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40
63
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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/10.1007/s00520-021-06412-5" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00520-021-06412-5</a>
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Palliative Home-Based Care to Pediatric Cancer Patients: Characteristics and Healthcare Delivered
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Supportive Care in Cancer
Date
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2022
Subject
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Oncology
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de Noriega Í; García-Salido A; Martino R; Herrero B
Description
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OBJECTIVES: Cancer patients constitute an important group in pediatric palliative care. Though the patients' home is the preferred place of care, little is known about the characteristics of patients attended by units that provide home assistance. Our objective is to describe the characteristics of cancer patients and healthcare delivered by a pediatric palliative care unit with a home hospitalization program. METHODS: Retrospective study based on clinical records of deceased patients attended by the pediatric palliative care unit of Madrid over 10 years. Data collected included general characteristics, type of cancer, whether they received home assistance, place of death, healthcare delivered (hospitalizations, devices, oncological treatments…), and symptom prevalence. RESULTS: After excluding 47 patients, the clinical records of 144 patients were analyzed. The median age at referral was 9.4 years (IQR: 5.6-14.1), 61.2% were males; 44.2% had solid non-CNS tumors, 35.4% CNS tumors, and 20.4% hematological malignancies; 137 received home care with 89 not requiring further hospital admissions and 70.1% dying at home. The median follow-up time was 1.6 months (IQR: 0.5-2.9). The most used devices were venous ports (71.4%) and oxygen (49.4%); 53.5% of the patients received oncological support therapies. The most common symptoms were pain (91.8%) dyspnea (49.0%) and fatigue (46.9%). CONCLUSIONS: Home assistance was provided in a high number of patients, with a large proportion needing one or no hospital admissions and 70.1% of them dying at home. Further studies characterizing these patients and the factors which promote early access to palliative care are needed.
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<a href="http://doi.org/10.1007/s00520-021-06412-5" target="_blank" rel="noreferrer noopener">10.1007/s00520-021-06412-5</a>
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2021 Special Edition - Oncology
2022
de Noriega Í
García-Salido A
Herrero B
Martino R
Oncology
Supportive Care In Cancer
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1002/cncr.33830" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/cncr.33830</a>
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A Novel Combined Resilience and Advance Care Planning Intervention for Adolescents and Young Adults with Advanced Cancer: A Feasibility and Acceptability Cohort Study
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Cancer
Date
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2021
Subject
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Oncology
Creator
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Fladeboe KM; O'Donnell MB; Barton KS; Bradford MC; Steineck A; Junkins CC; Yi-Frazier JP; Rosenberg AR
Description
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BACKGROUND: Few evidence-based psychosocial programs have been tested among adolescents and young adults (AYAs) with advanced cancer (AC), and early advance care planning (ACP) in this population is rare. The authors aimed to determine the feasibility and acceptability of 1) delivering an established resilience-coaching program, and 2) integrating ACP into that program, among AYAs with AC. METHODS: Eligible AYAs were 12 to 24 years old, diagnosed with advanced cancer (recurrent/refractory disease or a diagnosis associated with <50% survival) and fluent in English. The Promoting Resilience in Stress Management-Advanced Cancer (PRISM-AC) program included PRISM's standard sessions targeting stress-management, goal-setting, cognitive-restructuring, and meaning-making, delivered 1:1, 1 to 2 weeks apart, plus a new session involving elements of the AYA-specific Voicing My Choices ACP guide. Participants completed surveys at baseline and 12 weeks, and exit interviews following study completion. Feasibility was defined as ≥70% completion of 1) standard 4-session PRISM and 2) the new ACP session among those completing standard PRISM. Acceptability was defined qualitatively. Trajectories of patient-reported anxiety, depression, and hope were examined descriptively. RESULTS: Of 50 eligible, approached AYAs, 26 (52%) enrolled and completed baseline surveys. The AYAs had a mean age of 16 years (SD = 2.7 years), and the majority were male (73%) and White/Caucasian (62%). Twenty-two AYAs (85%) completed standard PRISM, and of those, 18 (82%) completed the ACP session. Feedback was highly positive; 100% and 91% described the overall and ACP programs as valuable, respectively. Anxiety, depression, and hope were unchanged after the program. CONCLUSIONS: Resilience coaching followed by integrated ACP is feasible and acceptable for AYAs with AC. Participating did not cause distress or decrease hope. LAY SUMMARY: Advance care planning (ACP) among adolescents and young adults (AYAs) with advanced cancer can be difficult to introduce. We investigated whether it is feasible and acceptable to integrate ACP into an existing resilience-coaching program for AYAs. In this cohort study of 26 AYAs with advanced cancer, we found the Promoting Resilience in Stress Management-Advanced Cancer program to be feasible (≥70% intervention-completion) and highly acceptable (positive post-participation feedback, no evidence of participant-distress). We conclude that an intervention integrating resilience coaching and ACP is feasible and acceptable among AYAs with advanced cancer.
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<a href="http://doi.org/10.1002/cncr.33830" target="_blank" rel="noreferrer noopener">10.1002/cncr.33830</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2021 Special Edition - Oncology
Barton KS
Bradford MC
Cancer
Fladeboe KM
Junkins CC
O'Donnell MB
Oncology
Rosenberg AR
Steineck A
Yi-Frazier JP
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1007/s00520-021-06500-6" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00520-021-06500-6</a>
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Title
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Relationship of Race and Ethnicity on Access, Timing, and Disparities in Pediatric Palliative Care for Children with Cancer
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Supportive Care in Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Oncology
Creator
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DeGroote NP; Allen KE; Falk EE; Velozzi-Averhoff C; Wasilewski-Masker K; Johnson K; Brock KE
Description
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PURPOSE: Pediatric palliative care (PPC) improves quality of life for children and adolescents with cancer. Little is known about disparities between different racial and ethnic groups in the frequency and timing of PPC referrals. We evaluated the impact of race and ethnicity on the frequency and timing of PPC referral after initiation of an embedded PPO clinic where no formal consultation triggers exist. METHODS: Patients with cancer between 0 and 25 years at diagnosis who experienced a high-risk event between July 2015 and June 2018 were eligible. Demographic, disease, and PPC information were obtained. Descriptive statistics and logistic regression were used to assess likelihood of receiving PPC services by race/ethnicity. RESULTS: Of 426 patients who experienced a high-risk event, 48% were non-Hispanic White, 31% were non-Hispanic Black, 15% were Hispanic of any race, and 4% were non-Hispanic Asian. No significant differences were found between race/ethnicity and age at diagnosis/death, sex, and diagnosis. PPC consultation (p = 0.03) differed by race. Non-Hispanic Black patients were 1.7 times more likely than non-Hispanic White patients to receive PPC after adjustment (p = 0.01). White patients spent less days in the hospital in the last 90 days of life (3.0 days) compared with Black (8.0), Asian (12.5), or Hispanic patients (14.0, p = 0.009) CONCLUSION: Disparities exist in patients receiving pediatric oncology and PPC services. Cultural tendencies as well as unconscious and cultural biases may affect PPC referral by race and ethnicity. Better understanding of cultural tendencies and biases may improve end-of-life outcomes for children and young adults with cancer.
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<a href="http://doi.org/10.1007/s00520-021-06500-6" target="_blank" rel="noreferrer noopener">10.1007/s00520-021-06500-6</a>
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2021 Special Edition - Oncology
2022
Allen KE
Brock KE
DeGroote NP
Falk EE
Johnson K
Oncology
Supportive Care In Cancer
Velozzi-Averhoff C
Wasilewski-Masker K
-
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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/10.1002/cncr.33926" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/cncr.33926</a>
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Locus-Of-Care Disparities in End-Of-Life Care Intensity among Adolescents and Young Adults with Cancer: A Population-Based Study Using the Impact Cohort
Publisher
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Cancer
Date
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2022
Subject
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Oncology
Creator
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Coltin H; Rapoport A; Baxter NN; Nagamuthu C; Nathan PC; Pole JD; Momoli F; Gupta S
Description
An account of the resource
BACKGROUND: Adolescents and young adults (AYAs) with cancer may experience elevated rates of high-intensity end-of-life (HI-EOL) care. Locus-of-care (LOC) disparities (pediatric vs adult) in AYA end-of-life (EOL) care are unstudied. METHODS: A decedent population-based cohort of Ontario AYAs diagnosed between 1992 and 2012 at the ages of 15 to 21 years was linked to administrative data. The authors determined the prevalence and associations of a composite outcome of HI-EOL care that included any of the following: intravenous chemotherapy within 14 days of death, more than 1 emergency department visit, more than 1 hospitalization, or an intensive care unit (ICU) admission within 30 days of death. Secondary outcomes included measures of the most invasive EOL care (ventilation within 14 days of death and ICU death) and in-hospital death. RESULTS: There were 483 decedents: 60.5% experienced HI-EOL care, 20.3% were ventilated, and 22.8% died in the ICU. Compared with patients with solid tumors, patients with hematological malignancies had the greatest odds of HI-EOL care (odds ratio [OR], 2.3; 95% confidence interval [CI], 1.5-3.4), ventilation (OR, 4.7; 95% CI, 2.7-8.3), and ICU death (OR, 4.4; 95% CI, 2.6-4.4). Subjects treated in pediatric centers versus adult centers near death (OR, 2.4; 95% CI, 1.2-4.8) and those living in rural areas (OR, 2.1; 95% CI, 1.1-3.9) were more likely to experience ICU death. CONCLUSIONS: AYAs with cancer experience high rates of HI-EOL care, with patients in pediatric centers and those living in rural areas having the highest odds of ICU death. This study is the first to identify LOC-based disparities in EOL care for AYAs, and it highlights the need to explore the mechanisms underlying these disparities.
