Shared decision-making in chronic kidney disease requires engagement between primary care provider and specialist alongside the patient.
Receiving a chronic kidney disease diagnosis can be devastating. And with most treatments for chronic kidney disease — especially when diagnosis comes late in the disease progression — being extremely invasive, driving shared decision-making into the care encounter is essential.
Currently, 30 million individuals, or 15 percent of all US adults, have chronic kidney disease. Of those individuals, 726,000 have end-stage renal disease, which is the most severe form of chronic kidney disease. As patients progress toward end-stage renal disease, their treatment options shrink while the burden on their personal lifestyles and quality of life grows.
These challenges bring to light the importance of shared decision-making, or the practice of educating and involving patients in their healthcare choices, according to Kathleen Giblin, RN, the senior vice president of quality innovation at the National Quality Forum and an expert in shared decision-making.
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“The large percentage of people are undiagnosed with chronic kidney disease and they don’t find out about it until they’re in an acute crisis,” Giblin told PatientEngagementHIT.com during an interview. “Then they’re in a situation where the decisions that a patient makes with chronic kidney disease are decisions that are going to literally impact the trajectory of their life going forward.”
Patients and their providers have to decide whether to go through with a kidney transplant or to start dialysis. And if they do go with dialysis, what type?
These are decisions that are going to impact patients for the rest of their lives, Giblin said, and they are hard.
Shared decision-making can make coming to these choices easier because it pushes patients and providers to consider treatment options, side effects, current lifestyle needs, and patient goals. From there, the patient-provider dyad chooses the treatment path that best fits.
But the trouble, Giblin lamented, is very few patients and providers actually engage in shared decision-making, least of all when they are staring down a chronic kidney disease diagnosis. Fewer than half of all patients say their providers are asking their opinions or preferences for kidney disease treatment.
“The National Quality Forum did some preliminary research with patients, providers, and organizations that are very focused on chronic conditions and found a lack of education on both the provider part as well as the patient,” Giblin explained. “This has led people to hasty decisions and often they will say later on, ‘If I knew what I know now, I would not have made the decision I made.’”
“And quite frankly, that is a travesty.”
A recent NQF guidebook aims to address this travesty, working to educate providers on how they can engage their patients in shared decision-making. In doing so, Giblin and her team at NQF hope to prevent ineffective or dissatisfactory healthcare.
“Chronic kidney disease is one that we as an organization felt strongly warranted a deeper dive,” Giblin explained. “That’s the reason we went deeper in this. The good news about shared decision-making as a whole is that you can leverage just the core tenets of shared decision-making across most conditions without having to do a deeper dive.”
“But in chronic kidney disease, the complexity of the care, the options that are available, and the downstream impacts of the decisions that are made are so determined by a patient’s lifestyle,” she added. “These treatments determine the rest of your life. It is that much more important for this condition.”
The playbook, which NQF developed using input from patient engagement experts and patients themselves, outlines strategies different provider stakeholders can use to drive shared decision-making in chronic kidney disease.
Using patient-centered approaches, medical providers can ensure patients are knowledgeable about their healthcare status and the treatments available to them, working to integrate patients into the healthcare experience and making them partners in care.
At the helm of these efforts are two key players: the primary care provider and the nephrologist. And while the nephrologist certainly plays a big role, the medical industry needs to be focusing much of its attention on supporting primary care providers in delivering shared decision-making for chronic kidney disease.
“All providers should be engaging patients in the shared decision-making process,” Giblin explained. “The difference is a nephrologist has a deeper understanding of the treatments and the impacts and the options.”
And given the “first responder” role most PCPs play during chronic kidney disease diagnosis, it is essential to support primary care providers in filling that knowledge gap, at least to some extent.
Primary care providers need to be comfortable and educated enough to know that their patient likely has gone undiagnosed for some time and that this major diagnosis is coming as a surprise. These patients probably haven’t seen a nephrologist yet, and they have questions.
These providers don’t need to know all of the answers, Giblin said, acknowledging the broad scope of information primary care providers are responsible for knowing.
“What they need to be doing in that immediate moment before they can get the patient to a nephrologist — who can walk them through the diagnosis — is to acknowledge the situation that is often a surprise for the patient,” Giblin stated.
“What we want to do is start getting our primary care physicians educated with enough information that they can start to talk about options with patients newly diagnosed with chronic kidney disease,” she added. “Not at a detailed granular level, but at a high level to give the patient the sense that a lot of important decisions are going to have to be made in the near future.”
Of course, the primary care provider doesn’t need to practice in a vacuum, with Giblin pointing out the importance of messaging consistency between the PCP, the nephrologist, and other members of the care team.
Decision aids and adequate patient education techniques will be at the crux of these efforts, but relevant tools have not yet been developed, Giblin explained. There needs to be more consistency, she said, to ensure the primary care provider and the nephrologist are on the same page about patient care and are not sending mixed messages.
“If we’re not giving the consistent message, then we are doing a disservice across the board,” Giblin asserted. “We need to make sure that we’re explaining things to patients at a level that we can at least feel confident that they’re understanding what we’re saying.”
Part of these efforts will require some patient education standardization, Giblin stated. Decision aids and other patient education tools, while aplenty on the healthcare market, need to help different members of the care team deliver a consistent educational message.
“The ideal would be if we had, and we don’t currently in our system today have this, but if we had a standardized approach to decision aids,” she explained. “Primary care physicians and their staff, and nephrologists and their staff, and whoever else on the care team would be using decision aids that have been vetted to be the accurate, appropriate approach to shared decision making.”
This will be essential to cultivating strong patient health literacy, a key skill in chronic disease management and shared decision-making. Without adequate levels of health literacy, patients and providers cannot possibly make an informed, joint decision about care.
Take the concept of dialysis, Giblin offered as an example. There is more than one type of dialysis – hemodialysis peritoneal dialysis are the two main categories – but usually all the patient hears is the word “dialysis.” This gap in education can seriously skew how a patient approaches her decision-making.
But not all is lost, Giblin added. The good news is the decision aids that are on the market are effective, they just do not follow a standard education protocol.
Providers are also increasingly becoming interested in shared decision-making, although the key barriers of crowded workflows and limited provider education are still getting in the way.
But as the medical industry targets its focus on chronic disease — especially chronic kidney disease, what with the recent executive order on the matter — Giblin expects to see future improvements.
“We do need to continue to increase public awareness of the condition. The numbers of people that are going undiagnosed until the crisis hits is staggering,” she concluded.
“The executive order this past summer puts heightened focus on kidney care. We’re hopefully going to start to see some real strong, focused attention on chronic kidney disease and the treatment options. And that will make the shared decision making even more important.”
Source: Patient Engagement Hit