Overview & Key Objectives
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.
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