William Beaubien-Souligny1,2, Simon Leclerc3,4, Nancy Verdin5, Rizwana Ramzanali6, Danielle E Fox7. 1. Division of Nephrology, Centre Hospitalier de l'Université de Montréal, QC, Canada. 2. Department of Medicine, University of Montreal, QC, Canada. 3. Division of Nephrology, Department of Medicine, The Research Institute of the McGill University Health Centre, Montreal, QC, Canada. 4. Division of Nephrology, Hôpital Maisonneuve-Rosemont, Montreal, QC, Canada. 5. The Kidney Foundation of Canada, London, ON, Canada. 6. Patient and Community Engagement Research Program, University of Calgary, AB, Canada. 7. Department of Community Health Sciences, University of Calgary, AB, Canada.
Abstract
Purpose of review: Diabetes affects almost a 10th of the Canadian population, and diabetic nephropathy is one of its main complications. It remains a leading cause of kidney failure despite the availability of effective treatments. Sources of information: The sources of information are iterative discussions between health care professionals and patient partners and literature collected through the search of multiple databases. Methods: Major pitfalls related to optimal diabetic nephropathy care were identified through discussions between patient partners and clinician researchers. We identified underlying factors that were common between pitfalls. We then conducted a narrative review of strategies to overcome them, with a focus on Canadian initiatives. Key findings: We identified 5 pitfalls along the diabetic nephropathy trajectory, including a delay in diabetes diagnosis, suboptimal glycemic control, delay in the detection of kidney involvement, suboptimal kidney protection, and deficient management of advanced chronic kidney disease. Several innovative care models and approaches have been proposed to address these pitfalls; however, they are not consistently applied. To improve diabetic nephropathy care in Canada, we recommend focusing initiatives on improving awareness of diabetic nephropathy, improving access to timely evidence-based care, fostering inclusive patient-centered care environment, and generating new evidence that supports complex disease management. It is imperative that patients and their families are included at the center of these initiatives. Limitations: This review was limited to research published in peer-reviewed journals. We did not perform a systematic review of the literature; we included articles that were relevant to the major pitfalls identified by our patient partners. Study quality was also not formally assessed. The combination of these factors limits the scope of our conclusions.
Purpose of review: Diabetes affects almost a 10th of the Canadian population, and diabetic nephropathy is one of its main complications. It remains a leading cause of kidney failure despite the availability of effective treatments. Sources of information: The sources of information are iterative discussions between health care professionals and patient partners and literature collected through the search of multiple databases. Methods: Major pitfalls related to optimal diabetic nephropathy care were identified through discussions between patient partners and clinician researchers. We identified underlying factors that were common between pitfalls. We then conducted a narrative review of strategies to overcome them, with a focus on Canadian initiatives. Key findings: We identified 5 pitfalls along the diabetic nephropathy trajectory, including a delay in diabetes diagnosis, suboptimal glycemic control, delay in the detection of kidney involvement, suboptimal kidney protection, and deficient management of advanced chronic kidney disease. Several innovative care models and approaches have been proposed to address these pitfalls; however, they are not consistently applied. To improve diabetic nephropathy care in Canada, we recommend focusing initiatives on improving awareness of diabetic nephropathy, improving access to timely evidence-based care, fostering inclusive patient-centered care environment, and generating new evidence that supports complex disease management. It is imperative that patients and their families are included at the center of these initiatives. Limitations: This review was limited to research published in peer-reviewed journals. We did not perform a systematic review of the literature; we included articles that were relevant to the major pitfalls identified by our patient partners. Study quality was also not formally assessed. The combination of these factors limits the scope of our conclusions.
Diabetic nephropathy is one of the main complications of diabetes. It remains a
leading cause of kidney failure even if effective interventions are available.
