Promoting Safe Transitions from Hospital to Home for Children with Medical Complexity: A Health Literacy-Informed and Family-Centered Approach

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PROJECT SUMMARY/ABSTRACT Children with medical complexity (CMC), or those with multiple chronic conditions, progressive conditions, or technology dependence, are at high risk for post-hospitalization morbidity. Despite representing 1% of children in the US, CMC account for 1/3 of pediatric hospital expenditures; 30-day readmission rates are ~20%. Research on post-discharge morbidity (e.g., adverse drug events, infections, unanticipated visits) has focused on adults. Few studies have assessed strategies to reduce post-discharge morbidity in CMC. Such strategies must account for 1) factors distinct to children (e.g., liquid medications, recognizing symptoms in children who cannot express what is wrong) and 2) specific needs of CMC (e.g., medical equipment, knowing which of many providers to contact, managing multiple chronic medications, complex family/household dynamics). Inadequate provider- parent communication and low parent health literacy contribute to poor comprehension of and adherence to discharge instructions, increasing risk for post-discharge morbidity. Despite recommendations from multiple national organizations for evidence-based, health literacy-informed interventions to improve communication processes, to date, a health literacy-informed approach to address post-hospitalization morbidity for CMC has not been used while also incorporating principals of family dynamics. The primary objective of this application is to support Dr. Glick’s goal of becoming an independent investigator with the aim of improving 1) parent comprehension of/adherence to discharge instructions and 2) post-discharge outcomes for CMC. This goal will be achieved through training from an expert multidisciplinary mentorship team and formal coursework. He will gain advanced skills in 1) qualitative/mixed method research, 2) family dynamics, 3) user-centered design, and 4) implementation science/design and evaluation of complex interventions. Dr. Glick will accomplish his goals at NYU School of Medicine through the following 3 aims: In Aim 1, Dr. Glick will use qualitative methods to examine barriers/facilitators for a) parents in comprehension of/adherence to discharge instructions and b) pediatricians in providing optimal discharge education for CMC. In Aim 2, Dr. Glick will use Aim 1 findings, multiple rounds of usability testing, multi-disciplinary workgroups, a national sample of discharge instructions for CMC, and an existing tool designed to improve parent adherence to discharge instructions for common pediatric diagnoses to inform the design of his new tool for CMC. In Aim 3, Dr. Glick will utilize a randomized controlled trial to examine this tool’s efficacy in improving parent comprehension of and adherence to discharge instructions and reducing post-hospitalization morbidity for CMC. Successful completion of this project will lead to an R01 application to test the efficacy of the intervention, now linked to the electronic health record, in improving parent comprehension of/adherence to discharge plans and reducing post-hospitalization morbidity for CMC.