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<a href="http://doi.org/10.1002/cncr.33926" target="_blank" rel="noreferrer noopener">10.1002/cncr.33926</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021 Special Edition - Oncology
2022
Baxter NN
Cancer
Coltin H
Gupta S
Momoli F
Nagamuthu C
Nathan PC
Oncology
Pole JD
Rapoport A
-
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2021 Special Edition 2 - Oncology
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1080/09699260.2021.1898077" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/09699260.2021.1898077</a>
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Facebook Recruitment for Children with Advanced Cancer and Their Parents: Lessons from a Web-based Pediatric Palliative Intervention Study
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Progress in Palliative Care
Date
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2021
Subject
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Oncology
Creator
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Cho E; Gilmer MJ; Friedman DL; Hendricks-Ferguson VL; Hinds PS; Akard TF
Description
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Participant recruitment for pediatric palliative intervention studies is a chronic challenge for researchers. Digital recruitment strategies, or digital technology-assisted recruitment methods used to remotely reach and enroll research subjects, can help address these recruitment challenges for pediatric palliative care clinical trials. This study (a) describes Facebook recruitment procedures targeting children with cancer and their parents for a pediatric palliative intervention randomized clinical trial, (b) reports recruitment results, and (c) discusses successful strategies to recruit pediatric populations via Facebook advertisements. Researchers used Facebook advertisements to recruit children with advanced cancer (aged 7 to 17 years) for a web-based legacy intervention. Between years 2015 and 2018, our research team enrolled 150 child-parent dyads (N= 300) to participate in the web-based legacy program. Results suggest that Facebook advertisements can be a successful tool to access and recruit pediatric populations with life-threatening conditions. Further research is needed to determine how innovative social-media recruitment strategies could be used in other populations of patients with serious illnesses and their caregivers to further advance the science in palliative care.
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<a href="http://doi.org/10.1080/09699260.2021.1898077" target="_blank" rel="noreferrer noopener">10.1080/09699260.2021.1898077</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2021 Special Edition - Oncology
Akard TF
Cho E
Friedman DL
Gilmer MJ
Hendricks-Ferguson VL
Hinds PS
Oncology
Progress In Palliative Care
-
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2021 Special Edition 2 - Oncology
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1177/03008916211013384" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/03008916211013384</a>
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End-Of-Life Care in Children and Adolescents with Cancer: Perspectives from A French Pediatric Oncology Care Network
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Tumori
Date
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2022
Subject
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Oncology
Creator
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Blais S; Cohen-Gogo S; Gouache E; Guerrini-Rousseau L; Brethon B; Rahal I; Petit A; Raimondo G; Pellegrino B; Orbach D
Description
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BACKGROUND: In developed countries, cancer remains the leading cause of pediatric death from illness after the neonatal period. OBJECTIVE: To describe the end-of-life care characteristics of children and adolescents with solid tumors (ST) or hematologic malignancies (HM) who died from tumor progression in the Île-de-France area. METHODS: This is a regional, multicentric, retrospective review of medical files of all children and adolescents with cancer who died over a 1-year period. Extensive data from the last 3 months of life were collected. RESULTS: A total of 99 eligible patients died at a median age of 9.8 years (range, 0.3-24 years). The most frequent terminal symptoms were pain (n = 86), fatigue (n = 84), dyspnea (n = 49), and anorexia (n = 41). Median number of medications per patient was 8 (range, 3-18). Patients required administration of opioids (n = 91), oxygen (n = 36), and/or sedation (n = 61). Decision for palliative care was present in all medical records and do-not-resuscitate orders in 90/99 cases. Symptom prevalence was comparable between children and adolescents with ST and HM. A wish regarding the place of death had been expressed for 64 patients and could be respected in 42 cases. Death occurred in hospital for 75 patients. CONCLUSIONS: This study represents a large and informative cohort illustrating current pediatric palliative care approaches in pediatric oncology. End-of-life remains an active period of care requiring coordination of multiple care teams.
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<a href="http://doi.org/10.1177/03008916211013384" target="_blank" rel="noreferrer noopener">10.1177/03008916211013384</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021 Special Edition - Oncology
2022
Blais S
Brethon B
Cohen-Gogo S
Gouache E
Guerrini-Rousseau L
Oncology
Orbach D
Pellegrino B
Petit A
Rahal I
Raimondo G
Tumori
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1089/jpm.2020.0139" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2020.0139</a>
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Title
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Randomized Clinical Trial of a Legacy Intervention for Quality of Life in Children with Advanced Cancer
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Journal of Palliative Medicine
Date
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2021
Subject
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Oncology
Creator
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Akard TF; Dietrich MS; Friedman DL; Wray S; Gerhardt CA; Hendricks-Ferguson V; Hinds PS; Rhoten B; Gilmer MJ
Description
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Background: Legacy-making (actions/behaviors aimed at being remembered) may be a significant component for quality of life (QOL) during advanced illness and end of life. Although legacy interventions have been tested in adults, the impact of legacy activities on QOL for children has yet to be clearly defined. Objective: This study examined the impact of our newly developed web-based legacy intervention on dimensions of QOL among children (7-17 years old) with advanced cancer. Design: This single-site randomized clinical trial (RCT) used a two-group waitlist control design. The legacy intervention guided children to create digital storyboards by directing them to answer legacy questions about themselves (personal characteristics, things they like to do, and connectedness with others) and upload photographs, video, and music. Setting/Subjects: Facebook advertisements recruited children (ages 7-17) with relapsed/refractory cancer and their parents from the United States. Child-parent dyads (N = 150) were randomized to the intervention or usual care group, and 97 dyads were included for analysis. Measurements: Children and parents completed the PedsQL Cancer Module preintervention (T1) and post-intervention (T2). Results: Although not statistically significant, legacy-making demonstrated small effects in child procedural anxiety and perceived physical appearance (Cohen's d 0.35-0.28) compared to the wait-list control group. Conclusions: This study contributes important discoveries, including support for the feasibility of a RCT web-based legacy intervention for children with advanced cancer. We did not find convincing evidence supporting the hypothesis that legacy-making improved child dimensions of QOL across time. Overall, this is a null study that warrants discussion on possible reasons for limited findings. Future legacy intervention research is needed using qualitative and quantitative methods, as well as child and parent reports, to determine how such services may improve dimensions of QOL for pediatric palliative care populations. ClinicalTrials.gov number NCT04059393.
Identifier
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<a href="http://doi.org/10.1089/jpm.2020.0139" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0139</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2021 Special Edition - Oncology
Akard TF
Dietrich MS
Friedman DL
Gerhardt CA
Gilmer MJ
Hendricks-Ferguson V
Hinds PS
Journal of Palliative Medicine
Oncology
Rhoten B
Wray S
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1089/jayao.2021.0004" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jayao.2021.0004</a>
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Title
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A Comparison of Young Adults With and Without Cancer in Concurrent Hospice Care: Implications for Transitioning to Adult Health Care
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Journal of Adolescent and Young Adult Oncology
Date
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2022
Subject
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Oncology
Creator
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Mooney-Doyle K; Keim-Malpass J; Svynarenko R; Lindley LC
Description
An account of the resource
Purpose: Concurrent hospice care provides important end-of-life care for youth under 21 years. Those nearing 21 years must decide whether to shift to adult hospice or leave hospice for life-prolonging care. This decision may be challenging for young adults with cancer, given the intensity of oncology care. Yet, little is known about their needs. We compared young adults with and without cancer in concurrent hospice care. Methods: Retrospective comparative design used data from 2011 to 2013 U.S. Medicaid data files. Decedents were included if they were 20 years of age, enrolled in Medicaid hospice care, and used nonhospice medical services on the same day as hospice care based on their Medicaid claims activity dates. Results: Among 226 decedents, 21% had cancer; more than half were female (60.6%), Caucasian (53.5%), non-Hispanic (77.4%), urban dwelling (58%), and had mental/behavioral disorder (53%). Young adults with cancer were more often non-Caucasian (68.7% vs. 40.4%), technology dependent (47.9% vs. 24.2%), had comorbidities (83.3% vs. 30.3%), and lived in rural (58.3% vs. 37.6%), southern (41.7% vs. 20.8%) areas versus peers without cancer. Those with cancer had significantly fewer live discharges from hospice (5.7 vs. 17.3) and sought treatment for symptoms more often from nonhospice providers (35.4% vs. 14.0%). Conclusions: Young adults in concurrent hospice experience medical complexity, even at end-of-life. Understanding care accessed at 20 years helps providers guide young adults and families considering options in adult-focused care. Clinical and demographic differences among those with and without cancer in concurrent care highlight needs for research exploring racial and geographic equity.
Identifier
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<a href="http://doi.org/10.1089/jayao.2021.0004" target="_blank" rel="noreferrer noopener">10.1089/jayao.2021.0004</a>
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2021 Special Edition - Oncology
2022
Journal Of Adolescent And Young Adult Oncology
Keim-Malpass J
Lindley LC
Mooney-Doyle K
Oncology
Svynarenko R
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1002/pon.5601" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pon.5601</a>
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Title
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A Quest for Meaning: A Qualitative Exploration among Children with Advanced Cancer and Their Parents
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Psycho-Oncology
Date
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2021
Subject
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Oncology
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Schaefer MR; Kenney AE; Himelhoch AC; Howard Sharp KM; Humphrey L; Olshefski R; Young-Saleme T; Gerhardt CA
Description
An account of the resource
OBJECTIVE: Meaning-making may assist individuals in adaptation to stressful life events, particularly bereavement. However, few studies have examined meaning-making among pediatric populations with advanced illness to understand how this process unfolds before the child's death. This study explores meaning-making pre-bereavement among children with advanced cancer and their parents. METHODS: As part of a larger study examining shared decision-making near the end of life, 24 children with advanced cancer and/or high-risk cancer, 26 mothers, and 11 fathers participated in individual, semi-structured interviews. Analyses focused on questions regarding meaning-making. Four coders analyzed the data via directed content analysis. RESULTS: Three major meaning-making themes emerged: (1) sense-making (i.e., unknown, no sense/meaning, religious/spiritual explanations, scientific explanations), (2) benefit-finding, and (3) purpose/legacy. Some stated they were unable to make sense of the diagnosis, because there was no reason, they were not there yet, or they were dealing with the situation and moving forward. Others reported finding meaning through spiritual and scientific explanations. Many identified benefits related to the child's illness, such as personal growth and stronger relationships. Some parents expressed their purpose in life was to live for their children, while others shared their child's legacy as a way to find meaning. CONCLUSIONS: Our findings highlight the struggle children and parents often face when attempting to make sense of the child's advanced or high-risk illness. Clinicians might consider if meaning-centered interventions designed for use in adults at the end of life and bereaved parents may be helpful for children with advanced or high-risk cancer and their parents.