What this adds
There are multiple pitfalls along patient care trajectories that may prevent patients
from benefiting from the recent improvements in preventive interventions. Innovative
interventions and care approaches have been developed to improve the care continuum
for patients with diabetic nephropathy in Canada. However, the lack of accessibility
to timely evidence-based care, breaks in care continuity, and difficulties in
self-management remain important barriers to overcome.
Introduction
Diabetes is a common disease and a major public health challenge. According to
Diabetes Canada, 3.4 million Canadians representing 9.3% of the population had
diabetes in 2015, and it is estimated that its prevalence will rise to 12% of the
population by 2025.[1] A common complication of diabetes is diabetic nephropathy, which
is the most frequent cause of chronic kidney disease (CKD) in adults and the leading
cause of kidney failure in Canada, resulting in significant individual-level and
system-level impacts.[2,3]Diabetic nephropathy can be preventable with early diagnosis and optimal clinical
management. However, there are many pitfalls in the journey of a person living with
diabetes that can result in suboptimal care and outcomes. In this review, patient
partners and clinician researchers collaborated to identify fundamental care gaps
and approaches to care provision that aim to alleviate them.
Methods
Our team comprised of 3 clinician researchers who work with people with diabetic
nephropathy and 2 experienced patient partners: one living with diabetic nephropathy
and one living with kidney failure who has been a peer mentor to individuals with
this experience. Three additional patient partners were engaged throughout our
inquiry to provide additional insight and feedback at specific moments.Over a 4-month period, we engaged in iterative discussions with an aim of identifying
major gaps in the care of people living with type 2 diabetes mellitus (T2DM) and
diabetic nephropathy in Canada (Figure 1). We created a case vignette based on our collective
experiences to outline a common, yet potentially preventable, trajectory from T2DM
to kidney failure that illustrates common barriers to optimal care. The case
vignette was then used to foster group discussions about pathways toward
improvements and to guide a narrative review of research initiatives that aim to
address these barriers. We searched OVID Medline, PubMed, and Google Scholar from
inception to February 10, 2022. Keywords for the target population included
“diabetes,” “diabetic nephropathy,” and “diabetes and kidney disease.” Keywords for
the area of focus included “early/delayed/late diagnosis,” “screening,” “risk
assessment/evaluation,” “self-management,” “self-care,” “self-efficacy,”
“continuity,” “continuity of care,” “care coordination,” and “Canada.” A subset of
peer-reviewed literature was selected from these searches as deemed relevant to our
inquiry.
Figure 1.
Pitfalls along the journey of the diabetic nephropathy.
Note. CKD = chronic kidney disease.
Pitfalls along the journey of the diabetic nephropathy.Note. CKD = chronic kidney disease.
Pitfalls Along the Journey of Diabetic Nephropathy
Pitfall 1: Delay in Diabetes Diagnosis
Jane had a fulfilling, yet hectic professional life as the
manager of a very busy retail store. Dedicated to her family,
friends, and community, she left little time for herself. When she
started to feel fatigued, experience blurred vision, and feel an
insatiable thirst, she searched online to try and find a health care
provider who could see her. After a 2-week search, she was finally
able to secure an appointment at an emergency clinic nearby. If only
finding a family physician in her remote community was easier. The
physician examined her but didn’t have much to say. A week later,
she received a call that changed her life forever: she had diabetes,
and her blood sugar levels were extremely high.Timely diagnosis of T2DM has a critical impact on the trajectory of diabetic
nephropathy, and appropriate interventions implemented at this time mitigate its
future impact on patients’ lives. Efficient interventions to prevent TD2M onset
exist (eg, lifestyle modifications can reduce the progression from pre-diabetes
to diabetes),[4,5] making screening and early intervention important aspects of
care provision. Although screening tests for diabetes are available, not every
Canadian has access to a primary care provider (PCP) to order them. This may
partially explain why up to 41% of Canadians that have T2DM are not
diagnosed[6] and why individuals typically wait 4 to 7 years before
their diagnosis, which often only occurs after seeking urgent medical care for a
severe complication.[7,8] This lengthy delay represents a time where the patient is
not treated and is a fertile ground for the various complications of diabetes to
arise.One avenue to improve access to timely screening is to ensure Canadians have
access to trained PCPs. This may be especially true in rural jurisdictions in
