Study shows that an online site helps patients make treatment choices more aligned with their goals and preferences
For many adults 70 years and older with advanced chronic kidney disease, choosing the optimal treatment plan is challenging.
Multiple options exist, including initiating hemodialysis or peritoneal dialysis, which may be associated with marginal survival advantages but significant quality of life burdens. Patients struggle to select the treatment option that best aligns with their values and goals of care, often because they have limited knowledge of their treatment options, their prognosis, and the implications of choosing one treatment versus another.
Now a new study has found that easy access to reliable education outside the doctor’s office and clearly understanding the prognosis with each treatment option can improve decision-making quality.
Researchers found that using the interactive online decision-making aid known as DART (Decision Aid for Renal Therapy) improved the ability of older patients with advanced kidney disease to make high-quality decisions about how to treat their condition, including whether to start or forgo dialysis.
The Tufts University-led study, published in the Annals of Internal Medicine, is among the first and largest focused on how older adults make decisions about treating chronic kidney disease (CKD), and determining how to help these individuals make decisions that align with their personal goals and preferences.
“We were wondering how we can best support both clinicians and patients in having these conversations, which are challenging, and provide people the information that they need in a way that they can absorb and digest—and to empower them,” said Keren Ladin, an associate professor of community health at Tufts. Researchers and clinicians collaborated on the study, which included 400 participants.
Improving education around treatment options is increasingly important. According to the Centers for Disease Control and Prevention, one in seven Americans—or more than 37 million people—suffer from CKD, a serious condition in which the kidneys become damaged and over time are unable to properly cleanse the blood of dangerous toxins and fluids that eventually build up in the body and cause debilitating symptoms.
The choice of treatment can be particularly challenging for older patients, who may become overwhelmed while navigating the myriad of information they receive. As a result, many believe that dialysis, a time-consuming and physically taxing therapy, is the only option for them, while other potentially better options are available.
Tufts Now spoke to Ladin about why making a personal choice for treatment can be so challenging for older patients and how the decision-making aid enhances their ability to make the best choice for them.
Tufts Now: How does the DART decision-making aid improve patient understanding compared to simply getting information from their doctor?
Keren Ladin: The tool does not replace doctors; it supports them. Generally, we found that many clinicians are very taxed on time. Also, physicians are not often trained in having serious illness conversations or in helping patients make decisions that best reflect their values.
What’s needed more is a conversation about what matters to you and how will this treatment affects your day-to-day living.
In addition, for patients, having some additional time outside of a clinical setting to really think about these things, organize their thoughts, talk to loved ones, and understand how each treatment contributes or impedes their ability to meet their goals, is very beneficial.
Patients are often sent to classes, some of which are designed by industry, but few classes present balanced information about conservative disease management. Additionally, because the classes can feature both older patients for whom dialysis is not a bridge therapy but a destination therapy, and younger patients for whom dialysis may be is a bridge to transplant, the conversation may add to the confusion of older patients.
Finally, in group settings some people don’t feel comfortable asking questions, and the information could be delivered too quickly for them to absorb.
How exactly does the DART tool help patients make better decisions that may be more personal and customized?
It’s a website, which can be accessed it from a phone or other device. It has a few different parts. The first tells you about kidney disease, what your kidneys do, and what you might be experiencing now, and the trajectory of your illness.
The second part covers the different therapeutic options. We specifically tried to give very balanced information about each option, including conservative management to treat CKD. We talk about palliative care. We talk about symptom control, and then we also talk very specifically about prognosis.
Finally, the last parts are interactive, and help patients think more deeply about what is important to them, what activities matter most to them, and how treatments would promote or hinder those goals. The last part prints out a set of questions and information that patients can use in the clinical encounter with their clinician to help guide their discussion.
How do folks in the medical community and the clinical care community get access to the DART tool?
It’s publicly available here (with password TEST). Our goal is for it to be more widely used, and that patients would have access to it, and that it helps patients and their families make decisions that are consistent with their preferences and goals.
What is your overall hope about the research and the tool?
Our goal is for decision-making to improve quality of life for older patients with advanced CKD. That’s really the goal. It’s not meant to push any particular modality, but just to help patients think about which treatment option is best for them, given where they are in their life, what they want do, how much care they want receive at home, and how involved they want be in their own care.
DART is a tool to support shared decision-making. Future research is needed to examine how to best use it in practice, including optimal timing and strategies to encourage its use within the clinical encounter.