Designing and Evaluating a Patient-Driven Application for Patients with Primary Brain Tumors

Abstract

From the time of diagnosis through treatment and follow-up, patients with primary brain tumors and their caregivers face a multitude of challenges and uncertainties. Many of these challenges and uncertainties have been attributed to the complexities of these rare and deadly tumors, coupled with the fact that there is still much to learn about the brain tumor patient experience, especially in terms of estimating prognosis, and understanding and predicting the impact of disease and treatment on these patients. These tumors, as well as the medications and treatments employed in battling this devastating disease, are often associated with severe symptoms and side effects ranging from seizures, headaches, nausea, and fatigue, to gross deficits in general cognition, changes in behavior and personality, and impairments in neurocognitive functions and abilities. In addition to challenges associated with managing and understanding these symptoms and side effects, patients and their caregivers are faced with new and often unfamiliar information and terminology, and must work to make informed decisions regarding treatments and medications in the presence of great uncertainty. Despite a recent increase in the use of personal technologies to support health-related care and self-management activities for a wide range of patient populations, there are very few tools and technologies currently available to support the needs of this unique and challenging patient population. In this dissertation, I investigate the challenges, needs, and experiences of patients with primary brain tumors and their caregivers in working toward designing and developing tools and technologies to support these individuals in tracking, understanding, managing, and communicating health information. Throughout this process, I engaged patients, caregivers, and clinicians in semi-structured interviews to build an in-depth understanding of current challenges and behaviors, and identify motivations, as well as preliminary recommendations and requirements for design going forward. I then used Participatory Design techniques to work alongside patients and caregivers as partners in creating a prototype of a brain tumor specific smartphone and tablet application. From these user-driven contributions, I then developed a high-fidelity prototype that was evaluated by brain tumor patients, caregivers, and clinicians to explore usability, functionality and benefit, and to further overall understanding of how this tool could be implemented and used to support these and future users throughout treatment and follow-up. Through this research, I contribute a greater understanding of the challenges, needs, and experiences of this unique patient population, as well as an investigation of current technology use in health and daily life. I compare and contrast patient, caregiver, and clinician perceptions of challenges, benefits, interests, and abilities regarding patient-driven self-tracking, management, and communication, and share my experiences in employing Participatory Design techniques in working alongside patients and caregivers throughout the research and design process. Finally, I discuss how my methods, findings, and experiences could impact future design and implementation of tools and technologies in this and other similarly challenging patient populations.