Researchers created a new questionnaire called iKETO-KNOW to help patients and caregivers understand the ketogenic diet, a special eating plan used to treat epilepsy when medications don’t work. The tool asks 10 questions about food choices and diet management. When tested with 107 people following this diet, the questionnaire worked well and showed that people generally understood the diet pretty well. This new tool could help doctors figure out what patients need to learn better, which might help them stick to the diet and feel better.

The Quick Take

  • What they studied: Can a new questionnaire accurately measure how well patients and caregivers understand the ketogenic diet used to treat epilepsy?
  • Who participated: 107 adult patients and their caregivers who were already following a ketogenic diet as treatment for epilepsy that didn’t respond to regular medications
  • Key finding: The new iKETO-KNOW questionnaire reliably measures dietary knowledge, and most participants showed good understanding of the diet. The questionnaire worked the same way when given multiple times, showing it’s a trustworthy tool.
  • What it means for you: If you or a loved one uses a ketogenic diet for epilepsy, doctors may soon use this questionnaire to check what you understand about the diet and where you might need more help. This could lead to better support and improved results from the treatment.

The Research Details

Researchers created a new questionnaire to measure how well people understand the ketogenic diet for epilepsy. They started by having a group of experts in epilepsy and nutrition design the questions. Then they asked other doctors and patients to review and improve the questions using a method called the Delphi process, where experts give feedback in rounds until they agree on the best version.

The final questionnaire has 13 items total: 3 introductory questions that gather basic information and 10 multiple-choice questions divided into two sections. One section asks about food knowledge (knowing which foods are allowed and why), and the other section asks about diet management (how to follow the diet day-to-day).

The researchers then gave this questionnaire to 107 people—both patients using the ketogenic diet and their caregivers—to test if it worked well. They also gave it to the same people again later to see if the results were consistent.

Before this study, there wasn’t a standard, tested tool to measure how well patients understand the ketogenic diet for epilepsy. Having a reliable questionnaire is important because understanding the diet directly affects whether people can stick to it, and sticking to it affects how well it works as a treatment. This tool helps doctors identify exactly what patients don’t understand so they can provide better education.

The study used a well-established expert review process (Delphi method) to create the questionnaire, which strengthens the quality of the tool. The questionnaire showed strong test-retest reliability, meaning it gave consistent results when used multiple times. However, the study was relatively small (107 participants) and only included Italian-speaking patients, so results may not apply to all populations. The researchers didn’t find connections between knowledge scores and other factors, which suggests the tool measures knowledge fairly across different patient groups.

What the Results Show

The iKETO-KNOW questionnaire proved to be a reliable and consistent tool for measuring dietary knowledge. When the same people took the questionnaire at different times, their scores were very similar, showing the tool gives dependable results.

Participants generally showed good understanding of the ketogenic diet, with most scoring well on both the food knowledge and diet management sections. This suggests that people following the diet had learned quite a bit about how to do it correctly.

Interestingly, knowledge scores didn’t change based on how long someone had been on the diet, their age, or how much ketones were in their blood (a measure of how well they’re following the diet). This means the questionnaire works fairly for different types of patients, whether they’re new to the diet or have been doing it for years.

The questionnaire performed similarly well across different types of epilepsy diagnoses and different versions of the ketogenic diet (such as the classic diet, modified versions, or medium-chain triglyceride diet). This shows the tool is flexible and can be used with many different patient groups. The fact that knowledge didn’t vary much by these factors suggests that understanding the basic principles of the diet is important regardless of the specific type someone is following.

This is the first validated questionnaire specifically designed to measure ketogenic diet knowledge in Italian-speaking patients with epilepsy. While other studies have looked at diet knowledge in different contexts, this tool fills an important gap by providing a standardized, tested way to measure understanding of this specific treatment. The strong reliability results match what researchers expect from well-designed assessment tools.

The study included only 107 participants, which is a relatively small group, so results might not apply to everyone. All participants were Italian-speaking, so the questionnaire may need adjustment for other languages and cultures. The study didn’t compare knowledge scores to actual diet adherence or health outcomes, so we don’t yet know if higher knowledge scores actually lead to better diet compliance and better seizure control. The researchers also didn’t test whether the questionnaire could identify people who need more education or whether targeted teaching based on the questionnaire results actually helps patients.

The Bottom Line

If you’re using a ketogenic diet for epilepsy, ask your doctor about using the iKETO-KNOW questionnaire to check your understanding of the diet. Based on your results, work with your healthcare team to get education in areas where you need more help. This may improve how well you stick to the diet and how well it works for you. (Confidence: Moderate—the tool is reliable, but we need more research to confirm it improves outcomes.)

This tool is most relevant for adults with drug-resistant epilepsy (seizures that don’t respond to medications) who are considering or already using a ketogenic diet, and their caregivers. It’s also important for doctors, dietitians, and epilepsy specialists who work with these patients. People with other conditions using ketogenic diets should wait for additional research before assuming this tool applies to them.

The questionnaire itself takes just a few minutes to complete. However, improvements in diet adherence and seizure control from better understanding typically develop over weeks to months, depending on how quickly you can apply what you learn and how your body responds to the diet.

Want to Apply This Research?

  • Take the iKETO-KNOW questionnaire monthly to track your growing understanding of the ketogenic diet. Record your score and note which sections (food knowledge or diet management) you scored lower on, then focus your learning in those areas.
  • Use the questionnaire results to identify one specific area to improve each month—for example, if you scored lower on food knowledge, spend time learning about allowed versus restricted foods. If diet management was lower, focus on meal planning or tracking your meals in the app.
  • Create a learning plan based on your questionnaire results. Set monthly goals to improve understanding in weak areas, track your progress with the app, and retake the questionnaire every 3 months to see if your knowledge is improving. Share results with your healthcare team to get targeted support.

This research describes a tool for measuring understanding of the ketogenic diet for epilepsy. It is not medical advice. The ketogenic diet is a serious medical treatment that should only be started and managed under close supervision of a qualified healthcare provider, typically a neurologist and dietitian. Do not start or change any epilepsy treatment without consulting your doctor. Individual results vary, and what works for one person may not work for another. Always discuss any questions about your epilepsy treatment or dietary changes with your healthcare team.