Using Participatory Methods to Develop the Prediabetes-Related Stress Scale (PRSS)

BackgroundPrediabetes is a risk factor for type 2 diabetes. The transition from prediabetes to type 2 diabetes is inequitable, with Latinos reporting an increased risk than other groups. Stress can affect this transition; however, we have no means of measuring prediabetes-related stress.Research Design and Study SampleWe used group concept-mapping, a participatory mixed-methods approach to collect data from English- and Spanish-speaking Latino adults (18+ years old) living with prediabetes, or clinical providers, in the United States. Participants were invited to multiple activities. First, brainstorming around focal questions about the stress of prediabetes diagnosis and management. Second, individually sorting 86 brainstormed statements into like groups, and rating these statements based on perceived importance. Third, interpreting quantitative results. Post-concept mapping, we invited participants to complete cognitive interviews of the initial English and Spanish versions of the scale.ResultsForty participants engaged in one or more activities. Results from the sorting and rating activities resulted in 10 clusters that reflect how participants grouped the 86 statements. The clusters were shared with participants to support the interpretation of the data. Cognitive interviews revealed participant suggestions to improve comprehension of instructions, response options, and items. This iterative process resulted in a 29-item scale developed in English and Spanish.ConclusionWe centered participant experiences to create the first scale that focuses on the emotional health related to prediabetes diagnosis and management. This scale can support diabetes prevention research by measuring prediabetes-specific stress and support clinical interactions to inform tailored conversations between patients and providers.