Quality of Care for Adolescent and Young Adult (AYA) Patients Living With Serious or Advanced Cancer

Part of paid clinical trials in Bethesda, Maryland.

Sponsor
National Cancer Institute (NCI)
Study ID
NCT07484282
Status
Withdrawn

Conditions

  • Cancer
  • Patients Living With Stage IV or Recurrent Cancer

Eligibility Criteria

Sex
ALL
Age
12 Years - 120 Years
Healthy Volunteers
Not accepted

Interventions

  • Quality Assessment — OTHER
    Participation in surveys, interviews and/or panels.

Study Details

Background: Cancer among adolescents and young adults (AYAs) is on the rise, with nearly 90,000 AYAs diagnosed in the US each year. While most are cured, an estimated 15,000 AYAs die of cancer in the US annually creating profound suffering for those whose lives are cut short and for those who survive them. AYAs face unique challenges near the end of life (EOL). The tragic circumstances surrounding young lives cut short by cancer often provoke intensive efforts to prolong life, sometimes at the cost of comfort and quality. Patients, families, and even clinicians experience these deaths as tragic, a departure from the natural order of life in which each generation outlives the one before it. The current study is designed to ensure future efforts to improve care is guided by patient perspectives. The aims of the study are to 1) measure the quality of care received by adolescents and young adults (AYAs) living with advanced cancer using patient-centered quality measures, focusing specifically on potential unmet psychosocial, spiritual, and communication needs and 2) to assess disparities in end-of-life (EOL) care quality and barriers to care experienced by Black, Asian, and Hispanic AYAs. Our research will enable us to answer remaining critically unanswered questions and unmet needs about EOL care quality and barriers to care experienced by AYAs.

Key Dates

Start date
Apr 7, 2026
Status verified
Apr 2026
Primary completion
Apr 1, 2029
Completion
Apr 1, 2029

Study Design

Enrollment
0 participants (actual)

Arms

  • Arm: AYA Cancer Patients, Caregivers, Clinicians
    AYA participants with advanced cancer and caregivers or clinicians for AYA patients with advanced cancer.

Primary Outcome Measure

Aim 1: To measure the quality of care received by adolescents and young adults (AYAs) living with advanced cancer using patient-centered quality measures. [ Time Frame: 3 years ]

Locations (1)

FacilityCityStateZIPSite coordinators
National Institutes of Health Clinical CenterBethesdaMaryland20892-

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By research site
National Institutes of Health Clinical Center· Bethesda, MD

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