A computer program created by physicians in Cincinnati may help cystic fibrosis (CF) patients to keep using those at-home treatments they feel are most effective, by providing them an easy way of sharing their preferences — and a given therapy’s effectiveness — with their doctors.
CF patients rely on a variety of home therapies, from medications such as dornase alfa, antibiotics, and hypertonic saline, to regular activities like exercise. They spend an average of 1½ to 2 hours every day doing these therapies at home. Still, patients often find it difficult to do all of the therapies their doctors advise, and don’t consider them all equally beneficial to their health.
“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,” Patricia Joseph, MD, director of the Adult Cystic Fibrosis Program at University of Cincinnati Medical Center, said in a press release.
Involving patients in decision-making regarding therapies is known to increase treatment adherence. Therefore, the team developed a computerized, shared decision-making program to help patients prioritize those treatments they find to be both effective and preferable.
Researchers conducted a field study of the program in 21 CF patients, ages 20 to 66, to determine its acceptability, understandability, and ease of use.
Participants were questioned as to their treatment goals, and then asked to rate the importance of each goal. These goals ranged from avoiding lung infections, to breathing more easily, decreasing the amount of time that need be spent on treatment and lowering the cost of treatments, to improving everyday life (functionality) and well-being. They also noted those treatments they considered most important.
Data regarding these goals and treatment preferences were then put into a computational framework called Analytic Hierarchy Process, which assigns weight to both of these parameters and a score for each goal/treatment.
“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,” Joseph said. “The tool gets their preferences and values and helps them prioritize their best home treatment plan.”
Results showed that CF patients found the program easy to understand and enjoyed being a part of their own therapeutic regimen.
Priority scores for each parameter were calculated from 0 to 1. The most important treatment goal for patients was improving breathing function (0.27), followed by improving functionality (0.24), preventing lung infection (0.21), decreasing time spent with treatment (0.16), and lowering treatment costs (0.11).
“Patients found the tool easy to understand and felt engaged as active participants in their care,” said Mark Eckman, MD, the study’s lead author, and the Posey Professor of Clinical Medicine at UC. “The tool was responsive to variations in patient preferences.”
The team hopes to begin clinical trials to determine the impact this shared-decision program can have on doctor’s visits.
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