Complexity of Documentation Needs for Children With Medical Complexity: Implications for Hospital Providers

Care coordination is a core component of pediatric complex care programs (CCPs) supporting children with medical complexity (CMC) and their families. In this study, we aim to describe the purpose and characteristics of clinical care notes used within a pediatric CCP.

We conducted observations of provider-family interactions during CCP clinic visits and 5 focus groups with members of the CCP. Focus groups were recorded and transcribed. Field observation notes and focus group transcripts were subjected to qualitative content analyses.

Four major themes help characterize clinical care notes: (1) Diversity of note types and functions: program staff author and use a number of unique note types shared across multiple stakeholders, including clinicians, families, and payers. (2) motivations for care note generation are different and explain how, why, and where they are created. (3) Program staff roles and configuration vary in relation to care note creation and use. (4) Sources of information for creating and updating notes are also diverse. Given the disparate information sources, integrating and maintaining up-to-date information for the child is challenging. To minimize information gaps, program staff devised unique but resource-intensive strategies, such as accompanying families during specialty clinic visits or visiting them inpatient.

CMC have complex documentation needs demonstrated by a variety of professional roles, care settings, and stakeholders involved in the generation and use of notes. Multiple opportunities exist to redesign and streamline the existing notes to support the cognitive work of clinicians providing care for CMC.