Quality of End-of-Life Care for Children With Cancer
September 3, 2026 updated by: Children's Oncology Group
Quality of End-of-Life Care for Children With Cancer: A COG Groupwide Observational Study
This study examines the role of access to care, patient/family interactions with the healthcare system, and stress in explaining variations in quality of end-of-life care.
The data collected from this study may help researchers develop a model for identifying patients at risk of low-quality end-of-life care as well as recommendations for potential future interventions.
Study Overview
Status
Recruiting
Intervention / Treatment
Detailed Description
PRIMARY OBJECTIVE:
I. Examine the role of access to care, patient/family healthcare interactions, and stress in variation in quality of end-of-life (EOL) care.
OUTLINE: This is an observational study.
PART 1: The medical records of deceased patients are reviewed on study.
PART 2: Bereaved parents complete a survey and may participate in an interview on study.
Study Type
Observational
Enrollment (Estimated)
2425
Contacts and Locations
This section provides the contact details for those conducting the study, and information on where this study is being conducted.
Study Locations
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Alabama
-
Birmingham, Alabama, United States, 35233
- Recruiting
- Children's Hospital of Alabama
-
Contact:
- Site Public Contact
- Phone Number: 205-638-9285
- Email: oncologyresearch@peds.uab.edu
-
Principal Investigator:
- Emily E. Johnston
-
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Arkansas
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Little Rock, Arkansas, United States, 72202-3591
- Recruiting
- Arkansas Children's Hospital
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Principal Investigator:
- Michael W. Bishop
-
Contact:
- Site Public Contact
- Phone Number: 501-364-7373
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California
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Oakland, California, United States, 94611
- Recruiting
- Kaiser Permanente-Oakland
-
Contact:
- Site Public Contact
- Phone Number: 877-642-4691
- Email: Kpoct@kp.org
-
Principal Investigator:
- Aarati V. Rao
-
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Delaware
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Wilmington, Delaware, United States, 19803
- Recruiting
- Alfred I duPont Hospital for Children
-
Contact:
- Site Public Contact
- Phone Number: 302-651-5572
- Email: Allison.bruce@nemours.org
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Principal Investigator:
- Vibhuti Agarwal
-
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Florida
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Fort Myers, Florida, United States, 33908
- Recruiting
- Golisano Children's Hospital of Southwest Florida
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Contact:
- Site Public Contact
- Phone Number: 239-343-5333
- Email: molly.arnstrom@leehealth.org
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Principal Investigator:
- Emad K. Salman
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Hollywood, Florida, United States, 33021
- Recruiting
- Memorial Regional Hospital/Joe DiMaggio Children's Hospital
-
Contact:
- Site Public Contact
- Phone Number: 954-265-1847
- Email: OHR@mhs.net
-
Principal Investigator:
- Iftikhar Hanif
-
Jacksonville, Florida, United States, 32207
- Recruiting
- Nemours Children's Clinic-Jacksonville
-
Contact:
- Site Public Contact
- Phone Number: 302-651-5572
- Email: Allison.bruce@nemours.org
-
Principal Investigator:
- Vibhuti Agarwal
-
Orlando, Florida, United States, 32827
- Recruiting
- Nemours Children's Hospital
-
Contact:
- Site Public Contact
- Phone Number: 302-651-5572
- Email: Allison.bruce@nemours.org
-
Principal Investigator:
- Vibhuti Agarwal
-
Pensacola, Florida, United States, 32504
- Recruiting
- Nemours Children's Clinic - Pensacola
-
Contact:
- Site Public Contact
- Email: helpdesk@childrensoncologygroup.org
-
Principal Investigator:
- Jeffrey H. Schwartz
-
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Georgia
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Atlanta, Georgia, United States, 30329
- Recruiting
- Children's Healthcare of Atlanta - Arthur M Blank Hospital
-
Contact:
- Site Public Contact
- Phone Number: 404-785-0232
- Email: Olivia.Floyd@choa.org
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Principal Investigator:
- Jonathan S. Ebelhar
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Augusta, Georgia, United States, 30912
- Recruiting
- Augusta University Medical Center
-
Contact:
- Site Public Contact
- Phone Number: 706-721-2388
- Email: ga_cares@augusta.edu
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Principal Investigator:
- Colleen H. McDonough
-
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Iowa
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Des Moines, Iowa, United States, 50309
- Recruiting
- Blank Children's Hospital
-
Contact:
- Site Public Contact
- Phone Number: 515-241-8912
- Email: samantha.mallory@unitypoint.org
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Principal Investigator:
- Samantha L. Mallory
-
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Maryland
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Baltimore, Maryland, United States, 21215
- Recruiting
- Sinai Hospital of Baltimore
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Principal Investigator:
- Jason M. Fixler
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Contact:
- Site Public Contact
- Phone Number: 410-601-9083
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Michigan
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Grand Rapids, Michigan, United States, 49503
- Recruiting
- Corewell Health Grand Rapids Hospitals - Helen DeVos Children's Hospital
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Contact:
