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.

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.

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