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Jeannie V. Pasacreta, PhD, RN
Amy L. Kenefick, PhD, APRN
Ruth McCorkle, PhD, FAAN
Managing Distress in Oncology Patients
Description of an Innovative Online Educational Program
for Nurses
KEY WORDS
Cancer
Case finding
Coping
Distress
Education
Psychosocial
The American Psychosocial Oncology Society and the Individual Cancer Assistance
Network have launched the online continuing education accredited program
‘‘ICAN: Distress Management for Oncology Nursing’’ to address the ability of
oncology nurses to assess, treat, and refer patients with a range of psychosocial
problems. An important goal of the program is to reduce traditional barriers to
psychosocial oncology education by providing the oncology nursing community with
easy access to information from experts in the field. There are 4 Internet webcasts:
Nurse’s Role in Recognizing Distress in Patients and Caregivers; Assessment
Recommendations; Treatment Strategies; and Principles and Guidelines for
Psychotherapy and Referral. The program examines the prevalence and dimensions
of patient distress and offers instruction on how to effectively integrate screening
tools, such as the Distress Thermometer and Problem Check List, into clinical practice.
It provides details on relevant interventions and referral algorithms based on the
National Comprehensive Cancer Network Guidelines for Distress Management.
It explores the devastating impact of psychological distress on quality of life,
and the unique position of nurses in busy inpatient settings, outpatient clinics,
and offices to detect, intervene, and refer to appropriate services. Providing
information over the Internet addresses common barriers to learning, including
schedule and time constraints.
Oncology nurses are on the ‘‘frontline’’ of patient care,
and as such, they are responsible for assessing, treat-
ing, and referring patients and caregivers who exhibit
a range of psychosocial problems. In acute, outpatient, and
homecare settings, nurses receive the most concentrated ex-
posure, when compared with other disciplines, to the intense
psychological reactions that accompany cancer illness and
treatment. Rapid scientific gains are intensifying this exposure
Managing Distress in Oncology Patients Cancer Nursing
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, Vol. 31, No. 6, 2008 n485
Copyright B2008 Wolters Kluwer Health | Lippincott Williams & Wilkins
Authors’ Affiliations: School of Nursing (Drs Pasacreta and Kenefick)
and School of Medicine (Dr Kenefick), University of Connecticut, Storrs;
and School of Nursing, Yale University, New Haven, Connecticut (Dr
McCorkle).
Corresponding author: Amy L. Kenefick, PhD, APRN, School of
Nursing, University of Connecticut, 321 Glenbrook Rd, Storrs, CT 06269-
2026 (amy.kenefick@uconn.edu).
Accepted for publication June 16, 2008.
Copyright @ 2008 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
with increases in the number of individuals receiving cancer care
at any given time, their longevity, and the chronicity of
distressing symptoms. Furthermore, these distressing symptoms
are experienced within an increasingly complex, fragmented,
and impersonal healthcare system, intensifying them further.
The rapidity and extent of technological change, along with its
impact on intensifying psychological needs, cannot be over-
stated. Standardized, accessible educational programs that help
nurses to address the assessment, treatment, and referral of these
common problems are very much needed.
1,2
A recent Institute of Medicine
3
report entitled ‘‘Cancer Care
for the Whole Patient: Meeting Psychosocial Health Needs’’
notes that while well accepted in principle, the biopsychosocial
model of care may not be applied in the education, licensing,
and continuing education of those who care for persons with
cancer. The American Psychosocial Oncology Society (APOS)
and the Individual Cancer Assistance Network (ICAN) have
launched the online continuing education accredited program
‘‘ICAN: Distress Management for Oncology Nursing.’’ The
ICAN is a philanthropic program funded by the Bristol-Myers
Squibb Foundation to build community-based cancer counsel-
ing capacity to serve patients and their families. The APOS is a
national, multidisciplinary organization with a mission to
promote the psychological, social, behavioral, spiritual, and
physical well-being of patients with cancer and allied diseases
and their families at all stages of illness and survivorship,
through clinical care, education, research, and advocacy. An
important goal of the program is to reduce traditional barriers
to psychosocial oncology education by providing the oncology
nursing community with easy access to information from
experts in the field. In the ICAN program, experts in distress
management serve as program faculty and provide education
Figure 1 nScreening tools for measuring distress.
