Definitions and operationalizations of pediatric chronic patients: a scoping review

There are significant inconsistencies in the description of different chronic pediatric patient categories, their corresponding definitions and operationalizations. These inconsistencies hamper shared understanding in clinical practice, research and policy-making. To move forward in this field, this scoping review aimed to provide an overview of these definitions and operationalizations. Medline, Embase, PsycINFO, the Cochrane library and CINAHL were searched for studies published between 2019 and 2023, with definitions of patient categories referring to children aged 0-18 years with a chronic condition. Studies selection and data extraction were conducted independently by multiple reviewers. The data synthesis emerged from an iterative process conducted by the research team. Of the 3570 studies, 522 studies contained a definition of a patient category and were included in the review. In 428 studies (82%), 11 definitions were identified, describing eight commonly used patient categories. In 177 (34%) studies, the definition of the pediatric patient category was operationalized. Fifteen different operationalization tools were found.

Our review reveals the heterogeneous formulation and interchangeable use of definitions of pediatric chronic patients. A minority of studies reported the use of operationalization tools. Achieving consensus on factors that define different patient categories, along with greater uniformity in operationalization tools is needed to enhance the quality and comparability of research, support the quality of clinical care, and enable more efficient use of healthcare resources.

• There is significant heterogeneity in definitions and operationalizations of different chronic pediatric patient categories.

• This scoping review provides an overview of the existing definitions and operationalization tools. • Only a minority of studies report on the use of operationalization tools.