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

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study reviews medical records of deceased pediatric cancer patients and collects input from bereaved parents through surveys and interviews. It aims to identify factors associated with lower-quality end-of-life care and to inform potential future interventions. The study does not involve direct medical interventions and analyzes existing records and survey data to develop a risk model.

Why it matters

Who can join: the full rules

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

Where it's running

• Children's Hospital of Alabama
  Birmingham, Alabama, United States Recruiting
• Arkansas Children's Hospital
  Little Rock, Arkansas, United States Recruiting
• Kaiser Permanente-Oakland
  Oakland, California, United States Recruiting
• Alfred I duPont Hospital for Children
  Wilmington, Delaware, United States Recruiting
• Golisano Children's Hospital of Southwest Florida
  Fort Myers, Florida, United States Recruiting
• Memorial Regional Hospital/Joe DiMaggio Children's Hospital
  Hollywood, Florida, United States Recruiting

Study contacts

• Principal investigator: Emily E Johnston — Children's Oncology Group

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.