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ONLINE EXCLUSIVE
The Role of Oncology Nursing to Ensure Quality Care
for Cancer Survivors: A Report Commissioned by the
National Cancer Policy Board and Institute of Medicine
Betty R. Ferrell, PhD, FAAN, Rose Virani, RN, MHA, OCN, Stephany Smith, BA,
and Gloria Juarez, RN, MS, PhD(c)
Key Points . . .
Purpose: To examine the roles of oncology nurses in improving
quality care for cancer survivors.
Data Sources: A content analysis of textbooks, journals, and key
Oncology nurses have made significant contributions to the
documents; surveys of graduate oncology nursing programs and the
area of cancer survivorship.
Oncology Nursing Society's Survivorship Special Interest Group; review
of the nursing licensure examination and oncology nursing certification;
Increased attention to cancer survivorship is needed in basic
review of undergraduate and graduate nursing standards; and review
and graduate nursing education, certification, research, and
of currently funded nursing research.
continuing education.
Data Synthesis: Ten critical content areas of cancer survivorship
were used for the analysis: description of population of cancer survi-
Oncology nurses are central to all aspects of survivorship for
vors, primary care, short- and long-term complications, prevention of
patient care and family support.
secondary cancer, detecting recurrent and secondary cancers, treat-
ment of recurrent cancer, quality-of-life issues, rehabilitative services,
palliative and end-of-life care, and quality of care. Although findings
within each source indicated significant information related to the roles
such as pain, fatigue, sexuality, fertility, family coping, long-
of nurses in caring for cancer survivors, deficits also were identified.
term sequela of treatment, and numerous other areas pertain-
Conclusions: Review of key literature and resources suggests sig-
nificant contributions by oncology nursing over the past two decades
ing to survivorship (Brant, 1996; Ferrell, 1996; Grant, Padilla,
to the area of cancer survivorship.
& Greimel, 1996). Oncology nurses also have led important
Implications for Nursing: Support is needed to expand education
initiatives addressing psychosocial needs and have advocated
and research to ensure quality care for future cancer survivors.
for improved end-of-life care. Many of these educational ef-
forts have been led by the Oncology Nursing Society (ONS),
a national professional organization whose efforts have been
especially important in raising awareness of survivorship con-
cerns and providing extensive education to practicing nurses
ursing as a profession is dedicated to the care of pa-
N
(Wilmoth & Sanders, 2001).
tients and families throughout health and illness and
More than one million people will be diagnosed with can-
across all settings of care. Nurses assess and plan care
cer each year, and nurses will care for these individuals.
to address the multidimensional spectrum of needs for those
Nurses will be integrally involved in all aspects of their care
faced with cancer. Nurses have been integrally involved in
and across all settings, and they will tremendously affect the
efforts focused on cancer prevention, and they also are pivotal
quality of care of cancer survivors and their families (Burke,
in the emerging area of clinical genetics for prevention and
1998; Leigh, 1998, 2001).
early detection of cancer. From diagnosis through end of life,
nurses play an intricate role in enhancing the quality of life
(QOL) of their patients. Nurses are in a unique position to
influence both the physiologic and psychological well-being
Betty R. Ferrell, PhD, FAAN, is a research scientist, Rose Virani,
RN, MHA, OCN  , is a research specialist, Stephany Smith, BA, is a
of their patients, helping cancer survivors to cope with the
research coordinator, and Gloria Juarez, RN, MS, PhD(c), is a re-
immensity of their experience and its resulting impact on their
search specialist, all in the Department of Nursing Research and
lives (McCorkle, Grant, Frank-Stromborg, & Baird, 1996;
Education at the City of Hope National Medical Center in Duarte,
Miaskowski & Buchsel, 1999).
CA. (Submitted May 2002. Accepted for publication July 30, 2002.)
Oncology nurses, individually and collectively, have led
many initiatives that have resulted in attention to concerns
Digital Object Identifier: 10.1188/03.ONF.E1-E11
FERRELL VOL 30, NO 1, 2003
E1
Nursing Care Along the Cancer Continuum (Carroll-Johnson
Oncology nurses have addressed many of the physical bur-
et al., 1998), were included in the review. Ten critical content
dens associated with cancer survivorship. Fatigue, nutrition,
areas consistent with the outline of the overall NCPB/IOM
sleep disturbances, menopausal symptoms, and short- and
report were considered: description of population of cancer
long-term sequela of treatment have been a key focus in on-
survivors, primary care, short- and long-term complications,
cology nursing. Efforts to better assess these symptoms and
prevention of secondary cancers, detecting recurrent and sec-
provide patient education have greatly enhanced comfort and
ondary cancers, treatment of recurrent cancer, quality of life
QOL for survivors (Ferrell, Grant, Dean, Funk, & Ly, 1996;
issues, rehabilitative services, palliative and end-of-life care,
Ferrell, Grant, Funk, et al., 1996; Ganz, 2001).
and quality of care.
