Development of a Pediatric Screening Tool for Diabetic Peripheral Neuropathy

Background: Because Diabetic Peripheral Neuropathy (DPN) is presumed uncommon in youth, it has not been routinely assessed in pediatric endocrine practices in the United States. International researchers have reported a 5-87% prevalence of DPN in youth. In a previous study, we demonstrated that of the children who screened positive for DPN, 55% were diagnosed with DPN by a neurologisteven some with good diabetes control and short diabetes duration. Therefore, screening for all children with diabetes is key in the diagnosis of DPN. Previous pediatric DPN studies utilized adult neuropathy screening instruments. To advance the state of the science, a pediatric DPN screening tool is needed. Aims: To develop a conceptually grounded, developmentally appropriate DPN questionnaire screening tool for evaluating youth with type 1 diabetes. Methods: A pediatric DPN conceptual framework was developed through a literature review and interviews with 5 diabetes content experts and 16 youth (aged 8-21). Initial item pools were informed by a systematic review of existing DPN measures and iteratively refined through cognitive interviews with 16 children. Results: Experts supported a DPN conceptual framework comprising three dimensions: pain, paresthesia, and anesthesia. Children confirmed these experiences and identified terms that described the symptoms in patientcentered language (e.g., “buzzing”). Based on child input and review of 15 existing adult DPN measures, we generated an initial item pool of 46 unique item concepts. Upon completion of the cognitive interviews, 16 items were deleted from the initial pool, 3 items revised and retested, and 27 items retained in their original form. The final item pool for this DPN tool is 30 items. Conclusions: Children with type 1 diabetes experience a range of DPN symptoms measurable by self-report. Significant modifications to adult items were added to ensure the content validity, understandability and relevance of a DPN screening tool for children. Future research will focus on evaluating the psychometric properties of the instrument. Clinical Implications: This tool is the first DPN screening tool for the pediatric population-and pending psychometric validation, will enable children at risk for, or in the early stages of DPN, to be more promptly identified.