- Site Public Contact
- Phone Number: 616-391-1230
- Email: crcwm-regulatory@crcwm.org
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Principal Investigator:
- Kathleen Y. Butler
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Kalamazoo, Michigan, United States, 49007
- Recruiting
- Bronson Methodist Hospital
-
Contact:
- Site Public Contact
- Phone Number: 616-391-1230
- Email: crcwm-regulatory@crcwm.org
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Principal Investigator:
- Kathleen Y. Butler
-
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Missouri
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Kansas City, Missouri, United States, 64108
- Recruiting
- Children's Mercy Hospitals and Clinics
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Principal Investigator:
- Keith J. August
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Contact:
- Site Public Contact
- Phone Number: 816-302-6808
- Email: COGResearchGroup@cmh.edu
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Nevada
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Reno, Nevada, United States, 89502
- Recruiting
- Renown Regional Medical Center
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Principal Investigator:
- Seema L. Rao
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Contact:
- Site Public Contact
- Phone Number: 775-982-5050
- Email: Renown-CRD@renown.org
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New York
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Albany, New York, United States, 12208
- Recruiting
- Albany Medical Center
-
Contact:
- Site Public Contact
- Phone Number: 518-262-5513
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Principal Investigator:
- Lauren R. Weintraub
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Syracuse, New York, United States, 13210
- Recruiting
- State University of New York Upstate Medical University
-
Contact:
- Site Public Contact
- Phone Number: 315-464-5476
-
Principal Investigator:
- Melanie A. Comito
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The Bronx, New York, United States, 10467
- Recruiting
- Montefiore Medical Center - Moses Campus
-
Contact:
- Site Public Contact
- Phone Number: 718-379-6866
- Email: eskwak@montefiore.org
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Principal Investigator:
- Alice Lee
-
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Ohio
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Cleveland, Ohio, United States, 44106
- Recruiting
- Rainbow Babies and Childrens Hospital
-
Contact:
- Site Public Contact
- Phone Number: 216-844-5437
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Principal Investigator:
- Duncan S. Stearns
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Pennsylvania
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Pittsburgh, Pennsylvania, United States, 15224
- Recruiting
- Children's Hospital of Pittsburgh of UPMC
-
Contact:
- Site Public Contact
- Phone Number: 412-692-8570
- Email: jean.tersak@chp.edu
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Principal Investigator:
- Jean M. Tersak
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Rhode Island
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Providence, Rhode Island, United States, 02903
- Recruiting
- Rhode Island Hospital
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Principal Investigator:
- Bradley DeNardo
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Contact:
- Site Public Contact
- Phone Number: 401-444-1488
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Texas
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Austin, Texas, United States, 78723
- Recruiting
- Dell Children's Medical Center of Central Texas
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Contact:
- Site Public Contact
- Phone Number: 512-628-1902
- Email: TXAUS-DL-SFCHemonc.research@ascension.org
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Principal Investigator:
- Shannon M. Cohn
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Dallas, Texas, United States, 75390
- Recruiting
- UT Southwestern/Simmons Cancer Center-Dallas
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Principal Investigator:
- Ksenya Shliakhtsitsava
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Contact:
- Site Public Contact
- Phone Number: 214-648-7097
- Email: canceranswerline@UTSouthwestern.edu
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Virginia
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Charlottesville, Virginia, United States, 22908
- Recruiting
- University of Virginia Cancer Center
-
Contact:
- Site Public Contact
- Phone Number: 434-243-6303
- Email: uvacancertrials@hscmail.mcc.virginia.edu
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Principal Investigator:
- Brian C. Belyea
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Washington
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Spokane, Washington, United States, 99204
- Recruiting
- Providence Sacred Heart Medical Center and Children's Hospital
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Contact:
- Site Public Contact
- Phone Number: 800-228-6618
- Email: HopeBeginsHere@providence.org
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Principal Investigator:
- Judy L. Felgenhauer
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Wisconsin
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Green Bay, Wisconsin, United States, 54301
- Recruiting
- Saint Vincent Hospital Cancer Center Green Bay
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Principal Investigator:
- Catherine A. Long
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Contact:
- Site Public Contact
- Phone Number: 920-433-8889
- Email: wi_research_admin@hshs.org
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Participation Criteria
Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.