Identifier
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<a href="http://doi.org/10.1002/pon.5601" target="_blank" rel="noreferrer noopener">10.1002/pon.5601</a>
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2021
2021 Special Edition - Oncology
Gerhardt CA
Himelhoch AC
Howard Sharp KM
Humphrey L
Kenney AE
Olshefski R
Oncology
Psycho-Oncology
Schaefer MR
Young-Saleme T
-
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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/10.1186/s12904-021-00776-5" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-021-00776-5</a>
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Current Status of Intensive End-Of-Life Care in Children with Hematologic Malignancy: A Population-Based Study
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BMC Palliative Care
Date
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2021
Subject
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Quality of life; Mechanical ventilation; Blood transfusion; Cardiopulmonary resuscitation; Extra-corporeal membrane oxygenation; ICU admission; Intravenous chemotherapy
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Yotani N; Shinjo D; Kato M; Matsumoto K; Fushimi K; Kizawa Y
Description
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BACKGROUND: Adult patients with hematologic malignancies are less likely to receive palliative care and more likely to accept intensive anti-cancer treatments until end-of-life than those with solid tumors, but limited data are available regarding the quality of end-of-life care (EOLC) for children with hematologic malignancies. To improve the quality of EOLC for children with hematologic malignancies, the aims of this study were (i) to compare intensive EOLC between children with hematologic malignancies and those with solid tumors; and (ii) to describe factors associated with intensive EOLC in children with hematologic malignancies. METHODS: We retrospectively reviewed 0- to 18-year-old patients with cancer, who died in hospital between April 2012 and March 2016 in Japan using the Diagnosis Procedure Combination per-diem payment system. Indicators of intensive inpatient EOLC were defined as intensive care unit admission, cardiopulmonary resuscitation (CPR), intubation and/or mechanical ventilation, hemodialysis, or extra-corporeal membrane oxygenation in the last 30 days of life, or intravenous chemotherapy in the last 14 days. We determined factors associated with intensive EOLC using regression models. Data regarding use of blood transfusion were also obtained from the database. RESULTS: Among 1199 patients, 433 (36%) had hematological malignancies. Children with hematologic malignancies were significantly more likely than those with solid tumors to have intubation and/or mechanical ventilation (37.9% vs. 23.5%), intensive care unit admission (21.9% vs. 7.2%), CPR (14.5% vs. 7.7%), hemodialysis (13.2% vs. 3.1%) or extra-corporeal membrane oxygenation (2.5% vs. 0.4%) in their last 30 days, or intravenous chemotherapy (47.8% vs. 18.4%; all P < .01) within their last 14 days of life. Over 90% of children with hematological malignancies received a blood transfusion within the last 7 days of life. For hematological malignancies, age under 5 years was associated with CPR and ≥ 2 intensive EOLC indicators. Longer hospital stays had decreased odds of ≥ 2 intensive EOLC indicators. CONCLUSION: Children with hematologic malignancies are more likely to receive intensive EOLC compared to those with solid tumors. A younger age and shorter hospital stay might be associated with intensive EOLC in children with hematologic malignancies.
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<a href="http://doi.org/10.1186/s12904-021-00776-5" target="_blank" rel="noreferrer noopener">10.1186/s12904-021-00776-5</a>
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2021
2021 Special Edition - Oncology
Blood Transfusion
BMC Palliative Care
Cardiopulmonary Resuscitation
Extra-corporeal membrane oxygenation
Fushimi K
ICU admission
Intravenous chemotherapy
Kato M
Kizawa Y
Matsumoto K
Mechanical Ventilation
Quality Of Life
Shinjo D
Yotani N
-
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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.2021.06.008" 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
Publisher
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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
Creator
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Walter JK; Hill DL; Schall TE; Szymczak JE; Parikh S; DiDomenico C; Carroll KW; Nye RT; Feudtner C
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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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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1111/ecc.13388" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/ecc.13388</a>
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Title
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Experiences and Needs of Parents of Palliative Paediatric Oncology Patients: A Meta-Synthesis
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European Journal of Cancer Care
Date
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2020
Subject
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child; cancer; parents; palliative care; end-of-life; paediatric
Creator
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Tan AJN; Tiew LH; Shorey S
Description
An account of the resource
INTRODUCTION: Despite palliative care being offered to paediatric cancer patients, it has limited utilisation and often excludes parental support. Therefore, this review aims to consolidate evidence regarding experiences and needs of parents of end-of-life palliative paediatric oncology patients. METHODS: Six electronic databases were searched as follows: CINAHL, The Cochrane Library, Embase, PubMed, Scopus and PsycINFO. Included studies were appraised using the Critical Appraisal Skills Programme Checklist. They were then analysed using a two-step approach comprising firstly meta-summaries followed by meta-synthesis for generating fresh insights to the topic. RESULTS: Thirteen studies were included. Three themes emerged as follows: (1) normalising the pain; (2) failure as a parent; and (3) importance of communication and social support. Parental experiences included moving on despite the pain and harbouring hopes for their children. However, parents felt immense guilt and a sense of failure in carrying out their parental roles. Effective communication with healthcare providers, availability of family support and religion were necessary to help them cope. CONCLUSIONS: Given the emotional challenges faced by parents, healthcare policies and practices should be revised to include parental support in paediatric palliative care services. Future healthcare communication trainings should consider parental need for sensitivity in communication, empathy and kindness from healthcare professionals.
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<a href="http://doi.org/10.1111/ecc.13388" target="_blank" rel="noreferrer noopener">10.1111/ecc.13388</a>
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2020
2021 Special Edition - Oncology
Cancer
Child
end-of-life
European Journal Of Cancer Care
Paediatric
Palliative Care
Parents
Shorey S
Tan AJN
Tiew LH
-
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Title
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2021 Special Edition 2 - Oncology
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2020-002722" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjspcare-2020-002722</a>
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Title
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Paediatric Relapsed Acute Leukaemia: Curative Intent Chemotherapy Improves Quality Of Life
Publisher
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BMJ Supportive and Palliative Care
Date
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2021
Subject
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quality of life; survivorship; paediatrics; supportive care; symptoms and symptom management; leukaemia
Creator
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Salaverria C; Plenert E; Vasquez R; Fuentes-Alabi S; Tomlinson GA; Sung L
Description
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OBJECTIVES: Paediatric patients with leukaemia with relapse or induction failure have poor prognosis. Anticipated quality of life (QoL) is important in treatment decision making. The objective was to determine if curative intent at relapse or induction failure, when compared with palliative intent, was associated with child's physical health, pain or general fatigue and parents' QoL over time among patients with paediatric leukaemia in El Salvador. METHODS: This was a prospective observational cohort study. Children 2-18 years with acute leukaemia at first relapse or induction failure were eligible. Assessments occurred every 2 months for up to 2 years using validated proxy report and self-report scales, where guardians were the primary respondents. Initial curative or palliative intent was categorised at enrolment by physicians. The impact of initial intent on QoL was assessed using linear mixed effects models and interaction between QoL and time. RESULTS: Of the 60 families enrolled, initial treatment intent was curative in 31 (51.7%) and palliative in 29 (48.3%). During the 2-year observation period, 44 children died. Initial curative intent significantly improved child's physical health (estimate=8.4, 95% CI 5.1 to 11.6), pain (estimate=5.4, 95% CI 1.5 to 9.2) and fatigue (estimate=6.6, 95% CI 3.2 to 9.9) compared with palliative intent, but not parents' QoL (estimate=1.0, 95% CI -0.8 to 2.8). CONCLUSIONS: Among paediatric patients with acute leukaemia at relapse or induction failure, initial curative intent treatment plan was associated with better physical health, pain and fatigue when compared with palliative intent. A curative approach may be a reasonable option for patients with acute leukaemia even when prognosis is poor.
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<a href="http://doi.org/10.1136/bmjspcare-2020-002722" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2020-002722</a>
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2021
2021 Special Edition - Oncology
BMJ Supportive and Palliative Care
Fuentes-Alabi S
leukaemia
Paediatrics
Plenert E
Quality Of Life
Salaverria C
Sung L
Supportive Care
Survivorship
symptoms and symptom management
Tomlinson GA
Vasquez R
-
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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/10.1002/pbc.28837" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.28837</a>
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Title
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Patterns of Medication Use at End of Life by Pediatric Inpatients with Cancer
Publisher
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Pediatric Blood and Cancer
Date
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2020
Subject
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end of life; medication use; pediatric cancer care
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Prozora S; Shabanova V; Ananth P; Pashankar F; Kupfer GM; Massaro SA; Davidoff AJ
Description
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OBJECTIVE: To describe medication utilization patterns by pediatric inpatients with cancer during their last week of life. METHODS: This retrospective study used data from the Vizient Clinical Database/Resource Manager, a national compilation of clinical and resource use data from over 100 academic medical centers and affiliates. Patients (0-21 years) with malignancy who died during hospitalization (2010-2017) were included (N = 1659). Medications were categorized as opioid, benzodiazepine, gastrointestinal related, chemotherapy, anti-infectives, or vasopressors. Exposure to each group was ascertained for all patients at 1 week and 1 day prior to death. Factors associated with exposure were examined using generalized estimating equations, and summarized using adjusted odds ratios (aORs). RESULTS: Over the last week of life, there was increased use of opioids (76% to 82%, aOR = 1.55, P < .001) and benzodiazepines (53% to 66%, aOR = 1.36, P = .02), while gastrointestinal-related medication use decreased (92% to 89%, aOR = 0.69, P = .001). Patients had decreased exposure to chemotherapy (10% to 5%, aOR = 0.46, P < .001) and anti-infectives (82% to 73%, aOR = 0.41, P = .002). Vasopressor use increased as death approached (15% to 28%, aOR = 1.67, P = .04). Factors significantly associated with exposure varied with medication category, and included age, race, length of stay, malignancy type, death in the intensive care unit, history of hematopoietic stem cell transplant, and do-not-resuscitate status. CONCLUSION: During the week preceding death, administration of symptom management medications increased for children with cancer, but use was not universal. Potentially life-sustaining medications were often continued. Variability in utilization suggests differences in provider/family decision making that warrant further study to develop an evidence-based approach to end-of-life care.
Identifier
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<a href="http://doi.org/10.1002/pbc.28837" target="_blank" rel="noreferrer noopener">10.1002/pbc.28837</a>
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2020
2021 Special Edition - Oncology
Ananth P
Davidoff AJ
End Of Life
Kupfer GM
Massaro SA
medication use
Pashankar F
Pediatric Blood & Cancer
pediatric cancer care
Prozora S
Shabanova V
-
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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/10.1089/jayao.2019.0040" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jayao.2019.0040</a>
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Documentation of Palliative and End-of-Life Care Process Measures Among Young Adults Who Died of Cancer: A Natural Language Processing Approach
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Journal of Adolescent and Young Adult Oncology
Date
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2020
Subject
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Oncology
Creator
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Poort H; Zupanc SN; Leiter RE; Wright AA; Lindvall C
Description
An account of the resource
Few studies have investigated palliative and end-of-life care processes among young adults (YAs), aged 18-34 years, who died of cancer. This retrospective study used a natural language processing algorithm to identify documentation and timing of four process measures in YA cancer decedents' medical records: palliative care involvement, discussions of goals of care, code status, and hospice. Among 2878 YAs, 138 had a recorded date of death. In this group, 54.3% had at least one process measure documented early (31-180 days before death), 18.0% had only late documentation of process measures (0-30 days), and 27.5% had none documented.
