Full Project 1: WeCanManage: An mHealth self-management tool to empower survivors with disabilities due to the long-term effects of cancer and its treatment

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ABSTRACT There are an estimated 16.9 million cancer survivors in the United States. Approximately 40% of cancer survivors live with long-term physical, cognitive, psychological and social consequences of cancer and its treatment, which can in turn lead to long-term disability. Research indicates that self-management interventions can help people, including those with cancer, acquire the knowledge and skills needed to manage symptoms like pain, fatigue, anxiety and decreased mood. Delivering self-management interventions via smartphone applications (also called mHealth apps) can get self-management tools in the hands of people who need them the most, including cancer survivors with disabilities. To date, no mHealth self-management apps have been developed to meet the needs of cancer survivors with disabilities. The purpose of this research and development study is to develop an innovative mHealth app, called WeCanManage (WCM), to empower cancer survivors with disabilities to proactively manage cancer and its consequences as a chronic condition. This community-based participatory research project will proceed in two phases. In phase I, we will use a user- centered design process to develop the WeCanManage tool in partnership with a team of survivor scientists (members of the grass-roots cancer survivor community) who will engage with the research team as co- researchers and co-developers of the WCM tool. In phase II, we will evaluate the feasibility, acceptance, and user satisfaction with a 4-week engagement period with the WeCanManage app among cancer survivors with disabilities (n=60). This rigorous development and evaluation process will lay the foundation for future clinical trial research. People with disabilities are an unrecognized health disparities population and are often excluded from the cancer health equity agenda. Indeed, cancer survivors indicate that their long-term disability needs are inadequately addressed across the cancer care and survivorship continuum. The WCM research project is an opportunity to enhance the cancer community’s understandings of this population and to develop evidence- informed interventions to better meet the needs of people with the ‘double whammy’ of cancer and disability. Rigorous research with people at the intersection of cancer and disability expands the Chicago Cancer Health Equity Collaborative’s impact on under-served communities and distinguishes it as a leader in inclusion and equity for all people, even those marginalized by their disability status.