Supportive Care: Integration of Patient-Centered Kidney

Care to Manage Symptoms and Geriatric Syndromes

Sara N. Davison* and Sarbjit Vanita Jassal†

Abstract
Dialysis care is often associated with poor outcomes including low quality of life (QOL). To improve patient-
reported outcomes, incorporation of the patient’s needs and perspective into the medical care they receive is
*Division of
essential. This article provides a framework to help clinicians integrate symptom assessment and other measures
Nephrology and
such as QOL and frailty scores into a clinical approach to the contemporary supportive care of patients with Immunology,
advanced CKD. This approach involves (1) defining our understanding of kidney supportive care, patient-centered Department of
dialysis, and palliative dialysis; (2) understanding and recognizing common symptoms associated with advanced Medicine, University
CKD; (3) discussing the concepts of physical function, frailty, and QOL and their role in CKD; and (4) of Alberta, Edmonton,
Alberta, Canada; and
identifying the structural and process barriers that may arise when patient-centered dialysis is being introduced †
Division of
into clinical practice. Nephrology,
Clin J Am Soc Nephrol 11: 1882–1891, 2016. doi: 10.2215/CJN.01050116 Department of
Medicine, University
Health Network,
Background on those dying with cancer. Palliative care now extends University of Toronto,
Modern medicine has expanded well beyond the to services aimed at improving the QOL of all patients Toronto, Ontario,
Canada
management of acute illness. As a consequence of the with life-limiting illnesses, throughout their illness,
years of research and medical progress, the physician’s through the prevention and relief of suffering. It can
Correspondence:
role is largely to manage the health of patients with mul- be provided together with therapies intended to pro- Dr. Sara N. Davison,
tiple chronic diseases that progress over time. Almost long life, such as dialysis. However, it is still a com- 11-112R Clinical
invariably, patients with chronic diseases have also ac- monly held view by both health care providers and Sciences Building,
quired responsibility. They are expected to modify their patients that palliative care and terminal care are Edmonton, Alberta,
Canada, T6G 2G3.
lifestyle and, for patients receiving dialysis, to commit synonymous (4–6). In keeping with recent Kidney Dis- Email: sara.davison@
to a therapy that is highly invasive and often associated ease Improving Global Outcomes recommendations to ualberta.ca
with physical, psychosocial, and spiritual symptoms (1). address this misunderstanding, the term “kidney sup-
In some cases, current kidney care is inconsistent with portive care” is replacing the term “kidney palliative
patients’ preferences and values (2). Consequently, dial- care” (7). The concepts, however, remain consistent
ysis is often associated with poor outcomes including with the World Health Organization definition of
low quality of life (QOL). To improve patient-reported palliative care (8).
outcomes, incorporation of the patient’s needs and per- Kidney supportive care, therefore, involves services
spective into the medical care that is provided is essen- aimed at improving the QOL for patients with CKD.
tial (3). In essence, this shift is a re-emergence of the This includes aligning treatment with a patient’s goals
need to practice both the art and the science of medicine. through culturally sensitive shared decision-making
The purpose of this article is to provide a framework and advance care planning (discussed further in this
that may help clinicians integrate symptom assessment Moving Points feature) (9) and basic symptom man-
and other measures such as QOL and frailty scores into a agement. Other core elements of kidney supportive
clinical approach to contemporary kidney care. This will care include prognostication (10); psychologic, spiri-
involve (1) defining our understanding of kidney sup- tual, social, and family support (7); and conservative
portive care, patient-centered dialysis, and palliative di- (nondialysis) kidney management (11). Recent patient
alysis; (2) understanding and recognizing common engagement has highlighted kidney supportive care
symptoms associated with advanced CKD; (3) discus- as a top priority for those with CKD (12).
sing the concepts of physical function, frailty, and QOL, Patient-centered care can be defined as care that is
and their roles in CKD; and (4) identifying the process adapted to facilitate integration of the patient’s life-
barriers that may arise when patient-centered dialysis style and community into the treatment plan. To be
care is being introduced into clinical practice. able to integrate both the patient’s and the clinician’s
perspective, a model of culturally sensitive shared
Defining Our Understanding of Kidney Supportive decision-making is encouraged (9,13). This model is
Care, Patient-Centered Dialysis, and Palliative based on conversations between a patient (including
Dialysis their family and social community) and their clinician,
The role of palliative care has expanded such that it that allow the prioritization of those components of
is no longer limited to terminal care focused primarily medical care important to the patient over others

1882 Copyright © 2016 by the American Society of Nephrology www.cjasn.org Vol 11 October, 2016
Clin J Am Soc Nephrol 11: 1882–1891, October, 2016
deemed less important (14–16). For many patients receiving
dialysis, this requires the integration of quality kidney sup-
portive care to manage symptoms and optimize QOL. The
need for kidney supportive care and shared decision-
making is increasingly being recognized and much work is
being done to help integrate both patient and clinical prior-
ities into the field of kidney medicine (7,12,17).