Psychological concerns such as fear, anxiety, depression,
Standards of Oncology Nursing Education (ONS, 1995)
and living with uncertainty have been addressed through
provided comprehensive guidelines for both generalist and
model oncology nursing education, intervention, and research
advanced practice oncology nursing education. Key standards
programs. Nurses assess psychological symptoms, offer sup-
include the following.
portive care and education, and are involved in coordination
1. Clinical experiences provide access to people across the
of interdisciplinary services by colleagues in social work,
life span and cancer continuum, including prevention and
chaplaincy, rehabilitation, and psychology (Brant, 1996;
detection, treatment, rehabilitation, and/or supportive care.
Carroll-Johnson, Gorman, & Bush, 1998; Dow, Ferrell, &
2. Apply the physical, psychosocial, spiritual, and cultural
Anello, 1997; Ferrell, Grant, Funk, Otis-Green, & Garcia,
aspects of prevention, early detection, treatment, rehabili-
1997a; Quigley, 1989).
tation, and palliation, and comfort people at risk for or
Social concerns emphasized in oncology nursing have in-
experiencing cancer.
cluded attention to sexuality, fertility, appearance, and coun-
3. Develop an outcome-oriented care plan that is individual-
seling of partners and children. Recognition of the economic
ized, holistic, culturally sensitive, cost effective, and based
burden of cancer, employment concerns, and adjustment to
on nursing diagnosis and incorporates cancer prevention,
life beyond cancer treatment have been important areas of
detection, treatment, rehabilitation, and supportive care.
contribution (Hoffman, 1991). Nurses have developed, imple-
4. Collaborate with the multidisciplinary team to assess, plan,
mented, and evaluated programs to support families through
implement, and evaluate across all levels of healthcare.
the cancer survivorship journey (Dow & Ferrell, 1998;
5. Apply research to oncology nursing practice.
Ferrans, 1994; Ferrell et al., 1997c; Ferrell & Hassey-Dow,
Statement on the Scope and Standards of Oncology Nurs-
1998).
ing Practice (Brant, 1996) defined the practice of both gener-
Spiritual care and attention to existential concerns also are
alist and advanced practice oncology nurses. This monograph
within the domain of oncology nursing. Spiritual assessment,
identifies oncology nursing care as meeting "the needs of per-
referral to chaplaincy, and respect for religious diversity have
sons throughout the cancer experience, from prevention and
been common themes in oncology nursing education and
screening through rehabilitation to end-of-life supportive care
practice. Attention to spirituality by oncology nurses has en-
as needed" (p. 2). Providing quality oncology nursing care de-
compassed a broad view beyond religiosity to address issues
mands that even general oncology nurses require a cancer-
such as hope, uncertainty, and meaning in illness (Ersek,
specific knowledge base and demonstrate clinical expertise in
Ferrell, Dow, & Melancon, 1997; Ferrell et al., 1997b; Ferrell
cancer care beyond their basic nursing education. These stan-
& Hassey-Dow, 1998).
dards require that oncology nurses provide competent and
Oncology nursing is critical to quality care in cancer survi-
knowledgeable care to patients in all phases of the cancer tra-
vorship. This article describes key elements of oncology nurs-
jectory. This text addresses both physical and psychosocial
ing as one essential discipline in the multidimensional care
issues as they apply to all patients coping with cancer, from
required in cancer. Although contributions by nurses have
screening and diagnosis to rehabilitation and end-of-life care.
been significant, there are also gaps in care and serious needs
Two texts were reviewed that outline psychosocial aspects
to ensure the quality care of future survivors. This article is a
of oncology nursing. Psychosocial Dimensions of Oncology
summary of a report commissioned from the authors by the
Nursing Care (Burke, 1998) addressed issues pertaining to the
National Cancer Policy Board (NCPB) and Institute of Medi-
psychosocial care of cancer survivors, including patient and
cine (IOM). It was presented at a meeting of those organiza-
family coping, spiritual and psychological care, and end-of-
tions April 22, 2002. This article is limited to adult survivor-
life care. A chapter addressing the specific issues facing can-
ship, whereas a separate review was commissioned for
cer survivors, "Survivorship" (Leigh, 1998), was included.
pediatric survivorship concerns.
The chapter defined cancer survivors and the different phases
Review of Key Oncology Nursing
of cancer survivorship, as well as psychosocial needs of can-
cer survivors.
