Self-Management in Patients with End Stage Renal Disease: Exploring Domains

and Dimensions
Roberta Braun Curtin, Donna Mapes, Dori Schatell, Sally BurrowsHudson. Nephrology Nursing Journal. Pitman: Jul/Aug
2005.Vol.32, Iss. 4; pg. 389, 7 pgs

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Kidney diseases, Medical treatment, Hemodialysis, Disease m

Roberta Braun Curtin, Donna Mapes, Dori Schatell, Sally Burrows-Hudson
Feature
Nephrology Nursing Journal. Pitman: Jul/Aug 2005. Vol. 32, Iss. 4; pg. 389, 7 pg
Periodical
1526744X
889774431
5072
http://proquest.umi.com.dbgw.lis.curtin.edu.au/pqdweb?did=905723471&sid=1&

Abstract (Document Summary)

The management and appropriate treatment of chronic disease are
ongoing challenges in health care. As the population ages, the
prevalence of chronic disease can be expected to increase. Since by
definition there is no cure for chronic disease, controlling, minimizing,
or managing its negative effects becomes a primary goal. In the selfmanagement perspective, it is neither clinicians nor health care
systems who must accomplish the bulk of chronic disease
management but rather the patients themselves. Moreover, selfmanagement has been shown to be associated with improved
outcomes. Self-management is comprised of two domains: selfmanagement of health care and self-management of everyday life.
Self-management of health care includes self-care activity,
partnership in care, communication, self-care self-efficacy, and
adherence. Self-management of everyday life entails
achieving/maintaining "normality" in everyday roles and functioning.
End stage renal disease (ESRD) is a chronic diseasefor which selfmanagement is particularly relevant. Understanding the components
of self-management may help patients and clinicians to embrace
this approach, to enter the mutual relationship it requires, and to
maximize positive outcomes for patients with ESRD. [PUBLICATION
ABSTRACT]

Full Text (5072 words)

Copyright Anthony J. Jannetti, Inc. Jul/Aug 2005
[Headnote]
The management and appropriate treatment of chronic disease are ongoing challenges
in health care. As the population ages, the prevalence of chronic disease can be
expected to increase. Since by definition there is no cure for chronic disease,
controlling, minimizing, or managing its negative effects becomes a primary goal. In
the self-management perspective, it is neither clinicians nor health care systems who
must accomplish the bulk of chronic disease management but rather the patients
themselves. Moreover, self-management has been shown to be associated with
improved outcomes. Self-management is comprised of two domains: self-management
of health care and self-management of everyday life. Self-management of health care
includes self-care activity, partnership in care, communication, self-care self-efficacy,
and adherence. Self-management of everyday life entails achieving/maintaining
"normality" in everyday roles and functioning. End stage renal disease (ESRD) is a
chronic diseasefor which self-management is particularly relevant. Understanding the
components of self-management may help patients and clinicians to embrace this
approach, to enter the mutual relationship it requires, and to maximize positive
outcomes for patients with ESRD.

Management and appropriate treatment of chronic disease are

ongoing challenges for health care institutions as well as for society as
a whole (Clark, 2003). In the next 20 years, the number of people in
the U.S. over the age of 65 is expected to increase to more than 53
million, and there is every reason to believe that as the population
ages, the prevalence of chronic disease will increase concomitantly
(Bodenheimer, Lorig, Holman, SL Grumbach, 2002). Chronic disease is
already the principal basis for disability, the main reason for health
care seeking, and is responsible for 70% of health care spending in
this country (Holman & Lorig, 2000). Since no cure is available for
most chronic diseases, controlling, minimizing, or managing negative
effects becomes an important charge. Any chronic disease may
require significant medical intervention over its course. Nonetheless,
some believe that clinicians and health care systems cannot bear the
major responsibility for the management of chronic disease on an
everyday basis; but rather that patients themselves must do so (Clark,
2003). Moreover, at the same time that it is becoming increasingly
apparent that some degree of patient self-management is necessary
in chronic disease, there is also growing verification that
selfmanagement by patients contributes to better health outcomes
(Lorig, Sobel et al., 1999; Meers et al, 1996). As is evidenced by its
explicit inclusion in the Institute of Medicine (IOM) report, Crossing the
(Quality Chasm: A New Health System for the 21st Century (IOM,
2003), the topic of patient self-management has definitely come of

age in the U.S.

