1
40
314
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April 2024 List
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April List 2024
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<a href="http://doi.org/10.1016/j.jpainsymman.2024.02.006" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2024.02.006</a>
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Psychologists as Pivotal Members of the Pediatric Palliative Care Team
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Journal of Pain and Symptom Management
Date
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2024
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child; Palliative Care; diagnosis; article; human; quality of life; palliative therapy; Psychology; adolescent; therapy; evidence based practice; drug therapy; consensus; interdisciplinary research; psychologist
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Thompson AL; Kentor RA; Schaefer MR; McCarthy SR
Description
An account of the resource
Context: Pediatric psychologists possess unique expertise to positively impact the care provided to children with serious illness and their families. Despite increasing recognition regarding the value of psychology in palliative care, psychologists are not yet routinely integrated into pediatric palliative care (PPC) teams. Objectives: This special paper seeks to demonstrate distinctive contributions psychologists can offer to PPC teams, patients, and families, as well as highlight how psychologists enhance the work of their interdisciplinary PPC colleagues. Methods: Existing literature, consensus and policy statements, and recently developed competencies inform and provide evidence for the value of incorporating psychologists into PPC. Results: As children with serious illness are at risk for mental and physical health symptoms, psychologists' specialized training in evidence-based assessment and intervention allows them to assess areas of concern, create treatment plans, and implement nonpharmacological therapies targeting symptom management and promotion of quality of life. By improving patient and family outcomes, psychology involvement saves money. In addition to clinical care, psychologists are skilled researchers, which can help to advance PPC interdisciplinary research. Lastly, psychologists can play a valuable role in contributing to PPC team education, dynamics, and well-being. Conclusions: With strong skills in research, clinical care, education, and advocacy, pediatric psychologists are exceptionally equipped to provide care to children with serious illness and their families. Given their unique contributions, it is critical future efforts are directed towards advocating for the inclusion of psychologists into PPC, with the ultimate goal of improving care for children with serious illness and their families.
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<a href="http://doi.org/10.1016/j.jpainsymman.2024.02.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2024.02.006</a>
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2024
Adolescent
April List 2024
Article
Child
Consensus
Diagnosis
Drug Therapy
evidence based practice
Human
interdisciplinary research
Journal of Pain and Symptom Management
Kentor RA
McCarthy SR
Palliative Care
Palliative Therapy
Psychologist
Psychology
Quality Of Life
Schaefer MR
Therapy
Thompson AL
-
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Title
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February 2024 List
Text
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February List 2024
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<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>
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Improving Prenatal Palliative Care Consultation Using Diagnostic Trigger Criteria: Improving Prenatal Palliative Care Consultation through Quality Improvement
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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child; diagnosis; article; controlled study; female; human; palliative therapy; consultation; outcome assessment; congenital malformation; patient referral; eligibility; pregnancy; total quality management
Creator
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Lin M; Rholl E; Andescavage N; Ackerman O; Fisher D; Lanzel AF; Mahmood LA
Description
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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
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<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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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
-
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February 2024 List
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February List 2024
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<a href="http://doi.org/10.1016/j.jpainsymman.2023.11.005" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2023.11.005</a>
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In every detail: spiritual care in pediatric palliative care perceived by healthcare providers
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Journal of Pain and Symptom Management
Date
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2023
Subject
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child; article; controlled study; human; palliative therapy; China; interview; health care personnel; qualitative research; social worker; therapy; thematic analysis; religion; nurse; spiritual care; developing country
Creator
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Cheng L; Cai S; Zhou X; Zhai X
Description
An account of the resource
Spiritual care is an essential domain of pediatric palliative care. The current mainland China faces a lack of national guidance and a shortage of specialized personnel to provide spiritual care in a traditional developing country. Objectives: To identify spiritual care in pediatric palliative care services in mainland China from the perspective of healthcare professionals. Methods: A qualitative descriptive interview study was conducted individually with 27 participants: 14 physicians, seven nurses, and six social workers. The data were analyzed using thematic analysis. Results: Participants described that the essence of spiritual support was provided "in every detail" throughout pediatric palliative care. Four major themes and eleven subthemes were identified. 1) Assessing spiritual needs: paying attention to different perspectives; considering religion, tradition, and culture; discovering spiritual needs behind other needs. 2) Facilitating spiritual exploration: being with the family; providing resources; guiding by providers' own faith; 3) Supporting connections: encouraging the building of personal bonds; facilitating the establishment of spiritual connections. 4) Relieving spiritual suffering: facilitating a family review of child's life; supporting building meaning in daily life; assisting in leaving a legacy for the child. Conclusion: This study illustrated that current spiritual support, though not formally organized, is provided individually in pediatric palliative care services in mainland China. Strategies for a practice guide, education and training for professionals, and cultural building need to be rationally developed to strengthen and structure spiritual support integrated into pediatric palliative care.
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<a href="http://doi.org/10.1016/j.jpainsymman.2023.11.005" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.11.005</a>
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2023
Article
Cai S
Cheng L
Child
China
Controlled Study
developing country
February List 2024
Health Care Personnel
Human
Interview
Journal of Pain and Symptom Management
Nurse
Palliative Therapy
Qualitative Research
Religion
Social Worker
Spiritual Care
Thematic Analysis
Therapy
Zhai X
Zhou X
-
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2023.06.032" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2023.06.032</a>
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Pediatric Palliative Care Program Implementation in LMICs: A Systematic Review using SWOT Analysis
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Journal of Pain and Symptom Management
Date
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2023
Subject
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palliative care; Palliative Care; Pediatric; implementation; low- and middle-income countries (LMIC); systematic review SWOT analysis
Creator
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Kenneson SA; Hughes-Visentin A; Wrigley J; Gujral P; Lodhi S; Phadke S; Rayala S; Gentica X; Malipeddi D; Sarvode S; Kaye EC; Doherty M
Description
An account of the resource
CONTEXT: Of the estimated 21 million children world-wide who need access to pediatric palliative care (PPC), about 97% currently reside in low-and middle-income countries (LMIC). Access to PPC programs in LMIC are limited, and successful strategies and barriers to program implementation remain understudied. OBJECTIVES: We conducted a systematic review to characterize the strengths, weaknesses, opportunities, and threats (SWOT) of PPC program implementation in LMIC. METHODS: Using PRISMA guidelines, we searched key databases from inception to April 2022 and reviewed references manually. Eligible abstracts and articles included content related to composition, role, function, purpose, development, or implementation of PPC programs in LMIC. RESULTS: From 7,846 titles and abstracts and 229 full-text articles, we identified 62 eligible abstracts and articles; 16 articles were added following manual searching of references, resulting in 78 items (28 abstracts, 50 articles). A total of 82 unique programs were described, including nine from low-income, 27 from lower-middle income, and 44 from upper-middle income countries. Common strengths included presence of multidisciplinary teams and psychosocial care. Common weaknesses included lack of PPC training and research infrastructure. Common opportunities involved collaboration between institutions, government support, and growth of PPC education. Common threats comprised limited access to PPC services, medications, and other resources. CONCLUSION: PPC programs are being successfully implemented in resource limited settings. Hospice and palliative medicine organizations should sponsor PPC clinicians to describe and disseminate more detailed descriptions of successes and challenges with program implementation to help build and grow further PPC initiatives in LMICs.
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<a href="http://doi.org/10.1016/j.jpainsymman.2023.06.032" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.06.032</a>
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2023
2023 SE5 - Low Resource Setting
Doherty M
Gentica X
Gujral P
Hughes-Visentin A
Implementation
Journal of Pain and Symptom Management
Kaye EC
Kenneson SA
Lodhi S
low- and middle-income countries (LMIC)
Malipeddi D
Palliative Care
Pediatric
Phadke S
Rayala S
Sarvode S
systematic review SWOT analysis
Wrigley J
-
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2023 Special Edition 3 - Oncology List
Text
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2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.144" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.12.144</a>
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“It's Hard Not to Have Regrets:” Qualitative Analysis of Decisional Regret in Bereaved Parents
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Journal of Pain and Symptom Management
Date
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2023
Subject
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Parents; child; Bereavement; pediatric cancer; parent; bereavement; decisional regret
Creator
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Feifer D; Broden E; Baker JN; Wolfe J; Snaman J
Description
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Context Bereaved parents may have heightened risk for decisional regret; however, little is known about regret early in bereavement. Objectives We characterized decisional regrets endorsed by parents of children who died from cancer within the first two years of their bereavement. Methods We analyzed responses from a cross-sectional, dual site study of parents 6 to 24 months from their child's death. Parents indicated whether they had regrets about decisions made at the end of their child's life (yes/no/I don't know) and elaborated with free text. We used content analysis to identify recurrent categories in parents’ responses. Results A total of 125 parents of 88 children completed the survey; 123 responded to the decisional regret item and 84 (63%) elaborated with free text. Forty-seven (38%) parents reported decisional regret(s), 61 (50%) indicated no regret(s), and 15 (12%) were unsure. Parental free-text responses related to 5 categories: treatments, including those pursued and/or not pursued (n=57), decision-making processes (n=35), relationships with their child and care team (n=26), child suffering (n=10), and end-of-life characteristics (n=6). The relative frequency of categories was similar in parents with and without decisional regret, but self-blame was more common in responses from parents with decisional regret. Conclusion Many bereaved parents endorse decisional regret in early bereavement. Treatments and decision-making processes were most cited among parents both with and without regret. Identifying factors associated with heightened parental risk of decisional regret using longitudinal study is an important focus of future research.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.144" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.12.144</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
2023 SE3 - Oncology
Baker JN
Bereavement
Broden E
Child
Decisional regret
Feifer D
Journal of Pain and Symptom Management
Parent
Parents
Pediatric Cancer
Snaman J
Wolfe J
-
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Title
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August 2023 List
Text
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Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2023.05.018" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2023.05.018</a>
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Increasing Trend and Effects of Pediatric Palliative Care on Children with Non-Cancer Diagnoses
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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; child; Palliative Care; survival; terminal care; article; cohort analysis; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; morphine; Only Child; artificial ventilation; cancer survival; ventilator; cancer patient; analgesia; trend study
Creator
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Chen SH; Wu ET; Wang CC; Yu Su M; Chang CH; Chen HL; Lu FL; Cheng SY
Description
