Implementation and Evaluation of an Expanded Bilingual Electronic Symptom Management Program across a Multi-site, Fully-integrated Comprehensive Cancer Center

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Project Summary Physical and functional symptom burden is high among cancer survivors and is an ideal target for chronic care management. Cancer-related physical and functional side effects (PFs) include joint pain, fatigue, muscle weakness, loss of range of motion, altered skin sensation and integrity, postural abnormality, and lymphedema. Cancer survivors lack the knowledge and skills to prevent, detect, and manage PF side effects. Our research shows that a majority of cancer survivors report 3 or more long-lasting PFs and that rehabilitation services are under-utilized to treat them. Cancer rehabilitation interventions can reduce PFs and support functional ability. However, our work shows that cancer survivors lack receptivity to and misunderstand the benefits of cancer rehabilitation – even among those with cancer-related disability. Oncology providers also lack system support for timely identification of PFs and referral to rehabilitation. Usual cancer care lacks ownership for effective surveillance and management of PFs that can be done without interrupting clinical flow and overburdening providers and patients. Early rehabilitation (pre-hab) could facilitate ownership of PFs by educating patients on early detection and self-management of PFs, but this approach is completely absent from usual cancer care. The parent grant has developed the Northwestern Medicine Patient Reported Outcome (NMPRO) symptom monitoring system that prospectively monitors PFs severity with the Patient Reported Outcome Measurement Information System - Physical Function (PROMIS-PF) survey. With this Diversity Supplement, we will be able to: 1) leverage the parent grant to map the development of PFs across different cancer patient populations; 2) develop a learning health systems mechanism to support oncology providers to match the right patient, at the right time, with the right rehabilitation service, in the right location (4Rs Referral System); and 3) obtain stakeholder feedback about implementation and dissemination strategies for multi-level (patient, provider, community, system) prevention, detection, and management of cancer-related PFs and the development of risk stratification models for rehabilitation referral. The results from this supplement will inform the planned R01 resubmission to the NCI to test the combination of NMPRO + 4Rs + pre-hab in a large-scale randomized controlled trial. Our Specific Aims are: Aim 1: Map the trajectory and identify risk factors for development of physical and functional impairment and for cancer rehabilitation services utilization from the point of cancer diagnosis through at least the first year after diagnosis; Aim 2: Modify NMPRO to provide a decisional support mechanism for early and timely cancer rehabilitation referral in response to electronic health record alerts generated in the parent study; Aim 3: Identify realistic implementation, dissemination, and adaptation strategies for future hybrid effectiveness trials of pre-habilitation interventions for different cancer patient populations.