Healthy Living

New Technology Offers Shared Decision-Making for Cystic Fibrosis Patients

New Technology Offers Shared Decision-Making for Cystic Fibrosis Patients

Suffering from an autosomal recessive lethal disease is indubitably difficult, but what if there were something that could make it more manageable? Physician researchers at the University of Cincinnati have worked to develop a computerize decision-making model that assists cystic fibrosis patients to make decisions in their home-care routines, personalizing them to their preferences.

How does it work?

The CF-Shared Decision Making Tool helps patients strike a balance between their preferences for measures of lung function and health, while integrating the newest medical studies for effective treatments. This way, patients can feel in control of their home-care routines, while still taking advantage of the latest innovations, so they can feel secure in the fact that they're receiving the best possible care.


The tool was tested on a group of 21 cystic fibrosis patients from age 20 to 66 in order to analyze the acceptability, understandability, and ease of use, to see if it would be practical for other patients. Lead author of the study, Mark Eckman, MD, Posey Professor of Clinical Medicine and director of the UC Division of General Internal Medicine commented on the test's findings, "patients found the tool easy to understand and felt engaged as active participants ... The tool was responsive to variations in patient preferences." More information on the study, and its testing, is currently available in its scholarly journal.

Ranking What's Important

Those suffering from the progressive, genetic disease Cystic Fibrosis (CF) experience persistent lung infections and a limited ability to breathe, to name just a couple of the effects, but every patient is unique in what aspect they believe is most important in treating their cystic fibrosis. Therefore, these personal rankings are absolutely integral to this new tool, and participants in the study got to experience this first-hand.

In the study, participants were asked what they would consider the top priorities of their home therapy when treating their cystic fibrosis. After these priorities had been chosen, they had to rate "preventing lung infection, improving breathing function, improving functionality and feeling of well-being, minimizing time required daily to complete all treatments and interventions and minimizing cost" on a scale of one to nine, indicating how important each one was to them personally. This information lets the tool personalize care to best affect the patient. The physician researchers at the University of Cincinnati also wanted to get an idea of what patients felt was most important, not only to them personally, but through what they have read and studied about cystic fibrosis. Therefore, based on medical and scientific literature the patients had experienced, they were asked again to rank what they believed to be most important, once again from one to nine, ranking "inhaled dornase alfa, inhaled antibiotics, inhaled hypertonic saline, airway clearance and exercise." From these rankings, the tool can put together a comprehensive home treatment plan that allows room for both personal and scientific rankings. 

The Value of Preferences

So, why is it so important to integrate what the patients believe to be most important into their home care routines instead of solely following doctor recommendations? Co-author of the study, and the director of the Adult Cystic Fibrosis Program at UC Medical Center, Patricia Joseph, MD, explains, "When therapies come up we discuss risks and benefits and I have a lot of patients say 'Yeah, but I am not doing that.' They say, 'I don't like the drug, it makes me wheezy' or 'Exercise, it takes too much time and doesn't really help me very much' ... What this tool does that is different is that it takes their preferences and their personal experiences with the therapies along with their personal goals for care and integrates them to help prioritize their own home care plan which therapies best fit their personal goals." It quickly becomes clear that there isn't a "cookie cutter" approach to the home-therapies needed for those suffering from cystic fibrosis, even if the symptoms appear to be similar or identical.

Joseph, who is also a professor in the UC Division of Pulmonary, Critical Care and Sleep Medicine says patients suffering from cystic fibrosis on average spend between one and a half to two hours per day engaging in these home therapy techniques. Spending such a significant portion of the day engaging in such activities proves the necessity of personalized therapy, as if patients feel as if they are doing something they feel more confident in that is personalized to them, they will be likely to exhibit improved signs of mental health, and will be more likely to experience results that will be more personally effective.

Not all patients are able to complete all their home therapies every day and Joseph goes on to explain, "we are asking them to do therapies they may not feel are beneficial. The tool gets their preferences and values and helps them prioritize their best home treatment plan." With a personal treatment plan, results can be monitored and amended to needs, and patients are given a sense of control over their disease, instead of simply following a previously laid-out treatment plan.

Tracking Goals

An important part of the process that this new tool promotes is not only initiating a personalized treatment plan, but tracking the results that it offers. The personalized data that is compiled for each patient's goals and treatment preferences get inputted into a computational framework associated with the tool, referred to as the Analytic Hierarchy Process, or AHP. The Analytic Hierarchy Process is able to assign weight to the preferences dictated by the patients, then combines them with quantitative data on treatment efficacy, as well as cost and time estimates that are all available within the program. With this information, it is able to provide a score for each treatment alternative that the patients and their doctors can analyze and potentially try. The Analytic Hierarchy Process utilizes a model of Microsoft Excel, but there may be even more advanced and interactive platforms to be available in the near future.

Moving Forward

Eckman says that he would like to see the tool available in the form of an electronic tablet that patients could access at any time, input their own data, and tabulate results at any moment. With this available, patients would be able to discuss with their doctors potential treatment plans they might like to explore, without having to wait for results. Eckman also says the next step forward for the tool and their study is to perform a randomized clinical trial evaluating doctor visits facilitated by the CF-Shared Decision Making Tool and normal doctor visits without an impact of the tool. Through this study, the researchers will be able to analyze what impact their tool is truly creating in the patients that use it, and whether or not they take advantage of potential new lines of treatment that can be found through it.

If this tool could prove to be effective, it would offer an immensely helpful alternative to the 30,000 people in the United States living with cystic fibrosis, and potentially be expanded to other diseases as well. In fact, some medical professionals even suppose that this innovation may be a glimpse into the future of medical treatment across the board.