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Objectives Pediatric palliative care (PPC), especially among noncancer pediatric patients, faces challenges including late referral, limited patient care, and insufficient data for Asian patients. Methods This retrospective cohort study used the integrative hospital medical database between 2014 and 2018 to analyze the clinical characteristics, diagnoses, and end-of-life care for patients aged less than 20 who had died in our children's hospital, a tertiary referral medical center implementing PPC shared-care. Results In our cohort of 323 children, 240 (74.3%) were noncancer patients who a younger median age at death (5 vs. 122 months, P < 0.001), lower rate of PPC involvement (16.7 vs. 66%, P < 0.001), and fewer survival days after PPC consult compared to cancer patients (3 vs. 11, P = 0.01). Patients not receiving PPC had more ventilator support (OR 9.9, P < 0.001), and less morphine use on their final day of life (OR 0.1, P < 0.001). Also, patients not receiving PPC had more cardiopulmonary resuscitation on the last day of life (OR 15.3, P < 0.001) and died in the ICU (OR 8.8, P < 0.001). There was an increasing trend of noncancer patients receiving PPC between 2014 and 2018 (P < 0.001). Conclusions High disparities exist between children receiving PPC in cancer versus noncancer patients. The concept of PPC is gradually becoming accepted in noncancer children and is associated with more pain-relief medication and less suffering during end-of-life care.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2023.05.018" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.05.018</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Analgesia
Article
Artificial Ventilation
August List 2028
Cancer Patient
Cancer Survival
Chang CH
Chen HL
Chen SH
Cheng SY
Child
Cohort Analysis
Controlled Study
Female
Human
Journal of Pain and Symptom Management
Lu FL
Major Clinical Study
Male
Morphine
Only Child
Palliative Care
Palliative Therapy
Retrospective Study
Survival
Terminal Care
trend study
ventilator
Wang CC
Wu ET
Yu Su M
-
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Title
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June 2023 List
Text
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Citation List Month
June 2022 List
URL Address
<a href="https://www.sciencedirect.com/science/article/pii/S0885392423004475?via%3Dihub">https://www.sciencedirect.com/science/article/pii/S0885392423004475?via%3Dihub</a>
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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
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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
-
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Title
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July 2023 List
Text
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Citation List Month
July List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2023.06.005" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2023.06.005</a>
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Title
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Integration of Palliative Care in Hematopoietic Cell Transplant: Pediatric Patient and Parent Needs and Attitudes
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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
Caregivers; Hematopoietic Cell Transplantation; Palliative Care; Patients; Pediatrics; Quality of life
Creator
An entity primarily responsible for making the resource
Levine DR; Epperly R; Collins G; Talleur AC; Mandrell B; Pritchard M; Sarvode MS; Li C; Lu Z; Baker JN
Description
An account of the resource
Context Early integration of palliative care (PC) in hematopoietic cell transplantation (HCT) has demonstrated benefits, yet barriers remain, including perceived lack of patient/caregiver receptivity despite no data on attitudes toward PC and limited patient/caregiver reported outcomes in pediatric HCT. Objectives This study aimed to evaluate perceived symptom burden and patient/parent attitudes toward early PC integration in pediatric HCT. Methods Following IRB approval, consent/assent, eligible participants were surveyed at St. Jude Children's Research Hospital including English-speaking patients aged 10-17, 1month -1year from HCT, and their parents/primary-caregivers, as well as parent/primary-caregivers of living HCT recipients <age-10. Data were assessed for trends in response content frequencies, percentages, and associations. Results 81 participants, within one year of HCT, at St. Jude Children's Research Hospital were enrolled including: 36 parents of patients<age-10, 24 parents of patients ≥age-10, and 21 patients≥age-10. Most (65%) were 1-3 months from HCT. Analysis revealed high levels of perceived symptom suffering in the first month of HCT. 85.7% of patients and 73.4% of parents expressed that a-great-deal/a-lot of attention should be paid to quality-of-life from the start of HCT. Most respondents (patients-52.4/parents-50%) indicated they would likely have wanted early PC consult and very few (0%-patients/3.3%-parents) reported definite opposition to early PC involvement in HCT. Conclusion Our findings suggest that patient/family receptivity should not be a barrier to early PC in pediatric HCT; obtaining patient reported outcomes is a priority in the setting of high symptom burden; and robust quality-of-life directed care with early PC integration is both indicated and acceptable to patients/caregivers.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2023.06.005" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.06.005</a>
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2023
Baker JN
Caregivers
Collins G
Epperly R
Hematopoietic Cell Transplantation
Journal of Pain and Symptom Management
July List 2023
Levine DR
Li C
Lu Z
Mandrell B
Palliative Care
Patients
Pediatrics
Pritchard M
Quality Of Life
Sarvode MS
Talleur AC
-
Dublin Core
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Title
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July 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2023.05.011" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2023.05.011</a>
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Pediatric Palliative Care at Home: A Prospective Study on Subcutaneous Drug Administration
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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
drug administration; Home Care Services; home care services hospital-based; Palliative Care; Pediatrics; Prospective Studies; subcutaneous infusions; supportive care; symptom management
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García-López I; Chocarro-González L; Martín-Romero I; Vázquez-Sánchez JM; Avilés-Martínez M; Martino-Alba R
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An account of the resource
CONTEXT: The subcutaneous route is a useful alternative for drug administration in palliative care. Although there is scientific evidence on its use in adult patients, the literature in pediatric palliative care is almost nonexistent. OBJECTIVES: To describe the experience of a pediatric palliative care unit (PPCU) with in-home subcutaneous drug administration symptom control. METHODS: Prospective observational study of patients receiving home-based subcutaneous treatment administered as part of a PPCU treatment regimen over 16 months. Analysis includes demographic and clinical variables and treatment received. RESULTS: Fifty-four different subcutaneous lines were inserted in the 15 patients included, mainly in the thigh (85.2%). The median time of needle in situ was 5.5 days (range: 1-36 days). A single drug was administered in 55.7% of treatments. The most frequently used drugs were morphine chloride (82%) and midazolam (55.7%). Continuous subcutaneous infusion was the predominant administration route (96.7%), with infusion rates oscillating between 0.1 mL/h and 1.5 mL/h. A statistically significant relationship was found between the maximum infusion rate and induration onset. Of the 54 lines placed, 29 (53.7%) had an associated complication requiring line removal. The primary cause for removal was insertion-site induration (46.3%). Subcutaneous lines were mainly used to manage pain, dyspnea, and epileptic seizures. CONCLUSION: In the pediatric palliative care patients studied, the subcutaneous route is most frequently used for administering morphine and midazolam in continuous infusion. The main complication was induration, especially with longer dwell times or higher infusion rates. However, further studies are required to optimize management and prevent complications.
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<a href="http://doi.org/10.1016/j.jpainsymman.2023.05.011" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.05.011</a>
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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
Avilés-Martínez M
Chocarro-González L
Drug Administration
García-López I
home care services
home care services hospital-based
Journal of Pain and Symptom Management
July List 2023
Martín-Romero I
Martino-Alba R
Palliative Care
Pediatrics
Prospective Studies
subcutaneous infusions
Supportive Care
Symptom Management
Vázquez-Sánchez JM
-
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Title
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May 2023 List
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May List 2023
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.006" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.12.006</a>
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Nationwide Study of Continuous Deep Sedation Practices Among Pediatric Palliative Care Teams
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Journal of Pain and Symptom Management
Date
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2023
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Deep Sedation; Pediatrics; Terminal Care; Adolescent; Child; Female; Humans; Hypnotics and Sedatives/tu [Therapeutic Use]; Male; Palliative Care; Retrospective Studies
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Ridley A; Vial-Cholley E; Robert G; Jounis-Jahan F; Lervat C; Betremieux P; Viallard ML; Frache S; Cojean N
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Abstract Context: Palliative sedation practices evolved in France when the Claeys-Leonetti law passed in 2016 authorized patient-requested continuous deep sedation (CDS) until death. Its implementation in the pediatric setting is less frequently encountered and can pose several clinical and ethical challenges for health care teams and families. Objectives: Our study aimed to describe CDS requests and practices of patients receiving specialized pediatric palliative care in France since its legalization in 2016. Methods: We conducted a nationwide multicentric, descriptive, retrospective study using a self-report questionnaire completed by all Pediatric Palliative Care (PPC) Teams that were involved in a CDS case between January 2017 and December 2019. Results: Six PPC teams had cared for six patients that had requested CDS, predominantly male adolescents/young adults diagnosed with a solid tumour. The refractory symptoms were diverse (pain, bleeding, and sensory loss) and always coupled with psycho-existential suffering. Each request was analyzed in multidisciplinary collegial meetings. Parental consent was always obtained regardless of age. Sedation typically required the use of multiple drugs including Midazolam (n = 5 cases), Chlorpromazine (n = 3), Ketamine (n = 2), and Propofol (n = 2). Despite close monitoring, achieving a satisfactory level of deep sedation was challenging and most patients unexpectedly awoke during CDS. Death occurred between 27 and 96 hours after induction. Conclusion: Managing patient-requested CDS in pediatrics is challenging due to its rarity, multi-factorial refractory symptoms and drug tolerance despite polytherapy. Few recommendations exist to guide CDS practice for pediatricians. Further studies investigating pediatric CDS practices across various cultural and legal settings, refractory symptom management and specific pharmacology are warranted.
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.12.006</a>
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2023
Adolescent
Bétrémieux P
Child
Cojean N
Deep Sedation
Female
Frache S
Humans
Hypnotics and Sedatives/tu [Therapeutic Use]
Jounis-Jahan F
Journal of Pain and Symptom Management
Lervat C
Male
May List 2023
Palliative Care
Pediatrics
Retrospective Studies
Ridley A
Robert G
Terminal Care
Vial-Cholley E
Viallard ML
-
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May 2023 List
Text
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May List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2023.02.002" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2023.02.002</a>
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Parent and Provider Perspectives of a Hospital-Based Bereavement Support Program in Pediatric Palliative Care
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Journal of Pain and Symptom Management
Date
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2023
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bereavement; bereavement support; grief; palliative therapy; questionnaire; article; Bereavement; child; cross-sectional study; expectation; female; human; human experiment; major clinical study; male; Palliative Care; pediatric hospital; program impact
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Gundry A; Elvidge N; Donovan L; Bunker K; Herbert A; Bradford N
Description
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Abstract Context: Bereavement is an individuated, nuanced experience, and its expression is different for each parent who has cared for a dying child. Evidence highlights support is valuable to navigate this loss. Objectives: To evaluate a Bereavement Support Program from the perspectives of both families and service providers. Methods: A cross-sectional study design explored the experiences and perspectives of the benefits of various program components. Respondents were asked about accessing program components, their expectations, and parents were asked to rate the impact of program components on their grief on a scale from one, (no impact) to 100 (positive impact). Space for free text was provided throughout for additional feedback. Setting/ participants: The survey was distributed through mailing lists of parents known to the service, referring service providers, and advertised in the program newsletter. Results: One hundred two respondents completed the survey and provided detailed comments about their experiences. Most interactions and program components were reported helpful by both parents and service providers. Parents (N = 60) reported a positive impact on grief across all program components (median impact on grief range 81-98, Interquartile range 68.5-99). There were, however, a considerable number of respondents who were unaware of some components. Conclusion: Bereavement care to navigate the devastating loss of a child is of paramount importance and can offer significant and beneficial resources for families. Findings have supported service development in a major tertiary paediatric hospital facilitating improved access for families, particularly for those in regional and rural locations.
