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

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

ArmDescriptionAssigned Intervention
Observational part 1 The medical records of deceased patients are reviewed on study.
  • Other: Non-Interventional Study
    Non-interventional study
    Other names:
    • Non-Interventional Observational Study
    • Noninterventional (Observational) Study
Observational part 2 Bereaved parents complete a survey and may participate in an interview on study.
  • Other: Non-Interventional Study
    Non-interventional study
    Other names:
    • Non-Interventional Observational Study
    • Noninterventional (Observational) Study

Recruiting Locations

Children's Hospital of Pittsburgh of UPMC
Pittsburgh, Pennsylvania 15224
Contact:
Site Public Contact
412-692-8570
jean.tersak@chp.edu

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.

Notice

Study information shown on this site is derived from ClinicalTrials.gov (a public registry operated by the National Institutes of Health). The listing of studies provided is not certain to be all studies for which you might be eligible. Furthermore, study eligibility requirements can be difficult to understand and may change over time, so it is wise to speak with your medical care provider and individual research study teams when making decisions related to participation.