A review of measures of self-management of type 1 diabetes by youth and their parents

PURPOSE The purpose of this paper was to identify and critique relevant existing instruments designed to measure self-management of type 1 diabetes in children and adolescents. METHODS Literature on the self-management of type 1 diabetes in children and adolescents was systematically searched to identify instruments measuring self-management. After eliminating instruments that measured only one aspect of self-management, those published prior to DCCT findings, and those for which little information was available, 6 instruments were identified for review. Each instrument is discussed in terms of history and description of the instrument, definitions, psychometrics, findings from studies using the instrument, availability of the instrument, and evaluation. RESULTS All of the instruments measure some of the activities of self-management; 1 expressly measures self-management; 1 measures the frequency of various self-care activities, and 4 measure adherence to prescribed diabetes regimens. Only 1 instrument comprehensively assesses the process of self-management. None measure the goals of self-management. CONCLUSIONS Instrument development has been hindered by the lack of clarity concerning the concept of self-management of type 1 diabetes in children and adolescents. Existing measures need to be further developed and new measures need to be designed.