Background

In patients with COPD, questionnaires are used to monitor COPD health status. The use of these questionnaires demands (health) literacy. The numbers of problematic and limited health literacy vary internationally between 29%-62% and may subsequently result in poor health status assessment.

Aim

To develop and validate a modified version of the CCQ which is literacy insensitive.

Methods

Items of the CCQ were rephrased, complemented with graphics, and optimized through interviews with 13 COPD patients with low (health) literacy, resulting in the CCQgraphic (CCQg)(fig1). Validation was executed in patients with stable COPD with adequate health literacy.  Test-retest reliability was tested in patients with limited health literacy.

Results

In the adequate health literacy group (n=64) concordance of CCQg and CCQ was 0.88 (95% CI: 0.82-0.92). Correlation with 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 CCQ. Test-retest reliability in limited health literacy group (n=25) was high, CCC =0.93 (95% CI: 0.86-0.97). Overall opinion was positive: 88% of participants thought of the CCQg as equal or better than the CCQ.

Conclusion

We developed a validated alternative to CCQ for all patients with COPD introducing a literacy insensitive intervention and reduced the gap between patient abilities and system demands.