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

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: Not yet recruiting
• Conditions: Childhood Hematopoietic and Lymphatic System Neoplasm; Childhood Malignant Solid Neoplasm
• Intervention / Treatment: Other: Non-Interventional Study

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): 1190

Participation Criteria

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

How is the study designed?

Number of groups / cohorts

2

Cohorts and Interventions

Group / Cohort	Intervention / Treatment
Observational part 1; The medical records of deceased patients are reviewed on study.	Other: Non-Interventional Study; Non-interventional study; Other Names: Non-Interventional Observational Study; Noninterventional (Observational) Study
Observational part 2; Bereaved parents complete a survey and may participate in an interview on study.	Other: Non-Interventional Study; Non-interventional study; Other Names: Non-Interventional Observational Study; Noninterventional (Observational) Study

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Quality of end of life (EOL) care	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 and will be modeled using linear mixed effects models with COG site included as a random effect. Models will be adjusted for key demographic (child: death age, race, ethnicity, insurance, biologic sex; parent: age, race, ethnicity, relationship to child, biologic sex) and clinical factors (cancer diagnosis, time from diagnosis to death, relapse status, clinical trial enrollment, cause of death, palliative care team at primary treatment site).	Up to study completion, an average of 4 years

Collaborators and Investigators

• Sponsor: Children's Oncology Group
• Investigators: Principal Investigator: Emily E Johnston, Children's Oncology Group

Study record dates

Study Major Dates

• Study Start (Estimated): September 21, 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): April 13, 2026
• Last Update Submitted That Met QC Criteria: April 7, 2026
• Last Verified: April 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)