A content validity and cognitive interview process to evaluate an Illness Perception Questionnaire for African Americans with type 2 diabetes

OBJECTIVE: The Illness Perception Questionnaire (IPQ) is the only available and empirically validated tool used to gain insight into patient illness beliefs. However, the IPQ has reliability and validity problems when used with African Americans (AAs) and needs to be culturally-adapted and validated for use with this group. This study aimed to utilize findings from focus groups to culturally adapt the IPQ for use in AAs with diabetes. Ten cognitive interviews among AAs with type 2 diabetes explored patients’ interpretation and understanding of the adapted IPQ. RESULTS: Forty-four new survey items were added to the IPQ. Twenty-nine of the forty-four items were determined as the appropriate number of questions to be tested because of time, and to reduce respondent burden. After the first round of interviews, an item-by-item review of the new items identified problems related to AA comprehension of certain items, their applicability, and wording/tone. Five items identified as problematic were related to AAs understanding of a cure for diabetes, their perception of how food influences their diabetes, how their identity as AAs influence diabetes control, and the dialogue about diabetes within their families and/or community. Findings support the newly developed illness perception questions as culturally specific to AAs with diabetes after being tested for content validity and participant understanding using cognitive interviews. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s13104-019-4342-9) contains supplementary material, which is available to authorized users.