Development and application of a chronic kidney disease-specific health literacy, knowledge and disease awareness assessment tool for patients with chronic kidney disease in Taiwan

OBJECTIVES: This study aims to develop an assessment tool for health literacy and knowledge specific to chronic kidney disease (CKD) for use in examining the associations between health literacy, disease-specific knowledge and disease awareness among patients with CKD in Taiwan. DESIGN: An assessment tool in Mandarin and Taiwanese was developed based on patient input, panel discussions with experts and a literature review, and checked for validity and reliability in a pilot test. Formal data were collected through population-based sampling with a set quota according to region and hospital accreditation level. Cross-sectional data were collected to confirm the reliability and validity of the assessment tool. Levels of health literacy, disease knowledge, and disease awareness were then reported and analysed. SETTING: Sample hospitals included 10 medical centres, 18 regional hospitals and 15 local hospitals in Taiwan. Researchers were granted Internal Review Board approval and obtained agreement to collect data in all study settings. PARTICIPANTS: Patients at least 20 years old who had been diagnosed with CKD of any stage were eligible to participate. The formal assessment collected 1155 valid questionnaires, yielding an 87.3% response rate. The mean age of participants was 67.48 years (SD=12.87, range 22–98), while 484 (41.95%) were female and 78% were aware they had CKD. RESULTS: The self-devised instrument proved to have excellent reliability and validity. Use of the instrument in the main study showed that CKD-specific health literacy was significantly associated with age (β=−0.33, p<0.00), educational attainment and disease awareness (β=0.13, p<0.00). CKD-specific knowledge was also significantly associated with age (β=−0.18, p<0.00), educational attainment and disease awareness (β=0.19, p<0.00). CONCLUSIONS: This CKD-specific health literacy and knowledge assessment tool developed for Mandarin and Taiwanese-speaking patients is reliable and well validated. Patients with CKD who are aware of and understand their disease performed better in the assessment.