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<a href="http://doi.org/10.1016/j.jpainsymman.2023.02.002" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.02.002</a>
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2023
Article
Bereavement
Bereavement Support
Bradford N
Bunker K
Child
Cross-sectional Study
Donovan L
Elvidge N
Expectation
Female
Grief
Gundry A
Herbert A
Human
Human Experiment
Journal of Pain and Symptom Management
Major Clinical Study
Male
May List 2023
Palliative Care
Palliative Therapy
Pediatric Hospital
program impact
Questionnaire
-
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Title
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May 2023 List
Text
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May List 2023
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<a href="http://doi.org/10.1016/j.jpainsymman.2023.02.006" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2023.02.006</a>
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The Landscape of Outpatient Pediatric Palliative Care: A National Cross-Sectional Assessment
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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outpatient; palliative therapy; program development; advance care planning; analgesia; article; Cesarean Section; child; controlled study; demographics; funding; hospital patient; human; Palliative Care; patient referral; school child; United States; workflow
Creator
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Autrey AK; James C; Mothi SS; Stafford C; Morvant A; Miller EG; Kaye EC
Description
An account of the resource
Abstract Context: Inpatient pediatric palliative care (PPC) has grown substantially over the past 20 years; however, PPC in the outpatient setting remains underdeveloped. Outpatient PPC (OPPC) offers opportunities to improve access to PPC as well as facilitate care coordination and transitions for children with serious illness. Objectives: This study aimed to characterize the national status of OPPC programmatic development and operationalization in the United States. Methods: Utilizing a national report, freestanding children's hospitals with existing PPC programs were identified to query OPPC status. An electronic survey was developed and distributed to PPC participants at each site. Survey domains included hospital and PPC program demographics; OPPC development, structure, staffing, and workflow; metrics of successful OPPC implementation; and other services/partnerships. Results: Of 48 eligible sites, 36 (75%) completed the survey. Clinic-based OPPC programs were identified at 28 (78%) sites. OPPC programs reported a median age of 9 years [range: 1-18 years] with growth peaks in 2011, 2012 and 2020. OPPC availability was significantly associated with increased hospital size [p= 0.05] and inpatient PPC billable full time equivalent staff [p= 0.01]. Top referral indications included pain management, goals of care, and advance care planning. Funding primarily came from institutional support and billing revenue. Conclusions: Although OPPC remains a young field, many inpatient PPC programs are growing into the outpatient setting. Increasingly, OPPC services have institutional support and diverse referral indications from multiple subspecialties. However, despite high demand, resources remain limited. Characterization of the current OPPC landscape is crucial to optimize future growth.
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<a href="http://doi.org/10.1016/j.jpainsymman.2023.02.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.02.006</a>
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2023
Advance Care Planning
Analgesia
Article
Autrey AK
Cesarean Section
Child
Controlled Study
Demographics
Funding
Hospital Patient
Human
James C
Journal of Pain and Symptom Management
Kaye EC
May List 2023
Miller EG
Morvant A
Mothi SS
Outpatient
Palliative Care
Palliative Therapy
Patient Referral
Program Development
School Child
Stafford C
United States
workflow
-
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Title
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April 2023 List
Text
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Citation List Month
April List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.079" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.12.079</a>
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Yesterday a Child, Today a Grown-Up: Reflections on the Patient, Family, and Team Experience of an Abrupt, Non-Linear Transition from Pediatric to Adult Medicine for Young Adults with Serious Illness (FR210A)
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Child; Only Child
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Zehm A; Jonas DF; Brook I; Smith DS
Description
An account of the resource
Outcomes: 1. Reflect on the experience of young adults and families facing serious illness as they transition from pediatric to adult medicine, including the impact on medical decision making and end-of-life care 2. Describe challenges and strategies for providers and teams navigating this transition from both the pediatric and adult medicine perspective For young adults living with serious illnesses, the transition from pediatrics to adult medical care can be challenging and traumatic, especially if this transition occurs alongside disease progression and complex decision making. Two pediatric palliative clinicians will share their experience preparing patients and families for this transition. For these clinicians, preparing patients is nuanced and complex, as family-centered care is a core tenet of pediatric medicine. Clinicians must establish rapport and trust-building during conversations regarding future planning and adjustment. Fostering independence in a patient whose physical function or coping are regressing can be challenging, and the adolescent's perceived and legal level of autonomy can be conflicting. An adult palliative care clinician will share her experience supporting patients and families in this transition. Adult clinicians often feel unprepared to care for patients and families who are accustomed to pediatric care norms. Assuming this role often requires a paradigm shift and different approaches to communication, family dynamics, and shared decision-making. Additional challenges include lack of familiarity with traditionally “pediatric” illnesses, recognition of discordance between a patient's emotional and chronological maturity level, and navigation of intricacies around information-sharing. For patients and families, this transition can feel abrupt, arbitrary, and traumatic, as patients leave longitudinal providers and meet new teams. One parent will share her family's experience of transitioning to the adult setting amid cystic fibrosis disease progression. She will reflect on difficult decisions faced regarding lung transplantation possibilities, family relocation, long-term management of a multi-drug resistant bacterium, and, ultimately, end-of-life care and information sharing. She will highlight her daughter's increased physical and emotional vulnerability and corresponding need for increased familial involvement and support during this challenging time, particularly around medical decision making. Panel and audience participants will have an opportunity to integrate discussed themes into best practice.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.079" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.12.079</a>
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2023
April List 2023
Brook I
Child
Jonas DF
Journal of Pain and Symptom Management
Only Child
Smith DS
Zehm A
-
Dublin Core
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Title
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April 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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April List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.048" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.12.048</a>
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Psychedelic-Assisted Therapies and Pediatric Palliative Care: New Tools for Hope and Healing (TH118A)
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Journal of Pain and Symptom Management
Date
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2023
Subject
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Palliative Care; Hallucinogens
Creator
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Waldman E; Adrian C; Spence D
Description
An account of the resource
Outcomes: 1. Upon successful completion, participants will self-report the ability to describe the current state of research around the use of psychedelic-assisted therapies in palliative care 2. Upon successful completion, participants will self-report the ability to describe possible applications of psychedelic-assisted therapies within the context of pediatric palliative care There is considerable buzz in both the scientific and popular literature around the current renaissance in the exploration of potential roles for psychedelic-assisted therapies in a number of settings, including for individuals facing serious illness and existential distress. Emerging data have been very exciting, and expectations are that, in line with a widening pipeline of clinical trials, the FDA may soon reschedule compounds such as MDMA and psilocybin and grant approval for their use for several indications, including some fundamentally relevant to the field of palliative care in its widest ambit. Additionally, efforts are underway in a number of states to decriminalize and even legalize some of these substances. Almost all the formal research work to date has focused on adult patients. However, the three presenters, all involved in various facets of research and practice in psychedelic-assisted therapy, contend that there are several possible applications for psychedelic-assisted therapies within pediatric palliative care that also deserve serious attention. We will review the current state of research on psychedelic therapies in the context of adults facing serious illness and those who care for them, and then will go on to discuss possible applications within pediatric palliative care. These include psychedelic-assisted therapy for anxiety and depression in parents of children facing serious illness, for children facing serious illness (with discussion of potential differences between adolescents and young adults versus younger children), and for clinicians caring for children facing serious illness. The presenters will also discuss work they are directly involved in looking at the use of psilocybin-assisted bereavement support for parents. Participants will leave with an understanding of the current state of research and legislation around psychedelic-assisted therapies, as well as potential applications within the context of pediatric palliative care and possible next steps in advancing the field.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.048" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.12.048</a>
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2023
Adrian C
April List 2023
Hallucinogens
Journal of Pain and Symptom Management
Palliative Care
Spence D
Waldman E
-
Dublin Core
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Title
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April 2023 List
Text
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April List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.033" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.12.033</a>
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A Seat at the Table: Professional Competencies Define Roles and Value of Psychologists in Pediatric Palliative Care (TH110B)
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
Palliative Care
Creator
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Thompson AL; McCarthy SR; Kentor RA
Description
An account of the resource
Outcomes: 1. Describe the development of essential competencies for psychologists in pediatric palliative care (PPC) 2. Discuss psychologists' roles in PPC, research, and education and the value of inclusion as members of the multidisciplinary PPC team Psychologists are not yet routinely embedded into pediatric palliative care (PPC) teams, though have been increasingly recognized as contributing unique expertise to the field (eg, evidence-based assessment and treatment of psychological symptoms; research methods, design, and implementation; team- and systems-related skills). Accordingly, national and international organizations have called for inclusion of psychologists and behavioral health specialists within PPC (eg, World Health Organization, 2018; American Psychological Association, 2017; Psycho-Oncology Cooperative Research Group, 2021). Responding to these calls, a workgroup of nine pediatric psychologists (ie, clinicians, researchers, and educators with 4–16 years of experience in PPC) set out to develop competencies for PPC psychologists. Goals were to (1) define the role of psychology in PPC and increase interdisciplinary colleagues’ understanding of our expertise, (2) advocate for inclusion of psychologists in PPC teams, and (3) standardize graduate and post-graduate training to ensure a competent workforce. The proposed Podium Presentation will describe the process of developing these competencies, including review of existing competencies in related mental health disciplines and other psychology subspecialties, selection of a competency model, competency draft development, and review by a multidisciplinary and diverse group of stakeholders, all with careful attention to diversity, equity, and inclusion in clinical care, research, education, and training. We will introduce the essential competencies in six functional and foundational domains (ie, application, education, systems, science, interpersonal, and professionalism) along with corresponding behavioral anchors, thereby orienting the multidisciplinary audience to the unique contributions of psychologists in PPC. Finally, we will highlight how these competencies can help PPC leaders advocate for inclusion of psychology on PPC teams, recruit qualified psychologists into new roles on those teams, and best utilize the expertise of their psychology team members to promote comprehensive biopsychosocial care of patients and families.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.033" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.12.033</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
April List 2023
Journal of Pain and Symptom Management
Kentor RA
McCarthy SR
Palliative Care
Thompson AL
-
Dublin Core
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Title
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April 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
April List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.064" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.12.064</a>
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Title
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Creating a "Journey Map" for Children with Severe Neurologic Impairment: A Collaboration Between Private and Academic Pediatric Palliative Care, Nonprofit Organizations, and Parents. (FR201B)
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
Palliative Care
Creator
An entity primarily responsible for making the resource
Thienprayoon R; Lord BT; Siedman J; Hauer J
Description
An account of the resource
Outcomes: 1. Describe how design thinking methodology can be applied to palliative care problems to create novel solutions and products for patients and families 2. Identify the stages of life for a patient with severe neurologic impairment and parental needs at all stages Design thinking methodology is powered by empathizing with patient/family experiences to articulate meaningful problems, distill themes to ideate solutions, and frame and design plans to implement solutions. In 2020, the palliative care team at Cincinnati Children's Hospital Medical Center (CCHMC) worked with a team from the Live Well Collaborative (LWC) to apply design thinking methodology to pediatric palliative care. The LWC is a nonprofit organization whose purpose is to apply design thinking methodology to co-create innovations aimed at improving health. Interviews of palliative care patients and their caregivers revealed an unmet need for patient- and family-centered educational tools to help visualize disease trajectory, improve patient and parent agency with medical recommendations, and improve quality of life and future planning. In response, a web-based Journey Map application was created. In 2021, the LWC team focused the Journey Map tool for use by families of children with severe neurologic impairment (SNI) that 1) maps points in the trajectory of a patient with SNI across their lifespan, 2) visualizes and explains the medical stages of SNI, 3) focuses on parental psychosocial support and needs, and 4) infuses the palliative care voice and concepts throughout. As the SNI Journey Map was created, CCHMC partnered with Courageous Parents Network, a nonprofit organization dedicated to supporting parents of children with serious illness, and Dr. Julie Hauer, a pediatric palliative care physician specializing in the care of children with SNI, to ensure that the Journey Map tool would be truly parent-focused and reach the greatest audience of parents and clinicians nationally. The Journey Map tool is the result of an innovative collaboration between academic and private palliative care clinicians, local and national nonprofit organizations, and parents. This unique tool will be hosted on the Courageous Parents Network website for perpetuity.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.064" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.12.064</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
April List 2023
Hauer J
Journal of Pain and Symptom Management
Lord BT
Palliative Care
Siedman J
Thienprayoon R
-
Dublin Core
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Title
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April 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
April List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2023.02.009" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2023.02.009</a>
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From Hospital to Home: Referrals to Pediatric Hospice and Home-Based Palliative Care
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Palliative Care; Hospice; Pediatrics; Hospices; Referral and Consultation; Home-Based Palliative Care
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Lotstein D; Klein MJ; Lindley LC; Wolfe J
Description
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CONTEXT: Hospital-based pediatric palliative care (PPC) may help optimize referrals to community-based hospice and home-based palliative care (HBPC) for children with serious illness, yet little is known about their referral practices. OBJECTIVES: To describe community-based program referrals from a PPC team, identifying factors associated with referral type, and potential misalignment between patient needs and referral received. METHODS: Chart abstraction of patients seen in 2017 by the PPC team of a large, urban children's hospital, followed for at least 6 months or until death, including clinical and demographic characteristics, and referrals to hospice and HBPC. RESULTS: Of the 302 study-eligible patients, 25% died during the hospitalization of the first 2017 visit. Of the remaining 228 patients, 42 (18.4%) were referred to HBPC and 58 (25.4%) to hospice. Excluding patients referred to hospice care, only one-third with demographic eligibility were referred to HBPC; those seen in the ICU were least likely to be referred. Over half of the 58 patients referred to hospice died within the study period (n=34, 58.6%); descendants were more likely to have cancer (p=.002) and less likely to have a neurologic (p=.021) diagnosis. CONCLUSION: Despite demographic eligibility, a minority of patients seen by a hospital-based PPC team received referrals for hospice or HBPC. Children discharged from an ICU and those with neurologic conditions may be at higher risk of missing referrals best aligned with their needs. Future research should identify and address causes of referral misalignment. Advocacy for programs adaptable to patients' changing needs may also be needed.
