Grant: Travel Awards - Institute Community Support

Introduction: A learning health system is one in which knowledge generation is embedded into the clinical practice of medicine and becomes a product of healthcare delivery. Children with medical complexity (CMC) are only 0.7% of pediatric patients but are the most costly in pediatrics, with the most fragile medical status, hence they stand to benefit greatly from a learning health system approach. Health conditions in CMC are diverse, thus successful outcomes are focused on the experience of care as opposed to biomedical endpoints. Caregivers of CMC and their clinicians identified the need for CMC-relevant tools to assess `satisfaction with medical technology' and `caregiver experience of feeding their child'. Such patient-reported experience measures (PREMs) are often developed without the experiences of front line stakeholders or thought of how they will be incorporated into a learning health system. Objective: The overarching goal is to develop CMC-specific PREMs for use in a learning health system. In phase I, (this study), content (items) for the tool will be developed. In phase II, the tool will be trialed using real-time feedback to be studied for use in systems improvement. Methods: Interviews will be performed on CMC caregivers as elicited by their peers (trained CMC caregivers) in one arm of data collection and by clinicians in another. Interviews will be conducted until data saturation is reached and will be analyzed independently in each arm of the study using content analysis and a common code book for item generation. Results: Content from clinician and peer elicited interviews respectively will be compared and contrasted, all of which will contribute to the field test of the measure in a subsequent phase. Conclusion: Development of PREMs is a priority for creating a learning health system in CMC, yet needs to incorporate caregiver and clinician perspectives.