Overview & Key Objectives

Note: This is a completed inititiative.

Adolescent & Young Adult Health Outcomes & Patient Experience Study (AYA HOPE): Feasibility Study

To address some of the gaps noted under Background, we assembled a trans-NCI and extramural team to plan a feasibility study to include approximately 530 AYA cancer patients, ages 15–39. The feasibility study was primarily designed to help us understand how best to obtain consent, collect outpatient and inpatient medical records, and survey recently diagnosed AYA cancer patients in population-based community settings. Study patients were diagnosed between July 1, 2007 and October 31, 2008 with germ cell, Hodgkin lymphoma, non-Hodgkin lymphoma, acute lymphoblastic leukemia, or sarcoma (Ewing, osteo or rhabdomyo) and were identified from population-based cancer registries. AYA HOPE was funded by the NCI, with support from the LAF, and conducted in seven NCI Surveillance, Epidemiology, and End Results (SEER) cancer registries: Los Angeles, Seattle-Puget Sound, Iowa, Louisiana, Detroit, Northern California, and Greater California.

The consent component of the study enabled us to identify the best ways to obtain patient or parental consent to review medical records and to determine where and from what physician specialists AYAs received care. The medical record component determined we could obtain medical records for the diagnosis and treatment of these patients and that these records contain sufficient detail to allow us to examine treatment regimen, practice patterns, and the influence of insurance status, comorbidity, and other variables on therapy. The medical record abstraction collected information on type of healthcare facilities used, tumor characteristics and staging, diagnostic work-up procedures, subspecialties of physicians involved in care, details of radiation therapy and systemic therapy, comorbid conditions, and enrollment in clinical trials.

The survey component (a brief, 15–20 minute instrument administered via Internet or paper, with phone follow-up of non-responders) enabled us to assess the receptivity of AYA patients to complete a questionnaire and report on barriers to care (e.g., financial and insurance barriers), and to assess which areas of social and physical functioning were most relevant. Survey questions addressed the impact of cancer, health-related quality of life, healthcare delivery practice patterns, decisions about clinical trial involvement, demographic, socioeconomic, and supportive care characteristics.

Adolescent & Young Adult Health Outcomes & Patient Experience Study (AYA HOPE): Follow-up Study

A follow-up study of the AYA HOPE feasibility study cohort was funded by the NCI in July, 2009, with support from the Lance Armstrong Foundation. This follow-up study concluded in July, 2010. This was the first longitudinal population-based study in the AYA oncology population in the United States. The original study assessed patients 6 to 14 months post-diagnosis. The follow-up study provides additional survey data approximately 24 months post-diagnosis. It allows us to assess questions that were not possible on the original survey (e.g. follow-up care and fertility preservation decisions) and to examine certain domains over time (e.g. symptoms, job and school-related adjustment, health-related quality of life). Diagnosis of new primary cancers and vital status will be assessed. We will also be able to determine the feasibility of recontacting patients in order to collect longitudinal data in the AYA cancer population.