In practice, patient-centered care requires thoughtful,
tailored kidney care that will often require balancing issues
of survival and long-term health outcomes with maximiz-
ing QOL, symptom control, and physical function (Figure
1). This can become impractical if clinicians are con-
strained by treatment targets or a need to adhere to current
disease-orientated guidelines. In contrast to traditional
care, physicians practicing patient-centered care may
need to balance the management of symptoms (e.g., dizzi-
ness and fatigue) with optimal control of BP, anemia, and
phosphate levels, with less emphasis being placed on maxi-
mizing long-term health outcomes, such as survival. As dis-
ease progresses, patients’ goals of care tend to shift to focus
almost exclusively on QOL rather than survival, with a
strong emphasis on emotional, social, and family support
(2). As the patient and family accept death as a natural con-
sequence, the focus becomes more consistent with palliative
dialysis where symptom control and advance care planning
become of paramount importance, trumping issues related to
disease-orientated clinical performance measures and longer-
term health outcomes and survival.
Palliative dialysis is an approach to dialysis that prior-
itizes QOL over survival and current quality assurance
Figure 1. | Conceptualizing patient-centered dialysis and palliative dialysis. QOL, quality of life.
Patient-Centered Assessments and CKD, Davison et al. 1883
targets through the prevention and relief of symptoms and
suffering (Figure 1). Palliative dialysis is a form of patient-
centered dialysis in that it continues to align care with
patient preferences. Interventions are largely to control im-
mediate symptoms and distress, while still, where possible,
promoting wellbeing and social functioning. Particular at-
tention is paid to providing emotional and family support
and to helping patients and their families come to terms with
the progressive nature of their disease. Palliative dialysis is
often, incorrectly, perceived as being equivalent to less di-
alysis or a precursor to withdrawal of dialysis. Although
adaptation of dialysis timings or eventual withdrawal from
dialysis may be a component, this alone will rarely amelio-
rate symptoms or suffering for patients.
A number of interventions can improve the patient’s
perception of wellbeing near the end of life. These have
been previously outlined and may include a reduction in
pill burden, or relaxation of dietary restrictions (18). Less
dialysis rarely provides benefits, and may result in in-
creased symptoms and postdialysis fatigue, especially if
greater ultrafiltration is required to manage troublesome
shortness of breath. Dosing and timing of dialysis are var-
iables that affect the patient with physical or social limita-
tions. Examples include being located in an isolated or
particularly noisy section of the dialysis unit; the stress
associated with rushing to get ready for an early morning
dialysis session; or the change in routine associated with
eating their midday meal earlier and their evening meal
later when attending afternoon dialysis. Engaging patients
and families in discussions often leads to identification of
1884 Clinical Journal of the American Society of Nephrology
the issues and symptoms that lead to a request to reduce
dialysis. Although often perceived by staff as minor issues,
even small changes to the dialysis schedule, timing, or
location may be helpful and improve wellbeing and dial-
ysis tolerance. A number of symptoms including sleep dis-
orders, respiratory distress, and postdialysis fatigue may
be mitigated by more frequent, but shorter, dialysis ses-
sions and this option may be more acceptable to some
patients. In the three real-life scenarios described in Table
1, in-depth discussions with and psychosocial assessments
of the patients helped determine the nature of their dis-
comfort, the aim of treatment, how treatment benefits were
to be measured, and conversely, what constituted undue
burden and suffering. In each case, conventional clinical
standards of care and dialysis regimens had to be changed
to allow prioritization of the patient’s needs.
Understanding and Recognizing Common Symptoms
Associated with Advanced CKD
A diverse number of individual symptoms can be asso-
ciated with CKD. Many occur in complex clusters with an
exponentially negative effect on overall QOL (19,20).
Others present collectively in the form of syndromal pat-
terns such as depression, frailty, and/or functional decline
and falls (described in the next section). Moreover, several
of these symptom clusters can be difficult to treat in iso-
lation, and treatment planning requires careful and often
repeated evaluation for optimal success.
Nephrology care teams under-recognize the prevalence,
severity, and negative effects of symptoms in their patients
(21). Patients under-report symptoms, partly because their
symptoms are often from comorbid conditions and not the
kidney disease itself, and partly because health care pro-
fessionals tend to focus on biochemic markers and kidney
management. Without routine symptom screening, this
situation is unlikely to change. However, screening will
not improve patient outcomes unless care providers re-
spond appropriately to these assessments.
