1
40
32
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March 2023 List
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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).
Text
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March List 2023
URL Address
<a href="http://doi.org/10.1136/spcare-2022-HUNC.5" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/spcare-2022-HUNC.5</a>
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Title
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“It’s brilliant! It’s working! It’s needed!” A Hospice Short Break Innovation for Young Adults
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BMJ Supportive and Palliative Care
Date
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2022
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Hospice; Adult; Child; clinical article; conference abstract; drug withdrawal; Female; health care delivery; Hospice; Human; human experiment; interview; learning; Male; outcome assessment; Palliative Therapy; positive feedback; questionnaire; sibling; trust; young adult
Creator
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Finlinson H; Spathis A
Description
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Background More young adults with life-limiting conditions are surviving into adulthood needing adult palliative care (Gibson- Smith, Jarvis, Norman et al., 2021). The evidence on appropriate service models is sparse (Clark & Fasciano, 2015. Am J Hosp Palliat Med. 31: 101). Adult hospices report lack of competence and confidence in young adult complex care needs (Knighting, Bray, Downing, et al., 2018. J Adv Nurs. May 6). Loss of children's hospice short break provision after transition has been described by families as like 'falling off a cliff edge' (Knighting, Pilkington, Noyes, et al., 2021. Health Serv Deliv Res. 9, 6). There is a lack of equivalent provision in adult services (Together for Short Lives, 2015). To address unmet need, a pilot residential short break service in an adult hospice was co-produced and evaluated with families to determine future provision. Aims With the aim of facilitating future service optimisation the service evaluation had the following objectives: a) to identify the outcomes and benefits; b) to enable learning; c) to explore staff experiences, training and support needs; d) to scope the financial and service delivery implications. Methods A service evaluation of the pilot (delivered May 2019-March 2020,) including process data and feedback gathered using semi-structured questions via questionnaires, interviews and focus groups with young adults, siblings, parent/ guardians and staff. Results Sixty short breaks delivered, accessed by 15 young adults >18 years and their families. Evaluation participants: 3 young adults, 6 siblings, 10 parent/guardians, 11 staff. Highly positive feedback with no withdrawals from the pilot. Triangulated themes: a) social and developmental benefits for young adults; b) respite benefits for families; c) achieving parents' trust, d) ability of adult hospice to meet complex care needs; e) positive staff experiences; f) identified areas for service improvement. Conclusion Persuasive evidence from the evaluation resulted in the service being commissioned. The report offers recommendations for adult hospices aspiring to develop young adult palliative care services. How innovative or of interest is the abstract? To our knowledge this is the first young adult short break service in a UK adult hospice.
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<a href="http://doi.org/10.1136/spcare-2022-HUNC.5" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.5</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
Adult
BMJ Supportive and Palliative Care
Child
Clinical Article
conference abstract
Drug Withdrawal
Female
Finlinson H
Health Care Delivery
Hospice
Human
Human Experiment
Interview
Learning
Male
March List 2023
outcome assessment
Palliative Therapy
positive feedback
Questionnaire
Sibling
Spathis A
Trust
Young Adult
-
Dublin Core
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Title
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February 2024 List
Text
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February List 2024
URL Address
<a href="http://doi.org/10.1002/14651858.CD014873.pub2" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/14651858.CD014873.pub2</a>
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A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments
Publisher
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Cochrane Database of Systematic Reviews
Date
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2023
Subject
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Humans; Child; child; Adolescent; Quality of Life; human; inflammatory bowel disease; quality of life; Family; chronic pain; social support; family; child parent relation; social work; prognosis; systematic review; sibling; Chronic Pain; Analgesics Opioid; ethnography; Anthropology Cultural; personal experience; cultural anthropology; outcome assessment; health care personnel; wellbeing; health service; disease severity; adolescent; social isolation; headache; analgesia; pediatric patient; abdominal pain; social care; peer group; patient-reported outcome; pain assessment; Review; racism; narcotic analgesic agent; pain severity; fibromyalgia; complex regional pain syndrome; endometriosis; family life; juvenile rheumatoid arthritis; migraine; musculoskeletal pain
Creator
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France E; Uny I; Turley R; Thomson K; Noyes J; Jordan A; Forbat L; Caes L; Silveira Bianchim M
Description
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Background: Chronic non-cancer pain in childhood is widespread, affecting 20% to 35% of children and young people worldwide. For a sizeable number of children, chronic non-cancer pain has considerable negative impacts on their lives and quality of life, and leads to increased use of healthcare services and medication. In many countries, there are few services for managing children’s chronic non-cancer pain, with many services being inadequate. Fourteen Cochrane Reviews assessing the effects of pharmacological, psychological, psychosocial, dietary or physical activity interventions for managing children’s chronic non-cancer pain identified a lack of high-quality evidence to inform pain management. To design and deliver services and interventions that meet the needs of patients and their families, we need to understand how children with chronic non-cancer pain and their families experience pain, their views of services and treatments for chronic pain, and which outcomes are important to them. Objectives: 1. To synthesise qualitative studies that examine the experiences and perceptions of children with chronic non-cancer pain and their families regarding chronic non-cancer pain, treatments and services to inform the design and delivery of health and social care services, interventions and future research. 2. To explore whether our review findings help to explain the results of Cochrane Reviews of intervention effects of treatments for children's chronic non-cancer pain. 3. To determine if programme theories and outcomes of interventions match children and their families’ views of desired treatments and outcomes. 4. To use our findings to inform the selection and design of patient-reported outcome measures for use in chronic non-cancer pain studies and interventions and care provision to children and their families. The review questions are:. 1. How do children with chronic non-cancer pain and their families conceptualise chronic pain?. 2. How do children with chronic non-cancer pain and their families live with chronic pain?. 3. What do children with chronic non-cancer pain and their families think of how health and social care services respond to and manage their child’s chronic pain?. 4. What do children with chronic non-cancer pain and their families conceptualise as ‘good’ chronic pain management and what do they want to achieve from chronic pain management interventions and services?. Search methods: Review strategy: we comprehensively searched 12 bibliographic databases including MEDLINE, CINAHL, PsycInfo and grey literature sources, and conducted supplementary searches in 2020. We updated the database searches in September 2022. Selection criteria: To identify published and unpublished qualitative research with children aged 3 months to 18 years with chronic non-cancer pain and their families focusing on their perceptions, experiences and views of chronic pain, services and treatments. The final inclusion criteria were agreed with a patient and public involvement group of children and young people with chronic non-cancer pain and their families. Data collection and analysis: We conducted a qualitative evidence synthesis using meta-ethnography, a seven-phase, systematic, interpretive, inductive methodology that takes into account the contexts and meanings of the original studies. We assessed the richness of eligible studies and purposively sampled rich studies ensuring they addressed the review questions. Cochrane Qualitative Methods Implementation Group guidance guided sampling. We assessed the methodological limitations of studies using the Critical Appraisal Skills Programme tool. We extracted data on study aims, focus, characteristics and conceptual findings from study reports using NVivo software. We compared these study data to determine how the studies related to one another and grouped studies by pain conditions for synthesis. We used meta-ethnography to synthesise each group of studies separately before synthesising them all together. Analysis and interpretation of studies involved children ith chronic non-cancer pain and their families and has resulted in theory to inform service design and delivery. Sampling, organising studies for synthesis, and analysis and interpretation involved our patient and public involvement group who contributed throughout the conduct of the review. We used the GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research) approach to assess our confidence in each review finding. We used a matrix approach to integrate our findings with existing Cochrane Reviews on treatment effectiveness for children’s chronic non-cancer pain. Main results: We synthesised 43 studies sampled from 170 eligible studies reported in 182 publications. Included studies involved 633 participants. GRADE-CERQual assessments of findings were mostly high (n = 21, 58%) or moderate (n = 12, 33%) confidence with three (8%) low or very low confidence. Poorly managed, moderate or severe chronic non-cancer pain had profound adverse impacts on family dynamics and relationships; family members’ emotions, well-being, autonomy and sense of self-identity; parenting strategies; friendships and socialising; children’s education and future employment prospects; and parental employment. Most children and parents understood chronic non-cancer pain as having an underlying biological cause and wanted curative treatment. However, families had difficulties seeking and obtaining support from health services to manage their child’s pain and its impacts. Children and parents felt that healthcare professionals did not always listen to their experiences and expertise, or believe the child's pain. Some families repeatedly visited health services seeking a diagnosis and cure. Over time, some children and families gave up hope of effective treatment. Outcomes measured within trials and Cochrane Reviews of intervention effects did not include some outcomes of importance to children and families, including impacts of pain on the whole family and absence of pain. Cochrane Reviews have mainly neglected a holistic biopsychosocial approach, which specifies the interrelatedness of biological, psychological and social aspects of illness, when selecting outcome measures and considering how chronic pain management interventions work. Authors' conclusions: We had high or moderate confidence in the evidence contributing to most review findings. Further research, especially into families' experiences of treatments and services, could strengthen the evidence for low or very low confidence findings. Future research should also explore families' experiences in low- to middle-income contexts; of pain treatments including opioid use in children, which remains controversial; and of social care services. We need development and testing of family-centred interventions and services acceptable to families. Future trials of children's chronic non-cancer pain interventions should include family-centred outcomes. Copyright © 2023 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.
Identifier
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<a href="http://doi.org/10.1002/14651858.CD014873.pub2" target="_blank" rel="noreferrer noopener">10.1002/14651858.CD014873.pub2</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
abdominal pain
Adolescent
Analgesia
Analgesics Opioid
Anthropology Cultural
Caes L
Child
Child Parent Relation
Chronic Pain
Cochrane Database of Systematic Reviews
Complex Regional Pain Syndrome
cultural anthropology
Disease Severity
endometriosis
ethnography
Family
Family Life
February List 2024
Fibromyalgia
Forbat L
France E
Headache
Health Care Personnel
Health Service
Human
Humans
inflammatory bowel disease
Jordan A
juvenile rheumatoid arthritis
migraine
musculoskeletal pain
narcotic analgesic agent
Noyes J
outcome assessment
Pain Assessment
Pain Severity
patient-reported outcome
pediatric patient
Peer Group
Personal Experience
Prognosis
Quality Of Life
racism
Review
Sibling
Silveira Bianchim M
Social Care
Social Isolation
Social Support
Social Work
Systematic Review
Thomson K
Turley R
Uny I
Wellbeing
-
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Title
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July 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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July List 2023
URL Address
<a href="http://doi.org/10.1055/s-0043-1768488" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1055/s-0043-1768488</a>
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Advance Care Planning and Parent-Reported End-of-Life Outcomes in the Neonatal Intensive Care Unit
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American Journal of Perinatology
Date
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2023
Subject
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advance care planning; neonatal intensive care unit; Advance Care Planning; article; child; decision making; expectation; human; infant; Infant Newborn; outcome assessment; rank sum test; satisfaction; shared decision making
Creator
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Lin M; Williams D; Vitcov G; Sayeed S; DeCourcey DD; Wolfe J; Cummings C
Description
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OBJECTIVE: This study aimed to evaluate the impact of advance care planning (ACP) on parent-reported end-of-life (EOL) outcomes in the neonatal intensive care unit (NICU). STUDY DESIGN: Single-center, cross-sectional mixed-methods survey study of bereaved parents who experienced the death of a child in the Boston Children's Hospital NICU between 2010 and 2021. Logistic regression, chi-square test, Fisher's exact test, and Wilcoxon rank-sum test were used to evaluate the relationship between ACP and parent-reported EOL outcomes. Qualitative content was analyzed through inductive coding. RESULT(S): A total of 40/146 (27%) of eligible parents responded to our survey. There was a significant association between ACP and improved EOL care processes and parental satisfaction with communication. Parents with ACP were more likely to report goal-concordant care and higher levels of perceived shared decision-making. Qualitatively, emerging themes in parents' descriptions of goal-concordant care included misaligned expectations and communication. Emerging themes for parental preparedness included infant symptoms, logistical aspects, impact on parents, and degrees of preparedness. For decisional regret, the primary theme was reevaluating supports. CONCLUSION(S): ACP is associated with improved EOL care outcomes and parents qualitatively conceptualize goal-concordant care, preparedness for their child's death, and decisional regret in nuanced ways. Families should have the opportunity to participate in ACP discussions that meet their unique communication and decision-making needs. KEY POINTS: . ACP is associated with improved parent-reported end-of-life outcomes.. . Parents conceptualize end-of-life care outcomes in nuanced ways.. . Families should have the opportunity to participate in ACP discussions that meet their unique needs..Copyright Thieme. All rights reserved.
