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

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.

Eligibility

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

Conditions3

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