Development of a youth-report measure of DPN symptoms: Conceptualization and content validation

AIMS: To develop a content valid youth-report measure of diabetic peripheral neuropathy (DPN) symptoms. METHODS: Semi-structured interviews with 5 clinicians and 15 youth aged 8–17 with diabetes were conducted to elicit and clarify youth’s DPN experiences. A systematic review of existing adult-report DPN symptom measures was conducted to identify item concepts representative of each experience. The concepts were transformed into items that were iteratively revised based on cognitive interviews (n = 13 youth aged 8–17) and readability analyses. RESULTS: Clinician and youth interviews supported a tripartite conceptual framework of youth DPN symptoms: paresthesia, pain, and anesthesia. Forty-eight youth-report items were generated to represent DPN symptoms identified through the semi-structured interviews and a systematic review of 13 symptom questionnaires for adults. Of these, 23 were eliminated and 3 were revised based on cognitive interviews conducted with youth. The remaining 25 items were on average, written at a 3rd grade reading level. CONCLUSIONS: This study is the first to generate a content valid self-report measure of youth’s lived experiences with DPN that uses developmentally appropriate terminology. With further psychometric testing, the measure could be used to advance research on pediatric DPN and enhance clinicians’ capacity to identify the condition in childhood.