Identifier
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<a href="http://doi.org/10.1055/s-0043-1768488" target="_blank" rel="noreferrer noopener">10.1055/s-0043-1768488</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
Advance Care Planning
American Journal of Perinatology
Article
Child
Cummings C
Decision Making
DeCourcey DD
Expectation
Human
Infant
Infant Newborn
July List 2023
Lin M
Neonatal Intensive Care Unit
outcome assessment
rank sum test
Satisfaction
Sayeed S
shared decision making
Vitcov G
Williams D
Wolfe J
-
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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/10.1097/MOP.0000000000000851" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/MOP.0000000000000851</a>
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Title
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Advances in pediatric psychooncology
Publisher
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Current Opinion in Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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child; human; palliative therapy; adult; childhood cancer; review; young adult; sibling; attention; distress syndrome; outcome assessment; cancer patient; infant; psychosocial care; bereavement; cancer center; psycho-oncology; survivorship; patient reported outcome; chimeric antigen receptor T-cell immunotherapy; evidence based practice center; hereditary tumor syndrome; toddler
Creator
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Wiener L; Devine K A; Thompson A L
Description
An account of the resource
Purpose of reviewThis article reviews the current literature on psychosocial care of children with cancer with particular focus on evidence-based standards of care, including developments in systematic distress screening, utilization of patient-reported outcomes, evidence-based interventions, survivorship, palliative care and bereavement.Recent findingsAlthough attention to the psychosocial needs of the child and family is increasingly recognized as an essential element of care for children with cancer, implementing evidence-based care remains suboptimal. Recent efforts have focused on utilizing technology to improve the reach of these interventions and to enhance engagement with special populations, such as adolescents and young adults. Increasing data elucidate the long-term psychological and physical late effects of childhood cancer survivorship and the impact of cancer on siblings and the family. Gaps in clinical care and important directions for future research include the needs of infants and toddlers, overlooked minorities, and patients with hereditary tumor predisposition syndromes, and attention to the psychosocial impact of exciting new treatments, such as autologous chimeric antigen receptor (CAR) T-cell therapy.SummaryThe evidence base for the psychosocial standards of care for children with cancer and their families continues to grow, but more work is needed to successfully implement these standards across pediatric cancer centers.
Identifier
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<a href="http://doi.org/10.1097/MOP.0000000000000851" target="_blank" rel="noreferrer noopener">10.1097/MOP.0000000000000851</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
Adult
Attention
Bereavement
cancer center
Cancer Patient
Child
Childhood Cancer
chimeric antigen receptor T-cell immunotherapy
Current Opinion In Pediatrics
Devine K A
Distress Syndrome
evidence based practice center
hereditary tumor syndrome
Human
Infant
Oncology 2020 List
outcome assessment
Palliative Therapy
patient reported outcome
Psycho-Oncology
psychosocial care
Review
Sibling
Survivorship
Thompson A L
toddler
Wiener L
Young Adult
-
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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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://www.sciencedirect.com/science/article/pii/S0885392423004475?via%3Dihub">https://www.sciencedirect.com/science/article/pii/S0885392423004475?via%3Dihub</a>
Dublin Core
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Title
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Are we on the same page? Exploring pediatric patients' involvement with advance care planning
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
cystic fibrosis; child; adult; female; human; male; caregiver; palliative therapy; neurology; outcome assessment; young adult; review; Medline; advance care planning; systematic review; emotion; randomized controlled trial (topic); acquired immune deficiency syndrome; adolescent; Advance Care Planning; patient participation; pediatric patient
Creator
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Aasen ERHV; oSovik ML; Stordal K; Lee 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).
Identifier
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<a href="https://www.sciencedirect.com/science/article/pii/S0885392423004475?via%3Dihub">10.1016/j.jpainsymman.2023.04.003</a>
2023
Aasen ERHV
acquired immune deficiency syndrome
Adolescent
Adult
Advance Care Planning
Caregiver
Child
Cystic Fibrosis
Emotion
Female
Human
Journal of Pain and Symptom Management
June 2022 List
Lee A
Male
Medline
Neurology
oSovik ML
outcome assessment
Palliative Therapy
Patient Participation
pediatric patient
Randomized Controlled Trial (topic)
Review
Stordal K
Systematic Review
Young Adult
-
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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September 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
September 2022 List
URL Address
<a href="http://doi.org/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/02692163221093145</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/.
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Challenges and Incentives for Integrating Person-Centred Outcome Measures Into Routine Paediatric Palliative Care: Health, Social Care and Commissioner Perspectives
Publisher
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Palliative Medicine
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; Palliative therapy; Conference abstract; Semi-structured interview; Outcome assessment; Care behavior; Genetic transcription; Social care
Creator
An entity primarily responsible for making the resource
Scott H; Coombes L; Braybrook D; Roach A; Harardottir D; Bristowe K; Ellis-Smith C; Chambers L; Bluebond-Langner M; Farsides B; Murtagh F; Harding R
Description
An account of the resource
Background/aims: To successfully integrate a newly developed measure into clinical practice, the challenges and incentives for implementation must be understood, and these are specific to each measure. Previous research has focused on disease-specific measures, or the use of outcome measures in adult palliative care. Evidence is needed to ensure successful integration of new person-centred outcome measures (PCOMs) in the paediatric palliative care context.
Identifier
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<a href="http://doi.org/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">10.1177/02692163221093145</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
Bluebond-Langner M
Braybrook D
Bristowe K
care behavior
Chambers L
Child
conference abstract
Coombes L
Ellis-Smith C
Farsides B
genetic transcription
Harardottir D
Harding R
Murtagh F
outcome assessment
Palliative Medicine
Palliative Therapy
Roach A
Scott H
Semi-Structured Interview
September 2022 List
Social Care
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
July 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2020 List
URL Address
<a href="http://doi.org/10.1097/pcc.0000000000001868" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/pcc.0000000000001868</a>
Dublin Core
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Title
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Characteristics and Outcomes of Critical Illness in Children With Feeding and Respiratory Technology Dependence
Publisher
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Adolescent; Artificial/adverse effects/*statistics & numerical data; Biomedical Technology; Case-Control Studies; Child; Critical Care/*methods; Critical Illness/therapy; Health Care/*statistics & numerical data; Humans; Infant; Intensive Care Units; Newborn; Outcome Assessment; Parenteral Nutrition; Pediatric/statistics & numerical data; Preschool; Prospective Studies; Respiration; Severity of Illness Index; Total/adverse effects/*statistics & numerical data
Creator
An entity primarily responsible for making the resource
Heneghan J A; Reeder R W; Dean J M; Meert K L; Berg R A; Carcillo J; Newth C J L; Dalton H; Tamburro R; Pollack M M
Description
An account of the resource
OBJECTIVES: Children with dependence on respiratory or feeding technologies are frequently admitted to the PICU, but little is known about their characteristics or outcomes. We hypothesized that they are at increased risk of critical illness-related morbidity and mortality compared with children without technology dependence. DESIGN: Secondary analysis of prospective, probability-sampled cohort study of children from birth to 18 years old. Demographic and clinical characteristics were assessed. Outcomes included death, survival with new morbidity, intact survival, and survival with functional status improvement. SETTING: General and cardiovascular PICUs at seven participating children's hospitals as part of the Trichotomous Outcome Prediction in Critical Care study. SUBJECTS: Children from birth to 18 years of age as part of the Trichotomous Outcome Prediction in Critical Care study. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Children with technology dependence composed 19.7% (1,989/10,078) of PICU admissions. Compared with those without these forms of technology dependence, these children were younger, received more ICU-specific therapeutics, and were more frequently readmitted to the ICU. Death occurred in 3.7% of technology-dependent patients (n = 74), and new morbidities developed in 4.5% (n = 89). Technology-dependent children who developed new morbidities had higher Pediatric Risk of Mortality scores and received more ICU therapies than those who did not. A total of 3.0% of technology-dependent survivors (n = 57) showed improved functional status at hospital discharge. CONCLUSIONS: Children with feeding and respiratory technology dependence composed approximately 20% of PICU admissions. Their new morbidity rates are similar to those without technology dependence, which contradicts our hypothesis that children with technology dependence would demonstrate worse outcomes. These comparable outcomes, however, were achieved with additional resources, including the use of more ICU therapies and longer lengths of stay. Improvement in functional status was seen in some technology-dependent survivors of critical illness.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/pcc.0000000000001868" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000001868</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Adolescent
Artificial/adverse effects/*statistics & numerical data
Berg R A
Biomedical Technology
Carcillo J
Case-Control Studies
Child
Critical Care/*methods
Critical Illness/therapy
Dalton H
Dean J M
Health Care/*statistics & numerical data
Heneghan J A
Humans
Infant
Intensive Care Units
July 2020 List
Meert K L
Newborn
Newth C J L
outcome assessment
Parenteral Nutrition
Pediatric Critical Care Medicine
Pediatric/statistics & Numerical Data
Pollack M M
Preschool
Prospective Studies
Reeder R W
Respiration
Severity Of Illness Index
Tamburro R
Total/adverse effects/*statistics & numerical data
-
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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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1016/j.ijporl.2014.06.027" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ijporl.2014.06.027</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
Comparison of treatment modalities in syndromic children with Obstructive Sleep Apnea-A randomized cohort study
Publisher
An entity responsible for making the resource available
International Journal of Pediatric Otorhinolaryngology
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
quality of life; major clinical study; priority journal; follow up; randomized controlled trial; mucopolysaccharidosis; outcome assessment; clinical effectiveness; human; article; child; female; male; controlled study; adenotonsillectomy; apnea hypopnea index; Continuous Positive Airway Pressure; CPAP device; Down syndrome; Epworth sleepiness scale; ess-c; Mucopolysaccharidoses; osa-18; Pediatric obstructive sleep apnea; positive end expiratory pressure; radiofrequency ablation device; sleep disordered breathing/su [Surgery]; sleep disordered breathing/th [Therapy]; treatment outcome; breathing difficulties; MPSI; MPSII; MPSIII; MPSIIIA; MPSIIIB; MPSVI; MPSVII; surgical interventions; physical interventions; adenotonsillectomy
Creator
An entity primarily responsible for making the resource
Sudarsan S S; Paramasivan V K; Arumugam S V; Murali S; Kameswaran M
Description
An account of the resource
Introduction: Obstructive Sleep Apnea (OSA) is a common medical problem in adults that is becoming increasingly recognized in children. It occurs in the pediatric age group, from newborns to teens. More recently, many specialists have estimated OSA prevalence to be between 5 and 6%. However, in syndromic children, the prevalence of OSA can be from 50 to 100%, having a significant effect on their Quality-of-Life. As they are a challenging population for management, it is essential to evaluate them thoroughly before planning appropriate intervention. Objective: To compare the efficacy of Adenotonsillectomy (T&A) and Continuous Positive Airway Pressure (CPAP) in syndromic children [Down syndrome (DS) and Mucopolysaccharidoses (MPS)] with Obstructive Sleep Apnea (OSA). Materials and methods: In a prospective, randomized, cohort comparative study, 124 syndromic children (DS and MPS) aged between 6 and 12 years were recruited from a private MPS support group and the Down Syndrome Society, Chennai. A standard assessment was performed on all children who entered the study including a full overnight Polysomnogram (PSG), Epworth Sleepiness Scale-Children (ESS-C) and Quality-of-Life (QOL) tool OSA-18. The children with positive PSG who consented for the study (n= 80) were randomly distributed to two groups, T&A group & CPAP group. The children were followed up with repeat PSG, clinical evaluation, ESS-C and Quality-of-Life (QOL) tool OSA-18 for a period of 1 year. Observation and results: Follow-up was available for 73 syndromic children. Both the groups, T&A group and CPAP group, showed statistically significant (p<. 0.05) improvement in Apnea-Hypoapnea Index (AHI), ESS-C, QOL from the intervention. In our study, T&A showed equal outcome compared to CPAP. The contrasting feature between the two groups was that CPAP use gave immediate sustained improvement while T&A gave gradual progressive improvement of symptoms over a period of 1 year. Conclusion: On average, T&A gives equal outcomes as CPAP and it can be suggested as a first-line treatment in this group of syndromic children. © 2014.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ijporl.2014.06.027" target="_blank" rel="noreferrer noopener">10.1016/j.ijporl.2014.06.027</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).