Canada, where a lack of medical practitioners remains a major barrier to
equitable access to health services.[9,10] The College of Family
Physicians of Canada and the Society of Rural Physicians of Canada have recently
implemented a roadmap for action, focused on improving access to health services
in rural jurisdictions.[9] Although most of these action items are in development
phases, pilot programs have begun to show promising results.[9] For
example, new models of family medicine training that integrate regional campuses
outside of metropolitan areas are increasing the likelihood that trainees will
choose to practice rural family medicine upon graduation.[10,11]There is evidence to suggest that current screening for diabetes in Canada is
inadequate. For example, a recent study showed that 20% of individuals recently
diagnosed with diabetes in Ontario had a glycated hemoglobin (HbA1C) higher than
8%, highlighting insufficient screening and delay in diagnosis.[12]
Society-wide screening programs have been proposed as a potential solution to
this problem. However, vast screening programs are very difficult to organize
and costly to implement. For example, European studies have shown that as few as
20% of people undergo their first screening test in such programs.[13] For
screening to be efficient and cost-effective,[14] Diabetes Canada thus
recommends screening adults over 40 years old who have risk factors for T2DM or
diabetes-related conditions.One other alternative is to explore mechanisms that remove the initial need for
health care providers and/or prioritize health care provider referrals. For
example, various forms of self-screening, sent by mail or available at
self-service in public spaces, could provide a means for individuals to
self-screen. Research in diabetes technology is quickly expanding, with
artificial intelligence being frequently adopted to support diabetes
management.[15,16] New technologies, like mobile applications or websites
using artificial intelligence to assess a patient’s need for screening or
primary care appointments, have been used by some researchers for early disease
detection and to support self-management techniques.[17] These technologies may
also help to prioritize the need for primary care support, wherein individuals
at high risk could be subsequently flagged and linked with a health care
provider. These interventions could also be leveraged by health care providers
to facilitate shared decision-making and provide evidence to support testing,
screening, and timely disease detection.
Pitfall 2: Suboptimal Glycemic Control
Jane was determined. The emergency physician transferred her to
a primary care physician, and she was listening to all their tips.
She wanted to beat the disease and feel better. Sometimes, the
recommendations were puzzling. Eat less of this and more of that . .
. the doctor often talked about ingredients she didn’t even know.
She was warned that diabetes was dangerous for her heart and eyes,
so she put all her efforts in achieving glycemic control. However,
checking sugars, eating regularly, and figuring out pills are not
easy when you are managing a store and raising 2 children. All of
this meant that, despite her best effort, things were not perfect.
She was fearful to ask for further advice, as she felt judged by her
physician.Optimizing glycemic control is critical to prevent diabetic nephropathy and other
related complications. However, glycemic management can be an incredible
challenge for many people with diabetes. Diabetes self-management education and
lifestyle modification programs are common interventions that focus on self-care
and increasing knowledge and skill development.[18,19] Strategies to build
self-efficacy and behavior change are often incorporated into these
programs.[19] Lifestyle modification programs that focus on reducing
risk factors for diabetes (eg, maintaining a normal body mass index, smoking
cessation, blood pressure control, cholesterol control, optimizing physical
activity) have particular utility early in the trajectory.[20] As the
structure and content of these programs are highly variable, it remains
difficult to assess the extent of their impact, especially on long-term outcomes
like disease progression.[19] An array of technology to
support diabetes management has also been applied. Technology-supported diabetes
self-management was often most effective when combined with interactive data
sharing, where feedback and effective communication and support by the health
care team were simultaneously provided.[21] Videogames and
gamification have also been shown to be helpful tools to increase motivation and
provide positive reinforcement in diabetes education and management.[22]For self-management to be effective, large scale social programs to mitigate
common self-management barriers need to be in place. Despite the known benefits
of self-management and its importance in the prevention of diabetic nephropathy,
many individuals are unable to partake in self-management initiatives.