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<a href="http://doi.org/10.1016/j.jpainsymman.2023.02.009" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.02.009</a>
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2023
April List 2023
home-based palliative care
Hospice
Hospices
Journal of Pain and Symptom Management
Klein MJ
Lindley LC
Lotstein D
Palliative Care
Pediatrics
Referral And Consultation
Wolfe J
-
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April 2023 List
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April List 2023
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.042" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.12.042</a>
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The Process and Impact of a Stakeholder Driven Serious Illness Communication Program for Advance Care Planning in AYAs and Parents of Children with Serious Illness (TH114C)
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Journal of Pain and Symptom Management
Date
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2023
Subject
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Advance Care Planning
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Decourcey DD; Schwartz A; Bernacki R; Lach S; Wolfe J
Description
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Outcomes: 1. Describe the evidence-based benefits of serious illness conversations 2. Describe outcomes from a structured, multicomponent advance care planning communication intervention, the Pediatric Serious Illness Communication Program Background Early pediatric advance care planning (ACP), which aims to ensure care is aligned with patient and family goals and values, is associated with better end-of-life outcomes. However, ACP for seriously ill children, adolescents, and young adults (AYAs) remains uncommon and many pediatric clinicians report a lack of comfort with serious illness communication. Objectives We aimed to pilot the feasibility and acceptability of a multicomponent, structured ACP communication intervention, the Pediatric Serious Illness Communication Program (PediSICP), to teach serious illness communication skills to non-palliative care clinicians and facilitate longitudinal ACP. Methods Single-arm feasibility pilot of the PediSICP in AYAs with serious illness (13+), parents of children with serious illness, and clinicians. The PediSICP consists of an ACP communication occasion supported by a three-part conversation tool preceded by focused clinician training. The a priori feasibility threshold was >70% provider completion of the PediSICP intervention. Results We conducted 10 virtual trainings with interdisciplinary clinicians (N=40); 62% reported no prior ACP training. After training, 97% of participants were highly satisfied with training. Trained clinicians (n=30; 75%) conducted and documented 42 ACP conversations with 36 parents and six AYAs using the PediSICP framework; median conversation duration was 26 minutes [IQR 10–45]. All clinicians agreed that they felt prepared for the conversation and would recommend the PediSICP to colleagues. Thirty-three parents and five AYAs completed the intervention and reported participation was worthwhile (85%), they felt listened to (95%), and would recommend the PediSICP to other families (90%). Conclusions The PediSICP ACP intervention is feasible, acceptable, and highly valued by AYAs and parents of seriously ill children. Novel integration of web conferencing makes this program easily scalable for wider dissemination. Further evaluation will occur through post-intervention surveys and interviews to explore patient and family report of shared decision making, therapeutic alliance, communication quality, and psychological distress.
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.042" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.12.042</a>
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2023
Advance Care Planning
April List 2023
Bernacki R
DeCourcey DD
Journal of Pain and Symptom Management
Lach S
Schwartz A
Wolfe J
-
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April 2023 List
Text
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April List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2023.01.025" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2023.01.025</a>
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Patterns of Pediatric Palliative and End-Of-Life Care in Neonatal Intensive Care Patients in the Southern U.S
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Journal of Pain and Symptom Management
Date
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2023
Subject
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Terminal Care; Infant Newborn; end-of-life care; pediatric palliative care; Neonatal intensive care; intensity of care
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Currie ER; Wolfe J; Boss R; Johnston EE; Paine C; Perna SJ; Buckingham S; KcKillip KM; Li P; Dionne-Odom JN; Ejem D; Morvant A; Nichols C; Bakitas MA
Description
An account of the resource
OBJECTIVE: Describe pediatric palliative care (PPC) patterns and treatment intensity during the last 48 hours of life among neonatal intensive care unit (NICU) patients in the Southern U.S. who received specialized PPC. DESIGN: Retrospective cohort analysis SETTING/ SUBJECTS: Infants who received PPC consultation in the NICU before death in two NICUs (in Alabama and Mississippi) from 2009-2017 (n=195). MEASUREMENTS: Medical record abstraction included: clinical characteristics of NICU infants, palliative and end-of-life care characteristics, patterns of PPC, and intensive medical treatments in the last 48 hours of life. RESULTS: The sample was racially (48.2% Black) and geographically (35.4% rural) diverse. Most infants died after withdrawal of life-sustaining interventions (58%) and had do not attempt resuscitation orders documented (75.9%); very few infants enrolled in hospice (6.2%). Initial PPC consult occurred a median of 13 days after admission and a median of 17 days before death. Infants with a primary diagnosis of genetic or congenital anomaly received earlier PPC consultation (p= 0.02) compared to other diagnoses. In the last 48 hours of life, NICU patients received intensive interventions including mechanical ventilation (81.5%), CPR (27.7%) and surgeries or invasive procedures (25.1%). Black infants were more likely to receive CPR compared to White infants (p= 0.04). CONCLUSION: Overall, PPC consultation occurred late in NICU hospitalizations, infants received high-intensity medical interventions in the last 48 hours of life, and there are disparities in intensity of treatment interventions at end of life. Further research is needed to explore if these patterns of care reflect parent preferences and goal concordance.
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<a href="http://doi.org/10.1016/j.jpainsymman.2023.01.025" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.01.025</a>
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2023
April List 2023
Bakitas MA
Boss R
Buckingham S
Currie ER
Dionne-Odom JN
Ejem D
End-of-life Care
Infant Newborn
intensity of care
Johnston EE
Journal of Pain and Symptom Management
KcKillip KM
Li P
Morvant A
neonatal intensive care
Nichols C
Paine C
Pediatric Palliative Care
Perna SJ
Terminal Care
Wolfe J
-
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April 2023 List
Text
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April List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2023.01.021" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2023.01.021</a>
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Measuring Pediatric Palliative Care Quality: Challenges and Opportunities
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Journal of Pain and Symptom Management
Date
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2023
Subject
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Palliative Care; Pediatric palliative care; quality measurement; quality of care; quality improvement
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Boyden JY; Bogetz JF; Johnston EE; Thienprayoon R; Williams CSP; McNeil MJ; Patneaude A; Widger KA; Rosenberg AR; Ananth P
Description
An account of the resource
Pediatric palliative care (PPC) programs vary widely in structure, staffing, funding, and patient census, resulting in inconsistency in service provision. Improving the quality of palliative care for children living with serious illness and their families requires measuring care quality, ensuring that quality measurement is embedded into day-to-day clinical practice, and aligning quality measurement with healthcare policy priorities. Yet, numerous challenges exist in measuring PPC quality. This paper provides an overview of PPC quality measurement, including challenges, current initiatives, and future opportunities. While important strides toward addressing quality measurement challenges in PPC have been made, including ongoing quality measurement initiatives like the Cambia Metrics Project, the PPC What Matters Most study, and collaborative learning networks, more work remains. Providing high-quality PPC to all children and families will require a multi-pronged approach. In this paper, we suggest several strategies for advancing high-quality PPC, which includes 1) considering how and by whom success is defined, 2) evaluating, adapting, and developing PPC measures, including those that address care disparities within PPC for historically marginalized and excluded communities, 3) improving the infrastructure with which to routinely and prospectively measure, monitor, and report clinical and administrative quality measures, 4) increasing endorsement of PPC quality measures by prominent quality organizations to facilitate accountability and possible reimbursement, and 5) integrating PPC-specific quality measures into the administrative, funding, and policy landscape of pediatric healthcare.
