Children's Oncology Group
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…
Non-interventional study