Self-management interventions pose an additional time commitment that many are
unable to meet.[23,24] Many individuals are further unable to implement
suggested strategies as they can cause emotional and financial burden.[25] Behavior
change is complex, and individuals may experience difficulty coping with their
disease which may limit their ability to participate in
self-management.[26] Many self-management
services are also not covered by health care programs, and when they are,
patients may still incur a significant cost burden in implementing
recommendations (eg, purchasing more expensive diet friendly food, cost of
traveling to appointments, private counseling, medication co-pay, and cost of
diabetes management supplies).Self-management interventions may further be inaccessible when they are not
individualized.[27
-29] For example, many
interventions do not account for nutrition and health practices across cultures
or accommodate different languages and spiritual beliefs.[27]
Implementing standardized programs may not provide the individual with the
knowledge and skills they require to address their unique self-management
barriers. They may also not be of interest to the individual, and thus, they may
choose not to engage in the initiative.[30] A breadth of
self-management interventions that can be customized to facilitate patient
choice to foster more meaningful self-management is thus required.[24,27]Effective self-management could be further complicated by negative relationships
with health care providers wherein patients may feel unsupported and a lack of
trust toward their health care provider.[25] The creation of
culturally appropriate support and safe environments is critical. For example, a
cross-sectional study of 554 indigenous people in Ontario documented that
indigenous people living with diabetes experienced barriers to culturally
appropriate health services.[31] This may partially
explain why indigenous people in Ontario are less likely to have a family
physician, report poor continuity of care, and are at higher risk for emergency
department visit for dysglycemia.[32]
Pitfall 3: Delay in Detection of Kidney Disease
One day, Jane’s physician warned her that there was a new
problem: proteins in her urine. How did this happen? She worked so
hard to keep her blood sugars at her target, and what did proteins
in the urine have to do with diabetes anyway? They explained to her
that sometimes diabetes attacks the kidneys, but apart from the
proteins, her kidney function was good. She was reassured, but it
was a bit difficult to grasp . . . what role does the kidney have
exactly? What were the risks for her in the long run? Why was this
the first time she was hearing about this?The presence of kidney disease is often under-recognized by PCPs, which can have
detrimental impact to kidney disease progression.[33] Current screening tests
(eg, creatinine, estimated glomerular filtration rate, and albuminuria) to
detect kidney involvement are useful to raise the flag once kidney damage begins
to occur and to initiate treatments to optimize kidney protection. However, low
physician adherence to clinical guidelines for diabetes management in CKD is a
concern in Canada, including the insufficient use of urine albuminuria testing
and other screening mechanisms and inadequate use of recommended
therapies.[34]Risk prediction algorithms may support health care providers to identify those at
risk for kidney disease and to support appropriate screening, treatment, and
nephrology referrals.[33] The Kidney Failure Risk Equation has been validated in
the Canadian context for people with diabetes.[35,36] It is also available
freely online and may be accessed by patients and their families to support
self-management. The kidney failure risk equation, however, has been more
frequently used and validated for later stages of kidney disease, wherein its
utility and widespread use among PCPs to support early disease detection and
treatment in Canada have not been well elicited. Leveraging the capabilities of
electronic medical records may also be an avenue to further improve process
adherence.[37] The integration of decision support tools into
electronic medical records may support disease management by alerting health
care providers to drug interactions, facilitate communication between multiple
providers and patients, and optimize the tracking of disease progression without
