Development and preliminary psychometric evaluation of the Diabetic Kidney Disease Prevention and Control Literacy Questionnaire for health-information use and decision-making: a multisite study
This multisite study conducted in China in 2025 successfully developed and preliminarily validated the 26-item Diabetic Kidney Disease Prevention and Control Literacy Questionnaire (DKD-PCLQ), demonstrating strong psychometric properties including internal consistency, content validity, structural validity, and test-retest reliability for assessing DKD-specific health-information use and decision-making competencies.
Original paper licensed under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/). This is an AI-generated explanation of the paper below. It is not written or endorsed by the authors. For technical accuracy, refer to the original paper. Read full disclaimer
For millions of people living with diabetes, the greatest threat often arrives silently. Unlike a sudden infection or a sharp pain, diabetic kidney disease begins without warning signs, hiding in the background until it has caused significant damage. Because the disease is so quiet, preventing it relies almost entirely on a patient's ability to act on information long before symptoms appear. A person must understand why a specific blood test matters, interpret complex numbers about kidney function, weigh different treatment options, and decide how to adjust their daily diet or medication. This chain of actions depends on a skill set that goes far beyond simply reading a doctor's advice. It requires the ability to find reliable health information, judge whether that information is trustworthy, and then use it to make concrete choices about one's own life. Without these skills, even the best medical advice can fail to reach the person who needs it.
In a recent study conducted across several medical sites in Fuzhou, China, researchers set out to create a tool to measure exactly this set of skills. They recognized that while general tests exist to see how well people understand health information, none were designed specifically for the unique challenges of preventing and managing diabetic kidney disease. The team, led by Yaqin Ren and Ting Lin, developed a new questionnaire called the Diabetic Kidney Disease Prevention and Control Literacy Questionnaire. Their goal was to build a precise instrument that could identify where a patient might struggle: whether they lack basic knowledge about the disease, have trouble communicating with their healthcare team, or find it difficult to evaluate the flood of information available online and in print.
The journey to create this tool began with a deep dive into what patients actually experience. The researchers first interviewed people living with diabetes to understand their daily struggles with information and decision-making. They combined these real-world stories with a review of existing medical literature and then asked a panel of fifteen experts in diabetes and kidney care to critique their initial list of questions. This process was rigorous; the team refined the questions through multiple rounds of feedback, ensuring the language was clear and the concepts were relevant. They tested the draft questionnaire with patients, asking them to explain their thought process as they answered each question, a technique that helped the researchers spot confusing wording or unclear instructions. Through this careful, step-by-step refinement, they whittled down a large pool of potential questions to a final set of twenty-six items.
Once the questionnaire was ready, the researchers put it to the test with hundreds of participants. They divided a group of 422 adults with diabetes into two separate groups to analyze the data without bias. The first group helped the researchers see how the questions naturally grouped together, revealing that the skills needed for this disease fall into three distinct categories. The first category covers functional literacy, which includes knowing the basics of the disease, understanding risk factors, and recognizing the importance of screening. The second category involves interactive skills, such as knowing how to find information from doctors, books, or the internet, and how to talk effectively with healthcare providers. The third category measures critical literacy, which is the ability to judge the quality of information, decide if it applies to one's own situation, and verify it with a professional before acting.
The analysis showed that the new questionnaire worked well. The questions within each of these three groups hung together tightly, meaning they were consistently measuring the same underlying skill. When the researchers checked the tool's reliability by asking a small group of participants to take the test again two weeks later, the scores remained remarkably stable, indicating that the tool measures a person's abilities consistently over time. The content was also validated by experts, who confirmed that the questions covered all the necessary ground for managing this specific condition. The final 26-item tool successfully captures the full range of skills required to navigate the complex path of preventing kidney damage, from knowing the facts to making the final decision to act.
While the results are promising, the researchers are careful to note that this is a preliminary step. The study was conducted in a single city in China, and the tool was developed and tested only in the Chinese language. The authors emphasize that before this questionnaire can be used routinely in clinics or integrated into digital health systems, it needs to be tested in larger, more diverse populations to ensure it works equally well for people of different ages, backgrounds, and education levels. They also plan to investigate whether using this tool to guide patient education actually leads to better health outcomes, such as improved kidney function or better medication adherence. For now, the DKD-PCLQ stands as a carefully crafted new measure, offering a way to see clearly into the specific information and decision-making needs of people fighting to protect their kidneys from a silent disease.
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