486 nCancer Nursing
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, Vol. 31, No. 6, 2008 Pasacreta et al
Copyright @ 2008 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
and advocacy regarding the active role of nurses in screening
and referring patients who need psychosocial services. Con-
tinuing education content is disseminated over the Internet
as webcast presentations. The ability to provide information
over the Internet addresses common barriers to this important
information, including schedule and time constraints.
The program examines the prevalence and dimensions of
patient distress and offers instruction on how to effectively
integrate screening tools, such as the Distress Thermometer
and Problem Check List, into clinical practice. It provides
details on relevant interventions and referral algorithms based
on the National Comprehensive Cancer Network Guidelines
for Distress Management
4
(see Figure 1). The program ex-
plores the devastating impact of psychological distress on
quality of life and the unique position of nurses in busy
inpatient settings, outpatient clinics, and offices to detect,
intervene, and refer to appropriate services. This article alerts
oncology nurses about the availability of the program and the
compelling rationale for its development.
n
Background and Rationale for
Program Development
As defined by NCCN, distress is a multifactorial, unpleasant,
emotional experience of a psychological (cognitive, behav-
ioral, and emotional), social, and/or spiritual nature that may
interfere with the ability to cope effectively with cancer, its
physical symptoms, and its treatment.
4
Distress extends along
a continuum, ranging from common normal feelings of vul-
nerability, sadness, and fears to problems that can become
disabling, such as depression, anxiety, panic, social isolation,
and existential/spiritual crisis.
5
It is clear that there are high levels of untreated distress
among cancer patients.
6
Commonly occurring phenomena
in cancer patients include adjustment disorders and major
depression.
7
Although cancer patients experience major
psychiatric disorders at rates comparable to those in general
populations, they access mental health services less frequently.
8
In a healthcare system focused largely on diagnosis, cure,
and cost, psychosocial symptoms are too often unrecognized
and untreated in clinical settings despite their insidious harm
to patients, caregivers, and the health professionals who feel
ill prepared to manage them.
9
Although many institutions
that treat cancer patients consider screening for mental health
concerns to be important, only a small minority of them
screen routinely.
10
This problem has led to the NCCN’s
calling for distress to be considered as a sixth vital sign in the
United States, as it has been done in Canada.
11
An important role of the oncology nurse is to enhance the
ability of patients and families to cope with the broad impli-
cations of diagnosis and treatment. Barriers continue to pre-
vent most oncology nurses from acquiring knowledge and
skills to integrate psychosocial concepts into practice. As
budget constraints limit the use of mental health specialists,
psychosocial issues have intensified. The importance of edu-
cating frontline health providers to recognize, treat, and/or
refer patients who exhibit psychiatric morbidity and related
psychosocial problems is clear and compelling. Indeed, rec-
ognition, monitoring, documentation, and prompt treatment
of distress are part of the standard of care for nursing practice
in oncology.
5
A study by Pasacreta and Massie
12
asked nurses to identify
psychiatric symptoms exhibited by 475 cancer inpatients on
one particular day. Few patients had major psychiatric
disorders that antedated their cancer diagnosis, yet almost
half of the sample had psychiatric symptoms that nurses felt
ill-equipped to manage. The most common problems encoun-
tered were depression, anxiety, and delirium. Nurses reported
twice as many patients with advanced- versus early-stage disease
as having psychiatric symptoms that were beyond the scope of
their practice. Nurses stated that their inability to intervene was
related to insufficient time to provide psychological support,
the priority of physical problems, insufficient knowledge
regarding therapeutic interventions, and/or lack of objectivity
because the patient’s situation was emotionally upsetting to the
nurse. It has been the experience of some mental health
consultants working in cancer settings that referrals are often of
patients who have a poor prognosis rather than those who
exhibit objective psychopathology, that nurses hold very deep
concerns about addressing the psychosocial aspects of cancer,
and that they feel ill-prepared for this aspect of their role.
