Evidence map›Paper›PMID 31445136›Full record

ArticleJournal of pain and symptom management2019

Challenges and Priorities for Pediatric Palliative Care Research in the U.S. and Similar Practice Settings: Report From a Pediatric Palliative Care Research Network Workshop.

Chris Feudtner, Abby R Rosenberg, Renee D Boss, Lori Wiener, Maureen E Lyon, Pamela S Hinds, Myra Bluebond-Langner, Joanne Wolfe

Registry-linked trialAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of pain and symptom management, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT02693665 (Building Evidence for Effective Palliative/End of Life Care for Teens With Cancer), which is not on this map. Cited by 31 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
31citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT02693665 nacompletednot on this map

Building Evidence for Effective Palliative/End of Life Care for Teens With Cancer

TypeinterventionalSponsorMaureen LyonRan2016 to 2022Enrolled260ConditionsCancerArmsFAmily CEntered Advance Care Planning for Teens with Cancer
3 · Its place in the literature

Who cites it

31 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Impact of Specialized Pediatric Palliative Care: A Systematic Review.Journal of pain and symptom management · 2020
    Pooled it
  2. Trial
  3. Article
  4. Article
  5. Article
  6. Article
  7. Article
  8. Article
  9. Pediatric Oncology Hospice: A Comprehensive Review.The American journal of hospice & palliative care · 2024
    Review
  10. Article
  11. Article
  12. Article
  13. Article
  14. Review
  15. Article
  16. Defining Neonatal Serious Illness.Journal of palliative medicine · 2022
    Article
  17. Review
  18. Article
  19. Review
  20. Article
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

8 authors.

Chris FeudtnerThe Ingerman Center for Pediatric Palliative Care, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA. Electronic address: feudtner@email.chop.edu.
Abby R RosenbergPalliative Care and Resilience Program, Seattle Children's Research Institute, Seattle, Washington, USA; Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA.
Renee D BossDepartment of Pediatrics, Johns Hopkins School of Medicine and Berman Institute of Bioethics, Baltimore, Maryland, USA.
Lori WienerNational Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
Maureen E LyonCenter for Translational Research, Children's National Health System, Washington, District of Columbia, USA; Department of Pediatrics, George Washington University School of Medicine and Health Sciences, Washington, District of Columbia, USA.
Pamela S HindsChildren's National Health System, Department of Nursing Science, Professional Practice & Quality, and the George Washington University School of Medicine and Health Sciences, Washington, District of Columbia, USA.
Myra Bluebond-LangnerLouis Dundas Centre for Children's Palliative Care, Great Ormond Street Institute of Child Health, University College London, London, United Kingdom; Department of Sociology, Anthropology, and Criminal Justice, Rutgers University, Camden, New Jersey, USA.
Joanne WolfeDepartment of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts; Department of Pediatrics, Boston Children's Hospital, Boston, Massachusetts, USA.

Funding

Pediatric Oncology Branch Behvioral Science CoreZIDBC011517 · NCI · DIVISION OF BASIC SCIENCES - NCI · PI GLOD, JOHN · 2013 to 2025
$15.6M
Intramural NIH HHS ZID BC011517
6 · The paper itself

Abstract

contextTo dramatically advance the evidence base for pediatric palliative care (PPC) interventions, practices, and programs in the U.S. and similar practice settings, the field needs to better understand the challenges and opportunities for rigorous scholarship.

objectivesThe Pediatric Palliative Care Research Network conducted a workshop to clarify challenges and identify key priorities.

methodsThe workshop focused on PPC research topics and methods, including outcomes measurement, qualitative inquiry, analyses of big data, prospective collection of research data, case series and cohort studies, and intervention trials, with synthesizing summary and follow-up discussions. All attendees reviewed and approved the final report.

resultsFive common challenges were identified: patient diversity and small population size; interdependencies and dynamic interactions between child, family members, and disease processes over time; outcomes and measurement; workforce and infrastructure limitations; and presumed burden of PPC research on participants. Seven priorities emerged: bolster training and development of PPC investigators; develop core resources; advance symptom measurement (and measurements of other exposures and outcomes); improve symptom management and quality of life interventions; improve communication, elicitation of goals of care, and decision making; understand family impact and facilitate or improve family adaptation and coping; and analyze and improve systems of care, policy, and education.

conclusionThese challenges and priorities identify key research areas that can guide individual investigators and research funders to advance the field.

Indexed as

Palliative CarePediatricsResearchResearch DesignChildDecision MakingFamilyHumansUnited Statesdecision makingfamilyfundinginfrastructuremethodologypalliative carePediatricresearchsymptomstraining

Identifiers

PMID31445136
PMCPMC8499153

What OpenQuestion holds

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Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.