2014
adenotonsillectomy
apnea hypopnea index
Article
Arumugam S V
breathing difficulties
Child
Clinical Effectiveness
Continuous Positive Airway Pressure
Controlled Study
CPAP device
Down Syndrome
Epworth sleepiness scale
ess-c
Female
Follow Up
Human
International Journal of Pediatric Otorhinolaryngology
Kameswaran M
Major Clinical Study
Male
MPSI
MPSII
MPSIII
MPSIIIA
MPSIIIB
MPSVI
MPSVII
Mucopolysaccharidoses
Mucopolysaccharidosis
Murali S
osa-18
outcome assessment
Paramasivan V K
Pediatric obstructive sleep apnea
physical interventions
positive end expiratory pressure
Priority Journal
Quality Of Life
radiofrequency ablation device
Randomized Controlled Trial
sleep disordered breathing/su [Surgery]
sleep disordered breathing/th [Therapy]
Sudarsan S S
surgical interventions
Treatment Outcome
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1016/j.brs.2016.07.009" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.brs.2016.07.009</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
Deep Brain Stimulation in Rare Inherited Dystonias
Publisher
An entity responsible for making the resource available
Brain Stimulation
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
adolescent; clinical assessment; disease duration; time to treatment; dystonic disorder/su [Surgery]; priority journal; follow up; school child; outcome assessment; Dystonia; clinical effectiveness; gabapentin/dt [Drug Therapy]; human; article; child; adult; clinical article; aged; surgery; middle aged; disease severity; dystonia; phenotype; rating scale; ataxia telangiectasia/di [Diagnosis]; ataxia telangiectasia/dt [Drug Therapy]; atypical dopa responsive dystonia/di [Diagnosis]; atypical dopa responsive dystonia/dt [Drug Therapy]; baclofen/dt [Drug Therapy]; benzodiazepine derivative/dt [Drug Therapy]; brain depth stimulation; Burke Fahn Marsden Dystonia Rating Scale; cerebellar ataxia/di [Diagnosis]; cerebellar ataxia/dt [Drug Therapy]; chorea/di [Diagnosis]; chorea/dt [Drug Therapy]; clobazam/dt [Drug Therapy]; clonazepam/dt [Drug Therapy]; Deep brain stimulation; diazepam/dt [Drug Therapy]; dystonia/di [Diagnosis]; dystonia/dt [Drug Therapy]; dystonic disorder/th [Therapy]; entacapone/cb [Drug Combination]; entacapone/dt [Drug Therapy]; escitalopram/dt [Drug Therapy]; extrapyramidal syndrome/di [Diagnosis]; extrapyramidal syndrome/dt [Drug Therapy]; haloperidol/dt [Drug Therapy]; Inherited dystonia; levodopa/dt [Drug Therapy]; lorazepam/dt [Drug Therapy]; methylmalonic aciduria/di [Diagnosis]; methylmalonic aciduria/dt [Drug Therapy]; mirtazapine/dt [Drug Therapy]; motor dysfunction assessment; nemaline myopathy/di [Diagnosis]; nemaline myopathy/dt [Drug Therapy]; neuronal ceroid lipofuscinosis/di [Diagnosis]; neuronal ceroid lipofuscinosis/dt [Drug Therapy]; olanzapine/dt [Drug Therapy]; pramipexole/cb [Drug Combination]; pramipexole/dt [Drug Therapy]; preoperative care; risperidone/dt [Drug Therapy]; selegiline/cb [Drug Combination]; selegiline/dt [Drug Therapy]; tetrabenazine/dt [Drug Therapy]; therapy effect; tizanidine/dt [Drug Therapy]; trazodone/dt [Drug Therapy]; Treatment; trihexyphenidyl/cb [Drug Combination]; trihexyphenidyl/dt [Drug Therapy]; trisomy/di [Diagnosis]; trisomy/dt [Drug Therapy]; Wilson disease/di [Diagnosis]; Wilson disease/dt [Drug Therapy]; woodhouse sakati syndrome/di [Diagnosis]; woodhouse sakati syndrome/dt [Drug Therapy]; x trisomy/di [Diagnosis]; x trisomy/dt [Drug Therapy]; tone and motor problems; ataxia telangiectasia; MCM deficiency; NCL; Nemaline myopathy; surgical intervention; Deep Brain Stimulation
Creator
An entity primarily responsible for making the resource
Beaulieu-Boire I; Aquino C C; Fasano A; Poon Y Y; Fallis M; Lang A E; Hodaie M; Kalia S K; Lozano A; Moro E
Description
An account of the resource
Background Rare causes of inherited movement disorders often present with a debilitating phenotype of dystonia, sometimes combined with parkinsonism and other neurological signs. Since these disorders are often resistant to medications, DBS may be considered as a possible treatment. Methods Patients with identified genetic diseases (ataxia-telangiectasia, chorea-achantocytosis, dopa-responsive dystonia, congenital nemaline myopathy, methylmalonic aciduria, neuronal ceroid lipofuscinosis, spinocerebellar ataxia types 2 and 3, Wilson's disease, Woodhouse-Sakati syndrome, methylmalonic aciduria, and X trisomy) and disabling dystonia underwent bilateral GPi DBS (bilateral thalamic Vim nucleus in 1 case). The primary outcome was the difference in the Burke-Fahn-Marsden Dystonia Rating Scale (BFMDRS) between baseline, 1 year and last available follow-up. Preoperative factors such as age at surgery, disease duration at surgery, proportion of life lived with dystonia and severity of dystonia were correlated to the primary outcome. Results Eleven patients were operated between February 2003 and December 2013. Age and duration of disease at time of surgery were 30+/-19 and 12.5+/-15.7 years, respectively. DBS effects on dystonia severity were variable but overall marginally effective, with a mean improvement of 7.9% (p=0.39) at 1-year follow-up and 16.7% (p=0.46) at last follow-up (mean 47.3+/-19.9 months after surgery). No preoperative factors were identified to predict the surgical outcome. Conclusion Our findings support the current knowledge that DBS is modestly effective in treating rare inherited dystonias with a combined phenotype. However, the BFMDRS might not be the best tool to measure outcome in these severely affected patients. Copyright © 2016 Elsevier Inc.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.brs.2016.07.009" target="_blank" rel="noreferrer noopener">10.1016/j.brs.2016.07.009</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).
2016
Adolescent
Adult
Aged
Aquino C C
Article
ataxia telangiectasia
ataxia telangiectasia/di [Diagnosis]
ataxia telangiectasia/dt [Drug Therapy]
atypical dopa responsive dystonia/di [Diagnosis]
atypical dopa responsive dystonia/dt [Drug Therapy]
Baclofen/dt [drug Therapy]
Beaulieu-Boire I
benzodiazepine derivative/dt [Drug Therapy]
Brain Depth Stimulation
Brain Stimulation
Burke Fahn Marsden Dystonia Rating Scale
cerebellar ataxia/di [Diagnosis]
cerebellar ataxia/dt [Drug Therapy]
Child
chorea/di [Diagnosis]
chorea/dt [Drug Therapy]
Clinical Article
clinical assessment
Clinical Effectiveness
clobazam/dt [Drug Therapy]
clonazepam/dt [Drug Therapy]
deep brain stimulation
diazepam/dt [Drug Therapy]
disease duration
Disease Severity
Dystonia
dystonia/di [Diagnosis]
dystonia/dt [Drug Therapy]
Dystonic Disorder/su [surgery]
dystonic disorder/th [Therapy]
entacapone/cb [Drug Combination]
entacapone/dt [Drug Therapy]
escitalopram/dt [Drug Therapy]
extrapyramidal syndrome/di [Diagnosis]
extrapyramidal syndrome/dt [Drug Therapy]
Fallis M
Fasano A
Follow Up
gabapentin/dt [Drug Therapy]
haloperidol/dt [Drug Therapy]
Hodaie M
Human
Inherited dystonia
Kalia S K
Lang A E
levodopa/dt [Drug Therapy]
lorazepam/dt [Drug Therapy]
Lozano A
MCM deficiency
methylmalonic aciduria/di [Diagnosis]
methylmalonic aciduria/dt [Drug Therapy]
Middle Aged
mirtazapine/dt [Drug Therapy]
Moro E
motor dysfunction assessment
NCL
Nemaline myopathy
nemaline myopathy/di [Diagnosis]
nemaline myopathy/dt [Drug Therapy]
neuronal ceroid lipofuscinosis/di [Diagnosis]
neuronal ceroid lipofuscinosis/dt [Drug Therapy]
olanzapine/dt [Drug Therapy]
outcome assessment
Phenotype
Poon Y Y
pramipexole/cb [Drug Combination]
pramipexole/dt [Drug Therapy]
Preoperative Care
Priority Journal
Rating Scale
risperidone/dt [Drug Therapy]
School Child
selegiline/cb [Drug Combination]
selegiline/dt [Drug Therapy]
Surgery
surgical intervention
tetrabenazine/dt [Drug Therapy]
therapy effect
time to treatment
tizanidine/dt [Drug Therapy]
tone and motor problems
trazodone/dt [Drug Therapy]
Treatment
trihexyphenidyl/cb [Drug Combination]
trihexyphenidyl/dt [Drug Therapy]
Trisomy/di [diagnosis]
trisomy/dt [Drug Therapy]
Wilson disease/di [Diagnosis]
Wilson disease/dt [Drug Therapy]
woodhouse sakati syndrome/di [Diagnosis]
woodhouse sakati syndrome/dt [Drug Therapy]
x trisomy/di [Diagnosis]
x trisomy/dt [Drug Therapy]
-
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
January 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January 2018 List
URL Address
<a href="http://doi.org/10.1002/ppul.23840" target="_blank" rel="noreferrer">http://doi.org/10.1002/ppul.23840</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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Early involvement of palliative care in cystic fibrosis in inpatient setting: A quality improvement initiative
Publisher
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Pediatric Pulmonology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
cystic fibrosis; hospital patient; palliative therapy; Total Quality Management; Child; disease exacerbation; e-mail; Human; lung; outcome assessment; pulmonologist; social worker
Creator
An entity primarily responsible for making the resource
Kotwal N; Kilaikode S; Koumbourlis A; Perez G
Description
An account of the resource
Background: Cystic fibrosis (CF) is a life-limiting disease with multiple comorbidities. It has been recommended that palliative care discussions for psychological adjustment and optimal symptom control should be initiated early. However, the palliative care service in this population remains underutilized. Objective: To increase utilization of palliative care services for patients admitted for CF exacerbations. Methods: A SMART aim statement was created with the goal of increasing consults by the palliative care service for patients admitted to the hospital with CF exacerbation. We measured the number of palliative care consult orders placed over a 2-week period. These charts were then reviewed for the presence of corresponding consult orders and notes. We conducted two PDSA (Plan-Do-Study-Act) cycles. The first intervention was sending informational emails to the pulmonary team covering the inpatient service. The second intervention was an educational session for pediatric pulmonologists and fellows to learn from social workers and palliative care specialists about their training and indication for consults. Social workers also helped educate the patients and their families on the additional benefit of palliative care services. Results: Baseline data over a 2-week period suggested that none of the CF inpatients had received involvement from the palliative care team during the corresponding admission. The percentage of CF patients who received palliative care consults increased to 33% from baseline in 5 weeks at the end of the second intervention. Conclusion: The inter-professional quality improvement model was effective in increasing palliative care consults for CF patients admitted to pulmonary service. Educational initiatives regarding palliative care services are an effective intervention to facilitate this process. Further data are required to measure outcomes in the form of feedback from patients, families and providers.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/ppul.23840" target="_blank" rel="noreferrer">10.1002/ppul.23840</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).
