The long-term objective is to develop a highly secure, patient-friendly system for patients living with advanced cancer and their family caregivers to enable at-home symptom management and surveillance; to provide just-in-time, tailored, self-care education; to measure patient-reported quality of life and outcomes specific to palliative care; to generate patient-consented referrals based on patient responses; and to feed forward relevant information to the palliative care team, oncology team, and specialists to support clinical decision making. Phase I objectives are first to define the system and process requirements for content (questionnaires, algorithms, reports, education content tailored to advanced cancer patients and their families, caregivers, and providers), technical issues (functional system requirements), and process (roles, tasks, dependencies, and workflow). The second main objective is to develop and evaluate a prototype of the proposed design. This will include a web-based, highly secure, user-friendly interface tailored to patient and proxy preferences; tailored surveys to collect health history, symptoms, and health-related quality of life measures directly from advanced cancer patients and proxies; simple, clinician-approved instructions, advice, and education tailored to patient- and proxy-preferred formats; clinician entry for treatment protocols, patient observations, patient communication; and reports summarizing patient entry, longitudinal scores, red flags, and protocols for appointments and monitoring of at-home entry.
NIH Spending Category: Aging; Basic Behavioral and Social Science; Behavioral and Social Science; Bioengineering; Cancer; Clinical Research; Health Services; Networking and Information Technology R&D
