OBJECTIVES

To examine the incongruence between the responses of people with Type 2 diabetes to the individual items and response options of the Diabetes Distress Scale and their actual lived experiences of diabetes-related distress.

METHODS

Convenience sampling was used to recruit people with type 2 diabetes with a duration of two years or more. Six cognitive interviews using video conferencing technology were conducted (4 women and 2 men; Age 37-64 years; diabetes duration 2-30 years). Participants were asked to read the directions and provide feedback based on scripted probes, followed by spontaneous probing where necessary. This procedure was applied individually to the directions and to three randomly selected items and response options from the Diabetes Distress Scale. Interviews were audio recorded and transcribed verbatim. Transcripts were coded (1) Reformulation: Respondents reformulated the questionnaire’s directions and items in a way which suited them to answer the item. (2) Challenging: Respondents challenging the directions and items as problematic, unanswerable, irrelevant and or condescending; (3) Respondents ability to match experiences with item response options.

RESULTS

Analysis revealed a number of key findings:

1. Informants are not willing form-fillers, always ready to fully engage with pre-prepared questionnaire items
2. Informants are not necessarily transparent in the provision of required information, but rather navigate through the questionnaire items within the context of their own life experiences, while choosing the options provided by the questionnaire.
3. Informants use a number of strategies to map their life experiences to pre-prepared questionnaire items.

CONCLUSIONS

Patient reported outcome measures such as the Diabetes Distress Scale are generally constructed within a positivist paradigm. This can create the potential for tensions between informants experience of living with diabetes and the questionnaire’s items and response options to which informants need to map those experiences to.