End stage renal disease (ESRD), whether treated by transplant or
dialysis, is a chronic disease for which patient self-management is
particularly important. Individuals with ESRD are at risk for a broad
array of complications, experience many symptoms, have stringent
dietary and fluid restrictions, and have to adhere to complex
medication regimens. Simply stated, the goal of chronic disease
management is to simultaneously achieve the highest level of
functioning and the lowest level of symptoms given the severity of the
disease (Clark, 2003). In the case of ESRD, this goal is largely
unattainable without patients' active and comprehensive selfmanagement of all aspects of life with ESRD (Curtin, Johnson, Schatell,
2004; Curtin, Mapes, Petillo, & Oberley, 2002).
Self-Management of Health Care and Self-Management of Everyday
Life
Gruman and Von Korff (1996) have proposed that self-management
involves patients' engagement in activities that protect and promote
health; their observation of symptoms and signs of illness; their
adherence to treatment regimens; and their management of the
effects of illness on functioning, emotions, and interpersonal
relationships. Similarly, Curtin and Mapes (2001) have defined selfmanagement as "patients' positive efforts to oversee and participate
in their health care to optimize health, prevent complications, control
symptoms, marshal medical resources, and minimize the intrusion of
the disease into their preferred lifestyles" (p. 386).
Enlarge 200%
Enlarge 400%
Figure 1
Patient Self-Management of Chronic Illness

The same two distinct and major domains of self-management can be

distilled from each of these definitions (see Figure 1). The first domain
is self-management of health care. This self-management of health
care domain subsumes several interdependent dimensions: (a)
communication, (b) partnership in care, (c) adherence, (d) self-care
activities, and (e) self-care self-efficacy (Curtin, Johnson, et al., 2004;
Holman & Lorig, 2000; Zrinyi et al., 2003). The second domain
suggested by both definitions of self-management is self-management
of everyday life, which is represented as "functioning, emotions, and

interpersonal relationships" in the first definition and as "preferred

lifestyles" in the second. This second domain involves achievement
and maintenance of "normality" in usual roles and functioning (Curtin,
Johnson et al., 2004; Kelly-Powell, 1997; Lindqvist, Carlsson, & Sjoden,
2000).
The First Domain
Self-management of health care: Communication. Communication is
the cornerstone upon which the other dimensions of self-management
are built; none of the other dimensions is possible without good
communication between patients and clinicians. For self-management
to be a possibility, patients must be able to report their symptoms,
problems, experiences, and concerns, and must receive, in turn, from
the health care team, information, answers, support, and guidance.
The ultimate endpoint of effective communication is "concordance" an agreement between a patient and a health care professional that
respects the patient's wishes and beliefs and assures that the patient
has had a proactive role in treatment decisions (Epstein, Alper, &
Quill, 2004; UK-Department of Health, 2001; UK-Department of Health,
1999).
It is important for clinicians to communicate specific information and
messages that patients can translate into actual self-care behaviors.
As well-known author on the topic Noreen Clark (2003) notes,
"Information that is irrelevant to patients' personal concerns or that
does not affect behavior is not constructive" (p. 306). Clark further
suggests that although clinicians other than physicians can provide
such information, the doctor is usually viewed by patients as the most
credible source of medical advice. In the case of patients with ESRD
treated with hemodialysis (HD) or peritoneal dialysis (PD), dialysis
nurses may also be able to fill this role. Similarly, transplant patients
may look to their transplant coordinators for regular information
exchange. Regardless of which member of the health team serves as
the primary "communicator," it is clear that regular, mutual, and
comfortable exchanges of experience and information between
clinicians and patients can clarify the best possible ways to manage
the disease and its effects in everyday life (Bodenheimer et al., 2002;
Clark, 2003).
Self-management of health care: Partnership in care. Partnership in
care is a second key component of self-management. Its
interdependence with the communication dimension is clear:
Partnership is only possible with effective communication (Clark,
2003; Epstein et al., 2004). In the past, health care professionals were
considered the experts in health care and patients were regarded as

