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More than 37 million (15%) adults in the United States have chronic kidney disease
(CKD).
1
CKD often is silent and frequently goes undetected until its advanced stages, even
in high-risk subgroups, such as adults aged 60 and older, those with diabetes, and
those with hypertension.
1
Racial and ethnic disparities in the prevalence of CKD and progression to end-stage
kidney disease (ESKD) persist, with Blacks having more than a two-fold increase in
the risk of developing ESKD compared to Whites.
1
While many persons with CKD eventually receive care from nephrologists, many more
(especially at early stages of the disease) do not, underscoring the critical role
for primary care physicians (PCPs) and other specialties in educating patients about
CKD. Critically, approximately 90% of people who have CKD are unaware of their condition.
Even among those with advanced disease who are not undergoing dialysis, only approximately
50% are aware of their CKD.
1
In a study in this issue of Kidney Medicine, Barrett et al. examined how patients
with CKD (stages 2-5) prioritize information that they receive from health care providers.
2
Of 453 adults with CKD, they found that approximately half relied on nephrologists
primarily for information about kidney disease, whereas almost a quarter relied on
PCPs, and a fifth on both equally. Patients with a longer history of nephrology care
and those who perceived their last interactions as patient-centered were more likely
to rely on nephrologists for health information. These findings raise three important
questions: First, for patients with CKD, what information should be communicated earlier
in the disease course to prevent progression and by whom? Second, how should care
be coordinated to ensure consistency in messaging and patient-centered care? Third,
how should we measure patient-centered care? Barrett et al. describe extremely high
scores on the Patient Perception of Patient Centeredness Scale, median [IQR]: 3.8
[3.4-4.0] out of a highest possible score of 4. While it is reassuring to see that
patients perceive their nephrology care to be patient-centered, the very high responses
against a backdrop of limited variation suggests that more sensitive tools for assessing
patient-centered care are needed. These issues, along with opportunities for improvement,
are addressed below.
What information should be communicated earlier in the disease course and by whom?
Lack of consistent patient education for persons with kidney disease is an important
and persistent challenge facing the kidney community. Public knowledge of kidney disease
is low compared to other conditions, and awareness of CKD among persons with the condition
is also extremely low. Using a diverse racial and socioeconomic population in Baltimore
City, Tuot et al.
3
found that only 20% of participants were aware of having CKD (range: 11% for CKD stages
1 and 2, 29% for CKD stages 3 and 4). Similarly, Chu et al. found that between 2011
and 2016 CKD awareness ranged from 10% to just 49% among low- and high-risk groups,
respectively.
4
Tummalapalli et al. found that of 6,529 participants with CKD, just 4.4% were aware
of their CKD. CKD awareness was associated with 1.44 increased odds of ESKD. Indeed,
these studies and others suggest that CKD awareness, although universally low, is
higher among people with more advanced disease, highlighting the need for education
at early stages of CKD.
5
Patient education and CKD awareness are associated with better outcomes, including
higher rates of pre-ESKD nephrology care, higher likelihood of permanent access use
for dialysis initiation, higher rates of satisfaction with care, preemptive transplant
wait listing and transplantation.
6
,
7
KDIGO Guidelines provide stage-specific action plans for the continuum of CKD care,
emphasizing screening for CKD and its risk factors in the early stages in order to
slow down progression (Figure 1
).
8
Importantly, their heat map incorporates both estimated glomerular filtration rate
(eGFR) and albuminuria to risk stratify patients. Thus a 70 year old man with a stable
eGFR of 40 ml/min with no albuminuria could be monitored by his primary care physician.
On the other hand, a 70 year old man with an eGFR of 65 ml/min and more than 300mg/g
of albuminuria should be referred to nephrology given the high risk for rapid progression.
Despite evidence showing the benefits of early patient education, most kidney education
is focused on dialysis initiation, and occurs in the late stages of CKD, leaving many
patients with poor understanding of their diagnosis, prognosis, and options.
