Understanding End-of-Life Care for Children with Cancer

This study is looking at how different factors, like access to healthcare and interactions with medical staff, affect the quality of end-of-life care for children with cancer. Researchers will review medical records of children who have passed away and ask their parents to complete surveys and possibly interviews. The goal is to understand what leads to variations in care quality and to help identify children who might be at risk for lower quality care in the future. This information could also lead to new ways to improve end-of-life care for these children and their families. This is an observational study, meaning no new treatments are being tested.

Study design
This is an observational study involving up to 2425 deceased children and their bereaved parents. It is not testing any interventions or drugs.
What's involved
Bereaved parents may be asked to complete a survey and potentially participate in an interview.
Compensation
Not stated in the trial record.
Follow-up
The primary endpoint, quality of end-of-life care, is measured up to study completion, which averages 4 years.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT07412002

Quality of End-of-Life Care for Children With Cancer

Recruiting
Not specifiedAges 18+Observational
Children's Oncology Group
~2,425 participants
Updated 2026-09-04 on ClinicalTrials.gov
What's tested:Non-Interventional Study

At a glance

Recruiting sites
28 of 28 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Quality of end of life (EOL) care
Measured over 3 months to 2 years after the child's death
Childhood Hematopoietic and Lymphatic System Neoplasm
Childhood Malignant Solid Neoplasm

NCT07412002

Where you'd take part

This study runs at 28 sites. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • Albany Medical Center

    Albany, New Yorkstudy coordinator listed

    Recruiting

  • Alfred I duPont Hospital for Children

    Wilmington, Delawarestudy coordinator listed

    Recruiting

  • Arkansas Children's Hospital

    Little Rock, Arkansasstudy coordinator listed

    Recruiting

  • Augusta University Medical Center

    Augusta, Georgiastudy coordinator listed

    Recruiting

  • Blank Children's Hospital

    Des Moines, Iowastudy coordinator listed

    Recruiting

  • Bronson Methodist Hospital

    Kalamazoo, Michiganstudy coordinator listed

    Recruiting

  • Children's Healthcare of Atlanta - Arthur M Blank Hospital

    Atlanta, Georgiastudy coordinator listed

    Recruiting

  • Children's Hospital of Alabama

    Birmingham, Alabamastudy coordinator listed

    Recruiting

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

  • Emily E Johnston · PRINCIPAL_INVESTIGATOR · Children's Oncology Group

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Eligibility criteria

Inclusion

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
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
Bereaved parent must provide verbal or implied informed consent
For all participants, all institutional, FDA, and NCI requirements for human studies must be met
  • Quality of end of life (EOL) care3 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.