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

Changing organizational culture: using the CEO cancer gold standard policy initiatives to promote health and wellness at a school of public health

BACKGROUND: Worksite wellness initiatives for health promotion and health education have demonstrated effectiveness in improving employee health and wellness. We examined the effects of a multifaceted health promotion campaign on organizational capacity to meet requirements to become CEO Cancer Gold Standard Accredited. METHODS: We conducted an online survey to assess perceived organizational values and support for the five CEO Cancer Gold Standard Pillars for cancer prevention: tobacco cessation; physical activity; nutrition; cancer screening and early detection; and accessing information on cancer clinical trials. Baseline and follow-up surveys were sent 6-months apart to faculty, staff, and students at a school of public health to test the impact of a multifaceted health promotion campaign on perceived organizational change. Descriptive analyses were used to characterize percent improvement. Multivariate logistic regression analyses were used to control for participants’ university status. RESULTS: The current organizational culture highly supported tobacco cessation at both time points. Significant improvements (p < .05) from baseline to follow-up were observed for questions measuring organizational values for ‘prevention, screening, and early detection of cancer’ and ‘accessing cancer treatment and clinical trials’. CONCLUSIONS: Health promotion and education efforts using multiple approaches were effective to improve perceived organizational values and support for cancer prevention and early detection, and increase access to information about cancer clinical trials. Future studies are needed to examine broader impacts of implementing worksite health promotion initiatives

Apps Seeking Theories: Results of a Study on the Use of Health Behavior Change Theories in Cancer Survivorship Mobile Apps

Background Thousands of mobile health apps are now available for use on mobile phones for a variety of uses and conditions, including cancer survivorship. Many of these apps appear to deliver health behavior interventions but may fail to consider design considerations based in human computer interface and health behavior change theories. Objective This study is designed to assess the presence of and manner in which health behavior change and health communication theories are applied in mobile phone cancer survivorship apps. Methods The research team selected a set of criteria-based health apps for mobile phones and assessed each app using qualitative coding methods to assess the application of health behavior change and communication theories. Each app was assessed using a coding derived from the taxonomy of 26 health behavior change techniques by Abraham and Michie with a few important changes based on the characteristics of mHealth apps that are specific to information processing and human computer interaction such as control theory and feedback systems. Results A total of 68 mobile phone apps and games built on the iOS and Android platforms were coded, with 65 being unique. Using a Cohen’s kappa analysis statistic, the inter-rater reliability for the iOS apps was 86.1 (P<.001) and for the Android apps, 77.4 (P<.001). For the most part, the scores for inclusion of theory-based health behavior change characteristics in the iOS platform cancer survivorship apps were consistently higher than those of the Android platform apps. For personalization and tailoring, 67% of the iOS apps (24/36) had these elements as compared to 38% of the Android apps (12/32). In the area of prompting for intention formation, 67% of the iOS apps (34/36) indicated these elements as compared to 16% (5/32) of the Android apps. Conclusions Mobile apps are rapidly emerging as a way to deliver health behavior change interventions that can be tailored or personalized for individuals. As these apps and games continue to evolve and include interactive and adaptive sensors and other forms of dynamic feedback, their content and interventional elements need to be grounded in human computer interface design and health behavior and communication theory and practice.The open access fee for this work was funded through the Texas A&M University Open Access to Knowledge (OAK) Fund

Promoting Public Health Through State Cancer Control Plans: A Review of Capacity and Sustainability