passive recipients of care (Bodenheimer et al., 2002). This

perspective, which was useful in the treatment of acute illness, has
been replaced by a paradigm that better suits the reality of chronic dis
ease in general and ESRD in particular (Bodenheimer et al., 2002;
Curtin & Mapes, 2001; Lorig & Holman, 2003). The new viewpoint
suggests that patients need to become experts in their own health
care since they literally live with their illness and its consequences
every day (UK-Department of Health, 2001). However, although
patients may become knowledgeable about their own illness
experience and circumstances, it is not possible for them to safely
engage in self-care activity unless excellent communication has been
established and a working partnership relationship with key health
care professionals is in place.
For example, patients with ESRD frequently suffer from one or more
comorbid conditions and also may have a broad array of symptoms on
a fairly regular basis (Curtin, Bultman, Thomas-Hawkins, Walters, &
Schatell, 2002). To be effective self-managers, patients must be able
to distinguish between symptoms/situations they can manage
themselves (at least until their next meeting with their health care
professionals) and those which should be reported immediately
(Curtin, Mapes et al., 2002). They must be encouraged to manage the
self-manageable and to consult with their health care partners for
circumstances that need urgent intervention. This is a far more
independent and proactive role for patients than has been the case in
the past, and such a role is really only possible if a true partnership
relationship has been established (UK-Department of Health, 2001).
Successful partnership assures that self-care activity is informed,
monitored, tailored, and modified as necessary. If the partnership is
successful, the benefits of self-management can be realized and
patients' overall care can be optimized.
Self-management of health care: Adherence. Since repeated studies of
the topic of adherence to medical regimens have been unable to
identify consistent predictors of non-adherence, it is probably safest
and most practical to assume that all patients need some combination
of special interventions to increase the likelihood of adherence (Clark,
2003; Kutner, 2001; Morgan, 2000). Self-management pioneer Kate
Lorig (2002) suggests that patients are the best judges of what is
actually possible for them and may be non-adherent if the
expectations of their health care professionals are not realistic for
their circumstances. This observation once again illustrates the
interdependence of the various dimensions of self-management. If
communication is effective and a partnership relationship is in place,
adherence will be more likely. This is the case because good
communication in the partnership context allows for feedback to be

given and received and for appropriate goals for patients' health
activities and behaviors to be negotiated rather than "imposed."
For patients with ESRD, adherence to the treatment regimen is both
particularly important and particularly difficult. For example, patients
on dialysis must have regular dialysis sessions that are time
consuming and sometimes uncomfortable. Non-adherence to dialysis
prescriptions is associated with an increased risk of mortality and
morbidity (Bernardini, Nagy, & Piraino, 2000; Leggat et al, 1998).
Additionally, virtually all patients with ESRD are likely to be required to
monitor diet and fluid intake and to take multiple medications - in
addition to following a generally healthy lifestyle overall with regard to
smoking, alcohoi, weight maintenance, regular exercise, etc. Although
specific strategies to improve adherence among patients requiring
dialysis and transplant have not been systematically examined, the
principles subsumed under the rubric of self-management (i.e., selfcare, partnership in care, improved communication, and increased
self-efficacy) seem a most likely route to increased adherence (Kutner,
2001; Loghman-Adham, 2003).
Self-management of health care: Self-care activity. In the recent past,
the terms self-care and self-management have been used
interchangeably (Curtin & Mapes, 2001; Lorig & Holman, 2003). It is
only as our understanding of the concept of self-management has
matured over the past several years that it has become increasingly
apparent that self-care is just one of several dimensions of the selfmanagement domain (Curtin, Johnson et al., 2004). As its name
implies, self-care is the "action" dimension of self-management in
health care and it derives in part from a patient empowerment
approach. Patient empowerment has been defined as a philosophy of
health care that proceeds from the perspective that optimal outcomes
of health care are achieved when patients become active participants
in the health care process (Brennan & Safran, 2003). Without a doubt,
being active in health care includes performing at least some aspects
of physical care. As such, self-care behaviors, such as measuring fluid
intake or blood pressure or checking access bruit are included (Curtin,
Bultman Sitter, & Schatell, 2004). However, more general health care
related action steps are also subsumed in the dimension of self-care,
including interacting with health care professionals, goalsetting,
contacting resources, negotiating for and choosing treatments,
decision making, information-seeking, responsibility for consequences,
symptom reporting, wellness behaviors, etc.
For patients with ESRD, the level of self-care activity required may
vary by modality and from patient to patient. However, every ESRD
patient must make decisions on a daily basis about positive and