2017
Child
Cystic Fibrosis
disease exacerbation
E-mail
Hospital Patient
Human
January 2018 List
Kilaikode S
Kotwal N
Koumbourlis A
lung
outcome assessment
Palliative Therapy
Pediatric Pulmonology
Perez G
pulmonologist
Social Worker
Total Quality Management
-
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
September 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
September 2022 List
URL Address
<a href="http://doi.org/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/02692163221093145</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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Enabling Children and Young People to Take Patient and Public Involvement Roles in Paediatric Palliative Care Research
Publisher
An entity responsible for making the resource available
Palliative Medicine
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; Adolescent; Female; Male; Clinical; Palliative therapy; Conference abstract; Outcome assessment
Creator
An entity primarily responsible for making the resource
Coombes L; Roach A; Leyden D; Scott H; Braybrook D; Harardottir D; Ellis-Smith C; Bristowe K; Harding R
Description
An account of the resource
Background/aims: Patient and public involvement (PPI) is essential to design and deliver meaningful research, but evidence on how to involve children and young people (CYP) in palliative care studies is limited. We aim to develop strategies to engage CYP PPI in paediatric palliative care (PPC) research.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">10.1177/02692163221093145</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).
2022
Adolescent
Braybrook D
Bristowe K
Child
Clinical
conference abstract
Coombes L
Ellis-Smith C
Female
Harardottir D
Harding R
Leyden D
Male
outcome assessment
Palliative Medicine
Palliative Therapy
Roach A
Scott H
September 2022 List
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
October 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
October List 2023
URL Address
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.50" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.50</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
Evaluation Of Temporal Health System Factors Influencing Parallel Palliative Care Referral For Children With Complex Cardiorespiratory Diagnosis And Treatment
Publisher
An entity responsible for making the resource available
Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Palliative Care; child; controlled study; female; human; male; retrospective study; quality of life; palliative therapy; hospice; practice guideline; follow up; outcome assessment; artificial ventilation; clinical article; patient referral; education; consultation; pediatric intensive care unit; awareness; diagnosis; life sustaining treatment; hospital discharge; adolescent; surgery; infant; demographics; conference abstract; e-mail; decision making; trust; length of stay; nurse; writing; community care; heart graft; nursing staff; clinical nurse specialist; apparent life threatening event; organizational restructuring; oxygenation
Creator
An entity primarily responsible for making the resource
Subhash S; Freitas D; Aidoo E; Nkulu G; Chan-Dominy A
Description
An account of the resource
Objectives Palliative care (PC) affirms life with goal to improve quality of life for patients with life-threatening conditions.1 PC referrals are influenced by multiple patient and provider factors, including staff awareness of guidelines, plus wishes of the child and family on preferred place of care.2 3 We evaluated the temporal effect on PC referrals at a quarternary cardiorespiratory paediatric intensive care unit (PICU) following organisational restructuring to integrate people-centred changes amidst complex diagnoses and advanced life-sustaining treatments. Methods Retrospective review of PC referral database between January and December 2022 was conducted, analysed on referral pathway, reviewed with decision-making process, patient demographics and outcome. Results The nurse-led service with ad hoc informal visits to offer PC support following requests from medical team was reorganised since service-level agreement for paediatric PC consultant attendance at our weekly complex care multidisciplinary meetings. Departmental education sessions and trust governance events were platforms to promote staff awareness on service and enhance referral pathway. PC referrals were made for 23 children(M:F 1.3:1), median age 13.8 months (range 10days -16.8years), under categories of life-limiting diagnoses (n=12, 52%) or acute life-threatening events (n=11, 48%), including resuscitative extracorporealmembrane-oxygenation.(Graph 1) Median time from admission to PC referral was 59 days (range 6-162) prior to standardised referral proforma in May2022, this reduced to 36 days (range -35 to 68) and 6 days (range 3-30) per 4-month period. One referral was made 5 weeks prior to an international repatriation for child with life-limiting diagnosis on long-term ventilation. Completed referral forms sent to a designated email address were passed onto PC consultants and clinical nurse specialist. Dedicated weekly PC days provided introductory 'meet-andgreet', follow-up 'check-in' or semi-structured meeting with PC team members for patients, families and staff. PC-led multidisciplinary meetings (including 2 online) were followed by real-time correspondence to medical and nursing staff with feedback, recommendations and action plan. 4 advanced care plans and 3 symptom management plans were completed; 9 hospice and 5 community care nursing team referrals were made whilst 2 families declined hospice. Median hospital length of stay was 69 days (range 6-390). 5 children survived to hospital discharge (3 died at home), and 8 are still in hospital (1 as heart transplant recipient). Conclusion Integrative culture during reorganisation can positively influence paediatric PC referrals. Event-triggered and diagnosis-based cues may help foster PC participation as continuing strategy to respond with support during disease, treatment and psychosocial burden for children and families.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.50" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.50</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
Adolescent
Aidoo E
apparent life threatening event
Archives of Disease in Childhood
Artificial Ventilation
Awareness
Chan-Dominy A
Child
Clinical Article
Clinical Nurse Specialist
community care
conference abstract
Consultation
Controlled Study
Decision Making
Demographics
Diagnosis
E-mail
Education
Female
Follow Up
Freitas D
heart graft
Hospice
hospital discharge
Human
Infant
Length Of Stay
Life Sustaining Treatment
Male
Nkulu G
Nurse
Nursing Staff
October List 2031
organizational restructuring
outcome assessment
Oxygenation
Palliative Care
Palliative Therapy
Patient Referral
Pediatric Intensive Care Unit
Practice Guideline
Quality Of Life
Retrospective Study
Subhash S
Surgery
Trust
writing
-
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
2020 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1177/0269216319886215" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216319886215</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
Examining key sociodemographic characteristics of adolescents and young adults with cancer: A post hoc analysis of the Promoting Resilience in Stress Management randomized clinical trial
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
child; human; palliative therapy; controlled study; female; major clinical study; male; article; adolescent; school child; young adult; quality of life; total quality management; outcome assessment; randomized controlled trial; treatment outcome; cancer center; coping behavior; socioeconomics; Pediatric Quality of Life Inventory; stress management; cancer specific quality of life; Connor-Davidson Resilience Scale; Hope Scale; patient-reported outcome; Psychological Distress Scale; psychosocial development; environmental resilience; post hoc analysis
Creator
An entity primarily responsible for making the resource
Lau N; Bradford M C; Steineck A; Scott S; Bona K; Yi-Frazier J P; McCauley E; Rosenberg A R
Description
An account of the resource
Background: The "Promoting Resilience in Stress Management" intervention is a skills-based, early palliative care intervention with demonstrated efficacy in adolescents and young adults with cancer.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216319886215" target="_blank" rel="noreferrer noopener">10.1177/0269216319886215</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).
2020
Adolescent
Article
Bona K
Bradford M C
cancer center
cancer specific quality of life
Child
Connor-Davidson Resilience Scale
Controlled Study
Coping Behavior
environmental resilience
Female
Hope Scale
Human
Lau N
Major Clinical Study
Male
McCauley E
Oncology 2020 List
outcome assessment
Palliative Medicine
Palliative Therapy
patient-reported outcome
Pediatric Quality of Life Inventory
Post Hoc Analysis
Psychological Distress Scale
psychosocial development
Quality Of Life
Randomized Controlled Trial
Rosenberg A R
School Child
Scott S
Socioeconomics
Steineck A
stress management
Total Quality Management
Treatment Outcome
Yi-Frazier J P
Young Adult
-
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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September 2020 List
Text
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September 2020 List
URL Address
<a href="http://doi.org/10.1089/jpm.2019.0646" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2019.0646</a>
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Title
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Face and Content Validity, Acceptability, and Feasibility of the Adapted Version of the Children's Palliative Outcome Scale: A Qualitative Pilot Study
Publisher
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Journal of palliative medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Belgium; children; instrument; outcome assessment
Creator
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Friedel M; Brichard B; Boonen S; Tonon C; De Terwangne B; Bellis D; Mevisse M; Fonteyne C; Jaspard M; Schruse M; Harding R; Downing J; Namisango E; Degryse J M; Aujoulat I
Description
An account of the resource
Objective: To assess the face and content validity, acceptability and feasibility of a French version of the Children's Palliative Outcome Scale (CPOS). Background(s): Instruments in French used to measure outcomes in pediatric palliative care are lacking. Method(s): After forward-backward translation of the 12-item English CPOS to French, we conducted a qualitative pilot study. During semi structured interviews among children and parents, we used the CPOS, the Schedule for the Evaluation of Individual Quality of Life interview guide (SEIQoL) and the Quality of Life in Life-threatening Illness-Family Carer questionnaire (QOLLTI-F), in addition to three expert meetings with PLTs. Result(s): Fourteen children and adolescents (8-18 years) with life-limiting or life-threatening conditions cared for at home, in hospital or in respite care services, 19 parents, and 9 members of 4 pediatric liaison teams (PLTs) providing palliative care in a Belgian francophone region were included in the study. No families refused to participate. All children with verbal capacities chose to be interviewed in the presence of their parents and a PLT member. The children valued being given the opportunity to share their experiences. New QOL dimensions pertaining to social, emotional, and administrative health-care related issues were added to the original version of the 12-item CPOS, leading to a 22-item CPOS-2. Discussion(s): The CPOS-2 was perceived as relevant and easy to use by the principal stakeholders. Our study paves the way for a large-scale field study assessing its psychometric characteristics and its implementation in routine clinical care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2019.0646" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0646</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
Aujoulat I
Belgium
Bellis D
Boonen S
Brichard B
Children
De Terwangne B
Degryse J M
Downing J
Fonteyne C
Friedel M
Harding R
instrument
Jaspard M
Journal of Palliative Medicine
Mevisse M
Namisango E
outcome assessment
Schruse M
September 2020 List
Tonon C
-
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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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1177/0883073817741054" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0883073817741054</a>
Dublin Core
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Title
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Gait, Balance, and Coordination Impairments in Niemann Pick Disease, Type C1
Publisher
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Journal of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
adolescent; retrospective study; priority journal; scoring system; school child; outcome assessment; preschool child; intervention study; human; article; child; female; male; adult; clinical article; young adult; comparative study; body equilibrium; stabilography; performance; neurologic examination; balance impairment; coordination disorder; gait disorder; Niemann Pick disease; 2 hydroxypropyl beta cyclodextrin; 94035-02-6 (2 hydroxypropyl beta cyclodextrin); case control study; clinical evaluation; disease severity assessment; human development; molecular stability; motion analysis system; NIH NPC Neurologic Severity Scale; research; spatiotemporal analysis; upper limb; vts 270; tone and motor problems; NPC; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Sansare A; Zampieri C; Alter K; Stanley C; Farhat N; Keener L A; Porter F
Description
An account of the resource
This is the first study to objectively measure gait, balance, and upper limb coordination in a group of patients with NPC1 and compare the results to age and gender matched controls. This is also the first study to report effect sizes in these measures. Spatiotemporal gait analysis, static and dynamic posturography, and upper limb reaching motion analysis were performed. The findings showed that the NPC1 subjects had statistically significant deficits on 12 out of the 16 parameters investigated compared to controls, and large effect sizes for all but 1 parameter. When ranking the variables in terms of the effect sizes, the top 5 included at least 1 parameter from each of the 3 motor domains investigated. These results can provide insight to clinical researchers on the selection of outcome measures for longitudinal and interventional studies.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0883073817741054" target="_blank" rel="noreferrer noopener">10.1177/0883073817741054</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).
