Evidence map›Paper›PMID 40902740›Full record

Trial reportJournal of pain and symptom management2025

Research Burden in Pediatric Cancer: A Mixed Methods Study From the PediQUEST Response Trial.

Erika Tsuchiyose, Deborah Feifer, Alexandra F Merz, Madeline Avery, Ijeoma J Eche-Ugwu, Opeyemi Awofeso, Liliana Orellana, Denise Becker, Chris Feudtner, Jason L Freedman and 7 more

Registry-linked trialAbstract readRandomized Controlled TrialMulticenter Study
PubMed Full text at PMC Publisher
In one paragraph

Trial report in Journal of pain and symptom management, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT03408314 (A Multisite, Parallel, RCT Comparing the Effectiveness of an Early Palliative Care Intervention, the PediQUEST Response to Pediatric Oncology Symptom Experience , Versus Usual Cancer Care in Children and Adolescents With Advanced Cancer), which is not on this map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–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.

NCT03408314 nacompletednot on this map

A Multisite, Parallel, RCT Comparing the Effectiveness of an Early Palliative Care Intervention, the PediQUEST Response to Pediatric Oncology Symptom Experience , Versus Usual Cancer Care in Children and Adolescents With Advanced Cancer

TypeinterventionalSponsorJoanne Wolfe, MD, MPHRan2018 to 2022Enrolled194ConditionsAdvanced CancerArmsPediQUEST Response, Usual Cancer Care
3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

17 authors.

Erika TsuchiyoseTufts University School of Medicine (E.T.), Boston, Massachusetts, USA.
Deborah FeiferEmory University School of Medicine (D.F.), Atlanta, Georgia, USA.
Alexandra F MerzWashington University School of Medicine in St. Louis (A.M.), St. Louis, Missouri, USA.
Madeline AveryPediatric Palliative Care, Department of Pediatrics (M.A., V.D.), Massachusetts General Hospital, Boston, Massachusetts, USA.
Ijeoma J Eche-UgwuThe Phyllis F. Cantor Center for Research in Nursing and Patient Care Services (I.E.), Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Harvard Medical School (I.E., O.A., A.R., C.U., J.W.), Boston, Massachusetts, USA.
Opeyemi AwofesoHarvard Medical School (I.E., O.A., A.R., C.U., J.W.), Boston, Massachusetts, USA.
Liliana OrellanaBiostatistics Unit (L.O., D.B.), Faculty of Health, Deakin University, Geelong, Australia.
Denise BeckerBiostatistics Unit (L.O., D.B.), Faculty of Health, Deakin University, Geelong, Australia.
Chris FeudtnerDivision of General Pediatrics (C.F.), Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Jason L FreedmanDivision of Oncology (J.F.), Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Tammy I KangPalliative Care (T.K.), Texas Children's Hospital, Houston, Texas, USA.
Abby R RosenbergHarvard Medical School (I.E., O.A., A.R., C.U., J.W.), Boston, Massachusetts, USA; Department of Supportive Oncology (A.R., C.U.), Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Department of Pediatrics (A.R., C.U.), Boston Children's Hospital, Boston, Massachusetts, USA.
Elisha D WaldmanGreat Ormond Street Hospital for Children NHS Foundation Trust (E.W.), London, England, UK.
Christina K UllrichHarvard Medical School (I.E., O.A., A.R., C.U., J.W.), Boston, Massachusetts, USA; Department of Supportive Oncology (A.R., C.U.), Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Department of Pediatrics (A.R., C.U.), Boston Children's Hospital, Boston, Massachusetts, USA.
Joanne WolfeHarvard Medical School (I.E., O.A., A.R., C.U., J.W.), Boston, Massachusetts, USA; Department of Pediatrics (J.W.), Massachusetts General Hospital, Boston, Massachusetts, USA; Department of Pediatrics (J.W.), Brigham & Women's Hospital, Boston, Massachusetts, USA.
María L RequenaCenter for Research and Implementation in Palliative Care (M.R.), Institute for Clinical Effectiveness and Health Policy (IECS), Buenos Aires, Argentina.
Veronica DusselPediatric Palliative Care, Department of Pediatrics (M.A., V.D.), Massachusetts General Hospital, Boston, Massachusetts, USA. Electronic address: vdussel@mgh.harvard.edu.

Funding

PediQUEST: Improving Children's Quality of Life through e-PROMS and Palliative Care (Diversity Supplement)R01NR016720 · NINR · DANA-FARBER CANCER INST · PI WOLFE, JOANNE · 2017 to 2021
$3.2M
NINR NIH HHS R01 NR016720
6 · The paper itself

Abstract

contextResearch burden in pediatric advanced cancer is understudied.

objectivesTo analyze study burden among parents and children participating in the PediQUEST Response Trial, and explore associated factors, including belonging to historically marginalized (HM) backgrounds or facing economic hardship (EH).

methodsMixed-methods secondary analysis of data collected for an RCT. Children ≥2 years old with advanced cancer and a parent were enrolled for 18-weeks across five US pediatric cancer centers. Trough thematic analysis, we examined all parents and child (≥8yo) interviews to identify burden sources. We created a six-level "degree of burden" variable that integrated qualitative data (burden sources, levels 0-3) and quantitative data (dropout status, levels 4-5). Social disparity was grouped as: neither HM nor EH, either HM or EH, and both. We used ordinal logistic regression to explore burden-disparity associations.

resultsAmong 154 randomized dyads, 149 had HM/EH data; 102 families completed interviews (102 parents, 44 children). Two burden themes were identified: study-related and daily life stressors. Most parents (62.4%) and children (48.8%) had burden levels 0-3; high levels (4-5) affected about 20% of families. Social disparity levels were 47.7% HM-/EH-, 30.9% HM+ or EH+, and 21.5% HM+/EH+. Parent burden increased with social disparity (HM+ or EH+ vs. HM-/EH-: cumulative OR 2.3, 95%CI 1.1, 5.1; HM+/EH+ vs. HM-/EH- OR 4.9, 95% CI 1.9, 12.2); no associations found for child's burden.

conclusionStudy burden was mostly low to moderate but higher in families endorsing social disparities. Enhanced support strategies may promote diversity in pediatric advanced cancer research. CLINICALTRIALS: gov NCT03408314.

Indexed as

Cost of IllnessNeoplasmsAdolescentAdultChildChild, PreschoolFemaleHumansMaleParentsCancerempirical and qualitative researchhealth inequitiespalliative medicinepediatrics

Identifiers

PMID40902740
PMCPMC12439119

What OpenQuestion holds

Textmetadata
Read underepoch 390

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.