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<a href="http://doi.org/10.1089/jayao.2019.0040" target="_blank" rel="noreferrer noopener">10.1089/jayao.2019.0040</a>
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2020
2021 Special Edition - Oncology
Journal Of Adolescent And Young Adult Oncology
Leiter RE
Lindvall C
Oncology
Poort H
Wright AA
Zupanc SN
-
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2021 Special Edition 2 - Oncology
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1017/s1478951520001212" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/s1478951520001212</a>
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Title
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Parents' Views on What Facilitated or Complicated Their Grief after Losing A Child to Cancer
Publisher
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Palliative and Supportive Care
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; Pediatric oncology; Parents; Coping
Creator
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Pohlkamp L; Sveen J; Kreicbergs U; Lövgren M
Description
An account of the resource
OBJECTIVES: The loss of a child is a devastating event, and bereaved parents often suffer intense and long-lasting grief reactions and are at risk for psychological symptoms. More knowledge about how parents cope with grief may improve the support to bereaved parents. This study, therefore, aimed to explore parents' views on what facilitated or complicated their grief coping after losing a child to cancer. METHODS: This study was derived from a nationwide postal survey. Cancer-bereaved parents (n = 161) provided written responses to two open-ended questions: "Is there anything that has helped you cope with your grief after your child's death?" and "Is there anything that made it difficult for you to cope with your grief?" Content analysis was used to analyze the responses. RESULTS: Parents reported that a supportive social network of family and friends, and having remaining children, facilitated their coping with grief. Meeting professional counselors and meeting other bereaved parents, connecting to memories of the deceased child in various contexts, including school and pediatric care settings, were also reported facilitating grief coping. Parents stated that the following experiences had complicated grief coping: additional losses in their family or social network; not being able to share emotions with their partner; when they perceived that friends, relatives, or colleagues lacked empathy or patience; when they felt challenging demands from employers at a too early stage. SIGNIFICANCE OF RESULTS: This study contributes to the understanding of parents' grief experiences and what has facilitated or complicated their coping with grief, which can help health care professionals and others improve bereavement support services.
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<a href="http://doi.org/10.1017/s1478951520001212" target="_blank" rel="noreferrer noopener">10.1017/s1478951520001212</a>
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2020
2021 Special Edition - Oncology
Bereavement
Coping
Grief
Kreicbergs U
Lövgren M
Palliative & Supportive Care
Parents
Pediatric Oncology
Pohlkamp L
Sveen 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/10.1111/apa.15415" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/apa.15415</a>
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Title
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Customised Pediatric Palliative Care: Integrating Oncological and Palliative Care Priorities
Publisher
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Acta Paediatrica
Date
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2020
Subject
The topic of the resource
Oncology, intensive care unit; child; human; controlled study; female; hospice; male; cohort analysis; article; prognosis; cancer therapy; clinical article; human tissue; cancer patient; cancer prognosis; central nervous system tumor; phase 1 clinical trial (topic); Childhood cancer; cancer staging; Palliative therapy; sarcoma
Creator
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Podda M; Schiavello E; Visconti G; Clerici CA; Armiraglio M; Casiraghi G; Ambroset S; Grossi A; Rizzi B; Lonati G; Massimino M
Description
An account of the resource
Aim: To describe the experience involving the early introduction of palliative care (PC) in oncological patients treated within the paediatric oncology unit of the Istituto Nazionale Tumori of Milan and compare this cohort with a cohort of patients resident in the same area treated before the introduction of early palliative care. Method(s): A virtual team was assembled in 2015. The PC providers operate outside the hospital. Conference calls were scheduled to discuss patients' problems. This sample was compared with the clinical records of patients residing in the same area who died between 2009 and 2014. Result(s): Between January 2015 and April 2019, 41 patients residing in the Milan area mainly with CNS tumours or sarcomas were referred to the team. Comparing the results with the previous cohort, there was a rise in the number of patients dying at home or in a hospice and the duration of PC increased over time. From 2015, none of the patients died in an intensive care unit. Conclusion(s): Patients managed by the virtual team were able to continue their cancer treatments, take part in Phase I trials and receive PC. All patients with a poor prognosis should have PC at an early stage. Copyright © 2020 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd
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<a href="http://doi.org/10.1111/apa.15415" target="_blank" rel="noreferrer noopener">10.1111/apa.15415</a>
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2020
2021 Special Edition - Oncology
Acta Paediatrica
Ambroset S
Armiraglio M
Casiraghi G
Clerici CA
Grossi A
Lonati G
Massimino M
Oncology
Podda M
Rizzi B
Schiavello E
Visconti G
-
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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/10.1136/bmjspcare-2021-003031" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjspcare-2021-003031</a>
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Children and Adolescent Solid Tumours and High-Intensity End-Of-Life Care: What Can Be Done to Reduce Acute Care Admissions?
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BMJ Supportive and Palliative Care
Date
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2021
Subject
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terminal care; quality of life; paediatrics; supportive care; brain
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Podda MG; Schiavello E; Clerici CA; Luksch R; Terenziani M; Ferrari A; Casanova M; Spreafico F; Meazza C; Biassoni V; Chiaravalli S; Puma N; Bergamaschi L; Gattuso G; Sironi G; Nigro O; Massimino M
Description
An account of the resource
Despite improvements in survival, cancer remains the leading cause of non-accidental death in children and adolescents, who risk receiving high-intensity end-of-life (HI-EOL) care. OBJECTIVE: To analyse treatments for relapses (particularly in the last weeks of life), assess their impact on the EOL, identify patients most likely to receive HI-EOL care and examine whether palliative care services can contain the intensity of EOL care. METHODS: This retrospective study involved patients treated at the paediatric oncology unit of the Istituto Nazionale Tumori in Milan who died between 2018 and 2020. The primary outcome was HI-EOL care, defined as: ≥1 session of intravenous chemotherapy <14 days before death; ≥1 hospitalisation in intensive care in the last 30 days of life and ≥1 emergency room admission in the last 30 days of life. RESULTS: The study concerned 68 patients, and 17 had HI-EOL care. Patients given specific in-hospital treatments in the last 14 days of their life more frequently died in hospital. Those given aggressive EOL care were less likely to die at home or in the hospice. Patients with central nervous system (CNS) tumours were more likely to have treatments requiring hospitalisation, and to receive HI-EOL care. CONCLUSION: These results underscore the importance of considering specific treatments at the EOL with caution. Treatments should be administered at home whenever possible.The early activation of palliative care, especially for fragile and complicated patients like those with CNS cancers, could help families cope with the many problems they face.
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<a href="http://doi.org/10.1136/bmjspcare-2021-003031" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2021-003031</a>
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2021
2021 Special Edition - Oncology
Bergamaschi L
Biassoni V
BMJ Supportive and Palliative Care
Brain
Casanova M
Chiaravalli S
Clerici CA
Ferrari A
Gattuso G
Luksch R
Massimino M
Meazza C
Nigro O
Paediatrics
Podda MG
Puma N
Quality Of Life
Schiavello E
Sironi G
Spreafico F
Supportive Care
Terenziani M
Terminal Care
-
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1136/bmjopen-2020-046284" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjopen-2020-046284</a>
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Parent Values and Preferences Underpinning Treatment Decision Making In Poor Prognosis Childhood Cancer: A Scoping Review Protocol
Publisher
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BMJ Open
Date
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2021
Subject
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Oncology
Creator
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Pearson H; Gibson F; Darlington ASE
Description
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Introduction Parents of a child with cancer want to be involved in making treatment decisions for their child. Underpinning and informing these decisions are parents' individual values and preferences. Parents of a child who has a poor prognosis cancer and who subsequently dies can experience decisional regret. To support parents, and potentially reduce decisional regret, identifying the values and preferences of parents who are making these treatment decisions may enhance the support that can be provided by healthcare professionals. An increased understanding will support future work in this area and identify research gaps that could strengthen support strategies in clinical practice. The aim of this scoping review is to explore parent values and preferences underpinning treatment decision making when their child is receiving cancer-directed therapy for a poor prognosis cancer. Methods and analysis The Joanna Briggs Institute scoping review methodology will be followed. An initial database search of CINHAL and MEDLINE will be conducted to analyse the keywords using subject headings and Medical Subject Headings terms. Articles will be initially screened on title and abstract. The reference and citation lists of the full-text articles to be included will be searched using Web of Science. Articles will be independently reviewed by two reviewers and any discrepancies discussed with a third reviewer. Data extracted will be presented in tabular, diagrams and descriptive summaries. Ethics and dissemination Ethical approval is not required for this scoping review. This review will inform further research with parents to understand their values and preferences when making repeated treatment decisions when their child has a poor prognosis cancer. All outputs will be disseminated through peer-reviewed publications and conference presentations. This scoping review is registered on the Open Science Framework (https://osf.io/n7j9f). Copyright ©
Identifier
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<a href="http://doi.org/10.1136/bmjopen-2020-046284" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2020-046284</a>
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2021
2021 Special Edition - Oncology
Bmj Open
Darlington ASE
Gibson F
Oncology
Pearson H
-
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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/10.1097/MPH.0000000000002276" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/MPH.0000000000002276</a>
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Title
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Attitudes and Practices of Pediatric Oncologists Regarding Palliative Care Consultation for Pediatric Oncology Patients
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Journal of Pediatric Hematology/Oncology
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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Parisio KN; Levy CD; Lewis AM; Schultz CL
Description
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Objective: We sought to describe palliative care services available to children with cancer along with pediatric oncologists' current and ideal practices of palliative care involvement in children with cancer. Design(s): A novel survey tool was administered via REDCap to attending pediatric oncologists in the United States. The survey remained open from June to September 2020. Result(s): A total of 265 survey responses were evaluated. Most respondents endorsed that palliative care should "always"be consulted for the following scenarios: new diagnosis of advanced/metastatic disease (53%), uncontrolled symptoms (65%), bone marrow transplant (55%), and relapsed/refractory disease (73%). For those same scenarios, the majority noted the current practice was to "sometimes"or "usually"consult. Most respondents (92.6%) felt that palliative care should be consulted more frequently than they were currently being consulted. Conclusion(s): Compared with the current practice for various pediatric oncology departments, palliative care was not consulted as often as oncologists desired. While barriers to palliative care consultation are outlined in the literature, exploration of how to address them as well as identification of barriers specific to oncologists who are in favor of palliative care consultation are not well-described. Further research exploring these specific barriers is necessary to understand the disconnect between oncologists' attitudes and palliative care consultation. Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.
