Web-based Decision Aid Facilitates Patient Decision Making Regarding Dialysis Modality

In 2015, more than 120,000 patients in the United States initiated dialysis for treatment of end-stage renal disease. Among US patients on dialysis, approximately 90% receive hemodialysis at a dialysis center, 10% receive peritoneal dialysis, and 0.4% use home hemodialysis as their initial modality. Rates of quality of life and mortality are similar among patients treated with hemodialysis and peritoneal dialysis; however, use of peritoneal dialysis in the United States is much lower than in other countries.

According to Lalita Subramanian, PhD, and colleagues, “Most patients are eligible for both treatment options and the treatment choice should reflect patient preferences.” However, previous studies have demonstrated that patients feel ill-informed and unprepared to make decisions regarding dialysis modality. Low health literacy can also be a barrier to understanding differences in treatment options and making decisions about dialysis modality.

The EPOCH-RRT (Empowering Patients on Choices for Renal Replacement Therapy) study was a collaborative development of a web-based decision aid; the study involved researchers and an advisory panel that included patients, care partners, and patient advocates. Dr. Subramanian et al. conducted a parallel-group randomized controlled trial designed to assess the efficacy of the decision aid on decision-making outcomes. Results were reported in the American Journal of Kidney Diseases [2019;74(3):351-360].

Social media outreach, nationally and in local clinics, was used to recruit study participants. Eligible patients were ≥18 years of age, had estimated glomerular filtration rate (eGFR) <25 mL/min/1.73 m², had internet access via a computer or tablet, and had English language fluency. The outcomes of interest were treatment preference, decisional conflict, decision self-efficacy, knowledge, and preparation for decision making.

Participants were randomly assigned to an intervention arm or to a control arm. Those in the intervention arm received information regarding chronic kidney disease, peritoneal dialysis, and hemodialysis. They also engaged in a value clarification exercise via the study website using their own electronic devices. Those in the control arm were only required to complete the control questionnaire.

Following application of exclusion and inclusion criteria, of the 556 patients in the initial screening, 140 were included in the study, 70 in each arm. Seven of the participants in the intervention arm began the study and completed the pretest, but did not complete the posttest. Fifty of the remaining 63 in the intervention arm (79%) completed the pre- and posttests within 1 week; 60% of those on the same day. In sensitivity analyses with and without the 13 participants with a gap of more than 7 days between completion of the two questionnaires, none of the mean values of measured outcomes or reported statistical differences changed.

Demographics were self-reported in the control and pretest questionnaires; characteristics were similar between the intervention and the control group. The study sample was younger that the 2014 US chronic kidney disease (CKD) stages 4 and 5 population. Mean age was 76.8 years, eGFR was <30 mL/min/1.73 m², 46.2% were men, and 77.6% were white. Nearly all (96%) had a high school diploma and 94% considered English their native language. At the start of the study, literacy and subjective numeracy were similar in both groups.

At baseline, the intervention group had 47% uncertainty on treatment choice and the control group had 40% treatment choice uncertainty. Following the intervention, the proportion of those responding “not sure” was 24 percentage points lower in the intervention group than the corresponding proportion in the control group. In the intervention group, following use of the decision aid, the proportion of not sure responders was 30 percentage points lower than prior to use of the decision aid. Twenty-nine of the participants in the intervention group selected not sure prior to the intervention. Following use of the decision aid, eight remained unsure, 15 selected hemodialysis, five selected peritoneal dialysis, and one selected other.

On average, the intervention group scored 13.4 points less than the control group in decisional conflict; the decision aid was effective in decreasing the average decisional conflict score by 15 points. There was no modification of the effect of the decision aid by age, sex, or race. Following use of the decision aid, there was little change in decision self-efficacy scores and no evidence of modification by subgroups.

Participants in the control arm answered 77% of the knowledge questions accurately, on average. Following use of the decision aid, participants in the intervention arm answered 90% of the knowledge questions accurately. There were no observed effect modifications by age, sex, or educational level.

More than 90% of participants in the intervention arm indicated the decision aid helped somewhat to a great deal, both for preparing for dialysis and for follow-up with care providers. Ninety-two percent found the content balanced and not slanted toward either option, 88% trusted it, 87% agreed or strongly agreed that it was relevant to them, and 89% said they would recommend it to others; 49% described the decision aid as being extremely helpful in understanding dialysis options. One person did not like the website at all and two would definitely not recommend the decision aid to others.

There were some limitations to the study cited by the authors, including limited generalizability due to the self-selected study participants who were required to have access to the internet, speak English, and be computer literate; the high postrandomization loss to follow-up; and evaluating short-term outcomes only.

In summary, the researchers said, “Our work suggests that this decision aid, developed through a stakeholder-engaged process, informs and supports patients with CKD in making the difficult choice of dialysis modality. The broader implementation of this decision aid could complement current CKD education in clinical practice and could support both care providers and patients in shared decision making by facilitating communication about treatment options. Additionally, the decision aid could also become a resource for disseminating end-stage kidney disease knowledge with the potential for improving health outcomes through more active engagement in care.”

Takeaway Points

1. Researchers conducted a parallel-group randomized trial to test the efficacy of a web-based decision aid designed to help patients with end-stage renal disease in the choice of dialysis modality.
2. The study demonstrated that the decision aid improved decision-making immediately following use; more than 90% of users reported that it helped in their decision making regarding dialysis modality.
3. The researchers incorporated feedback from the participants to further refine the decision aid; the final version is available at http://choosingdialysis.org/.