Quality of End-of-Life Care for Children With Cancer
Purpose
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.
Conditions
- Childhood Hematopoietic and Lymphatic System Neoplasm
- Childhood Malignant Solid Neoplasm
Eligibility
- Eligible Ages
- Over 18 Years
- Eligible Sex
- All
- Accepts Healthy Volunteers
- Yes
Criteria
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
Study Design
- Phase
- Study Type
- Observational
- Observational Model
- Other
- Time Perspective
- Other
Arm Groups
| Arm | Description | Assigned Intervention |
|---|---|---|
| Observational part 1 | The medical records of deceased patients are reviewed on study. |
|
| Observational part 2 | Bereaved parents complete a survey and may participate in an interview on study. |
|
Recruiting Locations
Birmingham, Alabama 35233
Little Rock, Arkansas 72202-3591
Site Public Contact
501-364-7373
Oakland, California 94611
Wilmington, Delaware 19803
Fort Myers, Florida 33908
Hollywood, Florida 33021
Jacksonville, Florida 32207
Orlando, Florida 32827
Pensacola, Florida 32504
Atlanta, Georgia 30329
Augusta, Georgia 30912
Baltimore, Maryland 21215
Site Public Contact
410-601-9083
Grand Rapids, Michigan 49503
Kalamazoo, Michigan 49007
Kansas City, Missouri 64108
Reno, Nevada 89502
Albany, New York 12208
Site Public Contact
518-262-5513
The Bronx, New York 10467
Cleveland, Ohio 44106
Site Public Contact
216-844-5437
Pittsburgh, Pennsylvania 15224
Providence, Rhode Island 02903
Site Public Contact
401-444-1488
Austin, Texas 78723
Dallas, Texas 75390
Charlottesville, Virginia 22908
Spokane, Washington 99204
Green Bay, Wisconsin 54301
More Details
- Status
- Recruiting
- Sponsor
- Children's Oncology Group
Study Contact
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.