The Patient Journey for Children with Medical Complexity during Pandemic Era andits implications.

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Project Summary/Abstract CMC are a small proportion of children and youth with special health care needs that account for less than 1-5% of all children but consume over one third of health care resources. They are at increased risk of multiple and prolonged hospitalizations, inefficient use of healthcare resources, frequent medical errors, poor health outcomes, significant unmet needs for health services, and stress on family caregivers. This complexity and related problems have been and continue to be even further exacerbated by the COVID pandemic. The rise of the novel coronavirus (COVID-19) changed dynamics and contributed to a paradigm shift in the overall health care practice which will probably have long lasting impact and may be the “new normal”. In this exploratory study, our overarching goal is to understand how COVID-19 Pandemic impacted CMC care patient journey. We will capture the experience of multi stakeholders associated with CMC care including hospitalists, pediatrics outpatient providers, home nurses, CMC caregivers and patients. The findings will help the ongoing efforts to redesign and improve CMC care especially in the light of new challenges introduced by the COVID-19 Pandemic. The aims of the project are to: 1) Perform a multi-stakeholder 360-degree analysis of the COVID experience for CMC patients across different settings in their patient journey using qualitative and human factors techniques. 2) Quantitatively evaluate usefulness and experience of Telehealth use in CMC care, and 3) Evaluate the impact of pandemic on health outcome/utilization CMC using retrospective chart review. The research team is well positioned to address the proposed aims for the CMC population and thus guide identification of potential interventions to improve CMC care. This innovative, in-depth, and rich analysis of the CMC care patient journey during the pandemic using novel human factors methodologies will provide highly valuable information, not only for CMC, but also for other similarly complex care settings and patient populations.