The Clinical Definition of Children With Medical Complexity: A Modified Delphi Study

Abstract

BACKGROUND AND OBJECTIVES Children with medical complexity (CMC) comprise a subgroup of children with severe chronic diseases. A conceptual definition for CMC has been formulated, but there is no agreement on criteria to fulfill each of the 4 proposed domains: diagnostic conditions, functional limitations, health care use, and family-identified needs. Our objective with this study was to identify a standardized definition of CMC. METHODS Through a scoping review of the CMC literature, we identified potential criteria to fulfill each domain. These were incorporated into an electronic survey that was completed by a geographic and professionally varied panel of 81 American and Canadian respondents with expertise in managing CMC (response rate 70%) as part of a 4-iteration Delphi procedure. Respondents were asked to vote for the inclusion of each criterion in the definition, and for those with quantitative components (eg, hospitalization rates), to generate a consensus threshold value for meeting that criterion. The final criteria were analyzed by a committee and collapsed when situations of redundancy arose. RESULTS Of 1411 studies considered, 132 informed 55 criteria for the initial survey, which was presented to 81 respondents. Consensus for inclusion was reached on 48 criteria and for exclusion on 1 criterion. The committee collapsed those 48 criteria into 39 final criteria, 1 for diagnostic conditions, 2 for functional limitations, 13 for health care use, and 23 for family needs. CONCLUSIONS These results represent the first consensus-based, standardized definition of CMC. Standardized identification is needed to advance understanding of their epidemiology and outcomes, as well as to rigorously study treatment strategies and care models.