Cognitive testing of PAINReportIt in adult African Americans with sickle cell disease

PAINReportIt, a computerized version of the McGill Pain Questionnaire (Pain. 1975, 1:277-299), presents pain measurement items to responders in serial display screens accompanied by pop-up screens. In this study, we used cognitive interviews to examine further validity of PAINReportIt with 25 African Americans with sickle cell disease. The specific aims were to determine if the questions in the PAINReportIt program were relevant to and understood by African Americans with sickle cell disease and to describe the nature of the pain they experienced. Most study participants were enthusiastic and able to use the tool as intended and appreciated the comprehensiveness, detail, and multidimensionality of its pain data. For some screens, two to six participants' responses suggested some question understanding and interpretation issues, inability to retrieve the requested information, or technical issues. Their responses indicated that screens lacked sufficient specificity for the temporal nature of pain recurrence over a lifetime. The program captured both nociceptive and neuropathic aspects of sickle cell pain and provided detailed information on the location, intensity, quality, and pattern of pain experienced by participants. We recommend that future revisions to the PAINReportIt program address the temporal issues of measuring recurrent pain, resolve technological issues related to pop-ups, and simplify difficult words to better match the typical health literacy levels of patients. These revisions could further enhance the technological aspects, usability, and cultural appropriateness of the tool for African Americans with sickle cell disease.