The aim of treatment is to ameliorate symptoms, as it is
not always necessary or possible to completely resolve
them. It is important to acknowledge this and negotiate
with the patient an acceptable level of symptom control.
This is well accepted in chronic pain management and
is equally relevant to other symptoms (22). A clinically
meaningful improvement for both pain and physical func-
tion has been defined as a 30% improvement in scores (22).
Given the synergistic and interrelated nature of symptoms
experienced in advanced CKD, an approach to care that
addresses overall symptom burden is likely to improve
QOL even if each individual symptom has not completely
resolved. For example, a moderate reduction in pain may
be sufficient to improve sleep, improve mood, and in-
crease the ability to cope with health challenges, resulting
in a substantial improvement in function and QOL. Con-
sideration should also be given to nonpharmacologic and
pharmacologic management strategies that are potentially
effective for managing multiple symptoms concurrently.
For example, exercise (23), cognitive behavioral therapy
(CBT) (24,25), and more frequent dialysis (26,27) have
been shown to be beneficial for sleep disorders, restless
legs syndrome (RLS) (28,29), and depression (23) (Table
2). CBT and exercise may also help treat chronic pain and
fatigue. Low dose gabapentin may provide relief from neu-
ropathic pain, RLS, uremic pruritus, and sleep disturbances,
whereas antidepressants may improve sleep, appetite,
fatigue, and pain.
Fatigue
Fatigue is one of the most widely reported and distress-
ing symptoms for patients receiving dialysis. Its prevalence
ranges from 45% to 97% in patients receiving hemodialysis
(HD), and from 30% to 70% in patients receiving peritoneal
dialysis (30). Although fatigue is challenging to manage,
the massive effect it has on patients’ lives warrants clini-
cians to identify and attempt to manage the symptom (31).
Fatigue can be described as a complex of physical sleepi-
ness, lack of energy, and weakness. It involves psycho-
logic, cognitive, and emotional domains and is closely
correlated with depressive symptoms (30). Medical issues
associated with CKD that may contribute to fatigue in-
clude anemia, inadequate dialysis, postdialysis fatigue,
and the increased effort associated with making frequent
trips to the dialysis unit for treatment. Other symptoms
such as poor sleep and anorexia may also contribute
and, in our experience, treatment is most likely to succeed
if both medical and allied health interventions are used
together. Involvement of an occupational therapist for ed-
ucation around energy conservation strategies is advis-
able. A few assessment tools specific to fatigue may be
helpful in distinguishing physical fatigue from that asso-
ciated with depressive symptoms (30,31), and can help di-
rect the clinician as to whether psychotherapy and/or
medication may be appropriate (32,33). Recent evidence
from the cancer literature suggests that in specific cases
methylphenidate may help reduce fatigue (34). There is,
to date, no evidence whether the benefit extends to those
maintained on dialysis, and there is particular concern that
it may worsen the overall wellbeing as methylphenidate
may adversely reduce appetite, increase malnutrition, and
lead to further frailty. A recent Cochrane review evaluated
the palliative management of fatigue, although most inter-
ventions have yet to be researched in patients with kidney
failure (35). Although in-depth management strategies are
beyond the scope of this article, initial considerations for
patients with CKD are outlined in Table 2.
Sleep Disorders and RLS
Sleep disorders are extremely common in patients re-
ceiving dialysis, with a mean prevalence of 60.1% in 41
studies that evaluated 7391 patients (7). Studies consis-
tently report that sleep disorders are associated with fa-
tigue, depression, and poor QOL. RLS can contribute to
poor sleep and impaired QOL and affects up to 25% of
patients receiving dialysis when the international RLS di-
agnostic criteria are applied (36). Some considerations and
management strategies are outlined in Table 2.
Pruritus
One of the most bothersome symptoms for patients
receiving dialysis is pruritus. In a study of 19,226 patients
receiving dialysis across 11 countries, the mean prevalence
of pruritus was 40.6% (7). The nature and characteristics of
pruritus vary widely, as do the causes and treatment
Clin J Am Soc Nephrol 11: 1882–1891, October, 2016
Table 1. Three cases of supportive care interventions improving patient reported outcomes
Patient-Centered Assessments
Case 1: Failure to thrive on dialysis
Medical assessment: patient in nursing care unit;
chronically volume overloaded, hypotensive, with
respiratory crackles. Marked hyperphosphatemia.
Persistent intradialytic weight gains of .7% body wt.