Eligibility Criteria
Ages Eligible for Study
- Adult
- Older Adult
Accepts Healthy Volunteers
Yes
Sampling Method
Non-Probability Sample
Study Population
Bereaved parents of an eligible deceased COG registered index child patient previously enrolled on Stratum 1 of APEC14B1, Project:EveryChild
Description
Inclusion Criteria:
Index Child (COG Registered Patient):
- Must be deceased
- < 18 years old at time of death
- Diagnosed with any oncologic condition
History of enrollment on Stratum 1 of APEC14B1, Project:EveryChild
- Note: history of treatment on a COG therapeutic trial is not required
- Resided in the United States, including Puerto Rico, as evidenced by most recent address, at the time of death
Bereaved Parent(s):
- Must be a parent, legal guardian, or caregiver (biological or non-biological) of an eligible Index Child enrolled on APEC14B1 with current Consent to Future Contact (e.g., from the APEC14B1 Part B Consent)
- Self-reported confirmation of familiarity with the care received by the Index Child in the last month of their life
- Bereaved parent must understand English or Spanish (written and/or spoken)
- Must be a parent/guardian/key contact from the Index Child's APEC14B1 Future Contact study record or must be referred by one of the APEC14B1 contacts
- Bereaved parent must be >= 18 years old at the time of ALTE24C1 study enrollment
Regulatory Requirements:
- Bereaved parent must provide verbal or implied informed consent
- For all participants, all institutional, FDA, and NCI requirements for human studies must be met
Study Plan
This section provides details of the study plan, including how the study is designed and what the study is measuring.
How is the study designed?
Design Details
Cohorts and Interventions
Group / Cohort |
Intervention / Treatment |
|---|---|
|
Observational part 1
The medical records of deceased patients are reviewed on study.
|
Non-interventional study
Other Names:
|
|
Observational part 2
Bereaved parents complete a survey and may participate in an interview on study.
|
Non-interventional study
Other Names:
|
What is the study measuring?
Primary Outcome Measures
Outcome Measure |
Measure Description |
Time Frame |
|---|---|---|
|
Quality of end of life (EOL) care
Time Frame: 3 months to 2 years after the child's death
|
Is a composite measure evaluated as the percent of applicable measures with high-quality care for each patient.
For each child, will calculate the percent of measures applicable to that patient for which they met the criteria for high-quality care.
Of note, not all measures will apply to every patient (e.g., assessment of sibling support will only apply to those with siblings).
EOL quality will be treated as a continuous variable.
|
3 months to 2 years after the child's death
|
Collaborators and Investigators
This is where you will find people and organizations involved with this study.
Sponsor
Investigators
- Principal Investigator: Emily E Johnston, Children's Oncology Group
Study record dates
These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.
Study Major Dates
Study Start (Actual)
July 31, 2026
Primary Completion (Estimated)
January 31, 2031
Study Completion (Estimated)
January 31, 2031
Study Registration Dates
First Submitted
February 4, 2026
First Submitted That Met QC Criteria
February 9, 2026
First Posted (Actual)
February 17, 2026
Study Record Updates
Last Update Posted (Actual)
September 4, 2026
Last Update Submitted That Met QC Criteria
September 3, 2026
Last Verified
September 1, 2026
More Information
Terms related to this study
Other Study ID Numbers
- ALTE24C1 (Other Identifier: CTEP)
- UG1CA189955 (U.S. NIH Grant/Contract)
- NCI-2026-00574 (Registry Identifier: CTRP (Clinical Trial Reporting Program))
- COG-ALTE24C1 (Other Identifier: DCP)
- R37CA296615 (U.S. NIH Grant/Contract)
This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.