I'm Too Young for This: Adolescent and Young Adult Cancer Survivorship
As of January 1, 2012, an estimated 13.7 million cancer survivors were alive in the United States. The number of cancer survivors is expected to reach 18 million by the year 2022. Adolescent and Young Adult (AYA) cancer survivors, ages 15-39, are a population that experiences disparities in care, including a lack of evidence for increased survival.
This thesis presents three papers, each using different methods. The first, an analysis of AYA breast cancer survivors? risk factors including access to clinical trials, uses geographic information systems to map patients? distance to trials and logistic regression to analyze demographic and clinical risk factors. The second paper applies quantitative and qualitative analyses in an evaluation of a public and professional education project on AYA survivorship. The third paper uses qualitative methods and a theory-based taxonomy to assess the use of behavior change theories in mobile health (mHealth) applications for cancer survivorship.
The results demonstrate the multifactorial elements that impact AYA cancer survivorship, and suggest the need for interventions and expanded research. Additional research is needed to understand the unique physical and biological characteristics of AYAs, in particular those of AYA breast cancer survivors. The thesis illuminates the challenges AYA survivors experience with late effects?physical, psychosocial and financial?and the need for ongoing education for healthcare professionals. In considering the potential of mHealth applications for health behaviors change among AYAs and other cancer survivors, the study articulates concerns about the limited use of theory in the majority of mHealth apps, and suggests the need for intervention designers to reflect more deeply on theoretical models.
This thesis contributes to the field of AYA survivorship research in its evidence assessing risk factors including distance to cancer trials for AYA breast cancer patients, by identifying ongoing educational needs for both survivors and providers and by assessing lack of theory and potential for improvement among mHealth interventions. It offers suggestions for future research, policies, and program changes, including the use of emerging mobile technology and sensors to engage AYA survivors both as participants and designers of research that could improve their quality of life and wellbeing.