over-testing.[37] In the context of T2DM and CKD, the electronic medical
record could be set up with automated algorithms that could routinely order
testing based on recommended guidelines and could integrate resources that
support treatment decision-making.In a recent Canadian survey, only 51.5% of individuals with T2DM and CKD were
aware of their CKD diagnosis,[34] emphasizing the critical
need to engage patients in their care. Kidney Check Point-of-Care Testing is a
Canadian screening initiative that works with patient partners to implement
culturally safe strategies that target the early identification of kidney
disease, risk stratification, and timely access to interventions in remote
indigenous communities.[38] The scale and spread of similar models of care may
serve to fill CKD screening gaps for people with T2DM in Canada.People with diabetes are likely to have had multiple and diverse encounters
across health care professionals (eg, primary care, endocrinology, nephrology,
and cardiology) and health care settings (eg, primary care clinics, specialty
clinics, emergency and urgent care centers, and walk-in clinics) by the time
kidney involvement occurs. A retrospective study in Ontario revealed that
patients presenting with hyperglycemia in the emergency department who were then
referred to specialized diabetes care had better short-term outcomes.[39] Each
encounter should thus be seen as an opportunity to evaluate risk factors of
worsening disease and suboptimal disease management and to intervene with
appropriate coordinated services where required. This includes opportunities to
screen not only for risk factors for kidney disease but also for other related
conditions (eg, cardiovascular disease and neuropathy). This may be especially
pertinent when those who have been lost to follow up re-enter the health care
system, provided that continuity of care can be achieved from this point on.
Pitfall 4: Suboptimal Kidney Protection
Jane’s doctor proposed treatments to protect her kidneys, and
she accepted them with gratitude. However, she was prone to low
blood pressure, and the new drugs made her feel dizzy and weak. Her
physician even said that one of them had been toxic for her kidneys!
She didn’t want anything to do with that. Luckily, she was told that
her kidney function went back to normal after she stopped her new
medications. Reassured, she continued with her regular diabetes
medication.Suboptimal kidney protection results in faster progression of kidney disease for
people with diabetes. However, managing multiple and often conflicting
conditions creates significant challenges. Collaboration between health care
providers both within and between clinics is required. Although important across
the trajectory, this becomes especially pertinent once kidney involvement
occurs, as potentially 3 or more speciality areas become integral to care (eg,
endocrinology, nephrology, cardiology, PCPs, and other specialties). It is often
unclear how responsibilities regarding the diverse tasks involved in the optimal
follow-up of individuals are distributed among different health professionals
and specialists.[40] A recent population-based study in Ontario showed that
continuity of care was lower in people with multimorbid diabetes, especially
when comorbidities not related to diabetes are present.[41]
Difficulties in establishing effective communication strategies between
professionals are often reported by all parties and may contribute to breaks in
the continuity of care through divestment of either the PCP or the
specialists.[42] Digital platforms may facilitate the process of
referral and ongoing communication between these actors. Preliminary experiences
of these systems suggest a high satisfaction with timely response being a key
facilitator between PCPs and nephrologists.[43] Collaborative care
agreements outlining the respective responsibilities of each party could
facilitate this process to avoid care gaps.[44]Optimal kidney protection relies not only on the coordination of care providers
but also on accessible care. Strict adherence to guidelines in terms of the
frequency of in-person follow-up may have negative consequences, particularly
when conciliation between the management of health issues may conflict with
other aspects of life. Decisions about how and when care is accessed must occur
with the individual, and flexible care delivery models to support these
