Assessing patient and caregiver needs and challenges in information and symptom management: a study of primary brain tumors

Brain cancer is a devastating diagnosis characterized by significant challenges and uncertainties for patients and their caregivers. Although mobile health and patient-facing technologies have been successfully implemented in many patient populations, tools and technologies to support these users are lacking. We conducted semi-structured interviews with 13 patients and caregivers, investigating experiences, challenges, interests, and preferences for managing symptoms and health information. We found that although current technology use in health-related activities was minimal, participants reported being highly willing to use such technologies to capture and manage information, provided they were designed according to the needs, interests, and abilities of these users. Participants felt that such tools could benefit patient care activities, and help to address information challenges for both current and future patients and caregivers. We present findings surrounding these challenges, behaviors, and motivations, and discuss considerations for the design of systems to support current and future patients and caregivers.