Active truncal and extremity calciphylaxis wounds
and severe pain. Survival estimate of 4–6 mo.
Patient goals of care and psychosocial assessment: Pain
adequately controlled on opioids. Frustration and
poor wellbeing due to not being able to eat freely at
social events like book club.
Case 2: Patient request to withdraw from dialysis
Medical assessment: stable dialysis, target laboratory
tests met. Dialysis via fistula with good flow rates.
Optimally managed on cardioprotective
medications.
Patient goals of care and psychosocial assessment:
requested planned dialysis withdrawal.
Case 3: Dementia and frailty
Medical assessment: 86-yr-old lady with dementia
requiring full personal care. Unable to ambulate or
transfer, awake, speech unclear, not orientated in
time, place, or person. Initiated onto home peritoneal
dialysis several years previously. Now with
Pseudomonas exit site infection. Not distressed,
abdomen soft. Deemed high risk for catheter removal
and reinsertion. Prognosis guarded.
Patient goals of care and psychosocial assessment: legal
substitute decision-making lay with the eldest of
three sisters, however all sisters were actively
involved in providing day-to-day care. The patient
was always the “head” of the family and highly
respected. In earlier discussions the patient had
previously expressed wishes to continue dialysis as
long as she appeared able to enjoy family events. She
eats well, laughs constantly (often inappropriately),
and there is no overt distress.
QOL, quality of life.
strategies (Table 2), and the reader is referred to recent
reviews on the topic for more detail (37). Dialysis associ-
ated pruritus has been repeatedly associated with de-
creased QOL and other symptoms such as poor sleep and
depression (38).
Gastrointestinal Symptoms
Gastrointestinal symptoms such as anorexia, nausea,
vomiting, constipation, and diarrhea are also very common
in patients receiving dialysis although less is known about
these symptoms. Uremia is a powerful trigger of the che-
moreceptor zone causing nausea but also has an adverse
Patient-Centered Assessments and CKD, Davison et al. 1885
Interventions and Outcomes
Shared decision-making: education and review of
dialysis options including the option for dialysis
withdrawal.
Patient opted for increased frequency of dialysis
sessions (35/wk) and relaxation of dietary
restrictions.
Traveled 35/wk by private ambulance for dialysis
sessions for 19 wk duration. Markedly improved
QOL during this time. Attended book club. Took on
leadership role in social club.
Repeated discussions and shared decision making on a
frequent basis. At wk 20 the patient determined QOL
was now deteriorating due to high frequency of
transfers. Reduced dialysis back to 33/wk.
Resumed fluid restrictions. Remained stable for 5 wk
then opted to discontinue dialysis. Died within 5 d.
Patient expressed desire to withdraw from dialysis. He
reported his QOL was dependent on which nurses
needled his fistula, with the majority being poor or
unpleasant experiences. On the basis of this he had
reflected and opted to withdraw from therapy.
Shared decision making led to the suggestion he have a
tunneled line insertion and dialyze via a catheter.
Repeated discussion: greatly improved QOL. Patient
continues on dialysis.
Shared decision-making: family apprised of poor
prognosis, and increased risks with exit site infection.
Family decided patient would continue with dialysis
at present with no peritoneal dialysis catheter
removal despite infection risk, but would treat with
intraperitoneal antibiotics if needed. Advance care
plan to limit transfer to hospital for care for
intravenous therapies, but not to include other
intensive or invasive procedures if patient
deteriorates. Peritoneal dialysis adapted to prioritize
fluid balance over other parameters.
Ongoing, shared decision-making.
Patient increasingly bedbound. Continues to eat well,
and laugh as before. Exit site stable. Community
nursing and social work services and telehealth
introduced to support family with care, further
decision-making, and preparation for death.
effect on gastrointestinal motility (39). Comorbidities such
as diabetes mellitus exacerbate these symptoms. In addi-
tion, many of the drugs commonly used to treat patients
with CKD such as phosphate binders, vitamin D ana-
logues, erythropoietin-stimulating agents, and supplemen-
tal iron, have prominent gastrointestinal side effects.
Similarly, so do agents used to treat other symptoms
such as opioids and selective serotonin reuptake inhibitor
antidepressants. Anorexia in particular has been associated
with malnutrition, poor QOL, depression, greater hospital-
ization rates, and an increase in mortality (40–42). The as-
sociated weight loss may contribute to fatigue and loss of
1886 Clinical Journal of the American Society of Nephrology

Table 2. Considerations for symptom management in patients with advanced CKD

Symptom Initial Considerations for Management

Fatigue Assess for modifiable contributing factors: vitamin D deficiency, metabolic acidosis,
tertiary hyperparathyroidism, hypothyroid, anemia, mood disorders (depression,
anxiety), sleep disorder, malnutrition, polypharmacy.
