Rebecca Hazen

Primary brain tumors are a complex and challenging disease. These tumors are rare and difficult to treat, and result in a significant burden on patients and their families. These patients will experience a wide range of neurological symptoms, as well as deficits and declines in cognitive and functional abilities as they progress through the disease and treatment process. For these patients, prognosis is often poor, as recurrence is common and complete cure for most malignant brain tumors is typically not possible.

From the time of diagnosis through treatment and follow-up, patients with primary brain tumors and their caregivers face many challenges and uncertainties as they navigate the healthcare environment and take on new roles and responsibilities in the care process. Despite a recent increase in the use of personal technologies to support health-related activities, there are very few tools and technologies currently available to support the unique needs of this patient population. There has been little research conducted to study the role of technology in health and daily life for these individuals, and to explore the potential for future design and development to reflect the needs and abilities of this small and challenging patient population. These gaps represent an opportunity for research and design, leveraging the insights and experiences of current patients and caregivers in informing the design of tools and technologies to support future patients and caregivers.

In this dissertation, I investigated the experiences, challenges, and needs of patients with primary brain tumors and their caregivers and in working towards designing and developing tools and technologies to address needs surrounding tracking, understanding, managing, and communicating symptom, side effect, and other health information. I engaged patients, caregivers, and clinicians in semi-structured interviews to build an in-depth understanding of the current situation, and worked alongside patients and caregivers as partners in designing a prototype of a brain tumor specific smartphone and tablet application. I then evaluated the resulting high-fidelity prototype with patients, caregivers, and clinicians to explore functionality and usability, and further understanding of how this tool could be implemented and used to support these and future users throughout treatment and follow-up.