Process and Goals of
Psychosocial Intervention
The process of psychosocial intervention, as taught in this
program, has 5 aspects: (1) screening, (2) recognition of ‘‘normal’’
versus severe and/or sustained distress, (3) management of routine
distress, (4) referral of identified cases to appropriate resource(s),
and (5) follow-up and evaluation. Routine psychosocial inter-
ventions are taught. These include (1) providing clear information
about treatments and procedures, (2) assuring the patient and
making sure that uncomfortable symptoms will be managed, (3)
normalizing psychological distress, and (4) mobilizing the
patients’ existing support systems (in addition to available hospital
and community resources) to offer comfort and reassurance.
Clinicians, patients, and families may share beliefs that
interfere with care. These include beliefs that psychosocial
referrals stigmatize patients, that all psychosocial symptoms
are normal responses to cancer, that there are no effective
treatments, that psychosocial problems will resolve on their
own, or that psychosocial intervention will make the patient
worse by ‘‘unleashing’’ feelings. All need to know that waiting
until problems become severe negates abundant evidence
from the continually evolving field of psychosocial oncology
regarding the efficacy of specialized intervention, promotes
patient suffering, and diminishes treatment efficacy of treatment.
Appropriate educational programs on psychosocial interven-
tion include teaching nurses to separate their own feelings about
patients from objective data relative to the psychosocial assess-
ment, intervention, and referral. It is a common yet erroneous
Managing Distress in Oncology Patients Cancer Nursing
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Copyright @ 2008 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
belief that boundary management, objectivity, and the provision
of psychosocial care within a self-protective context cannot be
taught or learned. The nursing culture often equates intense
emotional involvement with quality psychosocial care. That
certainly is not the case and, as many learn firsthand, can lead
to professional caregiver distress, burnout, depression, sub-
stance abuse, and other serious problems. We can certainly
teach nurses to identify patients who will respond to these
interventions while assisting them to set realistic goals and
clarify personal boundaries so that patient involvement does
not become overwhelming.
Realistic goal setting is an important topic to discuss in an
educational program about psychosocial intervention. For
example, severe and long-standing character pathology is not
a fixable problem; however, learning to set limits with dis-
turbed patients and families is a realistic goal. The display of
upsetting emotions is not indicative of psychopathology, and
for some individuals and cultural groups, emotional stoicism
and/or effusiveness may be the norm. Knowing this impor-
tant information helps the nurse to evaluate a particular
patient’s need for assistance. Learning the process of establish-
ing realistic goals and setting objective parameters removes
the emotional response and feelings of the nurse from the
clinical decision making and is a major step toward enhancing
confidence and mastery in this area.
n
Description of an Educational
Program on Distress Management
Nurses must have the skills and knowledge to rapidly
ascertain the psychosocial needs of the patient and family
and design cost-effective psychosocial referrals. This process
requires knowledge of available resources and how to access
them. Recognizing that the average nurse may not possess the
needed skills and knowledge to address these issues, the
APOS and the ICAN launched the online continuing
education accredited program ‘‘ICAN: Distress Management
for Oncology Nursing’’ to remedy the problems.
13
Experts in distress management were chosen by the APOS
executive board to serve as program faculty. The experts
included 3 nurses, a psychiatrist, and a social worker. All were
white women. Faculty selection was based on demonstrated
competence, background, and skill in psychosocial oncology
practice, research, and education. The expert’s role is defined
as (1) a frontline educator of timely and relevant content in
psychosocial oncology and (2) a patient advocate for psy-
chosocial care that emphasizes the important role of nurses in
screening and referring patients who are in need of psycho-
social services. For example, one expert (author R.M.) was a
seasoned educator and researcher in oncology nursing, rec-
ognized as an international leader who has participated in
several national and international psychosocial oncology
education initiatives. The second expert (author J.V.P.) was
a psychiatric clinician and educator with particular expertise
in providing psychosocial oncology services to patients and
families and in teaching nurses to screen and treat those
problems.