negative health-related behaviors and must perform a whole host of

specific health-related self-care activities as well. The empowerment
perspective suggests that patients can acquire the knowledge, skills,
and responsibility to take action and effect changes that can improve
their health care and promote their overall health status (Anderson et
al., 1995; Feste & Anderson, 1995; Funnell et al., 1991). Because of its
broad applicability to people with chronic illnesses, self-care, as it is
viewed in the empowerment perspective is an integral part of overall
self-management of health care.
Self-management of health care: Self-care self-efficacy. Self-care selfefficacy is another important dimension of overall self-management.
Ongoing qualitative research has consistently verified the important
role that "feeling in control" plays in individuals' self-described quality
of life and successful adaptation to life with a chronic disease (Curtin,
Johnson et al., 2004; Curtin, Mapes et al., 2002; Lenker, Lorig, &
Gallagher, 1984). In an effort to further explore and understand such
findings, Lorig and her associates operationalized the concept of
control or empowerment as self-efficacy and then examined it in the
context of self-management activities and outcomes (Lorig SL
Holman, 2003). The investigations yielded the expected results:
Increased self-efficacy is associated with positive changes in health
care behaviors as well as in health status (Lorig, Gonzalez, & Ritter,
1999; Lorig & Holman, 2003; Lorig, Sobel et al., 1999).
In practice, perceived self-efficacy means that individuals are
confident that they can perform certain actions to achieve desired
outcomes, and are also secure in the belief that the actions they take
will produce the outcomes they seek (Bandura, 1997). With regard to
ESRD, research has verified the relationship between the self-efficacy
of patients on HD and their interdialytic weight gain, serum potassium
levels, "favorable" compliance attitudes, and better relationships with
staff (Zrinyi et al., 2003). Other research has suggested a relationship
between selfefficacy and positive mood states, health status, and
improved adherence to fluid limits (Lev & Owen, 1998). Evidence is
growing that building confidence around a self-care or treatment
regimen behavior as part of a clinician-patient communication or an
educational program may increase the likelihood of that behavior
(Clark & Dodge, 1999). Certainly, self-care principles must be taught
and self-care skills developed as well. However, building patients'
confidence in their ability to affect the outcomes they have targeted
seems to be another positive way to encourage successful selfmanagement among people with chronic illness.
The second Domain

