PC3085: Pediatric Patient-reported Outcomes in Critically Ill Children: Understanding Context, Barriers, and Facilitators to Implementation

Background: Patient reported outcomes (PROs) facilitate patient-physician communication, improve clinician awareness of symptoms, and promote shared decision making. Within pediatrics, PROs have been used in outpatient sub-specialty clinics and demonstrate longitudinal responsiveness in children with chronic diseases, such as inflammatory bowel disease and type 1 diabetes (T1D). Recently, PROs showed promise in bridging inpatient and outpatient care for patients with sickle cell disease or certain types of cancer. Despite this, PRO usage has not been widely adopted in the pediatric critical care setting. Communication is critical in the pediatric intensive care unit (PICU) setting and PROs can provide additional information to the care team. The goal of this study is to determine facilitators and barriers to the implementation of Patient Reported Outcomes Measurement Information System (PROMIS) instruments in the PICU, specifically focused on patients with T1D admitted for diabetic ketoacidosis.

Methods: Using a qualitative description approach we engaged pediatric intensive care physicians, nurses, endocrinology providers, and patients with T1D and their proxies in brief ( < 30 minute) semi-structured interviews. Domains from the Consolidated Framework for Implementation Research (CFIR), an implementation science framework, informed our interview guide and analysis. Interviews were recorded and transcribed. Data analysis entailed an iterative process of open coding and use of the framework method for qualitative analysis. Individual coders separately coded interviews, and a codebook was created. Codes were applied to CFIR constructs, and themes were aggregated from individual codes within each CFIR domain.

Results: Twenty subjects were interviewed (13 providers and 7 patients and proxies). Findings demonstrated that providers understood reasons for patient admissions and praised standardized ICU patient care. They agreed on a tension for change in current practice . They identified several organizational and individual barriers to PRO use including electronic access, knowledge to understand and interpret instrument results, workflow responsibilities, and time. Patients identified communication gaps with providers, expressed prior experience with/ knowledge of healthcare surveys, and expressed comfort with the processes of PRO instrument administration. From these themes (Table 1), specific actions were identified which may better facilitate the implementation of PROs for this patient population.

Conclusion: Implementation of inpatient PROs faces several barriers. Specifically, many providers and patients were unfamiliar with PROMIS tools. Providers agreed that PROMIS measures could be useful, however were concerned over the interpretation and ability to easily incorporate these results into their workflow. Patients were eager to use these tools to improve shared communication. The tracking of psychosocial health, general health, and family relations were thought to be helpful PROMIS tools in the clinical context of T1D admitted for DKA. Understanding these features is a crucial first step to implementing PROs in the pediatric critical care setting.