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

NCT07412002 | Not Yet Recruiting DMC

• 5 other identifiers: ALTE24C1NCI-2026-00574COG-ALTE24C1R37CA296615UG1CA189955
• Study Type: observational
• Target: 1,190
• Locations: 0 countries
• Sites: N/A

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.

Conditions

Childhood Malignant Solid Neoplasm; Childhood Hematopoietic and Lymphatic System Neoplasm

Outcome Measures

Primary Outcomes (1)

• 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

Study Arms (2)

Observational part 1

The medical records of deceased patients are reviewed on study.

Other: Non-Interventional Study

Observational part 2

Bereaved parents complete a survey and may participate in an interview on study.

Other: Non-Interventional Study

Interventions

Non-Interventional Study OTHER

Non-interventional study

Also known as: Non-Interventional Observational Study, Noninterventional (Observational) Study

Observational part 1; Observational part 2

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• 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

You may qualify if:

• 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

Sponsors & Collaborators

• Children's Oncology Group: lead

Study Officials

• Emily E Johnston

  Children's Oncology Group

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: OTHER
• Sponsor Type: NETWORK
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: February 4, 2026
• First Posted: February 17, 2026
• Study Start (Estimated): September 21, 2026
• Primary Completion (Estimated): January 31, 2031
• Study Completion (Estimated): January 31, 2031
• Last Updated: April 13, 2026

Record last verified: 2026-04