Self-management of everyday life: Achieving or maintaining

"normality." The second major domain of overall self-management is
self-management of everyday life. This domain is embodied in the
single dimension of normality (i.e., individuals' ability to achieve or
maintain what is perceived as "normal" in as many aspects of
everyday living as is possible). In acute illnesses, patients suspend
their normal lives until they can recover from their illness. Once
recovered, they expect to be able to resume those same lives and
occupy the same roles (Curtin & Mapes, 2001). The situation is very
different with the diagnosis of a chronic illness. Because chronic
disease is life-long, patients are required to make adjustments to their
"normal" ways of living. A first step in this process is taking stock of
the nature and scope of the constraints imposed by the illness and
then learning to live within them (Morse, 1997). Either old role
repertoires must be adapted to fit the constraints of the condition, or
new role repertoires must be developed (Curtin, Mapes, Petillo &
Oberley, 2002). Additionally, patients must address the emotional
ramifications of having a chronic condition, a reality which necessarily
alters their overall views of life, their goals, and their aspirations
(Corbin & Strauss, 1988; Morse, 1997).
The desire for as near "normal" a life as possible is commonly
reported by patients on dialysis. In one qualitative study of patients
on PD, a pervasive "wish for independence and normality" was
identified (Lindqvist et al., 2000). In another qualitative study, efforts
to "sustain the current self" included personal choices that supported
the maintenance of "normal" lives and roles (Kelly-Powell, 1997).
Finally, a recent qualitative study found that patients on PD attempted
to achieve normality by using treatment flexibility as an opportunity to
preserve current role repertoires or to create new ones, by facing
changes in body image directly and reinterpreting new body images in
as optimistic and practical a manner as possible, and by reframing
diagnoses/prognoses in a positive light without denying their reality
(Curtin, Johnson et al., 2004). In practice, achieving normality involves
grappling with the primary areas of concern that have been identified
among patients with ESRD on dialysis, including continuing
symptoms, limitations resulting from dialysis treatments,
relentlessness and uncertainty of life on dialysis, and an altered
relationship between autonomy and dependence that is inherent in
life on dialysis (Curtin, Mapes et al, 2002; Polaschek, 2003). The
definitions presented earlier specified that self-management of
everyday life would require that patients with chronic illness manage
the effects of illness on functioning, emotions, and interpersonal
relationships, and minimize the intrusion of the disease into their
preferred lifestyles. Patients are seemingly able to accomplish this
difficult task by preserving normality in their new lives with chronic

disease.
Conclusion
Since there is no primary prevention or cure for most chronic
diseases, the goal of chronic disease management is to achieve the
highest level of functioning and the lowest level of symptoms
possible, given the severity of the disease (Clark, 2003). Patient selfmanagement of both the health care-related aspects of life and the
everyday aspects of life affected by the disease seems to be the most
promising route for achieving that goal. Moreover, there is substantial
evidence in the literature suggesting that self-management skills can
be taught, self-management efforts can be supported, and selfmanagement activities can contribute to positive health outcomes
(Lorig, Gonzalez et al., 1999; Lorig & Holman, 2003; Lorig, Sobel et al.,
1999).
In spite of the overall practicality of this approach and the mounting
evidence for its success, self-management programming has been
slow to be established on any sort of large scale or systematic basis in
the US. However, the Stanford Patient Education Center, under the
leadership of Kate Lorig, has enjoyed great success and has had
significant impact. This center has developed and tested both
condition-specific programs and also a program applicable across
disease entities. Lorig and Holman (2003) reported that the latter
program, the Chronic Disease Self-Management Program (CDSMP) has
now been adopted by three major HMOs and 150 smaller HMOs across
the U.S. Additionally, the National Health Service in the United
Kingdom has initiated an Expert Patient initiative based on the
principles of self-management and using both the CDSMP and ongoing
consultation with Lorig as integral parts of its planning (UKDepartment of Health, 2001). Although the implementation of these
programs represents an enormous step forward, there is still a long
way to go toward the goal of making self-management an accepted
and expected part of health care. Unfortunately, there is an especially
long way to go in ESRD since a comprehensive, systematic, diseasespecific self-management program for patients with ESRD has yet to
be designed and tested.
End stage renal disease, with its associated complications, multiple
symptoms, and complex treatment requirements is a chronic disease
for which patient self-management seems particularly appropriate.
Unfortunately, there is relatively little information in the literature
about self-management programming for patients with ESRD. The Life
Options Rehabilitation Program has been championing selfmanagement for patients with kidney disease, including patients with