2 hydroxypropyl beta cyclodextrin
2018
94035-02-6 (2 hydroxypropyl beta cyclodextrin)
Adolescent
Adult
Alter K
Article
balance impairment
body equilibrium
case control study
characteristics
Child
Clinical Article
clinical evaluation
Comparative Study
coordination disorder
disease severity assessment
Farhat N
Female
gait disorder
Human
Human Development
intervention study
Journal of Child Neurology
Keener L A
Male
molecular stability
motion analysis system
Neurologic Examination
Niemann Pick disease
NIH NPC Neurologic Severity Scale
NPC
outcome assessment
performance
Porter F
Preschool Child
Priority Journal
Research
Retrospective Study
Sansare A
School Child
scoring system
spatiotemporal analysis
stabilography
Stanley C
tone and motor problems
Trajectory
Upper limb
vts 270
Young Adult
Zampieri C
-
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
2019 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1002/cncr.32035" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/cncr.32035</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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High-intensity end-of-life care among children, adolescents, and young adults with cancer who die in the hospital: A population-based study from the French national hospital database
Publisher
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Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adolescent; adolescents; adult; article; cancer; cancer chemotherapy; cancer diagnosis; cancer patient; child; children; cohort analysis; controlled study; emergency care; emergency ward; end of life; female; France; hematologic malignancy; hospitalization; human; intensive care unit; major clinical study; male; multicenter study; outcome assessment; palliative care; palliative therapy; retrospective study; terminal care; time of death; young adult; young adults
Creator
An entity primarily responsible for making the resource
Revon-Riviere G; Pauly V; Baumstarck K; Bernard C; Andre N; Gentet J C; Seyler C; Fond G; Orleans V; Michel G; Auquier P; Boyer L
Description
An account of the resource
Background: Efforts to improve the quality of end-of-life (EOL) care depend on better knowledge of the care that children, adolescents, and young adults with cancer receive, including high-intensity EOL (HI-EOL) care. The objective was to assess the rates of HI-EOL care in this population and to determine patient- and hospital-related predictors of HI-EOL from the French national hospital database. Method(s): This was a population-based, retrospective study of a cohort of patients aged 0 to 25 years at the time of death who died at hospital as a result of cancer in France between 2014 and 2016. The primary outcome was HI-EOL care, defined as the occurrence of >=1 chemotherapy session <14 days from death, receiving care in an intensive care unit >=1 time, >1 emergency room admission, and >1 hospitalization in an acute care unit in the last 30 days of life. Result(s): The study included 1899 individuals from 345 hospitals; 61.4% experienced HI-EOL care. HI-EOL was increased with social disadvantage (adjusted odds ratio [AOR], 1.30; 95% confidence interval [CI], 1.03-1.65; P =.028), hematological malignancies (AOR, 2.09; 95% CI, 1.57-2.77; P <.001), complex chronic conditions (AOR, 1.60; 95% CI, 1.23-2.09; P =.001) and care delivered in a specialty center (AOR, 1.70; 95% CI, 1.22-2.36; P =.001). HI-EOL was reduced in cases of palliative care (AOR, 0.31; 95% CI, 0.24-0.41; P <.001). Conclusion(s): A majority of children, adolescents, and young adults experience HI-EOL care. Several features (eg, social disadvantage, cancer diagnosis, complex chronic conditions, and specialty center care) were associated with HI-EOL care. These findings should now be discussed with patients, families, and professionals to define the optimal EOL. Copyright © 2019 American Cancer Society
Identifier
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<a href="http://doi.org/10.1002/cncr.32035" target="_blank" rel="noreferrer noopener">10.1002/cncr.32035</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Adolescent
Adolescents
Adult
Andre N
Article
Auquier P
Baumstarck K
Bernard C
Boyer L
Cancer
Cancer Chemotherapy
Cancer Diagnosis
Cancer Patient
Child
Children
Cohort Analysis
Controlled Study
Emergency Care
Emergency Ward
End Of Life
Female
Fond G
France
Gentet J C
Hematologic Malignancy
Hospitalization
Human
Intensive Care Unit
Major Clinical Study
Male
Michel G
Multicenter Study
Oncology 2019 List
Orleans V
outcome assessment
Palliative Care
Palliative Therapy
Pauly V
Retrospective Study
Revon-Riviere G
Seyler C
Terminal Care
time of death
Young Adult
Young Adults
-
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
October 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.005" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.08.005</a>
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Title
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Impact of Specialized Pediatric Palliative Care: A Systematic Review
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
2019
Subject
The topic of the resource
Medline; child; cohort analysis; female; human; male; palliative therapy; controlled study; pediatrics; outcome assessment; quality of life; systematic review; Palliative care; data extraction; Embase; review; synthesis; Web of Science; PsycINFO; risk assessment; consensus; clinical assessment; Cochrane Library; end of life; global health; patient reported outcome; patient-reported outcomes; randomized controlled trial (topic); selection bias
Creator
An entity primarily responsible for making the resource
Marcus K L; Santos G; Ciapponi A; Comande D; Bilodeau M; Wolfe J; Dussel V
Description
An account of the resource
CONTEXT: Specialized pediatric palliative care (SPPC) is increasingly involved in the care of seriously ill children, yet the evidence on its impact has not been comprehensively reviewed. OBJECTIVE(S): To assess the effects of providing SPPC to seriously ill children on patient-, caregiver-, and systems-level outcomes. METHOD(S): We performed a Systematic Review following Cochrane methods. DATA SOURCES: Medline, Embase, PsycINFO, Global Health, The Cochrane Central Register of Controlled Trials, LILACS, and Web of Science were searched from January 1996 to June 2018. STUDY SELECTION/DATA EXTRACTION: We included randomized controlled, cohort, case-control, and before-after studies in which exposure to SPPC services was the intervention of interest. All outcomes reported in these studies were included. Two investigators independently selected articles, extracted data, and assessed risk of bias of included studies using standardized criteria. RESULT(S): Twenty-four studies were included in qualitative synthesis: one non-randomized controlled trial, 16 cohort studies, and seven before-after studies. Evidence certainty was low. Twenty-one studies had >=1 area with high risk of bias, most commonly selection bias, low group comparability, risk for confounding, and inadequate statistical reporting. Studies analyzed 46 domains, operationalized as 136 distinct outcomes. SPPC was associated with better child quality of life (QOL) scores in all four studies that assessed this outcome. No other outcome showed this consistency. CONCLUSION(S): Receiving SPPC was associated with better child QOL. However, the paucity and low certainty of the evidence precluded any firm recommendations about SPPC practice. Larger collaborative networks and greater consensus regarding SPPC research standards are needed. Copyright © 2019. Published by Elsevier Inc.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.005" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.08.005</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Bilodeau M
Child
Ciapponi A
clinical assessment
Cochrane Library
Cohort Analysis
Comandé D
Consensus
Controlled Study
data extraction
Dussel V
Embase
End Of Life
Female
Global Health
Human
Journal of Pain and Symptom Management
Male
Marcus K L
Medline
October 2019 List
outcome assessment
Palliative Care
Palliative Therapy
patient reported outcome
Patient-reported Outcomes
Pediatrics
Psycinfo
Quality Of Life
Randomized Controlled Trial (topic)
Review
Risk Assessment
Santos G
Selection Bias
synthesis
Systematic Review
Web of Science
Wolfe 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
A name given to the resource
May 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.005" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.08.005</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
Impact of Specialized Pediatric Palliative Care: A Systematic Review
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
2020
Subject
The topic of the resource
end of life; outcome assessment; Palliative care; patient-reported outcomes; pediatrics; systematic review
Creator
An entity primarily responsible for making the resource
Marcus K L; Santos G; Ciapponi A; Comandé D; Bilodeau M; Wolfe J; Dussel V
Description
An account of the resource
Context Specialized pediatric palliative care (SPPC) is increasingly involved in the care of seriously ill children, yet the evidence on its impact has not been comprehensively reviewed. Objective The objective of this study was to assess the effects of providing SPPC to seriously ill children on patient-, caregiver-, and systems-level outcomes. Methods We performed a Systematic Review following Cochrane methods. Data sources: Medline, Embase, PsycINFO, Global Health, The Cochrane Central Register of Controlled Trials, LILACS, and Web of Science were searched from January 1996 to June 2018. Study selection/data extraction: We included randomized controlled, cohort, case-control, and before-after studies in which exposure to SPPC services was the intervention of interest. All outcomes reported in these studies were included. Two investigators independently selected articles, extracted data, and assessed risk of bias of included studies using standardized criteria. Results Twenty-four studies were included in qualitative synthesis: one nonrandomized controlled trial, 16 cohort studies, and seven before-after studies. Evidence certainty was low. Twenty-one studies had one or more area with high risk of bias, most commonly selection bias, low group comparability, risk for confounding, and inadequate statistical reporting. Studies analyzed 46 domains, operationalized as 136 distinct outcomes. SPPC was associated with better child quality of life scores in all four studies that assessed this outcome. No other outcome showed this consistency. Conclusion Receiving SPPC was associated with better child quality of life. However, the paucity and low certainty of the evidence precluded any firm recommendations about SPPC practice. Larger collaborative networks and greater consensus regarding SPPC research standards are needed.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.005" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.08.005</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
Bilodeau M
Ciapponi A
Comandé D
Dussel V
End Of Life
Journal of Pain and Symptom Management
Marcus K L
May 2020 List
outcome assessment
Palliative Care
Patient-reported Outcomes
Pediatrics
Santos G
Systematic Review
Wolfe 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
A name given to the resource
February 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2023.10.015" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2023.10.015</a>
Dublin Core
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Title
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Improving Prenatal Palliative Care Consultation Using Diagnostic Trigger Criteria: Improving Prenatal Palliative Care Consultation through Quality Improvement
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; diagnosis; article; controlled study; female; human; palliative therapy; consultation; outcome assessment; congenital malformation; patient referral; eligibility; pregnancy; total quality management
Creator
An entity primarily responsible for making the resource
Lin M; Rholl E; Andescavage N; Ackerman O; Fisher D; Lanzel AF; Mahmood LA
Description
An account of the resource
Three percent of pregnancies are complicated by congenital anomalies. Prenatal integration of pediatric palliative care (PPC) may be hindered by non-standardized PPC referral processes. This quality improvement (QI) project aimed to improve prenatal PPC consultation using a diagnostic trigger list. Measures: Main outcome measure was the percentage of prenatal PPC consults completed based on diagnostic trigger list eligibility. Balancing measures included stakeholder perspectives on PPC consults and products. Intervention: Interventions included creation and implementation of a diagnostic trigger list for prenatal PPC consultation, educational initiatives with stakeholders, and iterative modifications of our prenatal consultation process. Outcomes: Interventions increased consultation rates ≥80% during the first six months of QI implementation (baseline vs. post-interventions) although this increase was not consistently sustained over a 12-month period. Conclusions/lessons learned: Diagnostic trigger lists improve initial rates of prenatal PPC consultation and additional interventions are likely needed to sustain this increase.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2023.10.015" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.10.015</a>
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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
Ackerman O
Andescavage N
Article
Child
Congenital Malformation
Consultation
Controlled Study
Diagnosis
eligibility
February List 2024
Female
Fisher D
Human
Journal of Pain and Symptom Management
Lanzel AF
Lin M
Mahmood LA
outcome assessment
Palliative Therapy
Patient Referral
Pregnancy
Rholl E
Total Quality Management
-
Dublin Core
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Title
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February 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/141/1_MeetingAbstract/393">https://pediatrics.aappublications.org/content/141/1_MeetingAbstract/393</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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Increasing accurate palliative care consultation in the NICU
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
caregiver; child; conference abstract; controlled study; human; International Classification of Diseases; length of stay; mortality risk; newborn; nurse practitioner; outcome assessment; palliative therapy; patient referral; satisfaction; staff training; total quality management
Creator
An entity primarily responsible for making the resource
Humphrey L; Schlegel A
Description
An account of the resource
Background: NICU length of stay (LOS) data revealed patient outliers with significantly longer LOS and concomitant increased risk of mortality. Baseline data revealed under-utilization of Pediatric Palliative Care (PPC) consultative services in this population. We desired that those at highest risk of extended LOS with associated mortality receive early PPC consultation. Our multidisciplinary quality improvement project aimed to increase PPC consultation for NICU patients with a life-limiting anomaly identified by trigger-list tool to 80% within one year.
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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).
