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

National Cancer Institute (NCI)

Overview

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.

Objectives: * Aim 1: To measure the quality of care received by adolescents and young adults (AYAs) living with advanced cancer using patient-centered quality measures. * Hypothesis 1.1: AYAs experience high unmet need for psychosocial and spiritual care and communication. * Hypothesis 1.2: Unmet needs for care of physical and psychosocial symptoms intensify over time. * Aim 2: To assess disparities in end-of-life (EOL) care quality and barriers to care experienced by Black, Asian, and Hispanic AYAs. * Hypothesis 2.1: Black, Asian, and Hispanic AYAs are at risk for inferior quality care relative to White patients, with areas of greatest disparity in attention to physical symptoms and communication. * Hypothesis 2.2: Black, Asian, and Hispanic AYAs experience unique barriers to high-quality EOL care, including structural, interpersonal, and individual factors, as well as culturally informed influences.

Study Type

OBSERVATIONAL

Conditions

Cancer

Eligibility

Sex: ALLMin age: 12 YearsMax age: 120 Years

Medical Language ↔ Plain English

* ELIGIBILITY CRITERIA: * Stakeholder Panel: Patients * Ages 12-39y, inclusive * English- or Spanish-speaking and reading * Living with stage IV or recurrent cancer Caregivers * Must be actively involved in the care of an AYA patient * English- or Spanish-speaking and reading Clinicians * Must care for AYA patients * Can be of any discipline, including oncologists, nurses, social workers, psychologists, and chaplains. -Surveys and Interviews (Aims 1 and 2): * Patients ages 12-39y, inclusive * English- or Spanish-speaking and reading * Living with stage IV or recurrent cancer Survey Notes: 1) For AYAs \<18y, family caregivers will be asked to respond to survey questions. For AYAs \>=18y, family caregiver participation is optional. 2) Patients will be eligible without respect to timing of diagnosis or recurrence as long as they are living with advanced disease. Interview Notes: 1) Survey participants will be eligible at the time of completion of the final survey; AYAs who did not participate in surveys (e.g., if enrollment to the survey cohort is already complete) will also be eligible. 2) Patients will be eligible without respect to timing of diagnosis or recurrence as long as they are living with advanced disease.

Outcomes

Primary Outcomes

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

The primary outcome is patient-centered quality of care in the 7 quality domains from our survey. We will generate descriptive data on the proportion of AYAs who report high quality care in each domain, defined as responses in the top 2 categories for each question (for example, that the care team supported quality of life extremely or very well).

Time frame: 3 years

Aim 2: To assess disparities in EOL care quality and barriers to care experienced by minority AYAs

We will use logistic regression to evaluate associations between care quality and race/ethnicity in each of the 7 quality domains, adjusting for potential confounders such as age, sex, gender identity, socioeconomic status, site, and diagnosis.