The program strives to reduce traditional barriers to
psycho-oncology services by connecting oncology nurses, the
first line providers of care, to experts and state-of-the-art
information in the field. Information is disseminated in the
form of continuing education webcast presentations. Webcasts
are accessible and offer concrete information on assessment
and treatment of the most common psychiatric problems that
Table 1 &Topics, Objectives, and Examples of Content of Webcast Presentations
Topics Objectives Examples of Content
Nurse’s Role in Recognizing Distress
in Patients and Caregivers
The learner will understand the dimensions
and etiology of psychosocial and
psychiatric disorders among cancer
patients and caregivers.
Barriers to psychosocial care
Assessment Recommendations
The learner will be able to implement
appropriate psychosocial screening
interventions for distress and associated
psychiatric disorders in oncology.
Appropriate use of resources
Treatment Strategies
The learner will be able to establish and
implement a psychosocial oncology
intervention.
Goals and benefits associated with psychosocial
intervention
Principles and Guidelines for
Psychotherapy and Referral
Aspects of the psychotherapeutic process,
including the concepts of transference and
boundary management
Process and meaning of psychosocial screening
Markers that warrant specialized and/or
aggressive psychosocial consultation
Information regarding indications,
contraindications, desired effects, side
effects, and paradoxical reactions to
psychotropic medications
Symptom management as it relates to
psychological status
Signs, symptoms, interventions and follow-up
needs for patients with depression, anxiety,
and delirium, the most common psychiatric
disorders encountered in cancer care
488 nCancer Nursing
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Copyright @ 2008 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
are encountered by nurses in oncology settings. The ability
to access information over the Internet enhances access by
addressing barriers such as schedule and time constraints.
The program’s objectives are addressed through 4 webcast
presentations (see Table 1). The nurse who views the webcast
will hear a lecture by the expert accompanied by a slideshow.
Webcast content describes the prevalence and nature of
patient distress and the effective clinical integration of psy-
chosocial screening tools from the National Comprehensive
Cancer Network’s Guidelines for Distress Management.
Distress is understood in the context of the factors that affect
psychological adjustment, the wide range of psychological
responses that accompany chronic and progressive disease,
and the importance of early detection. The content includes
information on the efficacy of interventions in reducing dis-
tress and promoting adaptation and well-being. Practical
guidelines regarding psychiatric assessment and management,
the growing importance of routine psychosocial oncology
care, and identifying and how to access increasingly scarce
resources are other important programmatic components.
Webcast content includes guidelines for distinguishing
normal from pathological distress and delineating interven-
tions that can be incorporated into routine nursing care.
There is detailed discussion of generic oncology nursing
interventions for distress, for example, providing information
about treatments and procedures and associated symptoms
that are commonly experienced, monitoring and managing
distressing symptoms, and caring through direct physical care
and accessibility. In addition, there is discussion of specific
psychiatric interventions for distress, for example, facilitating
problem solving and coping.
The content includes reference to family-focused care, for
example, predictors of caregiver distress and the types of assis-
tance that might be needed. The nurse is seen as providing
continuous psychological support/facilitation of coping for
both patient and family, serving as a liaison between insti-
tution and family, and providing home nursing care that
promotes control and independence.
Screening for cases in need of specialized psychosocial
resources is an important aspect of the education. A screening
instrument called the Distress Thermometer is described in
the webcasts. It was developed by a multidisciplinary panel of
the NCCN and has been endorsed by the APOS. The distress
thermometer is easy to administer, reliable, and acceptable to
patients. This single-item scale has been validated in a
multicenter trial
14
against the Hospital Anxiety and Depres-
sion Scale
15,16
and the Brief Symptom Inventory.
17,18
Assess-
ment involves a single sheet of paper easily administered in a
clinic waiting room. The patient is asked to mark the level of
his/her distress on the thermometer between 0 to 10, with a
10 indicating the greatest distress. A patient who scores 4 or
greater is judged to have moderate or severe distress requiring
further evaluation and treatment.