decisions should be developed and implemented. Virtual care may be one of these
areas as it offers opportunities to support easier access to health care teams
and may be especially pertinent for those who become burdened by frequent
appointments or who have accessibility challenges.[19,45] Although virtual care has
shown numerous benefits, identifying how to optimize its use is a priority, as
it is not appropriate in all circumstances.[46,47] This may be especially
true in later stages of kidney disease where the patient’s physical evaluation
is crucial to appropriately assess volume status and uremic symptoms.Regardless of how care is coordinated and delivered, the improved medical
management of diabetic nephropathy is essential. Suboptimal kidney protection is
often hindered by complex polypharmacy concerns, changing pharmacokinetics, and
variability in provider practices. One concern is the use of many nephrotoxic
medications remaining prevalent despite their avoidance being recommended in
national and international practice guidelines. For example, it has been shown
that despite practice guidelines recommending the avoidance of non-steroidal
anti-inflammatory (NSAID) medication in CKD, NSAID prescriptions/use remains
relatively high.[48] Education is also needed on how to prescribe and follow
up with agents that optimize kidney protection, especially for agents such as
RAAS and SGLT2i. Many health care providers may be unaware that these agents
represent the cornerstone of kidney protection.[49] Furthermore, they may be
more likely to stop them permanently when a moderate increase in serum
creatinine expected to normally occur with both RASS[50] and SGLT-2i[51] occurs or
in the setting of moderate hyperkalemia which could be managed with
pharmacological or dietary interventions.[52] Individuals and health
care providers often report difficulty navigating concerns with polypharmacy,
medication burden, and medication cost. The financial burden of polypharmacy
must not be understated. Not all Canadians have full coverage for their
medications (as well as other elements of their care). For individuals that do,
newer agents are often inadequately covered by provincial drug plans. For
example, even if it is now well-known that the kidney protection conferred by
SGLT2i is not mediated through improvement in glycemic control,[53] coverage
in some provinces still requires demonstrating suboptimal glycemic targets along
with the prescription of other hypoglycemic agents. Advocacy at the provincial
level is of paramount importance to make sure access to nephroprotective
treatment evolves in tandem with new evidence.Understanding how the patient responds to and views treatment interventions,
engaging in shared decision-making, and supporting the self-management of these
complex regimens is critical. Self-management interventions focused on
addressing complexity and uncertainty are needed. Building problem-solving
capacity may be one way to support people to better tackle the frequent complex
problems they will encounter.[19] Pharmacist-led
interventions may also be effective at this stage given the challenges with
medication management.[54] In collaboration with other health care providers,
pharmacists may be optimally placed to engage in shared decision-making,
optimize and individualize treatment regimens, and support individuals to access
coverage. Unfortunately, specialized pharmacist care is often not accessible,
and many programs rely on community pharmacists who may not have the knowledge
or capacity to take on this important role.
Pitfall 5: Deficient Management of Advanced CKD
A year later, Jane started to feel weak, a feeling that reminded
her of the beginning of her disease. Although her blood sugars were
in range, her weakness kept increasing. Headaches, itchy skin,
nausea, and vomiting . . . the days were long, and she felt
incapable of going to work. After discussion with her colleagues and
husband, she went to the hospital. She was horrified to learn that
her kidneys were extremely weak; they had stopped working. Weren’t
they fine at her last appointment? Why wasn’t she followed more
closely? Everything became a quick blur. A strange, weird plastic
catheter was installed in her neck, and she was plugged to what
looked like a bizarre washing machine. She was on dialysis.How did Jane end up here?It can be difficult to manage care for people who progress to kidney failure.
