Health status in patients with limited health literacy; development and validity of the Clinical COPD Questionnaire graphic (CCQg)

Patients with Chronic Obstructive Pulmonary Disease (COPD) often experience limited health literacy, hampering health status assessment via standard questionnaires like the Clinical COPD Questionnaire (CCQ). We aimed to develop and validate a modified, literacy-sensitive version, the CCQgraphic (CCQg), for all patients with COPD co-designed with a large stakeholder group. CCQ items were rephrased and complemented with graphics, followed by optimization through semi-structured interviews with patients with limited health literacy. In adequate health literacy (n = 64) concordance of CCQg and CCQ was 0.88 (95% CI: 0.82-0.92). Correlation with the COPD Assessment Test (CAT) was 0.81 (95% CI: 0.70-0.88). Agreement showed a mean bias of 0.22 (95% CI: 0.10-0.34, P < 0.001) with higher scores on mental and functional domains compared to the original CCQ. Test-retest reliability in limited health literacy (n = 25) was high, CCC = 0.93 (95% CI: 0.86-0.97). The majority (88%) rated the CCQg as equal or better to the original. The CCQg offers a validated, literacy-sensitive tool, narrowing the gap in health status assessment for patients with COPD with varying literacy skills.