Childhood Hematopoietic and Lymphatic System Neoplasm, Childhood Malignant Solid Neoplasm
Conditions
Brief 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.
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
Non-interventional study
Sponsors
Study design
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Quality of end of life (EOL) care | 3 months to 2 years after the child's death | Is a composite measure evaluated as the percent of applicable measures with high-quality care for each patient. For each child, will calculate the percent of measures applicable to that patient for which they met the criteria for high-quality care. Of note, not all measures will apply to every patient (e.g., assessment of sibling support will only apply to those with siblings). EOL quality will be treated as a continuous variable. |
Countries
United States
Contacts
Children's Oncology Group