AYA Health Outcomes and Patient Experience (HOPE) Study
Compared to younger and older cancer patients, adolescent and young adults (AYAs), defined as individuals between 15 and 39 years of age, diagnosed with cancer have seen little or no improvement in survival for decades. Research needs to be undertaken to understand what factors, such as access to medical care, inconsistencies in treatment, or inappropriate follow-up after initial treatment for cancer, contribute to the poorer survival in this understudied age group. The purpose of this study is to test the feasibility of a conducting a study in AYAs to examine the quality of care received and health outcomes in the first 14 months following cancer diagnosis. Funded by the National Cancer Institute, the study is a cancer registry-based study that is being conducted across seven registry locations including the three California regions that cover the population of California. AYA patients included in the study were diagnosed with Hodgkin lymphoma, non-Hodgkin lymphoma, acute lymphoblastic leukemia, germ cell cancer and Ewing’s, osteo- and Rhabdomyo-sarcoma. In addition to a patient survey, patients were asked to complete a form that lists the doctors and hospitals who provided their care. Medical records are being abstracted to examine clinical characteristics of the patient, delays in treatments, practice patterns, the influence of insurance status and comorbidity on diagnosis and treatment.
NCCC Principal Investigator: Theresa Keegan, Ph.D.
Funding Source: National Cancer Institute, 2007-2010 |