The Centers for Disease Prevention and Control’s National Comprehensive Cancer Control Program oversees Comprehensive Cancer Control (CCC) programs designed to develop and implement CCC plans via CCC coalitions, alliances or consortia of program stakeholders. We reviewed 40 up-to-date plans for states and the District of Columbia in order to assess how capacity building and sustainability, two evidence-based practices necessary for organizational readiness, positive growth, and maintenance are addressed. We employed an electronic key word search, supplemented by full text reviews of each plan to complete a content analysis of the CCC plans. Capacity is explicitly addressed in just over half of the plans (53%), generally from a conceptual point of view, with few specifics as to how capacity will be developed or enhanced. Roles and responsibilities, timelines for action, and measurements for evaluation of capacity building are infrequently mentioned. Almost all (92%) of the 40 up-to-date plans address sustainability on at least a cursory level, through efforts aimed at funding or seeking funding, policy initiatives and/or partnership development. However, few details as to how these strategies will be implemented are found in the plans. We present the Texas plan as a case study offering detailed insight into how one plan incorporated capacity building and sustainability into its development and implementation. Training, technical assistance, templates and tools may help CCC Coalition members address capacity and sustainability in future planning efforts and assure the inclusion of capacity building and sustainability approaches in CCC plans at both the state, tribal, territorial and jurisdiction levels

Comparison of cancer survival trends in the United States of adolescents and young adults with those in children and older adults.

BackgroundWith prior reports indicating a lack of progress in survival improvement in older adolescents and young adults (AYAs) aged 15 to 39 years with cancer compared with both younger and older patients with cancer, the current analysis provides an update of survival trends of cancers among AYAs, children, and older adults.MethodsData from the National Cancer Institute Surveillance, Epidemiology, and End Results database for 13 regions were used to ascertain survival trends of the 34 most frequent cancers diagnosed in AYAs compared with children and older adults.ResultsAs of 2002 through 2006, the 5-year relative survival rate for all invasive cancers in AYAs was 82.5% (standard error, 0.2%). In AYAs, 14 cancers demonstrated evidence of a statistically significant improvement in their 5-year relative survival since 1992. Survival improved less in AYAs than in children for acute myeloid leukemia and medulloblastoma. Fourteen cancers had survival improvements that were found to be less in AYAs compared with older adults, including hepatic carcinoma, acute myeloid leukemia, high-grade astrocytoma, acute lymphocytic leukemia, pancreatic carcinoma, low-grade astrocytoma, gastric carcinoma, renal carcinoma, cancer of the oral cavity and pharynx, Hodgkin lymphoma, ovarian cancer, fibromatous sarcoma, other soft tissue sarcoma, and thyroid carcinoma.ConclusionsImprovements in the survival of several cancer types that occur frequently in AYAs are encouraging. However, survival does not appear to be improving to the same extent in AYAs as in children or older adults for several cancers. Further investment in exploring the distinct biology of tumors in this age group, and of their hosts, must be a priority in AYA oncology

Comparison of cancer survival trends in the United States of adolescents and young adults with those in children and older adults.

BackgroundWith prior reports indicating a lack of progress in survival improvement in older adolescents and young adults (AYAs) aged 15 to 39 years with cancer compared with both younger and older patients with cancer, the current analysis provides an update of survival trends of cancers among AYAs, children, and older adults.MethodsData from the National Cancer Institute Surveillance, Epidemiology, and End Results database for 13 regions were used to ascertain survival trends of the 34 most frequent cancers diagnosed in AYAs compared with children and older adults.ResultsAs of 2002 through 2006, the 5-year relative survival rate for all invasive cancers in AYAs was 82.5% (standard error, 0.2%). In AYAs, 14 cancers demonstrated evidence of a statistically significant improvement in their 5-year relative survival since 1992. Survival improved less in AYAs than in children for acute myeloid leukemia and medulloblastoma. Fourteen cancers had survival improvements that were found to be less in AYAs compared with older adults, including hepatic carcinoma, acute myeloid leukemia, high-grade astrocytoma, acute lymphocytic leukemia, pancreatic carcinoma, low-grade astrocytoma, gastric carcinoma, renal carcinoma, cancer of the oral cavity and pharynx, Hodgkin lymphoma, ovarian cancer, fibromatous sarcoma, other soft tissue sarcoma, and thyroid carcinoma.ConclusionsImprovements in the survival of several cancer types that occur frequently in AYAs are encouraging. However, survival does not appear to be improving to the same extent in AYAs as in children or older adults for several cancers. Further investment in exploring the distinct biology of tumors in this age group, and of their hosts, must be a priority in AYA oncology