ESRD for the past 11 years, most recently through its on-line selfmanagement curriculum called Kidney School(TM)
(www.kidneyschool.org). Additionally, Life Options produced a series
of newsletters devoted to the topic of self-management for patients
with kidney disease (Life Option Rehabilitation Program, 2001; Life
Options Rehabilitation Program, 2000 a-d). Based on such information,
there is reason to hope that some inroads have been developed.
However, to date, the self-management efforts reported in the ESRD
field have tended to be intermittent initiatives rather than long-term,
programmatic interventions.
The successful management of illness and treatment and the
simultaneous maximization of overall quality of life are important
agendas for individuals with chronic disease. Helping patients with
ESRD realize these goals should be a primary responsibility of the
health care professionals who provide their health care. The principles
and tenets surrounding the concept of self-management seem to
represent the best avenue for making such goals a reality for
individuals with ESRD. If institutional level changes are slow in
coming, there are nevertheless many opportunities in the practice of
nephrology for encouraging self-management on a case-by-case basis.
For example, nephrologists, nephrology nurses, social workers, and
dietitians are all in the position to help patients with ESRD to be
successful self-managers. Because nephrology nurses have contact
with patients as modality decisions are being made, as the dialysis
process is being learned, and as understanding of the ramifications of
ESRD is beginning to occur in patients, they can be involved both in
teaching patients about the value of self-management and in
supporting patients in their early efforts to partner in their own care.
Nephrology nurses can consistently strive for improved
communication and can actively pursue the concordance that
precedes patient adherence to prescribed regimens. Nurses can seek
to transmit the information that patients require for making decisions
regarding their own care and can help patients gain confidence that
the actions they (patients) take will lead to the positive outcomes they
desire. Additionally, nephrology nurses can guide and encourage
patients as the patients begin to explore how they will adapt their
everyday lives to the new life state in which they find themselves.
Over time, even such individual level interventions will likely have a
significant positive effect and will contribute to the understanding and
application of the concepts of self-management for patients with
ESRD. In this manner, given enough time and sufficient instances,
self-management education and support might be incorporated into
routine care for patients with ESRD.
Additional research into the impact of self-management on the

outcomes of patients with ESRD should also be a priority. Because

ESRD is a chronic disease with many unique requirements,
restrictions, medications, and complications, as a first step to such
research, a systematic program for face-to-face teaching of selfmanagement to patients with ESRD would have to be devised.
Presumably such a program could be based on the model of Lorig's
Chronic Disease Self-Management Program (CDSMP). With the
established model of the CDSMP disease-specific programs as a guide,
the necessary educational materials, activities and interventions
might be fairly easily adapted to ESRD. Once a program was
established, research in the form of modified controlled clinical trials
or demonstration projects could be implemented. A wide range of
patient outcomes have been considered in past research on selfmanagement, including symptom distress, adherence, self-efficacy,
depression, health care utilization, functional status, quality of life,
and morbidity (Anderson et al., 1995; Bodenheimer et al, 2002; Janson
et al., 2003; Eev et al., 2001; Lorig, Sobel et al, 1999). Measurement
of a selection of these same outcomes in a study of the impact of a
self-management program for patients with ESRD would allow not only
comparison between the intervention (self-management) and control
groups, but would also allow comparison across disease conditions
based on past research. More importantly, it would provide valuable
insight into the real impact of the ESRD-specific self-management
program on patient outcomes. Should the outcomes of patients with
ESRD be positively affected, as were the outcomes of the patients in
previous research, broader acceptance and greater appreciation of the
value of self-management in the ESRD condition would likely result.
As understanding of the components and requirements of selfmanagement becomes more widespread, patients and clinicians may
be increasingly motivated to adopt this valuable approach, to enter
the mutual relationship it requires, and to achieve maximization of
positive outcomes for patients with ESRD - thereby transforming selfmanagement from an academic construct into a lived reality.
[Reference]
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[Author Affiliation]
Roberta Braun Curtin, PhD, RN, is Research Director, Medical Education Institute,
Madison, WI, and research consultant, Life Options Rehabilitation Program, and is a
member of the Windy City chapter of ANNA.
Donna Mapes, DNSc, MS, RN, is Adjunct Senior Researcher, URREA, Ann Arbor, Ml,
and Adjunct Assistant Clinical Professor, University of California San Francisco,
School of Nursing, and is a member of the Chumash chapter of ANNA.
Dori Schatell, MS, is Executive Director, Medical Education Institute, Madison, WI,
and Program Director, Life Options Rehabilitation Program, and is a member of the
Badger chapter of ANNA.
Sally Burrows-Hudson, MSN, RN, CNN, is Director, Medical Affairs for Bone Care
International, and Assistant Clinical Professor, University of California at San
Francisco, School of Nursing. She is a Past President of ANNA, and is currently a
member of the Silicon Valley chapter of ANNA.