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<a href="http://doi.org/10.1016/j.jpainsymman.2023.01.021" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.01.021</a>
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2023
Ananth P
April List 2023
Bogetz JF
Boyden JY
Johnston EE
Journal of Pain and Symptom Management
McNeil MJ
Palliative Care
Patneaude A
Pediatric Palliative Care
Quality Improvement
quality measurement
Quality Of Care
Rosenberg AR
Thienprayoon R
Widger KA
Williams CSP
-
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Title
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2021 Special Edition 2 - Oncology
Text
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2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.06.008" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2021.06.008</a>
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An Interprofessional Team-Based Intervention to Address Barriers to Initiating Palliative Care in Pediatric Oncology: A Multiple-Method Evaluation of Feasibility, Acceptability, and Impact
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Journal of Pain and Symptom Management
Date
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2021
Subject
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oncology; Pediatric palliative care; feasibility; codesign; team cohesion; team collaboration
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Walter JK; Hill DL; Schall TE; Szymczak JE; Parikh S; DiDomenico C; Carroll KW; Nye RT; Feudtner C
Description
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CONTEXT: Many children with advanced cancer are not referred to palliative care despite both professional recommendations to do so and bereaved parental preference for earlier support from sub-specialty palliative care. OBJECTIVES: To assess the feasibility, acceptability, and impact of an adaptive intervention to address individual and team-level barriers to specialty palliative care referrals. METHODS: A multiple-method approach assessed feasibility and acceptability among clinicians from pediatric oncology teams at a single institution. Quantitative measures of comfort with palliative care consultations, team cohesion, and team collaboration were conducted before and after the intervention. Number of palliative care consults were examined before, during, and after sessions. Intervention satisfaction surveys and qualitative interviews were conducted after the intervention. RESULTS: Twenty-six team members (90% of consented) attended at least one intervention session with 20 (69%) participants completing 75% or more sessions. The intervention was modified in response to participant feedback. After the intervention, participants reported greater team cohesion, comfort discussing palliative care consultation, team collaboration, process satisfaction, and decision satisfaction. Participants agreed that the training was useful, effective, helpful, and worthwhile, that they would use the skills, and that they would recommend the training to other providers. The numbers of palliative care consults increased before intervention sessions were conducted, but did not significantly change during or after the sessions. In the interviews, participants reported overall favorably regarding the intervention with some participants reporting changes in practice. CONCLUSION: An adaptive intervention to reduce barriers to initiating palliative care for pediatric oncology teams is feasible and acceptable.
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.06.008" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.06.008</a>
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2021
2021 Special Edition - Oncology
Carroll KW
codesign
DiDomenico C
Feasibility
Feudtner C
Hill DL
Journal of Pain and Symptom Management
Nye RT
Oncology
Parikh S
Pediatric Palliative Care
Schall TE
Szymczak JE
team cohesion
team collaboration
Walter JK
-
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Title
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2021 Special Edition 2 - Oncology
Text
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2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.08.035" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2020.08.035</a>
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Definitely Mixed Feelings: The Effect of COVID-19 on Bereavement in Parents of Children Who Died of Cancer
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Journal of Pain and Symptom Management
Date
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2020
Subject
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bereavement; Bereavement; Female; Humans; Male; Parents/psychology; Attitude to Death; Adaptation Psychological; grief; Attitude to Death; pediatric cancer; bereaved parents; Neoplasms; Neoplasms; Adaptation Psychological/physiology; Parents -- Psychosocial Factors; Disease Outbreaks; Pandemics; Covid-19; Bereavement; Coronavirus Infections/psychology; Pneumonia Viral/psychology; Arthritis Impact Measurement Scales; Coronavirus Infections -- Psychosocial Factors; Pneumonia Viral -- Psychosocial Factors; Ways of Coping Questionnaire
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Helton G; Wolfe J; Snaman JM
Description
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Context: Coronavirus disease 2019 (COVID-19) has impacted most elements of daily life, including the provision of support after a child's death and the experience of parental bereavement.Objectives: This study aims to examine ways in which COVID-19 has affected the bereavement experiences of parents whose children died of cancer before the pandemic.Methods: Parents who participated in a survey-based study examining the early grief experience were invited to complete a semistructured interview. During the interview, which focused on examining the current support for parents and other family members within the first several years after the child's death, participants were asked how COVID-19 has impacted their life and bereavement.Results: Fifteen of 33 eligible parents completed the interview; 14 were white and non-Hispanic, five were males. Parents participated an average of 19 (range 12-34) months after their child's death. COVID-19 was addressed in 13 interviews. Eleven codes were used to describe interview segments; the most commonly used codes were change in support, no effect, familiarity with uncertainty/ability to cope, and change in contact with care/research team.Conclusion: Parents identified multiple and variable ways-both positive, negative, and neutral-how COVID-19 has affected their bereavement. Many parents commented on feeling more isolated because of the inability to connect with family or attend in-person support groups, whereas others acknowledged their experience has made them uniquely positioned to cope with the uncertainty of the current situation. Clinicians must find innovative ways to connect with and support bereaved parents during this unique time.
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.08.035" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.08.035</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
2021 Special Edition - Oncology
Adaptation Psychological
Adaptation Psychological/physiology
Arthritis Impact Measurement Scales
Attitude To Death
Bereaved Parents
Bereavement
Coronavirus Infections -- Psychosocial Factors
Coronavirus Infections/psychology
COVID-19
Disease Outbreaks
Female
Grief
Helton G
Humans
Journal of Pain and Symptom Management
Male
Neoplasms
Pandemics
Parents -- Psychosocial Factors
Parents/psychology
Pediatric Cancer
Pneumonia Viral -- Psychosocial Factors
Pneumonia Viral/psychology
Snaman JM
Ways of Coping Questionnaire
Wolfe J
-
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Title
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2021 Special Edition 2 - Oncology
Text
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2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.11.012" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2020.11.012</a>
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Parental Perceptions of Hospital-Based Bereavement Support Following a Child's Death from Cancer: Room for Improvement
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Bereavement; Grief; Parents; Childhood Cancer; Bereavement Support
Creator
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Helton G; Morris SE; Dole OR; Wolfe J; Snaman JM
Description
An account of the resource
CONTEXT: The death of a child from cancer is a devastating event, placing bereaved parents at risk for both physical and psychosocial morbidities. Despite growing awareness of these outcomes and increased hospital-based support, bereaved parents continue to express a desire for additional assistance. OBJECTIVES: We examined parental perceptions of bereavement support from the clinical teams and institution and suggested modifications to hospital support strategies. METHODS: We explored the answers to four questions on the bereavement support provided from the care team and institutional mailings from a larger survey, querying parents of children who died from cancer 6 to 24 months prior to participation. Answers were Likert-scale based with additional free text responses. RESULTS: Forty-nine parents completed the survey (response rate 36%). The respondents were predominantly white (N=43, 88%), female (N=32, 65%), and non-Hispanic/Latino (N=43, 88%). The mean length of time from child's death to completion was 13 months. Twenty-seven (55%) and 26 (53%) parents indicated that contact with care team and mailings, respectively, were at least a little helpful in their grief experience. In free text responses, parents identified support outside the hospital (28 respondents), groups and events hosted by the hospital or hospice (8), contact with care team (3), and hospital mailings (1) as the most helpful. Findings support modifications to hospital support strategies. CONCLUSIONS: Bereaved parents request additional supportive services. Using the parents' perspective and recommendations, we outline options to augment support and provide a variety of supportive resources for bereaved parents to access in their own time.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.11.012" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.11.012</a>
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2020
2021 Special Edition - Oncology
Bereavement
Bereavement Support
Childhood Cancer
Dole OR
Grief
Helton G
Journal of Pain and Symptom Management
Morris SE
Parents
Snaman JM
Wolfe J
-
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.01.022" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2021.01.022</a>
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Relationship Between Household Material Hardship and Distress in Parents of Children with Advanced Cancer: A Report from the PediQUEST Response Trial (T315A)
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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
2021
Subject
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Oncology
Creator
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Eche IJ; Orellana L; Dussel V; Bona K; Wolfe J
Description
An account of the resource
Objectives: 1. Explain the association between household material hardship and distress in parents of children with advanced cancer. 2. Propose how housing insecurity can be modified for families of children with advanced cancer through providing systematic psychosocial support. Original Research Background: Socioeconomic status (SES) is associated with inferior health outcomes in pediatric cancer, but little is known about SES and distress in parents of children with advanced cancer. Research Objectives: To characterize the relationship between SES as measured by household material hardship (HMH, food, energy and/or housing insecurity) and distress in parents of children with advanced cancer. Method(s): We conducted a preliminary cross-sectional analysis of baseline data from the PediQUEST Response multisite randomized controlled early palliative care trial. Primary outcomes included parental state anxiety (State-Trait Anxiety Inventory-state) and depression (Center for Epidemiologic Studies Depression-10 Scale). Regression models were fitted to characterize the relationship between each HMH domain (food, energy and/or housing insecurity) and the primary outcomes. Result(s): Parent (n=82) mean age was 43.6 years (+/-8.4); most were White, non-Hispanic females (n=62, 76%) and married (n=61, 74%). Child mean age was 11.5 years (+/-6.3); 57% male (n=47), 44% with brain and 44% solid malignancies. Parents reported moderate state anxiety (x = 38.2+/-11.4) and high levels of depressive symptoms (x=10.5+/-4.6). Parental state anxiety and depression were correlated (Spearman rho=.54, p<.0001). Forty percent of parents reported at least 1 HMH insecurity (food, 27%; energy, 13%; housing, 26%). Housing insecurity was significantly associated with increased parental state anxiety (7.7, 95%CI: 1.75, 13.7; p=0.012) and depression (2.7, 95%CI:.479, 5.03; p=0.018) after adjusting for sex, age and marital status. Conclusion(s): HMH and parental distress were highly prevalent in this cohort of parents of children with advanced cancer. Housing insecurity may be an important modifiable driver of parental distress. Implications for Research, Policy, or Practice: Families of children with advanced cancer may benefit from HMH screening, especially for housing insecurity. Early identification of housing insecurity could allow for better support of these families. Copyright © 2021
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.01.022" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.01.022</a>
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2021
2021 Special Edition - Oncology
Bona K
Dussel V
Eche IJ
Journal of Pain and Symptom Management
Oncology
Orellana L
Wolfe J
-
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2021 Special Edition 2 - Oncology
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2021 Special Edition - Oncology
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.01.134" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2021.01.134</a>
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A Stakeholder-Driven Qualitative Study to Define High Quality End-of-Life Care for Children With Cancer
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Journal of Pain and Symptom Management
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2021
Subject
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Oncology
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Ananth P; Mun S; Reffat N; Li R; Sedghi T; Avery M; Snaman J; Gross CP; Ma X; Wolfe J
Description
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Context Among adults with cancer, measures for high quality end-of-life care (EOLC) include avoidance of hospitalizations near end of life. For children with cancer, no measures exist to evaluate or improve EOLC, and adult quality measures may not apply. Objective We engaged key stakeholders to explore EOLC priorities for children with cancer and their families, and to examine relevance of existing adult EOLC quality measures for children with cancer. Methods In a multicenter qualitative study, we conducted interviews and focus groups with: adolescents and young adults (AYAs) with advanced cancer, parents of children with advanced cancer, bereaved parents, and interdisciplinary healthcare professionals. We transcribed, coded, and employed thematic analysis to summarize findings. Results We enrolled 54 stakeholders (25 parents [including 12 bereaved parents], 10 AYAs, and 19 healthcare professionals). Participants uniformly prioritized direct communication with children about preferences and prognosis, interdisciplinary care, symptom management, and honoring family preference for location of death. Many participants valued access to the emergency department or hospital for symptom management or supportive care, which diverges from measures for high quality EOLC in adults. Most wished to avoid mechanical ventilation and cardiopulmonary resuscitation. Notably, participants generally valued hospice; however, few understood hospice care or had utilized its services. Conclusion Childhood cancer stakeholders define high quality EOLC primarily through person-centered measures, characterizing half of existing adult-focused measures as limited in relevance to children. Future research should focus on developing techniques for person-centered quality measurement to capture attributes of greatest importance to children with cancer and their families.