2018
Caregiver
Child
conference abstract
Controlled Study
February 2020 List
Human
Humphrey L
International Classification of Diseases
Length Of Stay
mortality risk
Newborn
Nurse Practitioner
outcome assessment
Palliative Therapy
Patient Referral
Pediatrics
Satisfaction
Schlegel A
staff training
Total Quality Management
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/144/2_MeetingAbstract/446">https://pediatrics.aappublications.org/content/144/2_MeetingAbstract/446</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
Increasing joy for pediatric palliative care providers: #pactimpact a quality improvement initiative for resiliency in the workplace
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
child; coffee; conference abstract; controlled study; home visit; human; outcome assessment; palliative therapy; patient care; self report; total quality management; Workplace
Creator
An entity primarily responsible for making the resource
Morvant A; Jones E
Description
An account of the resource
Our pediatric palliative care group is called the "Pediatric Advanced Care Team," also known as "PACT." We created a novel system called #PACTimpact to identify situations in which team members go above and beyond for patients providing meaningful impact for our families. We hypothesize that by recognizing the impact we make on families we will bring more joy in the workplace ultimately facilitating improved resiliency. These impacts may be big or small such as conducting an afterhours home visit or bringing a parent a coffee. Problem statement: Pediatric palliative care (PPC) is emotionally difficult and we are at risk for suboptimal resiliency. PPC clinicians may not recognize the full value they provide. Currently, we do not have a system in place for improving joy or resiliency. AIM: By April 2018, we will improve our "joy meter" in our PACT members from our baseline of 53% to 75%. Process for improvement: Utilizing the model for improvement we asked 3 key questions. What are we trying to accomplish: Increased resiliency and joy. How will we know the change is an improvement: Regular periodic surveys of the "joy meter." What change can we make that will result in improvement: Increase recognition of impactful patient care. During the initial PDSA cycle we encouraged team members to tweet impacts using the hashtag #PACTimpact. Assessment of the initial cycle revealed that many team members were unfamiliar with twitter so a post-it note board was utilized as well. The number of impacts recorded increased as a result of this change. The outcome measure was assessed using a SurveyMonkey to have team members rate joy on a sliding scale before and after the intervention. Process measure: Number of impacts recorded. Totaled weekly. Outcome measure: Average team joy on 0-100 scale. Balance measure: Qualitative report of negative impacts on team members Discussion: Our aim was not achieved. Comments indicated our intervention is effective at improving joy. We are planning additional cycles to attain our aim, which was to increase our "joy meter" from our baseline of 53% to 75%. We increased the "joy meter" to 69% after our first three-week cycle. Factors that affected success: We depended on members to notify us about meaningful impact on patient care. Some #PACTimpacts could be missed if members did not self-report or report other positive impacts on patient care. Next steps: We will continue to use our "joy meter" to track joy in the workplace. We will reach out to other departments to ask them to recognize when we are helpful with patient care to broaden our recognition scope. We will consider appointing a wellness officer, and we will continue to track the "joy meter" through interventions as this position is developed.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Child
coffee
conference abstract
Controlled Study
Home Visit
Human
Jones E
March 2020 List
Morvant A
outcome assessment
Palliative Therapy
Patient Care
Pediatrics
Self Report
Total Quality Management
Workplace
-
Dublin Core
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Title
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January 2018 List
Text
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January 2018 List
URL Address
<a href="http://doi.org/10.1097/PCC.0000000000001219" target="_blank" rel="noreferrer">http://doi.org/10.1097/PCC.0000000000001219</a>
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Title
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Moral distress in PICU and neonatal ICU practitioners: A cross-sectional evaluation
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
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distress syndrome; health practitioner; morality; neonatal intensive care unit; pediatric intensive care unit; Adult; Article; burnout; correlation analysis; cross-sectional study; Demography; Female; Hospital care; Human; Intensive Care; linear regression analysis; major clinical study; Male; Maslach Burnout Inventory Depersonalization Subscale; Middle Aged; Mishel Parent Perception of Uncertainty Scale; nurse; outcome assessment; physician; priority journal; Prognosis; Questionnaire; Rating Scale; Revised Moral Distress Scale; Terminal Care; tertiary care center; Uncertainty; work; Young Adult
Creator
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Larson CP; Dryden-Palmer KD; Gibbons C; Parshuram CS
Description
An account of the resource
Objectives: To measure the level of moral distress in PICU and neonatal ICU health practitioners, and to describe the relationship of moral distress with demographic factors, burnout, and uncertainty. Design: Cross-sectional survey. Setting: A large pediatric tertiary care center. Subjects: Neonatal ICU and PICU health practitioners with at least 3 months of ICU experience. Interventions: A 41-item questionnaire examining moral distress, burnout, and uncertainty. Measurements and Main Results: The main outcome was moral distress measured with the Revised Moral Distress Scale. Secondary outcomes were frequency and intensity Revised Moral Distress Scale subscores, burnout measured with the Maslach Burnout Inventory depersonalization subscale, and uncertainty measured with questions adapted from Mishel's Parent Perception of Uncertainty Scale. Linear regression models were used to examine associations between participant characteristics and the measures of moral distress, burnout, and uncertainty. Two-hundred six analyzable surveys were returned. The median Revised Moral Distress Scale score was 96.5 (interquartile range, 69-133), and 58% of respondents reported significant work-related moral distress. Revised Moral Distress Scale items involving end-of-life care and communication scored highest. Moral distress was positively associated with burnout (r<sup>2</sup> = 0.27; p < 0.001) and uncertainty (r<sup>2</sup> = 0.04; p = 0.008) and inversely associated with perceived hospital supportiveness (r<sup>2</sup> = 0.18; p < 0.001). Nurses reported higher moral distress intensity than physicians (Revised Moral Distress Scale intensity subscores: 57.3 vs 44.7; p = 0.002). In nurses only, moral distress was positively associated with increasing years of ICU experience (p = 0.02) and uncertainty about whether their care was of benefit (r<sup>2</sup> = 0.11; p < 0.001) and inversely associated with uncertainty about a child's prognosis (r<sup>2</sup> = 0.03; p = 0.03). Conclusions: In this single-center, cross-sectional study, we found that moral distress is present in PICU and neonatal ICU health practitioners and is correlated with burnout, uncertainty, and feeling unsupported.
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<a href="http://doi.org/10.1097/PCC.0000000000001219" target="_blank" rel="noreferrer">10.1097/PCC.0000000000001219</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Adult
Article
Burnout
Correlation Analysis
Cross-sectional Study
Demography
Distress Syndrome
Dryden-Palmer KD
Female
Gibbons C
health practitioner
Hospital care
Human
Intensive Care
January 2018 List
Larson CP
linear regression analysis
Major Clinical Study
Male
Maslach Burnout Inventory Depersonalization Subscale
Middle Aged
Mishel Parent Perception of Uncertainty Scale
Morality
Neonatal Intensive Care Unit
Nurse
outcome assessment
Parshuram CS
Pediatric Critical Care Medicine
Pediatric Intensive Care Unit
Physician
Priority Journal
Prognosis
Questionnaire
Rating Scale
Revised Moral Distress Scale
Terminal Care
tertiary care center
Uncertainty
Work
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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December 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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December 2019 List
URL Address
<a href="http://doi.org/10.1097/01.ccm.0000551170.37983.db" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.ccm.0000551170.37983.db</a>
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Title
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Palliative care integration in pediatric cardiac intensive care units: A novel champion-based model
Publisher
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Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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child; comorbidity; conceptual framework; conceptual model; conference abstract; consensus; coronary care unit; feasibility study; heart development; heart disease; hospitalization; human; morbidity; outcome assessment; palliative therapy; prognosis; rotation; simulation; total quality management
Creator
An entity primarily responsible for making the resource
Moynihan K; Kaye E; Bailey V; Wolfe J; Thiagarajan R; Snaman J
Description
An account of the resource
Learning Objectives: Integration of pediatric palliative care (PPC) into the management of children with serious illness and their families is widely endorsed by international organizations and experts in the field as standard of care. However, timely referral to, and integration of PPC into the traditionally cure-orientated Cardiac Intensive Care Unit (CICU) remains variable. Despite significant declines in mortality for children with cardiac disease, key challenges confront the pediatric CICU community with regards to prognostication and discussion of goals of care. In the context of significant comorbidities and technological dependence, lengthy hospitalizations and recurrent admissions as well as interventions risking significant morbidity, these patients and families would benefit from PPC involvement across the illness trajectory. Methods: We propose a novel, conceptual framework for palliative care integration into the CICU using expert consensus and literature review. Results: The model utilizes CICU-based, interdisciplinary "champions". Pediatric Palliative Care Champions (PPCCs) would be identified from within the CICU team and receive additional training through PPC courses and rotations with sub-specialty PPC services. PPCCs would perform 3 primary roles. First, their clinical role as a liaison aims to strengthen provision of primary palliative care in daily CICU practice and improve utilization of sub-specialty PPC by encouraging earlier involvement in more complex patients' management. Second, PPCCs will lead educational and communication training of CICU staff including simulation sessions, focused on eliciting preferences, discussing prognosis, providing difficult news, assessing hopes and worries, and making goal-based recommendations. Third, PPCCs will be integral in CICU operational aspects and quality improvement initiatives including the development of CICU protocols and standard operating procedures to enhance the provision of high quality care at the end of life. Conclusions: This novel conceptual model for integration of PPC into CICUs is designed for adaptability in the context of cultural, financial, personnel, and logistic needs and constraints unique to each institution. While the PPCC framework offers several unique advantages over other care models, barriers to implementation are anticipated. Further research is needed to investigate the feasibility, acceptability, and potential efficacy of this model on standard outcome measures as well as patient- and parent-reported metrics.
Identifier
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<a href="http://doi.org/10.1097/01.ccm.0000551170.37983.db" target="_blank" rel="noreferrer noopener">10.1097/01.ccm.0000551170.37983.db</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Bailey V
Child
Comorbidity
Conceptual Framework
conceptual model
conference abstract
Consensus
coronary care unit
Critical Care Medicine
December 2019 List
Feasibility Study
heart development
heart disease
Hospitalization
Human
Kaye E
Morbidity
Moynihan K
outcome assessment
Palliative Therapy
Prognosis
Rotation
Simulation
Snaman J
Thiagarajan R
Total Quality Management
Wolfe J
-
Dublin Core
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Title
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November 2022 List
Text
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November 2022 List
URL Address
<a href="http://doi.org/10.1016/j.ajogmf.2022.100725" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.ajogmf.2022.100725</a>
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Patient-Centered Perinatal Palliative Care: Family Birth Plans, Outcomes, and Resource Utilization in a Diverse Cohort
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American Journal of Obstetrics & Gynecology MFM
Date
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2022
Subject
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Article; Child; Cohort Analysis; Comfort; Consultation; Controlled Study; Demographics; Expectation; Female; Fetus; Fetus Malformation; Hospice; Human; Income Group; Infant; Newborn; Outcome Assessment; Palliative Therapy; Postpartum Hemorrhage; Prenatal Diagnosis; Prognosis; Retrospective Study; Trisomy 13
Creator
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Buskmiller C; Ho S; Chen M; Gants S; Crowe E; Lopez S
Description
An account of the resource
BACKGROUND: Perinatal palliative care (PPC) is an emerging concept in fetal medicine that offers quality of life options and anticipatory grief management for families of fetuses with complex conditions. Few PPC outcomes are detailed in peer-reviewed literature. OBJECTIVE(S): We aimed to describe outcomes of PPC at UT Fetal Center and Women and Infants Services at Children's Memorial Hermann. STUDY DESIGN: This is a retrospective cohort of families receiving PPC for life-limiting fetal diagnosis, such as trisomy 13 or 18 and some major structural anomalies, between 2016 and 2020. The primary outcome was whether delivery events matched families' birth plans, including fetal/neonatal clinical course matching expectations described by consultant notes. Secondary outcomes included maternal safety outcomes, use of perinatal interventions, delivery outcomes, and resource utilization outcomes. RESULT(S): Of 187 PPC consults, delivery events matched families' plans and clinicians' expectations in 89% of cases (165/185). 39% (73/187) of families requested some perinatal interventions, 64% of whom planned postnatal comfort care even while choosing antenatal interventions. Demographics and median income were similar between families who chose some interventions and those who chose comfort care. Patients choosing any interventions had more mismatches between their plans and delivery events (19% vs 2%, p < 0.001), were more likely to change their plans (24% vs 6%, p=0.001), and not unexpectedly used more healthcare resources. They were also more likely to have intraamniotic infection and postpartum hemorrhage (9% vs 22%, p=0.02), but this was associated with mode of delivery and not choice of interventions. CONCLUSION(S): Most families' perinatal experiences matched birth plans and expectations in this PPC program. Families who desired interventions used more healthcare resources, but often did so with plans for postnatal comfort care, demonstrating insight into neonatal prognosis but achieving value-consistent goals, like meeting a live neonate. PPC was safe for maternal patients and equitable across racial, ethnic, and income groups. PPC and some perinatal interventions are options for care of the whole family in complex fetal medicine.Copyright © 2022 Elsevier Ltd. All rights reserved.