Postdialysis fatigue: consider modifications to the dialysis prescription such as increased
frequency.
Consider low-intensity resistance and aerobic exercise where appropriate.
Ensure the appropriate supports are in place to assist with activities of daily living and
that nursing care is available where appropriate.
Sleep disorders Assess for modifiable contributing factors and symptoms such as RLS, pruritus, pain,
dyspnea, mood disorders (depression and anxiety), obstructive sleep apnea,
medications.
Consider nonpharmacologic management first: exercise if appropriate; cognitive and
psychologic approaches (e.g., relaxation therapy, CBT); promote good sleep hygiene
(avoid napping during the day, avoid stimulants such as caffeine, alcohol and nicotine
in the evening).
Consider pharmacologic therapy if nonpharmacologic interventions are unsuccessful
and poor sleep is adversely affecting QOL: e.g., low dose gabapentin starting at 50–
100 mg postdialysis (potentially also beneficial for RLS, neuropathic pain, and
pruritus); melatonin; zaleplon 5–10 mg nightly; or doxepin 10 mg nightly.
RLS Assess for modifiable contributing factors such as anemia and iron deficiency; medications
such as dopamine antagonists, antidepressants (SSRIs, SNRIs, TCAs); calcium channel
blockers, opioids.
Consider nonpharmacologic management first: e.g., intradialytic aerobic exercise.
Consider pharmacologic therapy if nonpharmacologic interventions are unsuccessful
and RLS is adversely affecting QOL: e.g., low dose gabapentin starting at 50–100 mg
postdialysis (potentially also beneficial for sleep, neuropathic pain, and pruritus);
second-line options include nonergot derived dopamine agonists such as ropinirole at a
starting dose of 0.25 mg/d and a maximum recommended dose of 3 mg/d.
Pruritus Assess for modifiable contributing factors: anemia, iron deficiency, hypercalcemia,
hyperphosphatemia, xerosis, allergies, drug sensitivities, contact dermatitis.
Promote good skin care: avoid soap, but if used, use gentle soap; keep skin cool by
wearing light and cool clothing; avoid excessive bathing or bathing in hot water and
use emulsifying lotions in the bath; avoid scratching – keep fingernails short and
encourage massage rather than scratching, wear gloves at night; maintain a humid
home environment, especially in the winter.
Topical emollients (moisturizers) are first-line treatment. They should have high water
content and be free from fragrance and additives.
Agents that help cool skin such as a fan, especially at night, or the use of topical camphor/
menthol in the moisturizing base.
Consider other topical therapies: gamma-linolenic acid 2.2% cream applied twice daily;
capsaicin 0.025% or 0.03% ointment applied 2–4 times daily (may cause initial burning).
Consider pharmacologic therapy if the above is unsuccessful and pruritus is adversely
affecting QOL: e.g., low dose gabapentin starting at 50–100 mg postdialysis (potentially
also beneficial for sleep, RLS, and neuropathic pain); second-line treatment – consider
the TCA doxepin 10 mg nightly.
Other therapies to consider with less evidence include UVB phototherapy 33/wk and
acupuncture.
Nausea and vomiting Manage associated reversible symptoms such as constipation.
Consider nonpharmacologic management: good oral hygiene; smaller, more frequent
meals; minimize aromas; avoid foods that are greasy, spicy, or excessively sweet; relax
in an upright position after eating to facilitate digestion; apply a cool, damp cloth to
forehead or nape of neck; loose fitting clothing; complementary therapies such as
relaxation, imagery, acupressure, or acupuncture.
Consider pharmacologic therapy if the above is unsuccessful and nausea and vomiting
are adversely affecting QOL: metoclopramide 2.5 mg PO/SC q4h PRN; ondansetron
4 mg PO 33/d; haloperidol 0.5 mg PO/SC q4h PRN; olanzapine 2.5 mg PO q4h PRN.
Depressive symptoms Manage associated reversible symptoms such as pain, poor sleep, pruritus.
Assess and optimize social supports.
Consider nonpharmacologic treatments: more frequent dialysis; CBT; exercise programs.
Consider pharmacologic therapy with antidepressants if the above is unsuccessful and
depressive symptoms are adversely affecting QOL.
Clin J Am Soc Nephrol 11: 1882–1891, October, 2016 Patient-Centered Assessments and CKD, Davison et al. 1887

Table 2. (Continued)

Symptom Initial Considerations for Management

Pain Assess for modifiable contributing symptoms such as sleep and mood disorders
(depression and anxiety).
