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

Q: What problem does the CCQgraphic (CCQg) address?

Limited health literacy can make standard COPD health-status questionnaires harder to complete consistently, weakening health status assessment using the CCQ. CCQg is designed to be literacy-sensitive for this population.

Q: How was CCQgraphic (CCQg) developed?

CCQ items were rephrased and complemented with graphics. The tool was then optimized through semi-structured interviews with patients with limited health literacy and co-designed with a stakeholder group.

Q: How did CCQg perform compared with the original CCQ?

Concordance between CCQg and CCQ was high, with a concordance value reported as 0.88 (95% CI 0.82–0.92). Test-retest reliability in limited health literacy was also high (CCC = 0.93, 95% CI 0.86–0.97).

Sep 29, 2026

Uploaded by Mia

Chronic obstructive pulmonary disease (COPD) patients with limited health literacy face challenges in assessing health status using standard tools such as the Clinical COPD Questionnaire (CCQ). The study developed and validated a literacy-sensitive, graphic modification of the CCQ (CCQgraphic, CCQg) co-designed with stakeholders. CCQ items were rephrased and supplemented with graphics, then optimized via interviews with patients with limited health literacy. Results showed strong concordance with CCQ and high test-retest reliability, with relationships to CAT maintained across literacy levels.

LanguageEnglish

CategoryHealthcare

FormatPDF

Pages8

Reading Time20 min

AccessFree to download

Introduction

Health status assessment in COPD and CCQ

Health literacy and its impact on patients with COPD

Need for literacy-sensitive questionnaire design

Methods (implied)

Development of CCQgraphic (CCQg)

Optimization through interviews

[www.nature.com/npjpcrm](www.nature.com/npjpcrm) ARTICLE OPEN Health status in patients with limited health literacy; development and validity of the Clinical COPD Questionnaire graphic (CCQg) Erlijn Tiel Groenestege 1,2 ✉ , Bea Sloothaak3, Iris van Geer-Postmus3, Aimée van de Maat3, Ellen van Heijst4, Natascha Huijser van Reenen5, Kaying Kan3, Marjan Kerkhof3, Cindy Lentjes6, Thys van der Molen3,7, Maret Zonneveld8, Johannes in ’t Veen1,9 and Janwillem Kocks3,7,10,11 | | | | | --- | --- | --- | | | 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. | | | | npj Primary Care Respiratory Medicine (2026)36:1; [https://doi.org/10.1038/s41533-025-00454-6](https://doi.org/10.1038/s41533-025-00454-6) | | | | | | . INTRODUCTION Chronic Obstructive Pulmonary Disease (COPD) is a heterogeneous lung condition characterized by chronic respiratory symptoms due to abnormalities of the airways (bronchitis, bronchiolitis) and/or alveoli (emphysema) that causes persistent, often progressive, airﬂow obstruction1,2. The disease course is unpredictable: medical management is based on current health status and exacerbation severity and frequency. The GOLD strategy document suggests four tools to assess symptom status in daily clinical practice, including the Clinical COPD Questionnaire (CCQ)2. The Clinical COPD Questionnaire (CCQ) is a multidimensional questionnaire and is used to measure health status2–4. The CCQ comprises ten items in three domains (symptoms, mental status, functional status, and shows the disease course over time when completed on a regular base3. The patient is assumed to possess a certain level of (health) literacy in order complete this, or anyother questionnaire measuring COPD health status. The CCQ is worldwide used and available in more than 80 languages.([https://www.ccq-questionnaire.org](https://www.ccq-questionnaire.org)) Health literacy is the ability of individuals to obtain, understand, appreciate and use information when making health related decisions5. The numbers of low and limited health literacy vary internationally between 29–62%6–8. The deﬁnition of health literacy is a broad concept and developing at a fast pace. It is multidimensional and comprises patient characteristics, but has an overlap with socio-demographic characteristics. Patients with COPD with low and limited health literacy suffer from a higher burden of disease, more frequent hospital admissions, more emergency department presentations are less likely to ﬁnish pulmonary rehabilitation and have poorer disease control compared to patients with COPD with adequate health literacy levels9–11. 19.7% of all adults had a low level of reading skills, according to the latest program for international assessment

FAQs

What problem does the CCQgraphic (CCQg) address?

Limited health literacy can make standard COPD health-status questionnaires harder to complete consistently, weakening health status assessment using the CCQ. CCQg is designed to be literacy-sensitive for this population.

How was CCQgraphic (CCQg) developed?

CCQ items were rephrased and complemented with graphics. The tool was then optimized through semi-structured interviews with patients with limited health literacy and co-designed with a stakeholder group.

How did CCQg perform compared with the original CCQ?

Concordance between CCQg and CCQ was high, with a concordance value reported as 0.88 (95% CI 0.82–0.92). Test-retest reliability in limited health literacy was also high (CCC = 0.93, 95% CI 0.86–0.97).

Sep 29, 2026

Uploaded by Mia