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<a href="http://doi.org/10.1097/MPH.0000000000002276" target="_blank" rel="noreferrer noopener">10.1097/MPH.0000000000002276</a>
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2021
2021 Special Edition - Oncology
Journal Of Pediatric Hematology/oncology
Levy CD
Lewis AM
Oncology
Parisio KN
Schultz CL
-
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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/10.1089/jayao.2020.0149" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jayao.2020.0149</a>
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Advance Care Planning for Adolescents and Young Adults with Cancer: A Retrospective Case Note Audit from a Regional Specialist Center in the United Kingdom
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Journal of Adolescent and Young Adult Oncology
Date
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2020
Subject
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Oncology
Creator
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Murray H; Pettitt N; Tomas J
Description
An account of the resource
The extent of Advance Care Planning (ACP) among Adolescent and Young Adult (AYA) cancer patients is not well characterized. This retrospective case note audit scrutinized the records of all AYA patients (aged 16-25 years) known to a regional specialist center in the United Kingdom, and who died between 2013 and 2019, for evidence of ACP. Eighty-four patients were included. ACP was identified for 67% of patients. Sixty-four percent expressed a preferred place of death; actual place of death reflected this in 65% of cases. Creation of a bespoke document may help to standardize ACP and improve end-of-life care.
Identifier
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<a href="http://doi.org/10.1089/jayao.2020.0149" target="_blank" rel="noreferrer noopener">10.1089/jayao.2020.0149</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
Journal Of Adolescent And Young Adult Oncology
Murray H
Oncology
Pettitt N
Tomas J
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1136/bmjopen-2020-045226" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjopen-2020-045226</a>
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MyPal-Child Study Protocol: An Observational Prospective Clinical Feasibility Study of the MyPal ePRO-Based Early Palliative Care Digital System in Paediatric Oncology Patients
Publisher
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BMJ Open
Date
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2021
Subject
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paediatric oncology; paediatric palliative care; health informatics
Creator
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Meyerheim M; Karamanidou C; Payne S; Garani-Papadatos T; Sander A; Downing J; Stamatopoulos K; Ling J; Payne C; Scarfò L; Lokaj P; Maramis C; Graf N
Description
An account of the resource
INTRODUCTION: Electronic patient-reported outcomes (ePROs) have tremendous potential to optimise palliative and supportive care for children with cancer, their families and healthcare providers. Particularly, these children and their families are subjected to multiple strains caused by the disease and its treatment. The MyPal digital health platform is designed to address these complex demands by offering pursuant ePRO-based functionalities via two mobile applications, one developed for children and the other for their parents. METHODS AND ANALYSIS: In this observational prospective feasibility study, 100 paediatric oncology patients aged between 6 and 17 years and at least one of their parents/legal guardians will be recruited at three clinical sites in two European countries (Germany and Czech Republic). They will use the mobile applications which are part of the novel digital health platform. During a 6-month study period, participants will complete various ePROs via the applications addressing quality of life, satisfaction with care and impact of the disease on the family at monthly intervals. Additionally, priority-based symptom reporting is integrated into a serious game for children. Outcomes that will be assessed concern the feasibility and the evaluation of the newly designed digital health platform to contribute to the evidence base of clinical ePRO use in paediatric oncology and palliative care process. ETHICS AND DISSEMINATION: The MyPal-Child study obtained ethical approval from the Ethics Committee responsible for the University of Saarland, that is, the Ärztekammer des Saarlandes, the Ethics Committee of the Medical School Hannover and the Ethics Committee of the University of Brno. Study results will be disseminated through scientific publications, presentations at international conferences, congresses and a final report to the European Commission. General publicly accessible information can be found on the project website (www.mypal-project.eu) and social media. TRIAL REGISTRATION NUMBERS: U1111-1251-0043, DRKS00021458, NCT04381221.
Identifier
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<a href="http://doi.org/10.1136/bmjopen-2020-045226" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2020-045226</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2021 Special Edition - Oncology
Bmj Open
Downing J
Garani-Papadatos T
Graf N
health informatics
Karamanidou C
Ling J
Lokaj P
Maramis C
Meyerheim M
Paediatric oncology
paediatric palliative care
Payne C
Payne S
Sander A
Scarfò L
Stamatopoulos K
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1111/papr.12965" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/papr.12965</a>
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Barriers and Adherence to Pain Management in Advanced Cancer Patients
Publisher
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Pain Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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palliative care; barriers; cancer pain; opioids; adherence to medication
Creator
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Mercadante S; Adile C; Tirelli W; Ferrera P; Penco I; Casuccio A
Description
An account of the resource
AIM: To assess patients' barriers to pain management and analgesic medication adherence in advanced cancer patients METHODS: Prospective cross-sectional study in advanced cancer patients receiving chronic opioid therapy. Age, gender, cancer diagnosis, Karnofsky level, and educational status were recorded. collected. These included age, gender, cancer diagnosis, Karnofsky level, and educational status. The Brief Pain Inventory (BPI), the Edmonton Symptom Assessment Scale (ESAS), the Memorial Delirium Assessment Scale (MDAS), the Barriers Questionnaire II (BQ-II), medication Adherence Rating Scale (MARS), and Hospital Anxiety and Depression Scale (HADS) were measured. RESULTS: One-hundred-thirteen patients were analyzed. The mean age was 68 (± 13) years and 59 (52%) were males. The mean Karnofsky status was 51.4 (SD 11.5). The mean value of BQ-II items was 1.77 (SD 0.7). BQ-II was independently related with HADS-D (p=0.033), and with total HADS (p=0.049). Negative side-effects and attitudes to psychotropic medication globally prevailed among MARS items. These items were independently associated with gender (P=0.030), pain (; p=0.003), and depression (p= 0.047). CONCLUSION: Barriers to pain management were mild. Psychological factors such as depression were the main factor associated with barriers. Poor adherence to analgesic medication was mostly manifested as negative side-effects and attitudes to psychotropic medication, was more frequent observed in females and was associated with ESAS items pain and depression.
Identifier
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<a href="http://doi.org/10.1111/papr.12965" target="_blank" rel="noreferrer noopener">10.1111/papr.12965</a>
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2020
2021 Special Edition - Oncology
adherence to medication
Adile C
Barriers
cancer pain
Casuccio A
Ferrera P
Mercadante S
Opioids
Pain Practice
Palliative Care
Penco I
Tirelli W
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2021.21888" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1001/jamanetworkopen.2021.21888</a>
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Patient, Family, and Clinician Perspectives on End-of-Life Care Quality Domains and Candidate Indicators for Adolescents and Young Adults with Cancer
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JAMA Network Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Oncology
Creator
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Mack JW; Fisher L; Kushi L; Chao CR; Vega B; Rodrigues G; Josephs I; Brock KE; Buchanan S; Casperson M; Cooper RM; Fasciano KM; Kolevska T; Lakin JR; Lefebvre A; Schwartz CM; Shalman DM; Wall CB; Wiener L; Altschuler A
Description
An account of the resource
Importance: End-of-life care quality indicators specific to adolescents and young adults (AYAs) aged 12 to 39 years with cancer have not been developed. Objective(s): To identify priority domains for end-of-life care from the perspectives of AYAs, family caregivers, and clinicians, and to propose candidate quality indicators reflecting priorities. Design, Setting, and Participant(s): This qualitative study was conducted from December 6, 2018, to January 5, 2021, with no additional follow-up. In-depth interviews were conducted with patients, family caregivers, and clinicians and included a content analysis of resulting transcripts. A multidisciplinary advisory group translated priorities into proposed quality indicators. Interviews were conducted at the Dana-Farber Cancer Institute, Kaiser Permanente Northern California, Kaiser Permanente Southern California, and an AYA cancer support community (lacunaloft.org). Participants included 23 AYAs, 28 caregivers, and 29 clinicians. Exposure: Stage IV or recurrent cancer. Main Outcomes and Measures: Care priorities. Result(s): Interviews were conducted with 23 patients (mean [SD] age, 29.3 [7.3] years; 12 men [52%]; 18 White participants [78%]), 28 family caregivers (23 women [82%]; 14 White participants [50%]), and 29 clinicians (20 women [69%]; 13 White participants [45%]). Caregivers included 22 parents (79%), 5 spouses or partners (18%), and 1 other family member (4%); the 29 clinicians included 15 physicians (52%), 6 nurses or nurse practitioners (21%), and 8 social workers or psychologists (28%). Interviews identified 7 end-of-life priority domains: attention to physical symptoms, attention to quality of life, psychosocial and spiritual care, communication and decision-making, relationships with clinicians, care and treatment, and independence. Themes were consistent across the AYA age range and participant type. Although some domains were represented in quality indicators developed for adults, unique domains were identified, as well as AYA-specific manifestations of existing domains. For example, quality of life included global quality of life; attainment of life goals, legacy, and meaning; support of personal relationships; and normalcy. Within communication and decision-making, domains included communication early in the disease course, addressing prognosis and what to expect at the end of life, and opportunity for AYAs to hold desired roles in decision-making. Care and treatment domains relevant to cancer therapy, use of life-prolonging measures, and location of death emphasized the need for preference sensitivity rather than a standard path. This finding differs from existing adult indicators that propose that late-life chemotherapy, intensive measures, and hospital death should be rare. Conclusions and Relevance: The findings of this qualitative study suggest that AYAs with cancer have priorities for care at the end of life that are not fully encompassed in existing indicators for adults. Use of new indicators for this young population may better reflect patient- and family-centered experiences of quality care.. Copyright © 2021 American Medical Association. All rights reserved.
