Utilizing design theory to create a patient-centered palliative care model in cancer survisorship care.

Abstract

164 Background: Palliative medicine (PM) is an essential component of survivorship care from point of diagnosis. While PM is philosophically committed to supporting patient and family survivorship goals, very few programs incorporate patient and family input into the formation of a patient-centered model of care for symptom management and quality of life. We utilized design theory to develop novel interventions for primary and specialist PM delivery. Methods: Baseline data collected in Fall 2014 revealed a need for assistance navigating support services as well as barriers to PM integration including branding, lack of primary palliative skills, and poor understanding of outcomes of PM integration. In February 2015, we convened a multidisciplinary group of 25 patients, family members, oncology clinicians and experts in patient experience and health services research, to evaluate current state data and formulate ideas for optimizing PM to support symptom management and quality of life. During a 1-day workshop, the group generated interventions for primary and specialist PM. Small teams were assigned to pilot projects based on these recommendations. Proposed solutions are being tested from July - October 2015. Results: The design team generated five focus areas for meeting patient needs and overcoming barriers: standard processes for access to PM, education on primary PM, rapid reporting of outcomes, relationship-building with referring clinicians, and improved access to primary and specialist palliative resources. Three interventions are being developed to address these: 1. A subspecialist “hub” that allows single referrals and streamlined access to supportive care, 2. a novel two-question probe about goals conducted by the oncologist, and 3. a peer support system between PM social work and nursing staff to proactively manage patients with complex needs. Conclusions: Patient and family-centered PM mandates a novel approach. Design theory allows for clear delineation of problem areas, generation of multiple solution sets, and rapid testing and refinement prior to large-scale adoption. A participatory design approach emphasizes user values and limitations and creates values-based solutions.