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 management, Neph
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 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, selfmanagement has been shown to be associated with improved outcomes. Selfmanagement 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. [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 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, 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 selfmanagement 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 self-management 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 self-management 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 selfmanagement 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 selfefficacy (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; UKDepartment 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 (UKDepartment 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). Selfmanagement 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 selfmanagement (i.e., self-care, 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 self-management 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 self-efficacy
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 selfmanagement 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, selfcare 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 (KellyPowell, 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 self-management 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 self-management 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 (UK-Department
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, disease-specific 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 selfmanagement 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 self-management 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 faceto-face teaching of self-management 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 self-management
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 self-management 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.