AYA HOPE - sporedata/researchdesigneR GitHub Wiki
General description
The Adolescent & Young Adult Health Outcomes & Patient Experience Study (AYA HOPE) study was funded by the NCI, with support from the LAF, and conducted in seven NCI Surveillance, Epidemiology, and End ResultsExternal Web Site Policy (SEER) cancer registries: Detroit, Greater California, Iowa, Los Angeles, Louisiana, Northern California, and Seattle-Puget Sound.
The study is based on the observation that cancer survival rates for adolescents and young adults (AYAs) aged 15-39 have barely improved over time, compared to the younger and older cancer populations, possibly due to their unique position between pediatric and adult oncology and their low participation in clinical trials. Furthermore, there exists a lack of data on psychosocial aspects affecting AYAs with cancer.
Recognizing these issues, a 2005 Progress Review Group (PRG), supported by the NCI and Livestrong, highlighted the urgent need for research in this area. They identified several contributing factors to the suboptimal outcomes in AYA cancer patients, such as delayed diagnoses, inconsistent treatment, and limited access to care. Overall, the lack of consistent care and insufficient research has hindered the development of specific treatment guidelines for AYAs with cancer, and there is a scarcity of tools to assess the effectiveness of treatments and psychosocial interventions in various settings.
Related publications
- "Cancer sucks," and other ponderings by adolescent and young adult cancer survivors
- Impact of the AYA HOPE Comorbidity Index on Assessing Health Care Service Needs and Health Status among Adolescents and Young Adults with Cancer
- Cancer negatively impacts on sexual function in adolescents and young adults: The AYA HOPE study
- Unmet Support Service Needs and Health-Related Quality of Life among Adolescents and Young Adults with Cancer: The AYA HOPE Study
- Understanding care and outcomes in adolescents and young adults with cancer: A review of the AYA HOPE study
- Health-related quality of life of adolescent and young adult patients with cancer in the United States: the Adolescent and Young Adult Health Outcomes and Patient Experience study
- Fertility preservation knowledge, counseling, and actions among adolescent and young adult patients with cancer: A population-based study
- Clinical trial participation and time to treatment among adolescents and young adults with cancer: does age at diagnosis or insurance make a difference?
- Young and uninsured: Insurance patterns of recently diagnosed adolescent and young adult cancer survivors in the AYA HOPE study
- Who Treats Adolescents and Young Adults with Cancer? A Report from the AYA HOPE Study
- Impact of cancer on work and education among adolescent and young adult cancer survivors
- Talking About Cancer and Meeting Peer Survivors: Social Information Needs of Adolescents and Young Adults Diagnosed with Cancer
- Multilevel socioeconomic effects on quality of life in adolescent and young adult survivors of leukemia and lymphoma
- Medical care in adolescents and young adult cancer survivors: what are the biggest access-related barriers?
- Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study
- Cancer-related information needs and cancer's impact on control over life influence health-related quality of life among adolescents and young adults with cancer
- Positive and negative psychosocial impact of being diagnosed with cancer as an adolescent or young adult
- Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study
Data access
More information about AYA-HOPE can be found at https://healthcaredelivery.cancer.gov/aya/