latinos enrolled on hospice significantly more often than patients of other races. Despite initial enrollment on hospice however, 34% of Latinos and 50% of non-Latinos had withdrawn from hospice at the time of death (P = 0.10). Race/ethnicity was not significantly associated with dying on hospice. CONCLUSIONS: These results indicate that race/ethnicity and diagnosis are likely to play a role in hospice enrollment during childhood. A striking number of patients of all race/ethnicities left hospice prior to death. More studies describing the impact of culture on end of life decision-making and the hospice experience in childhood are warranted.
2013-10
Identifier
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<a href="http://doi.org/10.1002/pbc.24590" target="_blank" rel="noreferrer">10.1002/pbc.24590</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).
Type
The nature or genre of the resource
Journal Article
2013
Adolescent
Adult
Backlog
Child
Female
Hispanic Americans
Hospice Care
Humans
Journal Article
Lee SC
Leonard D
Male
Neoplasms
Patient Acceptance of Health Care
Pediatric Blood & Cancer
Preschool
Texas
Thienprayoon R
Winick N
-
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/10.1002/pbc.24641" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.24641</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
A name given to the resource
Physical activity (PA) and sleep among children and adolescents with cancer
Publisher
An entity responsible for making the resource available
Pediatric Blood & Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
adolescent; Child; Female; Humans; Male; Neoplasms; Fatigue; Motor Activity; Sleep; Actigraphy
Creator
An entity primarily responsible for making the resource
Orsey AD; Wakefield DB; Cloutier MM
Description
An account of the resource
BACKGROUND: Although sleep and physical activity often are impaired among adult cancer patients, there is limited data among pediatric oncology populations. We conducted a prospective study to investigate the relationship between physical activity (PA) and sleep among children with cancer. PROCEDURE: Between 11/12/09 and 02/06/12, PA while awake and sleep variables were assessed by actigraphy collected over 7 days in 36 children (age range 8-18 years) with cancer (23 leukemia/lymphoma, 5 brain tumor, 8 solid tumor). Sleep diaries were used to determine sleep time, sleep quality, and morning mood. Fatigue was assessed at study initiation using fatigue instruments. RESULTS: Participants had impaired sleep based upon normative data compiled from multiple studies of more than 1,700 healthy children from 1 to 18 years of age [1], including decreased total sleep time (mean 6.6 hours, standard deviation (SD) 1.3 hours), increased wake after sleep onset (WASO; mean 2 hours, SD 1.4 hours), increased awakenings during sleep (mean 28.3 wake bouts, SD 7.8 bouts), and decreased sleep efficiency (mean 74.2%, SD 13.3%). Fatigue correlated with self-reported sleep quality but not with disturbances in sleep as measured by actigraphy. In longitudinal models that controlled for age, diagnosis group, gender, race, and steroid use, higher average activity, as measured by actigraphy, was associated with improved sleep quantity (P = 0.005) and efficiency (P = 0.001). CONCLUSION: Pediatric oncology patients demonstrate impaired sleep. Greater PA was significantly associated with improved sleep quantity and efficiency in pediatric oncology participants. As a potentially modifiable factor, PA may offer a mechanism to improve sleep in pediatric oncology patients.
2013-11
Identifier
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<a href="http://doi.org/10.1002/pbc.24641" target="_blank" rel="noreferrer">10.1002/pbc.24641</a>
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).
Type
The nature or genre of the resource
Journal Article
2013
Actigraphy
Adolescent
Backlog
Child
Cloutier MM
Fatigue
Female
Humans
Journal Article
Male
Motor Activity
Neoplasms
Orsey AD
Pediatric Blood & Cancer
Sleep
Wakefield DB