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<a href="http://doi.org/10.1016/j.ajogmf.2022.100725" target="_blank" rel="noreferrer noopener">10.1016/j.ajogmf.2022.100725</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).
Article
Child
Female
Fetus
Infant
Newborn
2022
American Journal of Obstetrics & Gynecology MFM
Buskmiller C
Chen M
Cohort Analysis
Comfort
Consultation
Controlled Study
Crowe E
Demographics
Expectation
Fetus Malformation
Gants S
Ho S
Hospice
Human
income group
Lopez S
November 2022 List
outcome assessment
Palliative Therapy
postpartum hemorrhage
Prenatal Diagnosis
Prognosis
Retrospective Study
Trisomy 13
-
Dublin Core
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Title
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July 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July List 2023
URL Address
<a href="http://doi.org/10.1007/s11136-023-03353-w" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s11136-023-03353-w</a>
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Patient-centred outcome measure design: the perspectives and preferences of children and young people with life-limiting or life-threatening conditions
Publisher
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Quality of Life Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
outcome assessment; adolescent; child; clinical article; conference abstract; feasibility study; female; genetic transcription; human; interview; male; malignant neoplasm; nervous system; pain; preschool child; recall; self report; voice
Creator
An entity primarily responsible for making the resource
Haroardottir D; Coombes L; Braybrook D; Scott H; Roach A; Bristowe K; Ellis-Smith C; Downing J; Bluebond-Langner M; Laddie J; Hills M; Ramsenthaler C; Fraser LK; Murtagh FEM; Harding R
Description
An account of the resource
Background: Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) face specific challenges when self-reporting health outcomes, including communication difficulties and sensitivities around subject matter. No ideal self-reported patientcentred outcome measure (PCOM) currently exists for this population. Practical aspects of design need to be considered in line with CYP's preferences and capabilities to ensure meaningful participation in measurement, and to enable child- and family-centred care. Aim(s): To identify preferences for PCOM response format, recall period, administration mode, and length, among CYP with LLLTC. Method(s): Semi-structured qualitative interviews with CYP aged 5-17 years with LLLTC. CYP were purposively sampled from nine UK sites. Verbatim transcripts were analysed in NVivo using Framework analysis with inductive and deductive coding. Result(s): 26 CYP with a range of LLLTC (primary diagnosis: 10 gastrointestinal, 6 cancer, 5 neurological, 3 congenital, 1 metabolic, 1 respiratory) were interviewed. Response format: many participants reported familiarity with numeric response scales, especially for pain. However, most preferred response formats with pictures, most often emojis. Children under 10 years old in particular preferred emojis, while preferences among older CYP were more variable. Recall period: Participants preferred a short recall, either because they cannot remember far back, or they do not want to think about past ill health. Most felt that they could report health-related outcomes from between the past day up to the past week. Older CYP tended to favour longer recall periods compared to younger children. Administration mode: whilst most participants preferred to complete measures electronically or had no preference, a small number had a strong preference for paper-based measures, suggesting PCOMs should be available in multiple formats. Length: ten or fewer questions were preferred. Conclusion(s): CYP with LLLTC interviewed are accustomed to answering questions about their own health and can communicate preferences to inform PCOM design. Generally, they prefer visually appealing response formats, short measures, and electronic administration. Importantly, respondent burden needs to be considered at the design stage, as demonstrated by preferences for a brief measure and short recall period. The results presented have practical implications for design and development of PCOMs for CYP with LLLTC, whose voices must be included early in measure development to ensure acceptability, feasibility, and enhance valid and reliable self-report.
Identifier
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<a href="http://doi.org/10.1007/s11136-023-03353-w" target="_blank" rel="noreferrer noopener">10.1007/s11136-023-03353-w</a>
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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
Adolescent
Bluebond-Langner M
Braybrook D
Bristowe K
Child
Clinical Article
conference abstract
Coombes L
Downing J
Ellis-Smith C
Feasibility Study
Female
Fraser LK
genetic transcription
Harding R
Haroardottir D
Hills M
Human
Interview
July List 2023
Laddie J
Male
Malignant Neoplasm
Murtagh FEM
Nervous System
outcome assessment
Pain
Preschool Child
Quality of Life Research
Ramsenthaler C
Recall
Roach A
Scott H
Self Report
Voice
-
Dublin Core
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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/https://oncologypro.esmo.org/Meeting-Resources/ESMO-2017-Congress/Aggressiveness-of-care-at-the-end-of-life-in-children-with-cancer-a-nationwide-cohort-study" target="_blank" rel="noreferrer noopener">http://doi.o
rg/https://oncologypro.esmo.org/Meeting-Resources/ESMO-2017-Congress/Aggressiveness-of-care-at-the-end-of-life-in-children-with-cancer-a-nationwide-cohort-study</a>
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Title
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Perceptions of barriers and facilitators to early integration of pediatric palliative care: A national survey of pediatric oncology providers
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
2018
Subject
The topic of the resource
Child; Palliative Care; perception; palliative therapy; childhood cancer; prognosis; Only Child; outcome assessment; cancer prognosis; human; article; child; controlled study; patient care; patient education; software; nurse practitioner; oncologist; social work
Creator
An entity primarily responsible for making the resource
Dalberg T; McNinch NL; Friebert S
Description
An account of the resource
Objectives: The goal of this study was to assess pediatric oncology providers' perceptions of palliative care in order to validate previously identified barriers and facilitators to early integration of a pediatric palliative care team (PCT) in the care of children with cancer. Methods: A 36-question survey based on preliminary, single-institution data was electronically distributed to pediatric oncology physicians, nurse practitioners, nurses, and social workers nationally. The principal outcomes measured included perceived barriers and facilitators to early integration of pediatric palliative care. Data were analyzed using Rv3.1.2 statistical software. Results: Most respondents agreed that the PCT does not negatively impact the role of the oncologist; however, there were concerns that optimal patient care may be limited by pediatric oncologists' need to control all aspects of patient care (P < 0.001). Furthermore, oncologists, more than any provider group, identified that the emotional relationship they form with the patients and families they care for, influences what treatment options are offered and how these options are conveyed (P < 0.01). Education and evidence-based research remain important to all providers. Respondents reached consensus that early integration of a PCT would provide more potential benefits than risks and most would not limit access to palliative care based on prognosis. Conclusions: Overall, providers endorse early integration of the PCT for children with cancer. There remains a continued emphasis on provider and patient education. Palliative care is generally accepted as providing a benefit to children with cancer, though barriers persist and vary among provider groups.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
2018
Article
Cancer Prognosis
Child
Childhood Cancer
Controlled Study
Dalberg T
Friebert S
Human
McNinch NL
Nurse Practitioner
Oncologist
Oncology 2018 List
Only Child
outcome assessment
Palliative Care
Palliative Therapy
Patient Care
Patient Education
Pediatric Blood and Cancer
Perception
Prognosis
Social Work
Software
-
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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January 2019 List
Text
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Citation List Month
January 2019 List
URL Address
<a href="http://doi.org/10.1007/s40271-018-0333-5" target="_blank" rel="noreferrer noopener"> http://doi.org/ 10.1007/s40271-018-0333-5</a>
Dublin Core
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Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes
Publisher
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Patient
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Embase; PsycINFO; outcome assessment; health care personnel; Scopus; systematic review; precancer; human; article; child; female; male; palliative therapy; Cinahl; Medline; developing country; high income country; ScienceDirect
Creator
An entity primarily responsible for making the resource
Namisango E; Bristowe K; Allsop MJ; Murtagh FEM; Abas M; Higginson IJ; Downing J; Harding R
Description
An account of the resource
Background: The design and provision of quality pediatric palliative care should prioritize issues that matter to children and their families for optimal outcomes. Objective: This review aims to identify symptoms, concerns and outcomes that matter to children and young people ("young people") with terminal illnesses and their families. Findings from the systematic review will inform the development of a relevant framework of health outcomes. Method: This is a systematic literature review across multiple databases for identification of eligible primary evidence. Data sources included PsycINFO, MEDLINE, Embase, CINAHL, OpenGrey, and Science Direct Journals, searched from 1 August 2016 to 30 July 2017. The study also incorporates consultations with experts in the field, citation searches via Scopus, and a hand search of reference lists of included studies. Results: Of the 13,567 articles that were evaluated, 81 studies were included. Most of these studies (n = 68) were from high-income countries and foused on young people with cancer (n = 58). A total of 3236 young people, 2103 family carers, 108 families, and 901 healthcare providers were included in the studies. Young people did not contribute to data in 30% of studies. Themes on priority concerns are presented by the following domains and health outcomes: (1) physical (n = 62 studies), e.g., physical symptoms; (2) psychological (n = 65), e.g., worry; (3) psychosocial (n = 31), e.g., relationships; (4) existential (n = 37), e.g., existential loss; and (5) "other" (n = 39), e.g., information access. Conclusion: Burdensome symptoms and concerns affect young people with malignant and nonmalignant conditions and occur across the disease trajectory; pediatric palliative care should not be limited to the end-of-life phase. A child-family-centered framework of health outcomes, spanning the patient, family, and quality of service levels is proposed to inform service development. Future research should address gaps identified across the literature (i.e., the involvement of young people in research, evidence for developing countries, and a focus on nonmalignant conditions.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s40271-018-0333-5" target="_blank" rel="noreferrer noopener">10.1007/s40271-018-0333-5</a>
2018
Abas M
Allsop MJ
Article
Bristowe K
Child
Cinahl
developing country
Downing J
Embase
Female
Harding R
Health Care Personnel
Higginson IJ
high income country
Human
January 2019 List
Male
Medline
Murtagh FEM
Namisango E
outcome assessment
Palliative Therapy
Patient
precancer
Psycinfo
ScienceDirect
Scopus
Systematic Review
-
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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March 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2019 List
URL Address
<a href="http://doi.org/10.1136/goshabs.18" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.1136/goshabs.18</a>
Dublin Core
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Title
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Talking to parents about their preferences for their child's place of death: A prospective study
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
hospice; government; advanced cancer; major clinical study; prospective study; case study; outcome assessment; hematologic malignancy; solid malignant neoplasm; conference abstract; human; child; female; palliative therapy; patient care; death; multidisciplinary team; clinician; achievement; social aspect
Creator
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Henderson E; Peake J; Al-Khabbaz E; Langner R; Dinsdale A; Craig F; Bluebond-Langner M
Identifier
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<a href="http://doi.org/10.1136/goshabs.18" target="_blank" rel="noreferrer noopener"> 10.1136/goshabs.18</a>
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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).
Description
An account of the resource
Background Government policy identifies home as the preferred place of death (PPOD) for children and young people (CYP) and suggests a home death as an indicator of the quality of care. A recent systematic review found a lack of compelling evidence for both home as the preferred place of death and the suitability of home death as a quality outcome. Rather, one study suggested that offering a discussion is more important for outcomes. Despite these findings, the achievement of preference remains a common quality measure of paediatric palliative care (PPC) services. This study explored factors which influenced the initiation of discussions, preferences, achievement of preferences and their value as an outcome measure. Methods A prospective case series review was conducted from March 2015-February 2017. Data included: 1) Routinely collected PPC PPOD data for CYP and their parents including the offer of a discussion, preferences expressed and if preference was achieved 2) Field notes taken at multidisciplinary team (MDT) meetings between clinicians where preference was discussed after the child's death 3) Advanced care planning and place of care data extracted from medical notes. Results Data was available for 256 CYP (117 female). 29% of CYP had a solid tumour malignancy, 10% had a haematological malignancy and 61% died of non-malignant disease. Parents of CYP with malignancies were more likely to be offered a discussion of PPOD (60/73 compared to 84/156 of those with non-malignant disease). A hospital was preferred by 38%, home 28% and hospice 18%. Preference for hospital or hospice was more likely to be achieved. Per clinician report, parent preference was influenced by patient condition, continuity of care, family and social factors and availability of services. Conclusion Contrary to government policy and voluntary sector statements home deaths are not preferred by most parents. Achievement of PPOD is unsuitable as a measure of service performance.