Identifier
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<a href="http://doi.org/10.1001/jamanetworkopen.2021.21888" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2021.21888</a>
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2021
2021 Special Edition - Oncology
Altschuler A
Brock KE
Buchanan S
Casperson M
Chao CR
Cooper RM
Fasciano KM
Fisher L
JAMA Network Open
Josephs I
Kolevska T
Kushi L
Lakin JR
Lefebvre A
Mack JW
Oncology
Rodrigues G
Schwartz CM
Shalman DM
Vega B
Wall CB
Wiener L
-
Dublin Core
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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/10.6004/jnccn.2020.7645" target="_blank" rel="noreferrer noopener"> http://doi.org/10.6004/jnccn.2020.7645</a>
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Barriers to Optimal End-of-Life Care for Adolescents and Young Adults With Cancer: Bereaved Caregiver Perspectives
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Journal of the National Comprehensive Cancer Network
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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Mack JW; Currie ER; Martello V; Gittzus J; Isack A; Fisher L; Lindley LC; Gilbertson-White S; Roeland E; Bakitas M
Description
An account of the resource
BACKGROUND: Adolescents and young adults (AYAs; aged 15-39 years) with cancer frequently receive intensive measures at the end of life (EoL), but the perspectives of AYAs and their family members on barriers to optimal EoL care are not well understood. METHOD(S): We conducted qualitative interviews with 28 bereaved caregivers of AYAs with cancer who died in 2013 through 2016 after receiving treatment at 1 of 3 sites (University of Alabama at Birmingham, University of Iowa, or University of California San Diego). Interviews focused on ways that EoL care could have better met the needs of the AYAs. Content analysis was performed to identify relevant themes. RESULT(S): Most participating caregivers were White and female, and nearly half had graduated from college. A total of 46% of AYAs were insured by Medicaid or other public insurance; 61% used hospice, 46% used palliative care, and 43% died at home. Caregivers noted 3 main barriers to optimal EoL care: (1) delayed or absent communication about prognosis, which in turn delayed care focused on comfort and quality of life; (2) inadequate emotional support of AYAs and caregivers, many of whom experienced distress and difficulty accepting the poor prognosis; and (3) a lack of home care models that would allow concurrent life-prolonging and palliative therapies, and consequently suboptimal supported goals of AYAs to live as long and as well as possible. Delayed or absent prognosis communication created lingering regret among some family caregivers, who lost the opportunity to support, comfort, and hold meaningful conversations with their loved ones. CONCLUSION(S): Bereaved family caregivers of AYAs with cancer noted a need for timely prognostic communication, emotional support to enhance acceptance of a poor prognosis, and care delivery models that would support both life-prolonging and palliative goals of care. Work to address these challenges offers the potential to improve the quality of EoL care for young people with cancer.
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<a href="http://doi.org/10.6004/jnccn.2020.7645" target="_blank" rel="noreferrer noopener">10.6004/jnccn.2020.7645</a>
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2021
2021 Special Edition - Oncology
Bakitas M
Currie ER
Fisher L
Gilbertson-White S
Gittzus J
Isack A
Journal Of The National Comprehensive Cancer Network
Lindley LC
Mack JW
Martello V
Oncology
Roeland E
-
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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/10.1002/pbc.28696" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.28696</a>
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Title
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Shared Spiritual Beliefs between Adolescents with Cancer and Their Families
Publisher
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Pediatric Blood and Cancer
Date
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2020
Subject
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quality of life; Adolescent; Adult; Female; Follow-Up Studies; Humans; Male; Prognosis; Decision Making; Longitudinal Studies; Single-Blind Method; Young Adult; Cross-Sectional Studies; Family/psychology; Religion and Medicine; Spirituality; Advance Care Planning/statistics & numerical data; Adolescent Behavior; family; adolescents; cancer; congruence; spirituality; funding from the American Cancer Society to adapt/translate this protocol into; Neoplasms/psychology/therapy; Spanish. There are no other conflicts of interest to disclose.; study from the National Institutes of Health. Maureen E. Lyon is also receiving
Creator
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Livingston J; Cheng YI; Wang J; Tweddle M; Friebert S; Baker JN; Thompkins J; Lyon ME
Description
An account of the resource
BACKGROUND: FAmily CEntered (FACE) Advance Care Planning helps family decision makers to understand and honor patients' preferences for future health care, if patients cannot communicate. Spiritual well-being is a key domain of pediatric oncology care and an integral dimension of pediatric advance care planning. PROCEDURE: As part of four-site randomized controlled trial of FACE for teens with cancer, the functional assessment of chronic illness therapy-spiritual well-being- version 4 (FACIT-Sp-EX-4) was completed independently by 126 adolescents with cancer/family dyads. The prevalence-adjusted and bias-adjusted kappa (PABAK) measured congruence on FACIT-Sp-EX-4. RESULTS: Adolescents (126) had mean age of 16.9 years, were 57% female and 79% White. Religious/spiritual classifications were: Catholic (n = 18), Protestant (n = 76), Mormon (n = 3), none/atheist (n = 22), other (n = 5), and unknown (n = 2). Agreement at item level between spiritual well-being of adolescents and families was assessed. Three items had ≥90% agreement and Excellent PABAK: "I have a reason for living," "I feel loved," "I feel compassion for others in the difficulties they are facing." Three items had <61% agreement and Poor PABAK: "I feel a sense of harmony within myself," "My illness has strengthened my faith or spiritual beliefs," "I feel connected to a higher power (or God)." Dyadic congruence was compared by social-demographics using median one-way analysis. Male family members (median = 72%) were less likely to share spiritual beliefs with their adolescent than female family members (median = 83%), P = .0194. CONCLUSIONS: Family members may not share spiritual beliefs with adolescents and may be unaware of the importance of spiritual well-being for adolescents.
Identifier
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<a href="http://doi.org/10.1002/pbc.28696" target="_blank" rel="noreferrer noopener">10.1002/pbc.28696</a>
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2020
2021 Special Edition - Oncology
Adolescent
Adolescent Behavior
Adolescents
Adult
Advance Care Planning/statistics & Numerical Data
Baker JN
Cancer
Cheng YI
congruence
Cross-sectional Studies
Decision Making
Family
Family/psychology
Female
Follow-up Studies
Friebert S
funding from the American Cancer Society to adapt/translate this protocol into
Humans
Livingston J
Longitudinal Studies
Lyon ME
Male
Neoplasms/psychology/therapy
Pediatric Blood & Cancer
Prognosis
Quality Of Life
Religion and Medicine
Single-Blind Method
Spanish. There are no other conflicts of interest to disclose.
Spirituality
study from the National Institutes of Health. Maureen E. Lyon is also receiving
Thompkins J
Tweddle M
Wang J
Young Adult
-
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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/10.1007/s00520-020-05959-z" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00520-020-05959-z</a>
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Title
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Oncologist Conceptualizations of Pediatric Palliative Care: Challenges and Definitions
Publisher
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Supportive Care in Cancer
Date
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2021
Subject
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Palliative care; Pediatric oncology; Cancer; Qualitative research; Oncology
Creator
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Laronne A; Granek L; Wiener L; Feder-Bubis P; Golan H
Description
An account of the resource
PURPOSE: Pediatric palliative care (PC) is an evolving field and involves a comprehensive approach to care of children with cancer. The goal of this paper was to explore how pediatric oncologists define, interpret, and practice pediatric palliative care in their clinical settings. METHODS: The study used the grounded theory approach to data collection and analysis. Twenty-one pediatric oncologists from six pediatric cancer centers across Israel were interviewed. Data was analyzed using line-by-line coding. RESULTS: The analysis resulted in a four-tiered conceptual model. This model included the following categories: (1) ill-defined concept; (2) philosophies of palliative care; (3) trajectory of palliative care; and (4) palliative care treatment goals. CONCLUSION: The findings illustrate the current conceptualizations of pediatric palliative care among the pediatric oncology community in Israel. The conceptual model documents their understanding of pediatric palliative care as a philosophical approach and the challenges they face in differentiating between palliative care and standard pediatric oncology care. Pediatric palliative care is a highly needed and valued sub-specialty. The findings from this study highlight the importance for its continued development in Israel, as it can reduce the suffering of children and their families. Concurrently, pediatric oncologists need to have more resources and access to explicit knowledge of the conceptual and practical aspects of both primary and specialized pediatric palliative care.
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<a href="http://doi.org/10.1007/s00520-020-05959-z" target="_blank" rel="noreferrer noopener">10.1007/s00520-020-05959-z</a>
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2021
2021 Special Edition - Oncology
Cancer
Feder-Bubis P
Golan H
Granek L
Laronne A
Oncology
Palliative Care
Pediatric Oncology
Qualitative Research
Supportive Care In Cancer
Wiener L
-
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2021 Special Edition 2 - Oncology
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1002/cam4.3862" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/cam4.3862</a>
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Title
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Evaluating Palliative Opportunities in Pediatric Patients with Leukemia and Lymphoma
Publisher
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Cancer Medicine
Date
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2021
Subject
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lymphoma; oncology; pediatric palliative care; end-of-life; leukemia; palliative opportunity
Creator
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Labudde EJ; DeGroote NP; Smith S; Ebelhar J; Allen KE; Castellino SM; Wasilewski-Masker K; Brock KE
Description
An account of the resource
BACKGROUND: Despite favorable prognoses, pediatric patients with hematologic malignancies experience significant challenges that may lead to diminished quality of life or family stress. They are less likely to receive subspecialty palliative care (PC) consultation and often undergo intensive end-of-life (EOL) care. We examined "palliative opportunities," or events when the integration of PC would have the greatest impact, present during a patient's hematologic malignancy course and relevant associations. METHODS: A single-center retrospective review was conducted on patients aged 0-18 years with a hematologic malignancy who died between 1/1/12 and 11/30/17. Demographic, disease, and treatment data were collected. A priori, nine palliative opportunity categories were defined. Descriptive statistics were performed. Palliative opportunities were evaluated over temporal quartiles from diagnosis to death. Timing and rationale of pediatric PC consultation were evaluated. RESULTS: Patients (n = 92) had a median of 5.0 (interquartile range [IQR] 6.0) palliative opportunities, incurring 522 total opportunities, increasing toward the EOL. Number and type of opportunities did not differ by demographics. PC consultation was most common in patients with lymphoid leukemia (50.9%, 28/55) and myeloid leukemia (48.5%, 16/33) versus lymphoma (0%, 0/4, p = 0.14). Forty-four of ninety-two patients (47.8%) received PC consultation a median of 1.8 months (IQR 4.1) prior to death. Receipt of PC was associated with transplant status (p = 0.0018) and a higher number of prior palliative opportunities (p = 0.0005); 70.3% (367/522) of palliative opportunities occurred without PC. CONCLUSION: Patients with hematologic malignancies experience many opportunities warranting PC support. Identifying opportunities for ideal timing of PC involvement may benefit patients with hematologic cancers and their caregivers.