Consider nonpharmacologic management: exercise if appropriate; cognitive and
psychologic approaches (e.g., relaxation therapy, CBT).
If considering analgesics, establish whether pain is neuropathic or nociceptive in nature to
direct analgesic approach.
Adopt a step-wise approach to analgesics such as that outlined in the World Health
Organization Analgesic Ladder.
Analgesic selection, initial dosing, and titration must be individualized according to the
patient’s health, previous exposure to analgesics, attainment of therapeutic goals, and
predicted harms.
Consider a trial of chronic opioid therapy if pain is moderate to severe, is having an
adverse effect on function or QOL, and therapeutic benefits are likely to outweigh
potential harm.
Before initiating chronic opioid therapy, assess risks of substance abuse, misuse, or
addiction.

RLS, restless legs syndrome; CBT, cognitive behavioral therapy; QOL, quality of life; SSRI, selective serotonin reuptake inhibitor; SNRI,
serotonin and norepinephrine reuptake inhibitor; TCA, tricyclic antidepressant; UVB = ultraviolet B; PO = by mouth; SC = subcutaneous;
q4h = every 4 hours; PRN = when necessary.

muscle strength and initiate a cycle resulting in frailty. Al-
though the negative effects of most gastrointestinal symp-
toms in CKD have not been assessed systematically, there
is increasing recognition of their detrimental effects on
QOL. Dietary assessments and interventions are essential,
targeted at promoting appetite and energy and maintaining
body weight rather than dietary restrictions.
of sertraline versus CBT for prevalent HD patients with
depression, will likely help guide our clinical approach to
these complex patients (52). In the United States, the as-
sessment and follow-up of depression has become a re-
porting measure mandated by the Centers for Medicare &
Medicaid Services in the ESRD Quality Incentive Program
(QIP) (53).

Depressive Symptoms Pain

Depressive symptoms (as assessed by interviews or
questionnaires) and clinical depression (as assessed by
standard psychiatric criteria) are common in patients re-
ceiving dialysis. A recent systematic review of observational
studies assessed the worldwide prevalence of depression
in patients receiving dialysis. On the basis of interview
assessment, the prevalence of depression was 22.8% (95%
confidence interval, 18.8 to 27.6) (43). On the basis of self
or clinician rating scales, the prevalence of depressive
symptoms was 39.3% (95% confidence interval, 36.8 to
42.0). This is compared with the lifetime risk of depression
in the general population of approximately 7% (44). The
presence of depressive symptoms affects QOL, hospitali-
zation, and mortality rates, and has been associated with
dialysis withdrawal (45–49). Depressive symptoms are
also associated with many of the other symptoms experi-
enced by patients with CKD, such as pain, poor sleep,
pruritus, nausea, and vomiting. Nonpharmacologic treat-
ments such as more frequent HD (26,27), CBT (24,25), and
exercise (23) have been successful in treating depressive
symptoms in patients on HD (Table 2). Although data re-
main limited and inconclusive, some patients receiving
dialysis may benefit from antidepressants (50). A practical
approach to the treatment of depression in patients with
CKD has recently been outlined (51). Ongoing studies
such as the A Trial of Sertraline vs. Cognitive Behavioral
Therapy for End Stage Renal Disease Patients with De-
pression (ASCEND) trial, a randomized, controlled trial
It is well documented that over 58% of patients with
CKD experience pain (19). Chronic pain is associated
strongly with lower QOL, psychosocial distress, sleep dis-
orders, and depression. Despite the high prevalence, pain
remains poorly treated. Large international observational
studies have shown that analgesic use is low in these pa-
tients. Basic principles of chronic pain management in
CKD are outlined in Table 2 and the reader is referred
to a recent review on the topic for further details and ther-
apeutic approaches (19). As with depression, the assess-
ment and follow-up of pain has become a reporting
measure mandated by the ESRD QIP (53).
Recognizing and Advocating for Patient-Centered
Care in Those Presenting with Geriatric Syndromes
Geriatric syndromes is the term used to describe a group
of common health conditions in older people that do not fit
into discrete disease categories. This includes changes in
cognitive function, falls, incontinence, and frailty. Almost
invariably, the presence of one or more geriatric syndromes
will negatively affect the patient’s life as well as that of
their family and social circle. Recognition of these syn-
dromes should trigger frequent discussions around goals
of care and advance care planning.
