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.
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Quality of End-of-Life Care for Children With Cancer
At a glance
Conditions
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.
Study leadership
- Emily E Johnston · PRINCIPAL_INVESTIGATOR · Children's Oncology Group
Who to contact
Opens a ready-to-send draft in your own email app — review before sending.
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Inclusion
What this trial measures
- 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.