Identifier
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<a href="http://doi.org/10.1002/cam4.3862" target="_blank" rel="noreferrer noopener">10.1002/cam4.3862</a>
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2021
2021 Special Edition - Oncology
Allen KE
Brock KE
Cancer Medicine
Castellino SM
DeGroote NP
Ebelhar J
end-of-life
Labudde EJ
Leukemia
Lymphoma
Oncology
palliative opportunity
Pediatric Palliative Care
Smith S
Wasilewski-Masker K
-
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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/10.1089/jayao.2021.0081" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jayao.2021.0081</a>
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Title
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Evaluating Palliative Opportunities Across the Age Spectrum in Children and Adolescent Patients with Cancer
Publisher
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Journal of Adolescent and Young Adult Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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pediatric palliative care; age; end of life; palliative opportunity
Creator
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Labudde EJ; DeGroote NP; Ebelhar J; Massie AM; Allen KE; Castellino SM; Wasilewski-Masker K; Brock KE
Description
An account of the resource
Purpose: Adolescent patients with cancer experience unique stressors due to their developmental stage, with increased physical, emotional, and social distress. Palliative care (PC) serves an important role in pediatric cancer care. We examined "palliative opportunities," or events during a patient's cancer course where subspecialty PC would be warranted and compared opportunities between adolescents and younger patients. Methods: Patients from a single center, 0-18 years of age at cancer diagnosis, who died from January 1, 2012, to November 30, 2017, were included. In this secondary analysis, patients were divided into cohorts based on age at diagnosis: 0-12 and 13-18 years. Demographic, disease, and treatment data were collected. Descriptive statistics and modeling were performed. Number, type, and timing of palliative opportunities and PC consultation timing and reason were evaluated across cohorts. Results: Of the 296 patients included for analysis, 27.7% were 13-18 years (82/296) at diagnosis. Frequency of palliative opportunities did not differ by age (median 7.0 [interquartile range 4.0 and 10.0] in both cohorts). PC consultation occurred in 36.5% (108/296), with neither rate nor timing differing by age group. PC consultations in adolescents were more often for symptom management (p = 0.0001). Adolescent patients were less likely to have a do-not-resuscitate order placed before death (61.0%, 50/82) compared to younger patients (73.8%, 158/214, p = 0.03). Conclusion: Adolescent patients with cancer did not experience more palliative opportunities than younger patients in this cohort, although they often have challenging psychological, family, and social stressors that were not identified. Incorporating additional palliative opportunities could enhance identification of stress and symptoms in adolescents with cancer such that PC could be timed to meet their needs.
Identifier
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<a href="http://doi.org/10.1089/jayao.2021.0081" target="_blank" rel="noreferrer noopener">10.1089/jayao.2021.0081</a>
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2021
2021 Special Edition - Oncology
Age
Allen KE
Brock KE
Castellino SM
DeGroote NP
Ebelhar J
End Of Life
Journal Of Adolescent And Young Adult Oncology
Labudde EJ
Massie AM
palliative opportunity
Pediatric Palliative Care
Wasilewski-Masker K
-
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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/10.1017/s1478951521000067" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/s1478951521000067</a>
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Title
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End of Life Communication among Caregivers of Children with Cancer: A Qualitative Approach to Understanding Support Desired By Families
Publisher
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Palliative and Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Communication; Caregiver; End of life; Pediatric; Oncology
Creator
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Kenney AE; Bedoya SZ; Gerhardt CA; Young-Saleme T; Wiener L
Description
An account of the resource
OBJECTIVES: Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support among bereaved caregivers of children with cancer. METHODS: Bereaved caregivers were recruited through a closed social media group to complete an online survey providing retrospective reports of end of life communication with their child and preferences for communication support from health-care providers. The sample of 131 participants was mostly female (77.9%; n = 102) with an average age of 49.15 (SD = 8.03) years. Deceased children were of an average age of 12.42 years (SD = 6.01) and nearly 90% of children died within 5 years of diagnosis. RESULTS: Most caregivers spoke with their child about their prognosis (61.8%; n = 131) and death (66.7%; n = 99). Half of children (48%; n = 125) asked about death, particularly older children (51.9% ≥12 years; p = 0.03). Asking about dying was related to having conversations about prognosis (p ≤ 0.001) and death (p ≤ 0.001). Most caregivers (71.8%; n = 94) wanted support to talk to their children. Fewer wanted providers to speak to children directly (12.2%; n = 16) or to be present while caregivers spoke to the child (19.8%; n = 26). Several themes emerged from a content analysis of open-ended responses regarding preferences for provider support. SIGNIFICANCE OF RESULTS: Most caregivers discussed issues pertaining to end of life irrespective of demographic or medical factors. Qualitative themes provide insight into support desired by families to help with these difficult conversations.
Identifier
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<a href="http://doi.org/10.1017/s1478951521000067" target="_blank" rel="noreferrer noopener">10.1017/s1478951521000067</a>
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2021
2021 Special Edition - Oncology
Bedoya SZ
Caregiver
Communication
End Of Life
Gerhardt CA
Kenney AE
Oncology
Palliative & Supportive Care
Pediatric
Wiener L
Young-Saleme T
-
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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/10.1038/s41416-021-01512-9" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1038/s41416-021-01512-9</a>
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Title
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Communication around Palliative Care Principles and Advance Care Planning Between Oncologists, Children with Advancing Cancer and Families
Publisher
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British Journal of Cancer
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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Kaye EC; Woods C; Kennedy K; Velrajan S; Gattas M; Bilbeisi T; Huber R; Lemmon ME; Baker JN; Mack JW
Description
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BACKGROUND: In medical oncology, palliative care principles and advance care planning are often discussed later in illness, limiting time for conversations to guide goal-concordant care. In pediatric oncology, the frequency, timing and content of communication about palliative care principles and advance care planning remains understudied. METHODS: We audio-recorded serial disease re-evaluation conversations between oncologists, children with advancing cancer and their families across the illness trajectory until death or 24 months from last disease progression. Content analysis was conducted to determine topic frequencies, timing and communication approaches. RESULTS: One hundred forty one disease re-evaluation discussions were audio-recorded for 17 patient-parent dyads with advancing cancer. From 2400 min of recorded dialogue, 119 min (4.8%) included discussion about palliative care principles or advance care planning. Most of this dialogue occurred after frank disease progression. Content analysis revealed distinct communication approaches for navigating discussions around goals of care, quality of life, comfort and consideration of limiting invasive interventions. CONCLUSIONS: Palliative care principles are discussed infrequently across evolving illness for children with progressive cancer. Communication strategies for navigating these conversations can inform development of educational and clinical interventions to encourage earlier dialogue about palliative care principles and advance care planning for children with high-risk cancer and their families.
Identifier
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<a href="http://doi.org/10.1038/s41416-021-01512-9" target="_blank" rel="noreferrer noopener">10.1038/s41416-021-01512-9</a>
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2021
2021 Special Edition - Oncology
Baker JN
Bilbeisi T
British Journal Of Cancer
Gattas M
Huber R
Kaye EC
Kennedy K
Lemmon ME
Mack JW
Oncology
Velrajan S
Woods C
-
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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/10.1002/cncr.33546" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/cncr.33546</a>
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Quality Measures for End-Of-Life Care for Children with Cancer: A Modified Delphi Approach
Publisher
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Cancer
Date
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2021
Subject
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pediatrics; end-of-life care; quality measures; modified Delphi
Creator
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Johnston EE; Martinez I; Wolfe J; Asch SM
Description
An account of the resource
BACKGROUND: The quality of adult end-of-life (EOL) cancer care has benefited from quality measures, but corresponding pediatric measures are lacking. Therefore, the authors used a validated expert panel method to recommend EOL quality measures for pediatric oncology. METHODS: The authors used the modified Delphi method to assess potential quality measures. Panelists were selected on the basis of professional organization nominations and expert qualifications. Pediatric and adult oncology, pediatric palliative care, social work, nursing, and hospice were represented. The authors provided the panel with a literature review on 20 proposed measures derived from adult measures and bereaved family interviews. The panel first scored the importance of each measure on a 9-point scale and then discussed the measures via a conference call. The panel then rescored the measures. According to a priori standards, measures with median scores ≥ 7 with at least 7 of 9 experts ranking it as ≥4 were endorsed. RESULTS: The 16 endorsed measures included measures related to avoidance of medically intense care (eg, intensive care unit death and intubation in the last 14 days of life), death location (eg, death in the preferred location), hospital policies/programs (eg, the removal of visitor restrictions at EOL and the presence of a bereavement program), and supportive care services (eg, pediatric palliative care involvement and sibling needs assessment). Unendorsed measures included avoidance of chemotherapy at EOL and home death. CONCLUSIONS: Expert panel-endorsed quality measures have been developed for EOL care in pediatric oncology. The measures need validation with bereaved families and further refinement before they are ready for real-world application as a tool for standardizing EOL care in pediatric oncology. LAY SUMMARY: Quality measures for end-of-life care for children with cancer lag behind adult quality measures. Therefore, the authors have conducted an expert panel to develop an endorsed list of quality measures for end-of-life care for children with cancer. The 16 endorsed measures include measures related to avoidance of medically intense care (eg, intensive care unit death and intubation in the last 14 days of life), location of death (eg, death in the preferred location), hospital policies/programs (eg, the removal of visitor restrictions at the end of life and the presence of a bereavement program), and supportive care services (eg, pediatric palliative care involvement and sibling needs assessment).
Identifier
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<a href="http://doi.org/10.1002/cncr.33546" target="_blank" rel="noreferrer noopener">10.1002/cncr.33546</a>
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2021
2021 Special Edition - Oncology
Asch SM
Cancer
End-of-life Care
Johnston EE
Martinez I
modified Delphi
Pediatrics
quality measures
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/10.1111/ped.14626" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/ped.14626</a>
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Title
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Impact of a Multi-Professional Expert Team on Eol Care of Children with Cancer
Publisher
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Pediatrics International
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Oncology
Creator
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Iwamoto S; Hori H; Sakata K; Kawamata A; Suefuji M; Igura C; Yodoya N; Matsubara T; Ogura T; Komada Y; Hirayama M
Description
An account of the resource
BACKGROUND: The quality of end-of-life (Q-EOL) care is influenced by various factors such as resources for palliative care (PC). We introduced a multi-professional expert team (MET) in 2014, which provides home-based care for children and adolescents with incurable cancer. This study investigated the impacts of the outreach activities by the MET on Q-EOL care of pediatric oncology patients. METHOD(S): This observational study retrospectively examined 112 patients receiving EOL care between 1989 and 2018 at a pediatric cancer center in Japan. Some of the indicators of Q-EOL care before and after the introduction of the outreach activities by the MET were compared. The subjects were 92 in pre-MET and 20 in post-MET periods. RESULT(S): The median days for which the patients stayed at home at the last seven or 30 days were significantly prolonged in post-MET period (0.0 vs. 1.5 days, P=0.020, 3.0 vs. 12.0 days, P=0.042). The change was more significant in hematologic malignancies compared with solid and CNS tumors. Patients receiving longer PC before their deaths could stay at home longer during the last seven days. The ratio of patients receiving PC for more than two months was significantly increased in post-MET period (60.9 vs. 90.0%, P=0.014). In addition, more patients greeted their deaths at home in post-MET period (3.3 vs. 25.0%, P<0.001). CONCLUSION(S): The activities by the MET transformed EOL care of children and adolescents with incurable cancer. Earlier transitions to PC from curative treatment were associated with longer home-based care and more deaths at home. Copyright This article is protected by copyright. All rights reserved.