In the clinical realm, frailty is a complex syndrome
associated with increased vulnerability resulting from
a combination of problems in different domains of daily
1888 Clinical Journal of the American Society of Nephrology
functioning, including physical, sensory, psychologic, and
social domains. It has multiple causes and contributors,
and is characterized by diminished strength and endur-
ance, and reduced physiologic function that increases an
individual’s vulnerability for developing increased depen-
dency and/or death (54,55). Operational definitions for
determining frailty vary and a multitude of validated mea-
surement scales have been used (56). This contributes to
much of the variability in estimated prevalence. The sole
use of the physical domain as a surrogate measure for the
global assessment of frailty, such as the Fried et al. classi-
fication based on five physical components – unintentional
weight loss, decreased strength, decreased exercise toler-
ance, reduced gait speed, and fatigue (57) – may be an
inadequate metric for frailty in CKD. Social determinants
of frailty, such as those associated with environmental and
mental wellbeing, are also of importance and may be rec-
ognized through more holistic assessments. The Clinical
Frailty Scale is an example of a simple and clinically useful
validated tool for assessing global frailty status. It is esti-
mated that around 40% of individuals on dialysis have
frailty characteristics (58). Although more prevalent in
older populations (,20% of those aged $65 years remain
independent in all activities of daily living), there is an
unexpectedly high burden in younger individuals on
dialysis (59).
Frailty in patients with CKD is an elevated state of risk
compared with other people of the same chronologic age. It
identifies those at risk for increased morbidity such as falls,
hospitalization, dependence, or need for long-term care,
and increased mortality. Patients with CKD with frailty
phenotypes have an estimated 2.6-fold higher risk of
mortality and 1.4-fold higher number of hospitalizations,
independent of age, comorbidity, and disability (60).
Frailty is often associated with a decline in physical func-
tion, including physical activity, exercise capacity, social
participation, and self-care abilities. The decline often oc-
curs soon after starting dialysis and is most prominent in
older individuals (61,62). Patients with early changes in
functional independence may present initially with re-
duced participation in personal activities such as hobbies,
but as time progresses these changes affect household activ-
ities such as grocery shopping, laundry, and meal prepara-
tion, and/or personal care activities such as dressing and
toileting. The overlap with frailty and functional decline ex-
tends to accidental falls. Falls are almost twofold more com-
mon in the dialysis population, both in those maintained on
HD and those on peritoneal dialysis (63,64).
Frailty is a dynamic process, but transition to a worse
state is more common than to a better state, with limited
evidence of effectiveness of interventions such as exercise.
In the dialysis population, modifications of the dialysis
treatments may be beneficial. The requirement to sit for 4
hours can be almost intolerable for some patients and may
contribute to functional loss. Shorter, more frequent ses-
sions may be more tolerable. Gentle intradialytic exercise,
with or without the use of analgesics, can help manage symp-
toms such as restless legs and a sore back from inactivity,
while helping to preserve function and improve mood.
Frailty is often associated with social isolation, depres-
sion, and cognitive impairment, and is an easily de-
termined clinical marker of those at high risk of poor
outcomes. In the dialysis population, the presence of frailty
should trigger open discussions reviewing the current goals
of care, prognosis, and more frequent evaluation of symp-
toms. In addition, patients should be empowered to discuss if
they wish to transition to palliative dialysis or withdraw from
dialysis. The communication skills needed to negotiate these
challenging conversations can be learned (65) and new tools
and online resources such as Vital Talk (66) can help care
providers facilitate discussions.
Identifying Process Barriers That May Arise When
Patient-Centered Dialysis Care Is Introduced into
Clinical Practice
Current models of care place much emphasis on survival,
hospitalization, and the ability of hospitals and physicians
to meet certain standards. For the dialysis patient this is
often in the form of laboratory targets and attainment of
clinical parameters that are associated with prolonged life-
span, such as predialysis care and fistula or graft creation and
use. Although well meaning, this approach overlooks the
patient experience of and preferences for care.
The provision of patient-centered care will require full
integration of kidney supportive care, including the regular
assessment of symptoms, QOL, and geriatric syndromes
such as frailty, into contemporary dialysis care. These assess-
ments will guide health care providers as summarized in
Table 3. Many of the valid screening and assessment tools
are simple and can be incorporated into busy clinical prac-
tices. However, responding appropriately to assessments
will require models of care that encourage enhanced com-
munication and multidisciplinary assessments. Dialysis
guidelines and standards of care must start addressing di-
rectly these outcomes and using these patient-centered as-
sessments to both guide and evaluate the quality of care (67).
