254 - Associations between Usage of a Cloud-based Longitudinal Care Plan and Patient- and Family-Centered Outcomes for Children with Medical Complexity

Poster Number: 254
Publication Number: 254.77

Background: Cloud-based care planning systems (e.g., care plans) to coordinate care across healthcare providers and settings have become increasingly prevalent for children with medical complexity (CMC). However, significant gaps remain in our understanding of how these systems impact patient-centered outcomes for CMC. Leveraging a user-centered design approach, we developed Cloud Care, a cloud-based system consisting of a “living” care plan with an email alert system to remind CMC guardians and providers to review and update information within the care plan.

Objective: To examine associations between Cloud Care usage by care team members of CMC and patient/family-centered outcomes.

Design/Methods: We conducted a feasibility study from May 2019 to August 2022 of CMC and their care team members (guardians and healthcare providers) who received access to Cloud Care during the study period. We collected usage data from Cloud Care web analytics and defined our independent variable as the number of unique accesses per month. Surveys were administered to guardians at the beginning and end of the study to collect patient/family-centered outcomes assess care coordination measures, health-related quality of life, and caregiver burden (Table 1). We used univariable linear regression models to examine associations between Cloud Care usage and each patient-centered outcome.

Results: We analyzed on 20 CMC and 180 care team members (Table 2). Average Cloud Care usage across CMC was 2.1 (standard deviation 1.2) unique accesses per month. Higher Cloud Care usage was significantly associated with improvement in Pediatric Integrated Care Survey (PICS) communication composite scores from baseline to follow-up (Table 3). Clinically, important improvement trends were noted for other PICS domains including team functioning and care management. Cloud Care usage was not significantly associated with other measured outcomes.

Conclusion(s): Higher care plan usage was associated with improved guardian perceptions of healthcare provider communication. Lack of significance for other measures may be due to insufficient power and findings may be related to unmeasured confounding during the COVID-19 pandemic. Additional research is needed to determine the value of these cloud-based care coordination systems for CMC.