Quality of End-of-Life Care for Children With Cancer
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: Non-Interventional Study.
- Who it may be relevant to
- Registry conditions: Childhood Hematopoietic and Lymphatic System Neoplasm, Childhood Malignant Solid Neoplasm. Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- United States
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Official title
Quality of End-of-Life Care for Children With Cancer: A COG Groupwide Observational Study
Overview
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
- Other Non-Interventional Study
Non-interventional study
Primary outcome measures
- Quality of end of life (EOL) care [Time frame: Up to study completion, an average of 4 years]
Eligibility criteria
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
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: Yes
Study design
- Observational model
- Other
Study locations
United States · 15 centers
- Kaiser Permanente-Oakland — Oakland
- Alfred I duPont Hospital for Children — Wilmington
- Memorial Regional Hospital/Joe DiMaggio Children's Hospital — Hollywood
- Nemours Children's Clinic-Jacksonville — Jacksonville
- Nemours Children's Hospital — Orlando
- Nemours Children's Clinic - Pensacola — Pensacola
- Sinai Hospital of Baltimore — Baltimore
- Corewell Health Grand Rapids Hospitals - Helen DeVos Children's Hospital — Grand Rapids
- … and 7 more centers
Identifiers
NCT: NCT07412002 · ALTE24C1 · NCI-2026-00574 · ALTE24C1 · COG-ALTE24C1 · ALTE24C1 · R37CA296615 · UG1CA189955