2018
achievement
Advanced Cancer
Al-Khabbaz E
Archives of Disease in Childhood
Bluebond-Langner M
Case Study
Child
Clinician
conference abstract
Craig F
Death
Dinsdale A
Female
government
Hematologic Malignancy
Henderson E
Hospice
Human
Langner R
Major Clinical Study
March 2019 List
Multidisciplinary team
outcome assessment
Palliative Therapy
Patient Care
Peake J
Prospective Study
social aspect
solid malignant neoplasm
-
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
2018 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1002/cncr.31668" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1002/cncr.31668</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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The Relationship Between Household Income and Patient-Reported Symptom Distress and Quality of Life in Children With Advanced Cancer: A Report From the PediQUEST Study
Publisher
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Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
pain; poverty; palliative therapy; major clinical study; advanced cancer; outcome assessment; cancer patient; cohort analysis; distress syndrome; human; article; child; female; male; quality of life; prevalence; secondary analysis; household income; patient-reported outcome; highest income group; lowest income group
Creator
An entity primarily responsible for making the resource
Ilowite MF; Al-Sayegh H; Ma C; Dussel V; Rosenberg AR; Feudtner C; Kang TI; Wolfe J; Bona K
Description
An account of the resource
Background: Children with advanced cancer experience high symptom distress, which negatively impacts their health-related quality of life (HRQOL). To the authors' knowledge, the relationship between income and symptom distress and HRQOL is not well described. Methods: The Pediatric Quality of Life and Symptoms Technology (PediQUEST) multisite clinical trial evaluated an electronic patient-reported outcome system to describe symptom distress and HRQOL in children with advanced cancer via repeated surveys. The authors performed a secondary analysis of PediQUEST data for those children with available parent-reported household income (dichotomized at 200% of the Federal Poverty Level and categorized as low income [<$50,000/year] or high income [>=$50,000/year]). The prevalence of the 5 most commonly reported physical and psychological symptoms was compared between groups. Multivariable generalized estimating equation models were used to test the association between household income and symptom distress and HRQOL. Results: A total of 78 children were included in the analyses: 56 (72%) in the high-income group and 22 (28%) in the low-income group. Low-income children were more likely to report pain than high-income children (64% vs 42%; P=.02). In multivariable models, children from low-income families demonstrated a uniform trend toward higher total (beta<inf>low-high</inf>=3.1; 95% confidence interval [95% CI], -0.08 to 6.2 [P=.06]), physical (beta=3.8; 95% CI, -0.4 to 8.0 [P=.09]), and psychological (beta=3.46; 95% CI, -1.91 to 8.84 [P=.21]) symptom distress compared with children from high-income families. Low income was associated with a uniform trend toward lower total (beta=-7.9; 95% CI, -14.8, to -1.1 [P=.03]), physical (beta=-11.2; 95% CI, -21.2 to -1.2 [P=.04]), emotional (beta=-5.8; 95% CI, -13.6 to 2.0 [P=.15]), social (beta=-2.52; 95% CI, -9.27 to 4.24 [P=.47]), and school (beta=-9.8; 95% CI, -17.8 to -1.8 [P=.03]) HRQOL. Conclusions: In this cohort of children with advanced cancer, children from low-income families were found to experience higher symptom burden and worse QOL.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/%2010.1002/cncr.31668" target="_blank" rel="noreferrer noopener">10.1002/cncr.31668</a>
2018
Advanced Cancer
Al-Sayegh H
Article
Bona K
Cancer
Cancer Patient
Child
Cohort Analysis
Distress Syndrome
Dussel V
Female
Feudtner C
highest income group
household income
Human
Ilowite MF
Kang TI
lowest income group
Ma C
Major Clinical Study
Male
Oncology 2018 List
outcome assessment
Pain
Palliative Therapy
patient-reported outcome
Poverty
Prevalence
Quality Of Life
Rosenberg AR
Secondary Analysis
Wolfe 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
A name given to the resource
July 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2019 List
URL Address
<a href="http://doi.org/10.1542/hpeds.2018-0169" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1542/hpeds.2018-0169</a>
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Title
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Timing of palliative consultation for children during a fatal illness
Publisher
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Hospital Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
article; cohort analysis; female; human; major clinical study; male; palliative therapy; retrospective study; outcome assessment; Caucasian; African American; cardiovascular disease; childhood disease; insurance; length of stay; private health insurance
Creator
An entity primarily responsible for making the resource
Rossfeld Z M; Miller R; Fosselman D D; Ketner A R; Tumin D; Tobias J D; Humphrey L
Description
An account of the resource
BACKGROUND: The American Academy of Pediatrics recommends palliative care for children at the diagnosis of serious illness. Yet few children who die receive specialty palliative care consultation, and when it is provided, palliative care consultation tends to occur after .75% of the time from diagnosis until death. Focusing on the timing of palliative consultation in relation to the date of diagnosis, we evaluated factors predicting earlier receipt of pediatric palliative care in a cohort of decedents. METHOD(S): We retrospectively identified patients diagnosed with a life-limiting disease who died at our hospital in 2015-2017 after at least 1 inpatient palliative medicine consultation. Our primary outcome was time from palliative-qualifying diagnosis to earliest receipt of specialty palliative care. A survival analysis was used to describe factors associated with earlier receipt of palliative care. RESULT(S): The analysis included 180 patients (median age at diagnosis,1 month [interquartile range (IQR): 0-77]). The median time to first palliative consultation was 7 days after diagnosis (IQR: 2-63), compared with a median of 50 days between diagnosis and death (IQR: 7-210). On the multivariable analysis, palliative consultation occurred earlier for patients who had cardiovascular diagnoses, had private insurance, and were of African American race. CONCLUSION(S): In a cohort of decedents at our institution, palliative consultation occurred much earlier than has been previously reported. We also identify factors associated with delayed receipt of palliative care among children who are dying that reveal further opportunities to improve access to specialty palliative care. Copyright © 2019 by the American Academy of Pediatrics.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/hpeds.2018-0169" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2018-0169</a>
2019
African American
Article
Cardiovascular Disease
Caucasian
Childhood Disease
Cohort Analysis
Female
Fosselman D D
Hospital Pediatrics
Human
Humphrey L
Insurance
July 2019 List
Ketner A R
Length Of Stay
Major Clinical Study
Male
Miller R
outcome assessment
Palliative Therapy
private health insurance
Retrospective Study
Rossfeld Z M
Tobias J D
Tumin D
-
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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May 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
May List 2023
URL Address
<a href="http://doi.org/10.1542/hpeds.2018-0169" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1542/hpeds.2018-0169</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
Timing of palliative consultation for children during a fatal illness
Publisher
An entity responsible for making the resource available
Hospital Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
childhood disease; palliative therapy; African American; article; cardiovascular disease; Caucasian; Child; cohort analysis; female; human; insurance; length of stay; major clinical study; male; Only Child; outcome assessment; private health insurance; Referral and Consultation; retrospective study
Creator
An entity primarily responsible for making the resource
Rossfeld ZM; Miller R; Fosselman DD; Ketner AR; Tumin D; Tobias JD; Humphrey L
Description
An account of the resource
Abstract Background: The American Academy of Pediatrics recommends palliative care for children at the diagnosis of serious illness. Yet few children who die receive specialty palliative care consultation, and when it is provided, palliative care consultation tends to occur after >75% of the time from diagnosis until death. Focusing on the timing of palliative consultation in relation to the date of diagnosis, we evaluated factors predicting earlier receipt of pediatric palliative care in a cohort of decedents. Methods: We retrospectively identified patients diagnosed with a life-limiting disease who died at our hospital in 2015-2017 after at least 1 inpatient palliative medicine consultation. Our primary outcome was time from palliative-qualifying diagnosis to earliest receipt of specialty palliative care. A survival analysis was used to describe factors associated with earlier receipt of palliative care. Results: The analysis included 180 patients (median age at diagnosis <1 month [interquartile range (IQR): 0-77]). The median time to first palliative consultation was 7 days after diagnosis (IQR: 2-63), compared with a median of 50 days between diagnosis and death (IQR: 7-210). On the multivariable analysis, palliative consultation occurred earlier for patients who had cardiovascular diagnoses, had private insurance, and were of African American race. Conclusions: In a cohort of decedents at our institution, palliative consultation occurred much earlier than has been previously reported. We also identify factors associated with delayed receipt of palliative care among children who are dying that reveal further opportunities to improve access to specialty palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/hpeds.2018-0169" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2018-0169</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).
2019
African American
Article
Cardiovascular Disease
Caucasian
Child
Childhood Disease
Cohort Analysis
Female
Fosselman DD
Hospital Pediatrics
Human
Humphrey L
Insurance
Ketner AR
Length Of Stay
Major Clinical Study
Male
May List 2023
Miller R
Only Child
outcome assessment
Palliative Therapy
private health insurance
Referral And Consultation
Retrospective Study
Rossfeld ZM
Tobias JD
Tumin D
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1097/PEP.0b013e3182351f04" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/PEP.0b013e3182351f04</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
Validation of the Children's Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND)
Publisher
An entity responsible for making the resource available
Pediatric Physical Therapy
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
infant; Pediatrics; Rehabilitation; validity; outcome assessment; child; female; male; disease severity; (health care); atrophies of childhood/diagnosis; child development/physiology; childhood/physiopathology; disability evaluation; humans; motor skills/physiology; natural-history; physical therapy/methods; preschool; psychometrics/methods; severity of illness index; sma; smn2 copy number; spinal muscular; spinal muscular atrophies of; spinal muscular-atrophy; tone and motor problems; SMA1; tool development; scale development; CHOP INTEND
Creator
An entity primarily responsible for making the resource
Glanzman A M; McDermott M P; Montes J; Martens W B; Flickinger J; Riley S; Quigley J; Dunaway S; O'Hagen J; Deng L Y; Chung W K; Tawil R; Darras B T; Yang M; Sproule D; De Vivo D C; Kaufmann P; Finkel R S; Pediatric Neuromuscular Clinical Research; Muscle Study Group
Description
An account of the resource
Purpose: Preliminary validation of the Children's Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND) for motor skill assessment in spinal muscular atrophy type I. Methods: A total of 27 subjects 3 to 260 months old (mean = 49, SD = 69) with spinal muscular atrophy-I were evaluated with the CHOP INTEND. Subjects were evaluated as part of a multicenter natural history study. Results: CHOP INTEND scores and age were significantly correlated (r = -0.51, P = .007; 2 survival of the motor neuron [SMN] 2 gene copies, n = 16, r = -0.60, 3 SMN2 gene copies, n = 9, r = -0.83). Respiratory support and CHOP INTEND scores were correlated (r = -0.74, P <.0001, n = 26). The CHOP INTEND and age regression in patients with 2 copies versus 3 copies of SMN2 approached significance (P = .0711, n = 25). Subjects who required respiratory support scored significantly lower (mean = 15.5, SD = 10.2 vs mean = 31.2, SD = 4.2, P <.0001, n = 27). Correlation with motor unit number estimation and combined motor unit activation were not significant. Conclusion: The CHOP INTEND reflects measures of disease severity and supports continued exploration of the CHOP INTEND. (Pediatr Phys Ther 2011; 23: 322-326)
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/PEP.0b013e3182351f04" target="_blank" rel="noreferrer noopener">10.1097/PEP.0b013e3182351f04</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).
(health care)
2011
atrophies of childhood/diagnosis
Child
Child Development/physiology
childhood/physiopathology
CHOP INTEND
Chung W K
Darras B T
De Vivo D C
Deng L Y
Disability Evaluation
Disease Severity
Dunaway S
Female
Finkel R S
Flickinger J
Glanzman A M
Humans
Infant
Kaufmann P
Male
Martens W B
McDermott M P
Montes J
Motor Skills/physiology
Muscle Study Group
natural-history
O'Hagen J
outcome assessment
Pediatric Neuromuscular Clinical Research
Pediatric Physical Therapy
Pediatrics
physical therapy/methods
Preschool
Psychometrics/methods
Quigley J
Rehabilitation
Riley S
scale development
Severity Of Illness Index
Sma
SMA1
smn2 copy number
spinal muscular
spinal muscular atrophies of
spinal muscular-atrophy
Sproule D
Tawil R
tone and motor problems
tool development
Validity
Yang M