Peer support and coaching with people who have lived experience of the disease
offer an opportunity to support self-management.[19] The support that peers
can provide span beyond education, as peers are known to act as advocates,
cultural translators, and mentors.[19] Mental health support
(eg, mindfulness and cognitive behavioral therapy) is also critical at this
stage to support stress reduction, symptom management, and decrease emotional
distress.[19] However, varied forms of mental health support are
often not covered by provincial health systems.In Ontario, only about a third of people with kidney failure had high PCP
continuity,[55] indicating that follow-up is often entirely transferred
to the care of the specialists at some point in their journey.[56] Many PCPs
or endocrinologists wrongly assume that kidney clinics have all the means and
knowledge to assure all the patient’s needs are met. In reality, nephrologists
are not trained to treat common ailments like depression and musculoskeletal
pain, and kidney clinics or dialysis units often do not have the capacity to
support the individual’s holistic needs. From a patient’s perspective, PCP and
endocrinologist involvement remains generally appreciated by people with kidney
failure.[57] Although it may not influence overall survival or
hospitalization risk,[55] it is likely to alleviate care gaps related to health
problems that are common in primary care.[58]Interventions to improve continuity and collaboration between providers at this
stage are important. One of the solutions would be to offer a different approach
to PCP and diabetes follow-up to those with diabetes and kidney failure. An
important care model to consider is shared-care clinics, which integrate health
care providers from different specialties who collaborate to provide care to
patients with complex medical issues at a single location.[59,60] For
example, many patients with T2DM also have CKD and cardiovascular disease which
can complicate health care provision and disease management. The Cardiac and
Renal Endocrine Clinic is a multidisciplinary and interdisciplinary clinic at
the Toronto General Hospital in Ontario, Canada, wherein cardiologists,
nephrologists, and endocrinologists develop a single management plan with the
patient during a single consultation.[59] Marked improvements in
low-density lipoprotein cholesterol, HbA1C, and blood pressure and a higher
uptake of evidence-based medication were noted among patients.[59] Lessons
from care models applied earlier in the trajectory may have utility in
structuring care delivery mechanisms across all disease stages. The diabetes
empowerment group program is a pilot effort led by McGill University in
Montreal, Canada. Group sessions are facilitated by physicians and nurses,
include knowledge translation activities, and foster patient involvement as
active partners.[61,62]While alternative models of care delivery including community-based care,
self-management programs, peer coaching, nurse-led community clinics, and
shared-care clinics[63
-67] have been reported across
the trajectory, it is unlikely that these are widely available. As such,
expanding models of care provision across jurisdictions that can better meet the
capacity, interest, and support needs of individuals with diabetic nephropathy
may be an interesting approach to targeted complex care provision.[67]
Perspectives on the Barriers to Optimal Diabetic Nephropathy Care
We identified 5 pitfalls along the diabetic nephropathy trajectory, including a delay
in diabetes diagnosis, suboptimal glycemic control, delay in the detection of kidney
involvement, suboptimal kidney protection, and deficient management of advanced CKD
(Figure 1).This review was limited to research published in peer-reviewed journals. We did not
perform a systematic review of the literature or explore all the possible root
causes and promising interventions to improve diabetic nephropathy care. Data
quality was not formally assessed nor were meta-analyses conducted to determine the
overall effect of the evidence discussed. The combination of these factors limits
the scope of our conclusions. However, our narrative review was founded from our
collective lived experiences and knowledge of the literature, which led us to
identify 4 areas that we believe should be better understood and targeted to improve
care provision in this domain (depicted in Figure 2).
Figure 2.
Improving diabetic nephropathy care in Canada.
Improving diabetic nephropathy care in Canada.
Raise Diabetic Nephropathy Awareness
Awareness and early intervention are critical to prevent diabetic nephropathy and
support effective T2DM care provision. Most individuals with T2DM are unaware
that diabetes can lead to kidney disease, and many with T2DM and CKD are not
aware that they have kidney disease. Health care providers and patients may also
not be aware of or implement best practice guidelines or know how to effectively
manage agents that optimize kidney protection. The lack of physical symptoms of
kidney involvement until late-stage disease makes it easy to be overlooked. This
problem thus extends beyond creating better access to care and an awareness of
the possibility of kidney disease to understanding and emphasizing the
implications and complications that it can create for a person living with
diabetes early in the trajectory. The community must wake people up to the
realities of kidney involvement and how detrimental its impact can be and
promote early awareness, disease detection, and evidence-based treatment.
