PROBLEM: Many patients considering lung transplantation are overwhelmed by all the information they receive about the procedure. They do not understand the possible negative complications of the procedure.
This decision aid is trying to help low health-literate patients make an informed decision about lung transplantation.
This is a difficult decision to make since the risk factors are complex and there is no survival benefit. Also, many have low health literacy, a lower “capacity to acquire, manage and comprehend medical information” .
My role: content validation
Through interviews with patients, I set out to answer the following:
• Is the decision aid biased towards getting lung transplantation?
• Do patients understand that lung transplant offers no survival benefit over medication treatment?
• Does the content present risk-factors in a realistic and meaningful way to low-health literate patients?
• Presenting statistics to low health-literate patients
• Familiarity with International Patient Decision Aid Standards (IPDAS)
• Social & Behavioral Responsible Conduct of Research Training
All 5 patients said the decision aid was not biased towards lung transplantation or medical management.
Four of the five patients understood there was no survival benefit with transplantation, and they thought the decision aid did not emphasize quality-of-life as a major benefit.
Using color to differentiate health outcomes makes the data easier to process. This testing phase also revealed the importance of describing the severity and duration of risk-factors.
Using the denominator out of “100 patients who get lung transplant…” is better because it reinforces death results. Whereas, the other denominator tested “100 patients that survive lung transplantion” obscures the number of deaths resulting from the procedure.
I tested 5 patients who had already decided to get a lung transplant with the following procedure:
1. Content Validation of Decision using a paper-based slide deck of the decision-aid with the patient asking questions along the way.
2. Post-test interview to probe for the overall feedback of the decision aid.
3. Numeracy Test to assess patient’s proficiency with percentages.
4. Rapid Estimate of Adult Literacy Test (REALM) to assess the patient’s literacy level.