Survey questions about people's understanding of their disease/treatment?

Does anyone know of sources or tools that ask questions about people's understanding about their disease (ie what does it mean to have diabetes, what will happen/ be consequence of not taking your blood pressure medicine, etc. and what prevents you from complying with treatment ( obvious question will be about affording meds)?

I know of surveys that address patient satisfaction, but not understanding.  Thanks!


Prob not what you're after but we (meaning The Health Television System Inc - for 20+ years broadcasting patient-education tv networks via hospital bedside tvs) conducted surveys with patients pre and post watching educational videos.

Surveys measured:

  • knowledge
  • self-confidence
  • motivation to continue with treatment and lifestyle changes

Video Topics

  • Pain Management (produced in collaboration with JCAHO)
  • Depression
  • Advance Directives

Surveys conducted in person, and - as always - that nets interesting qualitative.

Kathy Kastner

Although not a formal survey, I would think the Teach-Back method would be one of the best ways to assess someone's understanding of their disease. Especially since the questions are supposed to be geared towards their knowledge, attitudes and behavior.

From the same source as referenced above by lgoratus, the Association of Clinicians for the Underserved, you can find "a clinical tool card on Cross-Cultural Health Care that serves as a concise pocket-size reference card for busy practitioners."  It has these questions on it:

1. What do you call your problem? What name does it have?

2. What do you think has caused your problem?

3. Why do you think it started when it did?

4. What does your sickness do to you? How does it work?

5. How severe is it? Do you think your problem will be here for a short time or a long time?

6. What do you fear most about your sickness?

7. What are the chief problems your sickness has caused for you?

8. What kind of treatment do you think you should receive? What are the most important results you hope to receive from treatment?

Some combination of these with teach back strategies that assess understanding of instructions just given, about how to take your blood pressure medicines, for example?  Or an additional question:  How do you think this medicine will help you?

This is the link to the page on their site where you can find this tool:


Kath Anderson

Sage Words Health Communications



These are anthropologist/physician Arthur Kleinman's questions to elicit the patient's experience of disease. I first encountered them in Anne Fadiman's book The Spirit Catches You and You Fall Down, the parents' answer to the question about how their daughter's condition (epilepsy) works. These are excellent reflective questions to deepen understanding of both patient and physician and to discover the language and framing that is meaningful to the patient. 

The 8 questions developed by Dr. Kleinman and mentioned above by Kath are great. The Joint Commission lists them in their resource, "Cultural Sensitivty, A Pocket Guide for Healthcare Professionals" which can be found here:

The Pocket Book goes on to explain the 4 C's of Culture which I have used in some of my health literacy trainings. The 4 C's are cues of sort, to help providers remember to touch on Dr. Kleinman's questions. You aren't supposed to actually ask these questions directly, but rather have conversations to help you reach understanding of each question. The 4 C's are:

1) What do you call your problem? (really asking: What do you think is wrong? Get the patinets perception of the problem.)

2) What do you think caused your problem? (This gets at the patient's beliefs regarding the source of the problem)

3) How do you cope with your condition? (Really asking: What have you done to to try to make it better? Are you using other meds/herbal medicine? etc)

4) What are your concerns regarding the condition? (really asking: How does it interfere with your life or your ability to function? what are your concerns about our treatment plan?)

The rest of the resource gets a bit questionable in my mind by boxing different races into a page of generalizations and telling physicians, "beware of [a, b or c] in [x] population/race. But the 4 C's and Dr. Kleinman's questions are great! 


-Peter Morrison

Director of Health Literacy

Health Literacy Forward/Literacy Coalition of Central Texas


To set the record straight--I should have included this in my original post--the ACU tool "Cultural Competency Series/Framework for Cross-Cultural Health Care" clearly references Kleinman's The Illness Narratives: Suffering, Healing and the Human Condition as the source for the 8 questions.



I was also looking for same but never found any website. I found one but for my psychological disorder.

It helped me and i was able to ask psychologist and he asked me some questions.