Does an Online Decision Aid Help People with Advanced Chronic Kidney Disease Choose between Two Treatment Options?

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What was the research about?

Chronic kidney disease (CKD) is a health problem in which the kidneys do not work well to remove waste from the blood. Some people with CKD have kidney failure, which means that they lose most of their kidney function. As kidneys fail, most people will need to choose between two common treatments

• Hemodialysis, which is treatment with a machine that cleans the blood. Patients receive this procedure at a treatment center.
• Peritoneal dialysis, which is pumping a cleansing fluid into the belly through a tube and then letting it drain out again, taking wastes away with the fluid. Patients can do this treatment at home or work.

For this study, the research team created and tested an online decision aid. Decision aids help people choose between two or more treatments based on what is most important to them. The decision aid in this study gave patients information on CKD and compared the two treatment options. The research team wanted to learn if the decision aid increased patients’ knowledge about CKD and helped them with their decision. 

What were the results?

The decision aid increased

• What patients knew about CKD and treatment options
• How sure patients were about what was most important to them in choosing between treatments
• How sure patients felt about which treatment they would choose

The decision aid didn’t change patients’ self-confidence in their ability to decide which treatment would be best for them.

Who was in the study?

The study included 140 patients with advanced CKD who had not started dialysis. The average patient age was 59. About 77 percent of patients in the study were white, and 16 percent were African American. Almost all patients had at least a high school degree, and 94 percent spoke English as their native language.

What did the research team do?

The research team assigned patients to one of two groups by chance. One group used the decision aid, and the other group didn’t. Patients in the first group took a survey before and after using the decision aid. The survey asked patients what they knew about CKD and asked them about how they make decisions about treatment. Patients in the second group took the survey only once. A panel of patients, caregivers, social workers, and doctors provided input on the study.

What were the limits of the study?

Patients who took part in the study were younger and healthier, and they had more education, than the average person with advanced CKD in the United States. The effect of the decision aid may not be the same for other groups of people.

Future research could test the decision aid in more CKD treatment centers with more patients. Future studies could also compare this new decision aid to existing ways of helping patients decide between dialysis treatment options.

How can people use the results?

Patients with advanced CKD may consider using decision aids such as the one in this study to learn more about dialysis options and help decide which treatment best matches their needs and preferences.

Objective

To create and test an online decision aid to help patients with chronic kidney disease (CKD) choose between in-center hemodialysis and peritoneal dialysis

Study Design

The research team conducted a randomized controlled trial of the effectiveness of an online decision aid in helping patients with kidney failure make an informed choice between two dialysis modalities. The decision aid contained information on CKD and its progression, a comparison of in-center hemodialysis and peritoneal dialysis from the patient perspective, and a tool to help patients identify the dialysis features that were most important to them.

The study tested changes in knowledge about kidney disease, measured by multiple choice questions; uncertainty concerning treatment preference, measured by patient ratings; uncertainty about the course of action to take, measured by the Decisional Conflict Scale; and self-confidence in decision making, measured by the Decision Self-Efficacy Scale. To inform development of the decision aid, the research team interviewed 179 patients with kidney disease and conducted a survey of nearly 2,000 patients who were receiving dialysis. The patients provided information on their experiences in decision making about dialysis and factors that were important to them in making that decision. An advisory panel of patients, caregivers, social workers, and clinicians provided input on the study.

The research team recruited patients from CKD clinics in southeast Michigan and through national online outreach. The study included 140 patients with advanced CKD who had not started dialysis and had access to the internet. The average age of patients in the study was 59. Of the 140 patients, 77% were white, and 16% were African American. Almost all patients had at least a high school degree, and 94% spoke English as their native language.

The research team randomly assigned patients to either an intervention or a control group. Patients in the intervention group completed a survey, reviewed the decision aid, and then took the survey again after completing review of the decision aid. Patients in this group accessed the decision aid using their own computers or personal devices. Patients in the control group took the survey only once and did not use the decision aid. The research team compared the control group’s survey responses to the intervention group’s pre- and postintervention survey responses to test for similarities in the demographic characteristics of the two groups as well as differences in the study outcomes. Researchers found that the control and intervention groups were similar in all measured demographic characteristics.

Results

Compared with patients in the control group, patients who used the decision aid had increased knowledge about CKD and treatment options (p<0.0001) and decreased uncertainty in deciding between treatment options (p<0.0001). After viewing the decision aid, the number of patients who were unsure of their treatment preference decreased from 47% to 16% (p<0.0001). The decision aid did not significantly increase patients’ confidence in their ability to decide which type of dialysis would be best for them compared with patients who did not view the decision aid.

Limitations

Patients in the study were younger, healthier, and more educated than the average patient with advanced CKD in the United States. Results may be different in other populations. Patients’ familiarity with the outcome measures from taking the survey the first time may have influenced their scores the second time they took the survey.

Conclusions and Relevance

An online decision aid may be an effective way to help patients with advanced CKD who are facing the choice between dialysis modalities to make a decision based on their personal needs and lifestyles.

Future Research Needs

Future research could examine whether wider use of the decision aid in real-world clinical practice can help a broader group of patients decide on treatment for kidney failure. Future research could also compare the benefits of this new decision aid to other methods for supporting decision making regarding dialysis treatment options.