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.