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.01.134" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.01.134</a>
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2021
2021 Special Edition - Oncology
Ananth P
Avery M
Gross CP
Journal of Pain and Symptom Management
Li R
Ma X
Mun S
Oncology
Reffat N
Sedghi T
Snaman J
Wolfe J
-
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.12.003" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2020.12.003</a>
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Title
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The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review
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Journal of Pain and Symptom Management
Date
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2021
Subject
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Oncology
Creator
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Kaye EC; Weaver MS; DeWitt LH; Byers E; Stevens SE; Lukowski J; Shih B; Zalud K; Applegarth J; Wong HN; Baker JN; Ullrich CK; Committee Aahpm Research
Description
An account of the resource
CONTEXT: Children with cancer and their families have complex needs related to symptoms, decision-making, care planning, and psychosocial impact extending across the illness trajectory, which for some includes end of life. Whether specialty pediatric palliative care (SPPC) is associated with improved outcomes for children with cancer and their families is unknown. OBJECTIVE: We conducted a systematic review following PRISMA guidelines to investigate outcomes associated with SPPC in pediatric oncology with a focus on intervention delivery, collaboration, and alignment with National Quality Forum domains. METHODS: We searched PubMed, Embase, Scopus, Web of Science, and CINAHL databases from inception until April 2020 and reviewed references manually. Eligible articles were published in English, involved pediatric patients aged 0-18 years with cancer, and contained original data regarding patient and family illness and end-of-life experiences, including symptom management, communication, decision-making, quality of life, satisfaction, and healthcare utilization. RESULTS: We screened 6682 article abstracts and 82 full-text articles; 32 studies met inclusion criteria, representing 15,635 unique children with cancer and 342 parents. Generally, children with cancer who received SPPC had improved symptom burden, pain control, and quality of life with decreased intensive procedures, increased completion of advance care planning and resuscitation status documentation, and fewer end-of-life intensive care stays with higher likelihood of dying at home. Family impact included satisfaction with SPPC and perception of improved communication. CONCLUSION: SPPC may improve illness experiences for children with cancer and their families. Multisite studies utilizing comparative effectiveness approaches and validated metrics may support further advancement of the field.
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.12.003" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.12.003</a>
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2021
2021 Special Edition - Oncology
Applegarth J
Baker JN
Byers E
Committee Aahpm Research
DeWitt LH
Journal of Pain and Symptom Management
Kaye EC
Lukowski J
Oncology
Shih B
Stevens SE
Ullrich CK
Weaver MS
Wong HN
Zalud K
-
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Title
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2021 Special Edition 2 - Oncology
Text
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2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.03.033" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2020.03.033</a>
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A Pilot Study of the Effects of COMPLETE: A Communication Plan Early Through End of Life, on End-of-Life Outcomes in Children With Cancer
Publisher
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Journal of Pain and Symptom Management
Date
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2020
Subject
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child; hospice; Child; Humans; cancer; communication; palliative care; Communication; Terminal Care; Prospective Studies; hospice; Death; Pilot Projects; Hospice Care; goals-of-care; Neoplasms/therapy; cancer; palliative care; communication; Child; goals-of-care
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Moody KM; Hendricks-Ferguson VL; Baker R; Perkins S; Haase JE
Description
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Context: Most children with cancer die in hospital settings, without hospice, and many suffer from high-intensity medical interventions and pain at end of life (EOL). Objective(s): To examine the effects of COMPLETE: a communication plan early through EOL to increase hospice enrollment in children with cancer at EOL. Method(s): This is a two-phase, single-arm, two-center, and prospective pilot study of hospice enrollment in children with cancer whose parents received COMPLETE. COMPLETE is a series of medical doctor (MD)/registered nurse (RN)-guided discussions of goals of care using visual aids that begin at diagnosis. COMPLETE training for MD/RNs in Phase II was revised to increase their use of empathy. Preintervention/postintervention measurements for child include: time of hospice enrollment, pain, high-intensity medical interventions at EOL, and location of death; and for parent the following: uncertainty and hope. Result(s): Twenty-one parents of 18 children enrolled in the study, and 13 children were followed through EOL. At EOL, 11 (84.6%) died on home hospice or inpatient hospice, and only two (15%) received high-intensity medical interventions. Similar to published findings in the initial 13 parents enrolled in Phase I, parents in Phase II (n = 7) had improvement in hope and uncertainty, and child pain was decreased. Revised training resulted in significant improvement in MD/RN (N = 6) use of empathy (11% in Phase I vs. 100% in Phase II; P = 0.001). Conclusion(s): COMPLETE resulted in increased hospice enrollment in children with cancer at EOL compared with historical controls. In preanalysis/postanalysis, COMPLETE decreased child pain while supporting hope and reducing uncertainty in their parents. Copyright © 2020 American Academy of Hospice and Palliative Medicine
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.03.033" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.03.033</a>
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2020
2021 Special Edition - Oncology
Baker R
Cancer
Child
Communication
Death
goals-of-care
Haase JE
Hendricks-Ferguson VL
Hospice
Hospice Care
Humans
Journal of Pain and Symptom Management
Moody KM
Neoplasms/therapy
Palliative Care
Perkins S
Pilot Projects
Prospective Studies
Terminal Care
-
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Title
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2021 Special Edition 1 - Low Resource Settings
Text
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Citation List Month
2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.07.024" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2021.07.024</a>
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Pediatric Palliative Care Education Model in Low Resource Settings: A Mixed-Methods Evaluation
Publisher
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Journal of Pain and Symptom Management
Date
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2021
Subject
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Palliative care; pediatric; medical education; Bhutan
Creator
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Vesel T; O'Connor M; Vesel L; Beveridge C; McGann C; Jullien S; Nishizawa Y
Description
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CONTEXT: Globally, approximately 21.6 million children need pediatric palliative care (PPC). The greatest burden lies in low- and middle-income countries, where the demand for PPC exceeds available resources. OBJECTIVES: The objective of this study was to assess the impact of a PPC workshop on healthcare providers' self-efficacy, comfort and confidence related to the provision of PPC in a Bhutanese referral-level hospital. METHODS: This mixed-methods study included a one-and-a-half day PPC workshop with surveys administered to participants at three time points (before, immediately after, and six months after the workshop) to evaluate changes in self-efficacy, comfort and confidence. The study was conducted in January 2017 with healthcare providers at the Jigme Dorji Wangchuck National Referral Hospital in Thimphu, Bhutan. RESULTS: Forty-one providers participated in the workshop; 38 completed the post-workshop survey and 27 completed the six months post-workshop survey. Results showed statistically significant increases in comfort levels from pre- to post-workshop surveys across nearly all areas. Qualitative results supported these findings. CONCLUSION: The results of this study suggest that a short, interactive and interdisciplinary workshop, originally designed for the United States setting but adapted to a low resource context, is an effective way to improve providers' self-efficacy, comfort and confidence in the provision of PPC in resource-limited settings.
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.07.024" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.07.024</a>
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2021
2021 Special Edition 1 - Low Resource Settings
Beveridge C
Bhutan
Journal of Pain and Symptom Management
Jullien S
McGann C
Medical Education
Nishizawa Y
O'Connor M
Palliative Care
Pediatric
Vesel L
Vesel T
-
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Title
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2022 Special Edition 4 - Low Resource Setting List
Text
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Citation List Month
2022 Special Edition Low Resource Setting Issue
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.02.021" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.02.021</a>
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Delphi Method to Develop a Palliative Care Tool for Children and Families in Sub-Saharan Africa
Publisher
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Journal of Pain and Symptom Management
Date
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2022
Subject
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Pediatric Palliative Care; Childhood Cancer Clinical Providers; Delphi Method; low and middle income country; Pediatric Palliative Care Assessment
Creator
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Chinyundo K; Casas J; Bank R; Abenawe C; Gaolebale B; Nakirulu A; Maifale-Mburu G; Hesselgrave J; Butia M; Bakulumpagi D; Nassanga I; Higgins J; Hockenberry M
Description
An account of the resource
CONTEXT: In sub-Saharan Africa there is no standardized approach to pediatric palliative care assessment. Because of this, there is a critical demand for evidence-based assessment tools that identify specialized needs of children and their families requiring palliative care in developing countries. OBJECTIVES: To develop a standardized approach to pediatric palliative care (PPC) assessment that includes an individualized plan of care for use in sub-Saharan Africa. METHODS: A Delphi method approach used five rounds to explore core elements that define the essential assessment attributes mandatory for providing excellence in PPC. Using the Delphi method, consensus from 11 PPC experts was obtained during four Delphi rounds regarding the most important questions to include in a PPC assessment tool and plan of care. During the final Delphi round 5, expert consensus was confirmed in a separate group of 36 childhood cancer/palliative care clinical providers. RESULTS: Five core elements were developed as the foundation for a PPC assessment. A symptom assessment tool was developed that includes 15 symptoms that PPC experts agreed occurred more than 65% of the time in their patients. CONCLUSION: The Delphi method was an effective tool to develop a consensus on a PPC assessment tool to use with children and their families in sub-Saharan Africa. This standardized approach will enable collection of data to drive outcomes and research. Key Message. The need for a culturally appropriate PPC assessment tool is crucial to promoting excellence in palliative care around the globe. This tool will have a tremendous impact on the care of children and their families in sub-Saharan Africa.