Improve Access to Timely Evidence-Based Care
It takes significant coordination to effectively manage T2DM and diabetic
nephropathy. Timely and appropriate access to health care is a prerequisite to
appropriate diagnosis and treatment. Despite continuous efforts to assure that
every Canadian has access to appropriate health care provisions, barriers in
accessing health care providers, timely screening, and evidence-based treatment
remain. In many jurisdictions, access to health care providers and needed
services are often limited. Those with access to a health care provider may
still face poor continuity of care and rely on health care providers who may
lack confidence in their knowledge of appropriate recommendations and treatments
to prevent disease occurrence and progression. Suboptimal care coordination and
individual and social barriers to accessing care and self-management
interventions further hinder access to appropriate treatment and can make
knowledge acquisition and self-management difficult.
Foster Inclusive Patient-Centered Care Environments for Complex Disease
Management
Few health care models incorporate holistic complex disease management across the
disease trajectory. Improper orchestration of health care professionals, a focus
on downstream interventions, and health care models that may not be structured
to adapt to the needs of the individual contribute to this problem. Care
coordination founded in empathy, strong communication, and equal partnership
between all players is needed to build trust and effective care provision.
Ultimately, the patient knows their body best. They know what works and what
does not, and they should be considered the greatest resource in both
understanding the disease itself and how it can be managed most effectively.
Current biomedical models of health care delivery largely place the power in the
hands of health care professionals to coordinate care and determine testing,
treatment, and self-management options. Opportunities to shift this power to the
patient and their family are an important avenue forward.
Generate New Evidence to Support Complex Disease Management in Canada
To overcome the multifaceted problems that surround diabetic nephropathy care,
innovative solutions are required. Integrated research, clinical, and quality
improvement models that span across silos and that are founded in the patient
experience may serve to generate meaningful evidence and a way forward. These
models should include patient experiences that are diverse and represent
multiple views and experiences. The research community should thus focus on
continuing to establish systems where patients can not only partner in this work
but also lead it. The closer integration of clinical and research centers may
not only facilitate this process but provide mutual benefit. For example,
clinicians and patients may benefit from timely access to evidence, and
researchers would have improved access to supportive study sites and potential
participants. Established relationships and collaboration from all parties may
foster research initiatives that are meaningful to all.Discussions between patients, researchers, and policymakers should further be
supported by evidence adapted to the Canadian setting. This involves
prioritizing public health research investigating the net impact of strategies
aiming to reduce the burden of diabetic nephropathy in Canada. Awareness and
exposure of knowledge end-users about existing evidence and the innovative work
that is already occurring in Canada may support its application. Research into
therapies and care environments that support complex care must recognize the
many interrelating factors that impact health in this population and focus on
complex interventions, treatments, and systems that facilitate safe and
effective multi-morbidity management.
Conclusions
Diabetic nephropathy is a major cause of morbidity and mortality for people with
diabetes and represents one of the leading causes of kidney failure in Canada.
Although our knowledge of the disease is improving, there remain many pitfalls that
prevent effective care provision and disease management. Working toward closing
these gaps and translating research results into practice should be the priority of
everyone involved in the care of people with, and at risk for, diabetic
nephropathy.
Authors: Richard Kahn; Peter Alperin; David Eddy; Knut Borch-Johnsen; John Buse; Justin Feigelman; Edward Gregg; Rury R Holman; M Sue Kirkman; Michael Stern; Jaakko Tuomilehto; Nick J Wareham Journal: Lancet Date: 2010-03-29 Impact factor: 79.321
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Authors: Laura C Rosella; Michael Lebenbaum; Tiffany Fitzpatrick; Aleksandra Zuk; Gillian L Booth Journal: Diabetes Care Date: 2015-04-07 Impact factor: 19.112
Authors: Kelly H Tyler; Bradley M Haverkos; Justin Hastings; Eileen Hu; Ramez Philips; Alejandro A Gru; Meng Xu Welliver; Anjali Mishra; Henry K Wong; Pierluigi Porcu Journal: Front Oncol Date: 2015-06-17 Impact factor: 6.244