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<a href="http://doi.org/10.1111/ped.14626" target="_blank" rel="noreferrer noopener">10.1111/ped.14626</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2021 Special Edition - Oncology
Hirayama M
Hori H
Igura C
Iwamoto S
Kawamata A
Komada Y
Matsubara T
Ogura T
Oncology
Pediatrics International
Sakata K
Suefuji M
Yodoya N
-
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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.2020.08.035" 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
A point or period of time associated with an event in the lifecycle of the resource
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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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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Citation List Month
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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Title
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Parental Perceptions of Hospital-Based Bereavement Support Following a Child's Death from Cancer: Room for Improvement
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
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.
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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/10.1097/mph.0000000000002058" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/mph.0000000000002058</a>
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Title
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Decision-Making in the Era of New Medical Technologies in Pediatric Hematology-Oncology: The Death of Palliative Care?
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Journal of Pediatric Hematology/Oncology
Date
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2021
Subject
The topic of the resource
Oncology
Creator
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Fortin S; Le Gall J; Richer J; Payot A; Duval M
Description
An account of the resource
BACKGROUND: Recent advances in immunology, genomics, and cellular therapy have opened numerous therapeutic possibilities in pediatric hematology-oncology, generating new hope in poor prognosis situations. How decisions are made when it comes to treatments and aims needs to be explored in this new technological context. In particular, their impact on the gold standard of early referral to palliative care must be assessed. MATERIALS AND METHODS: Stemming from an ethnographic study combining semistructured interviews and observations carried out in a hematopoietic stem cell transplant unit in a Montréal Pediatric Hospital, we discuss the decision-making process when a patient faces poor prognosis. RESULTS AND DISCUSSION: Although health care providers individually envisioned that palliative care may be the best course of action for patients receiving emergent therapy, they remained collectively in the curative mode. The intricate relationship between science, hope, caregiver, and care receiver sustains this perspective even when (near) death is the probable outcome. When proven treatment fails, emerging therapeutic possibilities offer new hope that can delay the referral to the palliative care team.
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<a href="http://doi.org/10.1097/mph.0000000000002058" target="_blank" rel="noreferrer noopener">10.1097/mph.0000000000002058</a>
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2021
2021 Special Edition - Oncology
Duval M
Fortin S
Journal Of Pediatric Hematology/oncology
Le Gall J
Oncology
Payot A
Richer 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/10.1002/pbc.28826" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.28826</a>
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Title
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Longitudinal Understanding of Prognosis among Adolescents with Cancer
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Pediatric Blood and Cancer
Date
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2021
Subject
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Child; Adolescent; Female; Follow-Up Studies; Humans; Male; Parents/psychology; Prognosis; Longitudinal Studies; oncology; Surveys and Questionnaires; Communication; palliative care; psycho-oncology; psychosocial; Neoplasms/pathology/psychology/therapy; Oncologists/psychology
Creator
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Fisher RS; Kenney AE; Fults MZ; Manring S; Rodriguez EM; Desjardins L; Rausch JR; Young-Saleme T; Ranalli MA; Vannatta K; Compas BE; Gerhardt CA
Description
An account of the resource
OBJECTIVE: Despite calls to increase prognosis communication for adolescents with cancer, limited research has examined their perceptions of prognosis as compared with their parents. We assessed adolescents' understanding of their prognosis relative to parents and oncologists. METHODS: Families of adolescents (aged 10-17) were recruited at two pediatric institutions following a new diagnosis or relapse. Seventy-four adolescents, 68 mothers, and 40 fathers participated at enrollment; 76 adolescents, 69 mothers, and 35 fathers participated one year later. The adolescent's primary oncologist reported on prognosis only at enrollment. Participants rated the likelihood of the adolescent's survival in five years, as well as reporting prognosis communication and sources of information. RESULTS: Most oncologists (65%) and fathers (63%) discussed prognosis in numerical terms with the adolescent at baseline, which was greater than mother report (49%) of discussions of numerical prognosis with adolescents. Adolescents reported a better prognosis than oncologists, but comparable with mothers at diagnosis and one year. Adolescents' prognosis estimates were stable over time (P > .05). At diagnosis, adolescent-father (P = 0.025) and adolescent-oncologist (P < 0.001) discrepancies were larger for youth with advanced than non-advanced cancer. Adolescents whose parents received numerical prognosis estimates from the oncologist, and whose fathers reported providing numerical prognosis estimates had more accurate understandings of prognosis (P < 0.05). CONCLUSIONS: Adolescent prognosis estimates were comparable with those of parents at diagnosis and one year but more favorable than that of oncologists. Although additional research is needed, results suggest discrepancies in prognosis estimates between family members and oncologists, particularly for adolescents with advanced cancer.
Identifier
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<a href="http://doi.org/10.1002/pbc.28826" target="_blank" rel="noreferrer noopener">10.1002/pbc.28826</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2021 Special Edition - Oncology
Adolescent
Child
Communication
Compas BE
Desjardins L
Female
Fisher RS
Follow-up Studies
Fults MZ
Gerhardt CA
Humans
Kenney AE
Longitudinal Studies
Male
Manring S
Neoplasms/pathology/psychology/therapy
Oncologists/psychology
Oncology
Palliative Care
Parents/psychology
Pediatric Blood & Cancer
Prognosis
Psycho-Oncology
psychosocial
Ranalli MA
Rausch JR
Rodriguez EM
Surveys And Questionnaires
Vannatta K
Young-Saleme T
-
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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/10.1002/pbc.28804" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.28804</a>
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Title
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A Quality Improvement Project to Increase Palliative Care Team Involvement in Pediatric Oncology Patients
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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oncology; palliative care; pediatric palliative care; refractory cancer
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Farooki S; Olaiya O; Tarbell L; Clark NA; Linebarger JS; Stroh J; Ellis K; Lewing K
Description
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BACKGROUND: Pediatric palliative care (PPC) for oncology patients improves quality of life and the likelihood of goal-concordant care. However, barriers to involvement exist. OBJECTIVES: We aimed to increase days between PPC consult and death for patients with refractory cancer from a baseline median of 13.5 days to ≥30 days between March 2019 and March 2020. METHODS: Outcome measure was days from PPC consult to death; process measure was days from diagnosis to PPC consult. The project team surveyed oncologists to identify barriers. Plan-do-study-act cycles included establishing target diagnoses, offering education, standardizing documentation, and sending reminders. RESULTS: The 24-month baseline period included 30 patients who died and 25 newly diagnosed patients. The yearlong intervention period included six patients who died and 16 newly diagnosed patients. Interventions improved outcome and process measures. Targeted patients receiving PPC ≥30 days prior to death increased from 43% to 100%; median days from consult to death increased from 13.5 to 159.5. Targeted patients receiving PPC within 30 days of diagnosis increased from 28% to 63%; median days from diagnosis to consult decreased from 221.5 to 14. Of those without PPC consult ≤ 30 days after diagnosis, 17% had template documentation of the rationale. CONCLUSION: Interventions utilized met the global aim, outcome, and process measures. Use of QI methodology empowered providers to involve PPC. Poor template use was a barrier to identifying further drivers. Future directions for this project relate to expanding the target list, creating long-term sustainability, formalizing standards, and surveying patients and families.
Identifier
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<a href="http://doi.org/10.1002/pbc.28804" target="_blank" rel="noreferrer noopener">10.1002/pbc.28804</a>
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2020
2021 Special Edition - Oncology
Clark NA
Ellis K
Farooki S
Lewing K
Linebarger JS
Olaiya O
Oncology
Palliative Care
Pediatric Blood & Cancer
Pediatric Palliative Care
refractory cancer
Stroh J
Tarbell L
-
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Title
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2021 Special Edition 2 - Oncology
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1200/OP.20.00881" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1200/OP.20.00881</a>
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Title
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Feasibility, Acceptability, and Education of Pediatric Oncology Providers Before and After an Embedded Pediatric Palliative Oncology Clinic
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JCO Oncology Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Oncology
Creator
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Falk EE; Allen KE; DeGroote NP; Wasilewski-Masker K; Brock KE
Description
An account of the resource
PURPOSE: Most pediatric palliative care (PPC) education is trainee-directed, didactic, or simulation-based and therefore limited in scope, realism, and audience. We explored whether an embedded pediatric palliative oncology (PPO) clinic is associated with improved pediatric oncology provider palliative care comfort, knowledge, and attitudes toward PPC and if the model is feasible for both clinical care and education of providers of all levels. METHOD(S): Oncology providers (oncologists, advanced practice providers, and fellows) were enrolled in this study. Based on interaction with the PPO clinic, two cohorts were defined: PPO providers (n = 11, 37.9%) and non-PPO providers (n = 18, 62.1%). Providers in both groups responded to qualitative and quantitative questionnaires about the feasibility and acceptability of PPO clinic, their attitudes toward PPC, and knowledge and comfort in PPC concepts at baseline and 1 year. Descriptive statistics were performed; demographic and outcome variables across cohorts by PPO grouping and experience were compared. RESULT(S): All 29 pediatric oncology providers reported acceptability of a PPO clinic and favorable attitudes about PPC. The most feasible clinic model was oncology followed by PPO visits. Non-PPO group and less experienced (<= 10 years) providers had greater improvement in knowledge and comfort with PPC skills than PPO group or more experienced providers. Providers lacked comfort in non-pain symptom management skills. CONCLUSION(S): This embedded PPO clinic model was feasible, acceptable, and highly rated by responding oncology clinicians, but was insufficient as a sole method of educating multidisciplinary oncology providers. Methods of combining clinical and formal education are needed to impart sustained educational change.
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<a href="http://doi.org/10.1200/OP.20.00881" target="_blank" rel="noreferrer noopener">10.1200/OP.20.00881</a>
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2021
2021 Special Edition - Oncology
Allen KE
Brock KE
DeGroote NP
Falk EE
JCO Oncology Practice
Oncology
Wasilewski-Masker K
-
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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
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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