Aligning policies and payments will be essential. For
example, more flexible dialysis shifts will facilitate the
tailoring of dialysis runs to the specific needs of individual
patients. Increased technical and caregiver support are
needed to help overcome barriers, such as caregiver burden,
and facilitate greater uptake of newer home dialysis regi-
mens, such as short daily HD and nocturnal HD, which have
resulted in improvements in sleep, depressive symptoms,
cognitive function, recovery time postdialysis, patient satis-
faction, and overall QOL (68–73). Home dialysis modalities
not only permit the dose of dialysis to be tailored more suit-
ably to the specific needs of the patient, but prevent poten-
tially lengthy transportation to and from dialysis units,
allowing patients more time at home with loved ones.
Future Directions
The metrics by which we assess the integration of kidney
supportive care and the quality of patient-centered care
will be challenging and have been discussed elsewhere
(53,67,74,75). However, these metrics will almost certainly
involve regular assessment and follow-up of symptoms,
geriatric syndromes, and effect of care on QOL. This will
require the implementation of clinical policy that encour-
ages ongoing dialogue between the patient and the care
team to ensure that treatments remain aligned with what
matters most to individual patients and that health care
providers understand what constitutes undue burden and
Clin J Am Soc Nephrol 11: 1882–1891, October, 2016
Table 3. Keys roles for symptom, QOL, and geriatric syndrome assessments
Role
Early identification of patients with increased
physical, psychologic, and social care needs
Timely interventions
Prognostication
Shared decision-making and advance
care planning
Facilitation of multidisciplinary assessments
Metrics for quality patient-centered care
QOL, quality of life.
suffering (76). These metrics will need to permit flexibility
in clinical standards of care and dialysis regimens so they
can be tailored appropriately for each patient. The valida-
tion of assessment tools and metrics for patients with ad-
vanced CKD and those on dialysis will be an important
area of research.
Delivery of patient-centered dialysis will require a shift in
resources. Rigorous and comprehensive prospective eco-
nomic evaluations of kidney supportive care services are
needed to (1) identify high resource use patterns, (2) facilitate
resource planning, and (3) aid our understanding of factors
associated with significant health care and patient/caregiver
borne costs, and (4) are anticipated to show cost savings
while improving patient outcomes. This is discussed in
greater detail within this Moving Points feature (77).
Supportive care is central to the provision of patient-
centered care for patients with chronic diseases. Therefore,
many countries are placing increased emphasis on the
provision of supportive and end-of-life care by “generalist”
Patient-Centered Assessments and CKD, Davison et al. 1889
Key Considerations
Screening in isolation is inadequate – appropriate action must be
taken.
Screening tools must be simple enough to integrate into busy
clinical practices but complex enough to provide clinical/
treatment direction.
Without assessments, family members and health care
professionals are unable to predict accurately patients’
symptom burden, QOL, or treatment preferences.
The goal is to enhance support, address concerns, promote QOL,
and help preserve physical function.
Symptom burden, QOL, cognitive and functional impairments,
frailty, and other geriatric syndromes are likely more reliable
predictors of outcome.
Assessment of comorbidities.
Regular assessments will improve our understanding of illness
trajectories and enhance our ability to prognosticate the
outcomes most relevant for patients, such as the effect of
treatments on QOL, symptoms, and physical function (10).
These assessments provide an entry point for difficult discussions
about prognosis and goals of care where patients (1) identify
themselves as needing enhanced support through high
symptom scores or poor QOL or physical function scores, and
(2) communicate treatment goals (9).
The aim is the prevention of unnecessary suffering through the
use of treatments that have become excessively burdensome
or not consistent with patients’ wishes.
The treatment of many symptoms, especially pain and
depression, as well as the reversal of functional decline and
frailty, typically requires multidisciplinary, multipronged
interventions to be effective. This may involve nephrologists,
geriatricians, palliative care specialists, nurses, social workers,
physiotherapists, or physical rehabilitation specialists,
spiritual counsellors, and dieticians to name some.
These patient-centered outcomes and assessments serve as
determinants of treatment outcome, both treatment benefit and
what constitutes undue burden and suffering (74).
and community providers as a component of usual care
(78). Kidney supportive care, therefore, must become a
core clinical competency of CKD management. This will
require medical schools, nursing schools, and nephrology
fellowship programs to integrate discussions around goals
of care and the management of symptoms and geriatric
syndromes into curricula. Professional societies will need
to support continuing development for all health care pro-
viders. Improved partnerships with specialist supportive
(palliative) care colleagues will be required for more complex
patients, particularly as they transition to end-of-life care.
Acknowledgments
S.N.D. has research funded by the Canadian Institutes of Health
Research (funding reference nos. 89801, 126151, and 126193), and
Alberta Innovates Health Solutions (funding reference no. 201400400).
Disclosures
None.
1890 Clinical Journal of the American Society of Nephrology
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