After marking the appropriate level of distress, patients are
directed to choose the specific problems related to their
distress from a checklist. Checklist problems include practical
problems such as child care and housing; family problems
such as dealing with children or partner; emotional problems
such as fears and nervousness; spiritual/religious concerns;
and physical problems such as symptoms or difficulty with
functional status. The nature of problems checked determines
the type of referral that the nurse is prompted to make. For
example, social and practical problems prompt a social work
referral; emotional/psychiatric problems, referral to a mental
health specialist such as a psychiatrist, advanced practice
psychiatric nurse, or psychologist; and spiritual distress, to a
chaplain. The instrument also creates an avenue for dis-
cussion, problem solving, and relief associated with issues that
would typically be avoided. The webcast content is highly
research based, with each topical area drawn from clinical
oncology research. Application of the research to the topic at
hand is made explicit. References are included on each slide
for the nurse who wishes to investigate the topics further.
At the end of the first year, the number of participants
who logged on and completed the programs varied. There
were 276 participants who completed the Nurse’s Role, 90
participants who completed Distress Assessment, 64 partici-
pants who completed Treatment Strategies, and 66 participants
who completed Principles and Practices for Psychotherapy.
See Table 2 for a summary of the participants’ evaluations.
Overall, the programs have been well received by nurses and
evaluated positively. More than 60% of the participants who
completed the nurse’s role program also completed 1 or more
of the other programs. Additional programs are planned
based on participants’ recommendations.
n
Conclusion
In recent years, there have been extraordinary scientific
developments that have extended the cancer illness trajectory.
The human genome project has moved the psychosocial
implications of cancer diagnosis to the prediagnostic period.
Concurrent treatment discoveries have increased quantity of
Table 2 &Percentage of Agreement of Participants’ Evaluation of Online Programs
Programs No. Met Objectives Overall Quality
Anticipate
Changing Practice
Recommend
to Others
Nurse’s role in recognizing distress 276 98 100 88 96
Distress assessment 90 97 96 82 98
Treatment strategies 64 97 96 56 94
Principles and practices for psychotherapy 64 97 96 43 94
Managing Distress in Oncology Patients Cancer Nursing
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, Vol. 31, No. 6, 2008 n489
Copyright @ 2008 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
life and increased the period of time that cancer patients are
vulnerable to distress. As summarized in the 2007 report of
the Institute of Medicine,
3
there have been repeated calls,
since at least 1999, for clinicians to identify and attend to the
psychosocial needs of persons with cancer.
It is not always the case that normal distress occurs
throughout the clinical course of cancer and resolves without
specialized intervention. Distress can occur on a continuum
from normal to pathological. Pathology refers to a discrete,
criterion-based psychiatric syndrome, typically an anxiety or
affective disorder. The ability of a nurse to distinguish a self-
limiting, transient psychological response from physical
symptoms related to illness and treatment and from major
psychiatric syndromes is particularly challenging. It is the
intensity, duration, and extent to which symptoms affect func-
tioning that are most useful in promoting case identification
and supporting a conceptualization of distress occurring on a
continuum.
There are profound implications of teaching oncology
nurses about distress management in a manner that is readily
accessible. Cancer, regarded until recently as a death sentence,
is now characterized by chronicity implying long-term physi-
cal and psychological sequelae and often a need for lifelong
surveillance and treatment by healthcare providers. The
ICAN is a new and innovative way to support and improve
psychosocial care of patients at any point during the cancer
trajectory. It is essential that psychosocial care be integrated
into routine cancer care to assure the delivery of compre-
hensive services. Nurses will feel empowered to offer better,
thoughtful, timely assistance to patients to minimize their
suffering. Psychosocial morbidity has increasing potential to
inhibit a patient’s ability to tolerate new treatments. With
good nursing care that includes proper attention to the
patient’s psychosocial needs, treatment effect can be maxi-
mized. The nurse’s professional effectiveness and morale can
be enhanced. The patient’s and caregiver’s quality of life can
be optimized.
The Institute of Medicine
3
recommends that all cancer
patients receive psychosocial health services that include
effective patient-provider communication, identification of
needs, coordination of care, and systematic follow-up and
monitoring. The online education programs described in this
article are designed to encompass these recommendations and
result in meeting patients’ psychosocial needs. The detection,
treatment, and referral of psychosocial problems belong on
the cutting edge of clinical care. Nurses who know about
relevant psychosocial issues are central to the attainment of
this goal.
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