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.02.021" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.02.021</a>
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2022
2022 Special Edition Low Resource Setting Issue
Abenawe C
Bakulumpagi D
Bank R
Butia M
Casas J
Childhood Cancer Clinical Providers
Chinyundo K
Delphi Method
Gaolebale B
Hesselgrave J
Higgins J
Hockenberry M
Journal of Pain and Symptom Management
low and middle income country
Maifale-Mburu G
Nakirulu A
Nassanga I
Pediatric Palliative Care
Pediatric Palliative Care Assessment
-
Dublin Core
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Title
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2022 Special Edition 4 - Low Resource Setting List
Text
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Citation List Month
2022 Special Edition Low Resource Setting Issue
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.01.006" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.01.006</a>
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Palliative Care Services within a Pediatric Hematology-Oncology Program in a Low-Resource Setting
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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global health; hematology; oncology; Pediatrics; sub-Saharan Africa
Creator
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Silverstein A; Butia M; Bank R; Manda G; Nyasulu C; Mwango N; Makuti S; Chikasema M; Torrey S; Hesselgrave J; Casas J; Thambo L; Msekandiana A; Chiume M; Ozuah N; Huibers MH
Description
An account of the resource
CONTEXT: Outcomes for children with cancer in sub-Saharan Africa (SAA) are dismal due to delayed diagnosis and limited access to curative therapy. When establishing a pediatric hematology-oncology (PHO) program in low-resource settings, early integration of palliative care services becomes essential. While palliative care is a human right, equitable distribution is lacking. OBJECTIVES: We aim to describe our experience establishing a palliative care program, the services offered, and the distribution of patients served. METHODS: This is a brief description of our PHO palliative care program in Lilongwe, Malawi at a tertiary care center and a three-year retrospective review of activities (2017-2020). Services offered include inpatient, outpatient, home visits, end of life care, and strengthening of referral systems. RESULTS: Over the 3-year period, 315 patients were enrolled. Fifty-seven percent (n=179) were male. The median age was 7 years (5 months - 22 years). Patients served were from 17 of 28 districts within Malawi. Diagnoses of patients included 43% solid tumors (n=135), 22% lymphoma (n=68), 15% leukemia (n=47) and 21% hematologic disease (n=65). Forty percent of patients have died (n=125), with 53% of deaths occurring at home (n=66), 22% in the hospital (n=28), and 25% at unknown locations (n=31). CONCLUSION: Palliative care is a critical component of PHO programs worldwide. Programs must leverage existing networks to ensure optimal care to children and families. We demonstrate the feasibility of integrating palliative care services within a PHO program in a low-resource setting, which could serve as a model for other countries in SSA.
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.01.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.01.006</a>
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2022
2022 Special Edition Low Resource Setting Issue
Bank R
Butia M
Casas J
Chikasema M
Chiume M
Global Health
Hematology
Hesselgrave J
Huibers MH
Journal of Pain and Symptom Management
Makuti S
Manda G
Msekandiana A
Mwango N
Nyasulu C
Oncology
Ozuah N
Pediatrics
Silverstein A
Sub-Saharan Africa
Thambo L
Torrey S
-
Dublin Core
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Title
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March 2023 List
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Text
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Citation List Month
March List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.10.014" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.10.014</a>
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Vaccine Preventable Diseases in Pediatric Palliative Care - A Multicenter Cross-Sectional Study
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Cesarean Section; Cross-Sectional Studies; Palliative Care; Vaccination; Vaccines
Creator
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Vaillant V; Tretiakova I; Berthold D; Scheer M; Kimmig A; Hagenguth A; Kaestner J; Meinhardt A; Kriwy P; Wolff J; Hauch H; Tretiakova I
Description
An account of the resource
Context: Vaccine preventable diseases lead to distressful symptoms and complications among pediatric patients receiving specialized home palliative care. There was no data on the vaccination compliance.Objective: The objective was to determine the vaccination coverage, discuss the relevance of vaccinations and provide vaccination recommendations in pediatric palliative care.Methods: Vaccination data were compared in a multicenter cross-sectional study. Expert interviews were conducted to evaluate symptom burden. The vaccination status of patients treated by six German pediatric specialized home palliative care teams was recorded from 01/2019 to 12/2019. The data were compared to the national immunization schedule and the vaccination rate of a representative German pediatric cohort. Onset of missed vaccination was compared to the date of diagnosis of the life-limiting condition. A risk score was calculated to evaluate the relevance of each individual vaccinations.Results: Vaccination rates of Tdpa, haemophilus influenzae type B, poliomyelitis, hepatitis B, pneumococcal disease, meningococcal diseases type C, and MMR were lower compared to healthy controls. There were no significant differences in varicella. In most cases the discontinuation of recommended immunizations occurred after diagnosis of the palliative condition. Influenza had the highest risk score and was the most frequent vaccine preventable disease in retrospective data. This paper includes a pragmatic proposal for the management of vaccination in this vulnerable population.Conclusion: Children and adolescents with life-limiting conditions are at increased risk of vaccine preventable diseases. Individual vaccination counselling is recommended.
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.10.014" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.10.014</a>
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2023
Berthold D
Cesarean Section
Cross-sectional Studies
Hagenguth A
Hauch H
Journal of Pain and Symptom Management
Kaestner J
Kimmig A
Kriwy P
March List 2023
Meinhardt A
Palliative Care
Scheer M
Tretiakova I
Vaccination
Vaccines
Vaillant V
Wolff J
-
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March 2023 List
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Text
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March List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.139" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.12.139</a>
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Home-Based Specialized Pediatric Palliative Care: A Systematic Review and Meta-Analysis
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Home Care Services; Palliative Care; Pediatric; Place of Death; Quality of Life; Symptom Management
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Hammer NM; Bidstrup PE; Brok J; Devantier M; Sjøgren P; Schmiegelow K; Larsen A; Kurita GP; Olsen M; Larsen HB
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An account of the resource
CONTEXT: Although specialized pediatric palliative care (SPPC) teams increasingly provide home-based care, the evidence of its impact has not yet been systematically evaluated. OBJECTIVES: To examine the impact of home-based SPPC in children and adolescents with life-limiting conditions, regarding place of death, quality of life and symptom burden. METHODS: We searched Medline, EMBASE, CINAHL, PsycINFO, the Cochrane Central Register of Controlled Trials, Web of Science and Scopus for studies comparing children and adolescents with life-limiting conditions receiving home-based SPPC with children and adolescents not receiving home-based SPPC, or studies reporting before-and-after measurements. We included studies that reported on place of death, quality of life and/or symptoms. Two authors independently screened the articles, extracted data, and assessed quality. Results were synthesized as a systematic narrative synthesis and meta-analysis, using a random-effects model. RESULTS: We included five studies, which reported on 392 children and adolescents. Meta-analysis showed that receiving home-based SPPC was associated with a more than fourfold increased likelihood of home death (risk ratio 4.64, 95% confidence interval 3.06-7.04; 3 studies; n=296). Most studies reported improved quality of life and reduced symptom burden. The included studies were of low to moderate quality with a high risk of bias. CONCLUSION: This systematic review suggests that home-based SPPC is associated with increased likelihood of home death, and might be associated with improved quality of life and reduced symptom burden. The small number of studies and an overall high risk of bias, however, makes the overall strength of evidence low.
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.139" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.12.139</a>
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2023
Bidstrup PE
Brok J
Devantier M
Hammer NM
home care services
Journal of Pain and Symptom Management
Kurita GP
Larsen A
Larsen HB
March List 2023
Olsen M
Palliative Care
Pediatric
Place Of Death
Quality Of Life
Schmiegelow K
Sjøgren P
Symptom Management
-
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2022 Special Edition 3 - Oncology List
Text
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Citation List Month
2022 Special Edition 3 - Oncology List
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.10.016" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2021.10.016</a>
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One Size Doesn't Fit All in Early Pediatric Oncology Bereavement Support
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Journal of Pain and Symptom Management
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2022
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Helton G; Beight L; Morris SE; Wolfe J; Snaman JM
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.10.016" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.10.016</a>
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2022
2022 Special Edition 3 - Oncology List
Beight L
Bereavement
Child
Female
Grief
Helton G
Humans
Journal of Pain and Symptom Management
Male
Morris SE
Neoplasms
Neoplasms/px [psychology]
Parents/px [psychology]
Snaman JM
Terminal Care
Wolfe J
-
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Title
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2022 Special Edition 3 - Oncology List
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2022 Special Edition 3 - Oncology List
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.05.019" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.05.019</a>
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Multidisciplinary Clinician Perspectives on Embedded Palliative Care Models in Pediatric Cancer
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Journal of Pain and Symptom Management
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2022
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Salek M; Woods C; Gattas M; Gattuso JS; Mandrell B; Baker JN; Kaye EC
Description
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CONTEXT: Integration of palliative care (PC) into pediatric cancer care is considered best practice by national oncology and pediatric organizations. Optimal strategies for PC integration remain understudied, although growing evidence suggests that embedded models improve quality of care and quality of life for patients and families. OBJECTIVES: To describe the perspectives and preferences of multidisciplinary clinicians regarding ideal models for PC integration in pediatric cancer care; to introduce clinicians to the theoretical concept of an embedded care model; to empower clinicians in co-design of a new institutional model through collaborative discussion of anticipated benefits and challenges of embedded model implementation. METHODS: Trained facilitators conducted 24 focus groups, stratified by discipline and care team. Focus groups were audio-recorded and transcribed for inductive content analysis using MAXQDA software. RESULTS: 174 clinicians participated (25 physicians, 30 advanced practice providers [APPs], 70 nurses, 49 psychosocial clinicians). Clinicians across disciplines verbalized that an embedded PC model would improve access to PC; however, identified benefits and challenges varied by discipline. Benefits included earlier integration of PC (physicians, APPs), normalization of PC as an integral aspect of care by patients/families (nurses, psychosocial), collaboration (physicians, psychosocial clinicians), and communication (APPs, psychosocial). Anticipated challenges included inadequate resources and physician resistance (physicians, APPs, nurses) and multidisciplinary role confusion (APPs, nurses, psychosocial). CONCLUSION: Pediatric clinicians recognize the potential value of an embedded PC model. Although some concepts overlapped, multidisciplinary clinicians offered unique beliefs, highlighting the importance of including representative perspectives to ensure that pediatric PC models align with priorities of diverse stakeholders.
