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

Quality of End-of-Life Care for Children With Cancer: A COG Groupwide Observational Study

Status
Recruiting
Phases
Unknown
Study type
Observational
Source
ClinicalTrials.gov
Registry ID
NCT07412002
Enrollment
2425
Registered
2026-02-17
Start date
2026-07-31
Completion date
2031-01-31
Last updated
2026-09-04

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Childhood Hematopoietic and Lymphatic System Neoplasm, Childhood Malignant Solid Neoplasm

Brief summary

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.

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.

Interventions

OTHERNon-Interventional Study

Non-interventional study

Sponsors

Children's Oncology Group
Lead SponsorNETWORK

Study design

Observational model
OTHER
Time perspective
OTHER

Eligibility

Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes

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

Design outcomes

Primary

MeasureTime frameDescription
Quality of end of life (EOL) care3 months to 2 years after the child's deathIs 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.

Countries

United States

Contacts

PRINCIPAL_INVESTIGATOREmily E Johnston

Children's Oncology Group

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: Sep 5, 2026