Kidney therapy decision aid receives high acceptability marks from patients, caregivers
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Key takeaways:
- Patients and caregivers had positive views about the educational aspect of the decision aid.
- Most participants said the question prompt list helped them express their concerns.
A new educational patient-decision aid received high acceptability ratings from older adults with kidney disease and their caregivers, according to published data.
“When people get sick with kidney disease, they may have to make tough choices about how they want to be treated. It can be hard for older people with this condition to understand all their options, such as dialysis, conservative kidney management or end-of-life planning,” Fahad Saeed, MD, FASN, of the divisions of nephrology and palliative care at the University of Rochester Medical Center in New York, and colleagues, wrote. “We created and tested a patient-decision aid [that] teaches about kidney disease and ... gives a list of questions to start conversations about treatment options with doctors.”
A multidisciplinary team used design-based research principles and the theory of behavioral activation to create a first version of the patient-decision aid, which included educational material about kidney therapy options and a question prompt list for end-of-life decision-making. The team modified the aid based on feedback from 35 patients who were receiving maintenance dialysis, as well as input from caregivers. The mean age of the patients was 80 years.
Researchers used multiple frameworks and studies to create the patient-decision aid. They adapted the International Patient Decision Aid Standards and the Patient Education Materials Assessment Tool to design content for the tool, which included presentation of treatment information and outcomes, consideration of patient goals and preferences, disclosure of sources of evidence and author qualifications, appropriate reading levels, inclusion of stakeholder information in development and patient narratives.
Results showed 100% of patients and 100% of caregivers had positive views about the educational component and would recommend it to others. Overall, 80% of patients and 88% of caregivers said the question prompt list helped them express concerns. Additionally, 75% of patients and 100% of caregivers said the question prompts helped them form questions they had not previously considered. Additionally, 95% of patients and 100% of caregivers reported they would suggest the question prompt list to others.
“Both patients and caregivers provided high acceptability ratings to both the components of [patient-decision aid] PDA and the experience gained by multiple rounds of feedback helped us improve the PDA,” the researchers wrote.
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