Evidence map›Paper›PMID 40163691›Full record

ArticleJournal of the National Cancer Institute2025

Incorporation of patient-reported outcomes in pediatric cancer clinical trials: design, implementation, and dissemination.

Katie A Greenzang, Kathleen E Montgomery, Adam DuVall, Michael E Roth, Mark Krailo, Michelle M Nuño, Lindsay Renfro, Natalie DelRocco, John Doski, Kara Kelly and 8 more

Abstract read
In one paragraph

Article in Journal of the National Cancer Institute, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing 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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed.

  1. Article
  2. Observational
  3. Patient-reported and caregiver-reported outcomes after limb salvage or amputation for pediatric bone and soft tissue sarcomas: a scoping review.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026
    Article
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

18 authors.

Katie A GreenzangDepartment of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, MA, United States.ORCID 0000-0002-7591-2245
Kathleen E MontgomeryUniversity of Wisconsin-Madison School of Nursing, Madison, WI, United States.ORCID 0000-0001-7662-0247
Adam DuVallDepartment of Medicine, University of Chicago, Chicago, IL, United States.ORCID 0000-0002-9163-8792
Michael E RothDivision of Pediatrics, Department of Pediatrics Patient Care, The University of Texas MD Anderson Cancer Center, Houston, TX, United States.ORCID 0000-0002-6411-8353
Mark KrailoDepartment of Population and Public Health Sciences, University of Southern California, Los Angeles, CA, United States.
Michelle M NuñoDepartment of Population and Public Health Sciences, University of Southern California, Los Angeles, CA, United States.ORCID 0000-0003-2031-929X
Lindsay RenfroDepartment of Population and Public Health Sciences, University of Southern California, Los Angeles, CA, United States.ORCID 0000-0002-4306-1896
Natalie DelRoccoDepartment of Population and Public Health Sciences, University of Southern California, Los Angeles, CA, United States.ORCID 0000-0002-8139-9839
John DoskiDepartments of Surgery and Pediatrics, University of Texas Health Science Center, San Antonio, San Antonio, TX, United States.
Kara KellyDepartment of Pediatric Oncology, Roswell Park Comprehensive Cancer Center, Buffalo, NY, United States.ORCID 0000-0003-1473-3937
Sharon M CastellinoDepartment of Pediatrics, Emory School of Medicine, Atlanta, GA, United States.
Jennifer McNeerDepartment of Pediatrics, University of Utah/Primary Children's Hospital, Salt Lake City, UT, United States.ORCID 0000-0002-4743-6325
Maureen M O'BrienDepartment of Pediatrics, Children's Hospital Colorado; University of Colorado Anschutz School of Medicine, Denver, CO, United States.ORCID 0000-0002-9054-4321
Damon ReedDepartment of Pediatrics, Memorial Sloan Kettering Cancer Center, New York, NY, United States.ORCID 0000-0002-8238-2465
Katherine JanewayDepartment of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, MA, United States.ORCID 0000-0001-6000-3594
Pamela S HindsDepartment of Nursing Science, Children's National Hospital, Washington, DC, United States.ORCID 0000-0001-6491-6649
Sue ZupanecDepartment of Pediatric Oncology, The Hospital for Sick Children, Toronto, ON, Canada.ORCID 0000-0003-1755-7203
Susan K ParsonsTufts University School of Medicine, Boston, MA, United States.ORCID 0000-0003-0282-6490

Funding

NCTN BIQSFP ANBL1531 (NRT)U10CA180886 · NCI · PUBLIC HEALTH INSTITUTE · PI Douglas S. Hawkins · 2014 to 2026
$390.6M
COG SDMC - Statistics CoreU10CA180899 · NCI · UNIVERSITY OF SOUTHERN CALIFORNIA · PI TODD A ALONZO · 2014 to 2026
$132.8M
Expectations for Pediatric Cancer Treatment (EXPECT): A Family-Centered Intervention to Prepare Parents for Pediatric Leukemia TherapyK08CA245036 · NCI · DANA-FARBER CANCER INST · PI GREENZANG, KATIE A. · 2019 to 2023
$761k
Advancing novel therapeutics and translational science to close the survivorship gap in pediatric, adolescent and young adult (AYA) lymphomaR50CA285492 · NCI · EMORY UNIVERSITY · PI SHARON MARIE CASTELLINO · 2024 to 2026
$537k
NCI NIH HHS K08 CA245036NCI NIH HHS R50 CA285492NCI NIH HHS U10 CA180886NCI NIH HHS U10 CA180899NCTN Operations Center U10CA180886NCTN Statistics & Data Center U10CA180899NIH HHS
6 · The paper itself

Abstract

Understanding the patient experience of treatment toxicities and their impact on health-related quality of life from cancer treatments requires asking patients using patient-reported outcomes. Over the past 20 years, the National Institutes of Health has sponsored several tools-namely, Patient-Reported Outcomes Measurement Information System measures and the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events-for precisely this purpose: to ensure valid, reliable tools to collect and detect patient-reported toxicities or adverse events and their impact on health-related quality of life. These patient-reported outcomes measures have been widely incorporated in clinical trials for adults with cancer. Yet, despite considerable work developing and validating developmentally appropriate versions of these measures for pediatric and adolescent self-report, patient-reported outcomes inclusion in pediatric and adolescent and young adult clinical trials has lagged. Here, we discuss optimal strategies to integrate validated patient-reported outcomes tools and sound analytic methodologies in clinical trials for children and adolescent and young adults with cancer, highlighting lessons learned from recent successes and ongoing experiences developing and opening cross-network trials for children and adolescent and young adults through the Children's Oncology Group for patients with classic Hodgkin lymphoma, osteosarcoma, and acute lymphoblastic leukemia.

Indexed as

Clinical Trials as TopicNeoplasmsPatient Reported Outcome MeasuresQuality of LifeResearch DesignAdolescentChildHumansSelf ReportUnited StatesYoung Adult

Identifiers

PMID40163691
PMCPMC12415959

What OpenQuestion holds

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Registered trials

None linked

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.