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NCT07412002RecruitingAccepts Healthy Volunteers

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

Children's Oncology Group

Start Date

7/31/2026

Completion Date

1/31/2031

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.

Eligibility Criteria

Age Range: 18 years to No maximum

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

Interventions

OTHER

Non-Interventional Study

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Conditions

Childhood Hematopoietic and Lymphatic System NeoplasmChildhood Malignant Solid Neoplasm

Locations

Children's Hospital of Alabama

Birmingham, Alabama 35233

United States

Arkansas Children's Hospital

Little Rock, Arkansas 72202-3591

United States

Kaiser Permanente-Oakland

Oakland, California 94611

United States

Alfred I duPont Hospital for Children

Wilmington, Delaware 19803

United States

Golisano Children's Hospital of Southwest Florida

Fort Myers, Florida 33908

United States

Memorial Regional Hospital/Joe DiMaggio Children's Hospital

Hollywood, Florida 33021

United States

Nemours Children's Clinic-Jacksonville

Jacksonville, Florida 32207

United States

Nemours Children's Hospital

Orlando, Florida 32827

United States

Nemours Children's Clinic - Pensacola

Pensacola, Florida 32504

United States

Children's Healthcare of Atlanta - Arthur M Blank Hospital

Atlanta, Georgia 30329

United States

Augusta University Medical Center

Augusta, Georgia 30912

United States

Blank Children's Hospital

Des Moines, Iowa 50309

United States

Sinai Hospital of Baltimore

Baltimore, Maryland 21215

United States

Corewell Health Grand Rapids Hospitals - Helen DeVos Children's Hospital

Grand Rapids, Michigan 49503

United States

Bronson Methodist Hospital

Kalamazoo, Michigan 49007

United States

Children's Mercy Hospitals and Clinics

Kansas City, Missouri 64108

United States

Renown Regional Medical Center

Reno, Nevada 89502

United States

Albany Medical Center

Albany, New York 12208

United States

State University of New York Upstate Medical University

Syracuse, New York 13210

United States

Montefiore Medical Center - Moses Campus

The Bronx, New York 10467

United States

Rainbow Babies and Childrens Hospital

Cleveland, Ohio 44106

United States

Children's Hospital of Pittsburgh of UPMC

Pittsburgh, Pennsylvania 15224

United States

Rhode Island Hospital

Providence, Rhode Island 02903

United States

Dell Children's Medical Center of Central Texas

Austin, Texas 78723

United States

UT Southwestern/Simmons Cancer Center-Dallas

Dallas, Texas 75390

United States

University of Virginia Cancer Center

Charlottesville, Virginia 22908

United States

Providence Sacred Heart Medical Center and Children's Hospital

Spokane, Washington 99204

United States

Saint Vincent Hospital Cancer Center Green Bay

Green Bay, Wisconsin 54301

United States