Abstracts

Rationale: The ketogenic diet (KD) team at Boston Children’s Hospital (BCH), cares for medically complex patients typically followed by multiple specialty providers. Care involves collaboration with other providers for optimal management. We report some outcomes of a quality improvement (QI) project focused on improving care integration, in collaboration with the BCH Integrated Care (IC) Program. We define Integrated Care as the seamless provision of health care services, from the perspective of the patient and family, across the care continuum. Methods: This pre/post intervention study included administering the Pediatric Integrated Care Survey (PICS) to 30 caregivers recruited over a period of 13 weeks. PICS measured domains of care integration: Access to Care, Communication with Care Team Members, Family Impact, Care Goal Creation/Planning, and Team Functioning/Quality. Participants were recruited in clinic, and an electronic/paper survey was sent post visit. Results of the PICS informed design and implementation of an action grid (AG) to be used by the care team and ultimately by caregivers. The AG enables team members to track action items that result from in-person visits- including medical and non-medical care coordination. Following full implementation of the AG, post-intervention PICS will be administered. The AG will be shared with caregivers via the hospital patient portal. Results: Data from each domain, and interventions were selected based on low scores in “bottom 2 boxes”, using top box methodology. Sample data includes the following:17% reported that care team members rarely or never explained who was responsible for different parts of care. 39% reported that care team members rarely or never talked to them about things that make it hard for them to take care of their child’s health.23% reported that team members did not create short-term care goals, (up to 6 months in the future.)Implementation of the AG -The AG is created for each patient on day of clinic, includes items specific to team functioning, including: problems/goal, action, who is responsible, time line for action, contingency plan, team member responsible for action item (AI), and note of completion. Measures - Quality measures include: presence of at least one AI, presence of an accountable team member linked to at least one AI, presence of timeline linked to at least one AI, and presence of contingency plan linked to at least one AI. Between November 2016 and May 2017, a total of 116 AGs were created. 98.3% had at least one AI, 96% had and accountable team member attached to at least one AI, 90% had timeline attached to at least one AI and 31% had contingency plans associated with at least one AI. Conclusions: Family experience data describes uncertainty by caregivers about goals of treatment as well as roles and responsibilities for care. There is a desire for increased discussion related to challenges of caring for children on KD. The AG is the first step in addressing the confusion regarding responsibility and establishing and communicating shared responsibility and accountability for AIs. By clearly delineating AIs in each multidisciplinary domain, the AG provides clarity that will assist in understanding and addressing the challenges experienced by caregivers. The goal-driven AG assists in formulating near and longer term goals between patient/caregivers and care-team. We anticipate that communication via BCH patient portal will increase dialogue related to these challenges and goals. Funding: None