9
Educating and engaging patients in the earlier stages of CKD will require a primary
care workforce able to identify patients at risk of CKD, stay up to date with CKD
guidelines and detect those at risk to progress quickly in order to facilitate timely
nephrology referral. Through early education, primary care providers can empower patients
to slow CKD progression by improving early preventive care, including nutrition and
exercise, while reducing injurious behaviors such as use of nephrotoxic medication
and tobacco use. Access to mental health services and cognitive screening should be
key components of any early CKD education program. Incorporating risk calculators
that provide personalized estimates of patients’ risk of CKD progression may also
enhance opportunities for early education, shared decision-making, timely referral,
and follow-up. Web-based decision-aids which educate patients about CKD, prognosis,
and treatment options also hold promise, especially for patients with limited health
literacy and those in rural areas for whom engaging during medical encounters is difficult.
10
To support shared decision-making, education programs should clarify decision points,
provide facts and probabilities, help patients and families clarify values and preferences,
guide the deliberation, and engage patients and their caregivers throughout the care
continuum.
Figure 1
Nephrology referral decision making by GFR and albuminuria. Reproduced from KDIGO
2012 Clinical Practice Guideline for the Evaluation and Management of Chronic Kidney
Disease
8
with permission of Elsevier.
How should care be coordinated to ensure consistency in messaging and patient-centeredness?
Improving patient-centered CKD care requires greater care coordination between PCPs
and kidney clinicians. Educating patients with earlier CKD stages often falls to PCPs,
who are confronted with numerous competing priorities during brief visits. In addition
to limited time, PCPs may face multiple barriers including difficulty staying current
with CKD guidelines, inadequate resources and decision support, and insufficient coordination
with social work, nutritionists, and nursing.
11
Nephrologists, conversely, struggle with delayed referrals, which have been associated
with worse health outcomes, including death in the first year of dialysis.
12
Barrett et al.’s findings reinforce the notion that building upon trust developed
over longstanding doctor-patient relationships is critical to successful outreach
to patients early in their CKD progression. Smoother transitions, greater emotional
support, clarification of roles, increased collaboration and consistency in messaging
are all crucial to improving care for patients.
13
Rooted in the Chronic Care Model, improving upstream kidney care is a promising patient-centered
approach to more cohesive, streamlined care while ensuring consistent messaging for
patients. These include integrated care models with multidisciplinary teams that bring
together PCPs, nephrologists, nutritionists, social workers, nurses, and pharmacists
to improve education and care continuity for patients with complex needs.
14
Such models, often combined with disease management strategies such as telephone-based
outreach, self-management, and coaching, have been shown to delay the progression
of CKD and improve patient engagement and satisfaction.15, 16, 17 Shared medical records,
risk calculators, and decision-aids all provide opportunities for multidisciplinary
collaboration even remotely, an increasingly vital feature during the current COVID-19
pandemic where kidney care is often delivered remotely.
How should we measure patient-centered care?
With growing, commendable efforts to improve patient-centered kidney care, new measures
are being developed to assess patient-centeredness. One persistent challenge with
such measures is the often limited variation in responses and ceiling effects, as
demonstrated in the patient-perceived patient-centeredness scale used by Barrett et
al. In measuring trust in nephrologists, Oskoui et al. observed high levels of trust
in nephrologists across participants (mean score of 9.1 on a scale from 0-10) in a
sample of older patients with advanced CKD, even when pertinent decision-making factors
had not been discussed.
18
Response bias, including social desirability bias and recall bias, in addition to
sampling bias (participation in research by patients who are generally more satisfied)
present real challenges to understanding patient-centeredness in kidney care. Researchers
and funders should prioritize the development and validation of measures to assess
trust, patient-centeredness, and satisfaction with kidney care and kidney education.
These efforts should include patients, caregivers, clinicians, and other key stakeholders
to ensure that measures are both reflective of factors that matter most to patients
and their families, while also being clinically relevant.
Improving patient-centered kidney care requires consensus about the content of early
CKD education, integrated care models to ensure consistent and accessible education
and follow-up, and more accurate measures to assess patient-centeredness. Critically,
all three components require partnership and collaboration between patients, caregivers,
clinicians, payors, and regulatory agencies to achieve meaningful change. As Barrett
et al. demonstrate, intervening early and collaborating with primary care physicians
is a necessary first step to improving awareness and patient-centered care for persons
with kidney disease.