Mind the gaps: Disparities in survival and survivorship among adolescents and young adults with hematopoietic cancer

Cancer is the number one disease-related cause of death in individuals under 40. Within this age group, there is substantial evidence that adolescents and young adults (AYAs) (defined by the National Cancer Institute as individuals between the ages of 15 and 39 at diagnosis) are disproportionately burdened by cancer for several reasons. This dissertation sought to examine socioeconomic (SES) differences in survival, quality of life, and attitudes toward cancer clinical trials in AYA survivors of leukemia and lymphoma.;Survival analyses were conducted on California Cancer Registry data to determine whether neighborhood-level SES (nSES) affected overall and cancer-specific survival. A questionnaire study was conducted to assess quality of life and perceived clinical trial barriers. Both of these outcomes were examined for significant individual- and neighborhood-level SES variation. Quality of life (QOL) domains included physical health, psychological and emotional well-being, family and social relationships, and life skills and new experiences. Attitudes toward cancer clinical treatment trials among young adult cancer survivors were also compared to responses from an undergraduate student sample. Finally, a qualitative study consisting of focus groups with AYAs was conducted to identify possible delivery gaps in treatment, care, and support for these patients.;The cancer registry analyses showed that an association between lower nSES and shorter survival was present in both leukemia and non-Hodgkin's lymphoma patients, although when stratified by race/ethnicity, this finding was only significant for Non- Hispanic Whites (P-value for trend <0.05). For leukemia patients, the gradient was significant in 30-39 year olds but not in younger individuals, and in acute lymphoblastic leukemia and chronic myeloid leukemia patients but not acute myeloid leukemia patients.;Individual SES (iSES), derived from an exploratory factor analysis, was more influential on variations in QOL than either nSES or single SES indicators at the neighborhood level. Individuals with higher iSES reported higher quality of life in all four domains tested. A curvilinear trend in attitudes toward cancer clinical trials by iSES was evident, with the highest and lowest quintiles having more positive attitudes to both the personal benefits and safety subscales. Young adult survivors reported a significantly more negative attitude toward the personal benefits of participation and a significantly more positive attitude toward the safety of participation than college students.;Themes that emerged from focus groups and interviews conducted with young adult survivors included variations in attitudes toward cancer, the importance of social support, treatment-related challenges, financial barriers, and the desire for recognition of AYA-specific concerns. The results point to a need for more accurate and appropriate assessments of SES in AYAs with cancer, the recognition of existing health disparities among AYAs, and a need to include AYA patients in a participatory research framework.