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

N/ANot Yet RecruitingNCT07412002

Children's Oncology Group1,190 enrolled

Overview

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.

Study Type

OBSERVATIONAL

Enrollment

1,190

Conditions

Childhood Hematopoietic and Lymphatic System Neoplasm Childhood Malignant Solid Neoplasm

Interventions

Non-Interventional StudyOTHER

Non-interventional study

Eligibility

Sex: ALLMin age: 18 YearsHealthy volunteers:

Medical Language ↔ Plain English

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 * 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

Outcomes

Primary Outcomes

Quality of end of life (EOL) care

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 relevant 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 and will be modeled using linear mixed effects models with COG site included as a random effect. Models will be adjusted for key demographic (child: death age, race, ethnicity, insurance, biologic sex; parent: age, race, ethnicity, relationship to child, biologic sex) and clinical factors (cancer diagnosis, time from diagnosis to death, relapse status, clinical trial enrollment, cause of death, palliative care team at primary treatment site).

Time frame: Up to study completion, an average of 4 years

Data from ClinicalTrials.gov

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