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.05.019" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.05.019</a>
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2022
2022 Special Edition 3 - Oncology List
Baker JN
Gattas M
Gattuso JS
Journal of Pain and Symptom Management
Kaye EC
Mandrell B
models of care
multidisciplinary
Palliative Care
Pediatric Cancer
Salek M
Woods C
-
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2022 Special Edition 3 - Oncology List
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2022 Special Edition 3 - Oncology List
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.12.009" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2021.12.009</a>
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Normalization of Symptoms in Advanced Child Cancer: The PediQUEST-Response Case Study
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Journal of Pain and Symptom Management
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2022
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Requena ML; Avery M; Feraco AM; Uzal LG; Wolfe J; Dussel V
Description
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Context: Children, adolescents and young adults with cancer continue to experience significant symptom suffering throughout their illness. Objective(s): To identify barriers to effective symptom management in pediatric advanced cancer. Method(s): Using a qualitative multiple case study we refined the Pediatric Quality of Life and Evaluation of Symptoms Technology Response to the Pediatric Oncology Symptom Experience (PediQUEST Response), a pediatric palliative care (PPC) intervention. Twenty-three children aged >=2 years old with advanced cancer, their parents and primary and PPC clinicians were enrolled. Children and parents reported symptoms weekly over 4-months using the Memorial Symptom Assessment Scale (MSAS) administered by an electronic system (PediQUEST). When symptom distress episodes (SDEs) were reported (MSAS symptom score >=33) we studied symptom management processes using interviews of family members/clinicians, and chart abstractions. Data were coded and analyzed using grounded theory and NVivo software. Result(s): Children reported 308 SDEs within 193 surveys and parents 529 SDEs in 165 surveys administered. We conducted 85 and 88 interviews with families and clinicians respectively. While we confirmed the presence of known barriers, we identified a prominent theme, that symptoms were "normalized." Patients, parents, and all clinicians, including PPC specialists, got accustomed to high symptom burden and lacked expectations that distress could be alleviated. We defined "normalization of symptoms," as the process by which symptom related suffering is appraised as unavoidable. Conclusion(s): Normalization of symptoms is a pervasive barrier enacted by all involved in caring for children with advanced cancer. Strategies to overcome normalization are critical to ease child distress. Copyright © 2021 American Academy of Hospice and Palliative Medicine
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.12.009" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.12.009</a>
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2022
2022 Special Edition 3 - Oncology List
Avery M
Dussel V
Feraco AM
Journal of Pain and Symptom Management
Requena ML
Uzal LG
Wolfe J
-
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Title
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2022 Special Edition 3 - Oncology List
Text
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2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.02.083" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.02.083</a>
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Title
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Interdisciplinary Perspectives on an Embedded Palliative Oncology Model in Pediatric Cancer Care
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Journal of Pain and Symptom Management
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2022
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Salek M; Woods C; Baker J; Kaye E
Description
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Outcomes: 1. Compare and contrast perspectives of multidisciplinary providers in regard to an embedded model of pediatric palliative care (PC) in routine cancer care 2. Propose an embedded PC model of care in the learner's own practice setting Original Research Background: Integration of pediatric palliative care (PPC) into cancer care is recognized as best practice by oncology and pediatrics organizations. However, optimal strategies for integration of PPC within cancer care remain understudied despite growing evidence that suggests embedded models have the potential to improve quality of care. Research Objectives: Embedded models rely on partnerships with interdisciplinary clinicians, whose perspectives regarding this model are not well known. Method(s): We conducted focus groups in an academic pediatric cancer center with groups stratified by discipline (physicians, advance practice providers [APPs], nurses, psychosocial) and by care team (hematologic malignancy, bone marrow transplant, solid tumor, brain tumor). Focus groups were led by trained facilitators and audio-recorded for inductive content analysis to identify clinician perspectives regarding embedded PPC models. Result(s): Across 25 focus groups, 25 physicians, 30 APPs, 71 nurses, and 49 psychosocial clinicians participated. Analysis yielded 3 broad themes: model of care delivery, teamwork, and expectation of responsibilities. Although clinicians identified overlapping themes related to ideal PPC provision and the benefits and challenges inherent to an embedded model, some identified priorities and concepts varied by discipline. Focus groups in all disciplines believed that an embedded PC model would improve access to PPC. Other benefits named included earlier integration (physician, APP), normalization of PPC as an integral aspect of care by patients and families (nurse, psychosocial), collaboration (physician, psychosocial), and communication (APP, psychosocial). Anticipated challenges included inadequate resources (physician, APP, nurse), physician resistance (physician, APP, nurse), and interdisciplinary role confusion (APP, nurse, psychosocial). Conclusion(s): Pediatric oncology interdisciplinary providers recognize the potential value of an embedded model for integration of PPC in the care of children with cancer. Although some concepts and themes overlapped, interdisciplinary clinicians also offered unique perspectives and potential barriers. Implications for Research, Policy, or Practice: These findings highlight the importance of integrating interdisciplinary perspectives when developing an embedded care model to align with priorities of diverse stakeholders. Copyright © 2022
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.02.083" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.02.083</a>
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2022
2022 Special Edition 3 - Oncology List
Baker J
Journal of Pain and Symptom Management
Kaye E
Salek M
Woods C
-
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Title
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2022 Special Edition 3 - Oncology List
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2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.05.007" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.05.007</a>
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The Supportive Care Clinic: A Novel Model of Embedded Pediatric Palliative Oncology Care
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Journal of Pain and Symptom Management
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2022
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Brock KE; DeGroote NP; Roche A; Lee A; Wasilewski K
Description
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CONTEXT: Pediatric palliative care (PPC) improves quality of life and end-of-life outcomes for children with cancer, but often occurs late in the disease course. The Supportive Care Clinic (SCC) was launched in 2017 to expand outpatient PPC access. OBJECTIVES: To describe the inaugural four years (2017-2021) of an academic, consultative, embedded SCC within pediatric oncology. METHODS: Descriptive statistics (demographic, disease, treatment, visit, and end-of-life) and change over time were calculated. RESULTS: During the first four years, 248 patients (51.6% male; 58.1% White; 35.5% Black; 13.7% Hispanic/Latino) were seen in SCC, totaling 1,143 clinic visits (median 4, IQR 2,6), including 248 consultations and 895 follow-up visits. Clinic visits grew nearly 300% from year one to four. Primary diagnoses were central nervous system tumor (41.9%), solid tumor (37.5%), and leukemia/lymphoma (17.3%). The first point of PPC contact became SCC (70.6%) for most referred patients. Among the 136 deceased patients (54.8%), 77.9% had a do-not-resuscitate or Physician Orders for Life Sustaining Treatment in place, and 72.8% received hospice care. When known (n = 112), 89.3% died in their preferred location. The time from SCC consultation to death increased from 74 to 226 days over the four years (P < 0.0001). The proportion of SCC consultations that occurred greater than 90 days from death increased from 39.1% in year one to 85.0% in year four. CONCLUSION: Embedded SCC clinics can be successful, achieve steady growth, improve referrals and timing of PPC, and enhance end-of-life care for children with cancer. Large pediatric cancer centers should include SCC outpatient services.
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.05.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.05.007</a>
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2022
2022 Special Edition 3 - Oncology List
Brock KE
DeGroote NP
End Of Life
Journal of Pain and Symptom Management
Lee A
outpatient clinic
palliative oncology
Pediatric Oncology
Pediatric Palliative Care
Roche A
Supportive Care
Wasilewski K
-
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2022 Special Edition 3 - Oncology List
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2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.02.084" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.02.084</a>
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Impact of Specialized Versus General Palliative Care on the Intensity of Medical Care at the End of Life in Adolescents and Young Adults with Cancer: A Population-Based Cohort Study
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Journal of Pain and Symptom Management
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2022
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Kassam A; Gupta A; Rapoport A; Srikanthan A; Sutradhar R; Luo J; Widger K; Wolfe J; Earle C; Gupta S
Description
An account of the resource
Outcomes: 1. Explain the impact of specialized palliative care on reducing high-intensity end-of-life care in adolescents and young adults with cancer 2. Identify subpopulations among adolescents and young adults with cancer who are at highest risk for reduced access to specialized palliative care Original Research Background: A high proportion of adolescents and young adults (AYAs) with cancer (ages 15-39 years) receive high-intensity (HI) medical care at the end of life (EOL). We have previously shown that palliative care (PC) involvement in this population is associated with lower risk of HI-EOL care. Whether this association differs by specialized or general PC (SPC, GPC) is unknown. Research Objectives: To evaluate the prevalence and predictors of SPC in AYAs with cancer and to evaluate the impact of SPC versus GPC on the intensity of EOL care for AYAs. Method(s): A decedent cohort of AYAs with cancer who died between 2000 and 2017 in Ontario, Canada was assembled from registries and linked to population-based healthcare data. Based on prior studies, the primary composite measure HI-EOL care included any of intravenous chemotherapy <14 days from death, >1 ED visit, and >1 hospitalization or ICU admission <30 days from death. SPC and GPC were defined via previously validated algorithms based on physician billing codes (SPC if practice consisted of >=50% PC-specific billing codes and GPC if PC-specific billing codes were between 10% and 50%). Result(s): Of 7,122 AYAs, 2,140 (30%) received SPC and 942 (13.2%) received GPC. AYAs with hematologic malignancies, male AYAs, and rural AYAs were least likely to have access to SPC. No PC involvement compared to GPC was associated with higher odds of receiving HI-EOL care (OR 1.5; 95% CI, 1.3-1.8; P <.001). However, SPC was associated with the lowest risk of HI-EOL care (OR vs GPC 0.8; 95% CI, 0.7-0.9; P = 0.007). SPC was also associated with decreased odds of ICU admission compared with GPC (OR 0.7; 95% CI, 0.5-0.9; P = 0.006). Conclusion(s): SPC is associated with a lower risk of HI-EOL care in AYAs with cancer as compared to GPC. However, access to SPC remains a challenge. Implications for Research, Policy, or Practice: Our study supports the widespread provision of SPC to AYAs with cancer. Copyright © 2022
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.02.084" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.02.084</a>
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2022
2022 Special Edition 3 - Oncology List
Earle C
Gupta A
Gupta S
Journal of Pain and Symptom Management
Kassam A
Luo J
Rapoport A
Srikanthan A
Sutradhar R
Widger K
Wolfe J
-
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2022 Special Edition 3 - Oncology List
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2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.11.016" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2021.11.016</a>
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The Lived Experiences With Hope From Adolescents and Young Adults Who Have Advanced Cancer
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Journal of Pain and Symptom Management
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2021
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Bennett CR; Coats H; Hendricks-Ferguson VL; Gauthier K; Sousa K
Description
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Objectives 1. Describe the concept of hope based on perspectives of AYAs who experienced advanced cancer. 2. Differentiate the role hope has for AYAs before, during, and after experiencing cancer. Context In clinical care, addressing patients’ hopes may stimulate conversations about their goals, concerns, and values; helping clinicians focus on patient-centered interventions to support the patient's psychological, spiritual, and existential needs. Methods This descriptive qualitative study used a phenomenology informed approach to depict experiences with hope by AYAs who have advanced cancer. The participants completed two semi-structured audio-recorded virtual interviews and co-created narratives and drawings about the role of hope before, during, and after experiencing cancer. Thematic analyses were performed on the narratives. Results Fifteen AYAs aged 12–21 years were recruited from an academic medical center and an online non-profit organization. During data collection participants had either completed treatments (60%), or were actively receiving treatments (40%). Approximately 67% of the sample experienced at least one relapse. A main theme identified from the narratives was Transitions of Hope. Participants described differences in their hope before and after experiencing cancer. Participants who experienced a relapse reported their past experiences helped them build hope during their relapse. Participants described a new sense of purpose after experiencing cancer, such as starting a non-profit organization, giving back to others, doing “what I'm passionate about”, and honoring the legacies of others. Conclusion Transitions in the role of hope occurred over time, becoming a source of mental sustenance during cancer treatment, and a source of altruism after experiencing cancer. This study adds to the understanding of hope for AYAs who have advanced cancer.
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.11.016" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.11.016</a>
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2021
2022 Special Edition 3 - Oncology List
Bennett CR
Coats H
Gauthier K
Hendricks-Ferguson VL
Journal of Pain and Symptom Management
Sousa K
-
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February 2023 List
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February List 2023
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.08.009" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.08.009</a>
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Continued Challenges Accessing Pediatric Hospice Services
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Journal of Pain and Symptom Management
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2022
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Child; Humans; Hospices; Hospice Care; Palliative Care
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Aglio T; Autrey AK; Shostrom VK; Weaver MS; Kaye EC; Lindley LC
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.08.009" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.08.009</a>
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2022
Aglio T
Autrey AK
Child
February List 2023
Hospice Care
Hospices
Humans
Journal of Pain and Symptom Management
Kaye EC
Lindley LC
Palliative Care
Shostrom VK
Weaver MS