Standards
Psychosocial Nursing Care Along the Cancer Continuum
Four key ONS documents deemed as representative of the
(Carroll-Johnson et al., 1998) focused on psychosocial expe-
standard of oncology nursing care were evaluated for content
riences that accompany a cancer diagnosis and the emotional
pertaining to nursing care and cancer survivorship. Two
and psychological responses to these experiences. A focus on
monographs outlining oncology nursing standards, Standards
nursing interventions provides a means to address and im-
of Oncology Nursing Education, Generalist and Advanced
prove care for patients facing the psychosocial challenges that
Practice Levels (ONS, 1995) and Statement on the Scope and
accompany survivorship. Many sections of the book also con-
Standards of Oncology Nursing Practice (Brant, 1996), as
tain small sections on survivorship, which address specific
well as two psychosocial texts, Psychosocial Dimensions of
issues that survivors face in regards to coping, support, fa-
Oncology Nursing Care (Burke, 1998) and Psychosocial
tigue, chronic illness, QOL, and oncology nursing care.
ONF VOL 30, NO 1, 2003
E2
The incorporation of both physical and psychosocial oncol-
Table 1. ONS Survivorship Special Interest Group Survey
ogy nursing care is stressed throughout each of these four pub-
Responses
lications. The role of both the general and advanced practice
Variable
n
%
oncology nurse in caring for cancer survivors encompasses a
broad range of care. Cancer survivorship is recognized as a
Position
complex issue requiring many facets of care, from prevention
Clinical RN
6
27
and screening through rehabilitation and end-of-life care.
Coordinator/director
9
41
These texts encourage oncology nurses (particularly advanced
Educator
6
27
practice nurses) to seek interdisciplinary collaboration in car-
Not employed
1
05
ing for cancer survivors in order to address their varied physi-
Years in nursing
cal and psychosocial needs. Survivorship is an integrated com-
--
X = 26.05
ponent of oncology nursing. These documents stress the role
SD = 7.02
of oncology nurses in executing care that addresses physical,
Range = 1440
psychological, social, and spiritual needs. Earlier documents
Years in oncology nursing
often do not use the term "survivorship" but do discuss related
--
X = 19
concepts, such as rehabilitation and supportive care. Recent
SD = 7.13
documents more uniformly address survivorship and acknowl-
Range = 835
edge the entire cancer trajectory.
Education level completed
Associate
01
05
Survey of Members of the ONS
Bachelor's
05
23
Sur vivorship Special Interest Group
Master's
10
45
Doctorate
05
23
ONS has several special interest groups (SIGs) that provide
Not reported
01
05
a mechanism for members to network with colleagues in spe-
cific areas of practice. A survey of the ONS Survivorship SIG
Assessment of the adequacy of care in clinical
--
settingsa
SD
was conducted to assess these individual nurses who have a
X
special interest in survivorship. A current list of the SIG mem-
Aspects of cancer survivorship
bers was obtained from ONS. The survey was prepared and
Prevention of secondary cancers
4.50
2.22
sent to the 29 members of the Survivorship SIG; 22 members
4.67
2.37
General discussion of survivorship
responded. Table 1 summarizes the results of the survey.
Long-term complications/sequela of treatment
6.95
2.13
The respondents enthusiastically supported the need for
Trends, statistics, and healthcare access
4.57
2.27
greater attention focused on cancer survivors. Topics identi-
3.90
3.05
Healthcare systems/QA/models of care
fied as currently the most adequate aspects of care included
Rehabilitation services
6.18
3.03
treatment of recurrent cancer, short-term sequela of treatment,
Quality-of-life issues and survivorship
7.32
2.34
pain, and palliative care. Aspects of care identified as least
5.82
1.97
Detection of recurrent and secondary cancers
5.05
2.74
Pain management
adequate included prevention of secondary cancer, general
Palliative care/end-of-life care
6.60
2.27
survivorship, long-term complications and trends, and access
Short-term complication/sequela of treatment
6.52
1.94
to health care. Respondents rated the need for survivorship
Treatment of recurrent cancer
4.67
2.65
education as very important and rated their practice setting as
moderately effective.
Personal factors
How effective did you feel as a new graduate of
9.55
1.01
Training of Nurses in Survivorship Issues
your most recent educational program in caring
for cancer survivors?
Survey of Oncology Graduate Programs
How effective do you believe your clinical setting
5.60
2.84
is in executing cancer survivorship content?
The education of nurses specializing in a clinical area, such
7.86
2.12
How receptive do you believe your clinical staff
as oncology, occurs at a graduate level through master's de-
would be to increased cancer survivorship edu-
gree programs. At present, approximately 300 colleges and
cation?
universities offer master's degree programs in nursing, and, of
8.31
1.25
As a clinician, how effective do you feel you are in
these, ONS identified only 29 as offering a special oncology
executing cancer survivorship content in your
care?
focus. To assess the training of nurses to provide appropriate
6.05
2.08
How important do you believe cancer survivor-
care to cancer survivors, a survey was prepared and sent by e-
ship education is to oncology nursing education?
mail to the 29 graduate nursing schools identified by ONS as
offering an oncology emphasis. Responses were received
N = 22
from 20 of the 29 identified programs. Three schools re-
a
0 = not adequate--10 = very adequate
sponded that they no longer offered an oncology specialty.
Table 2 summarizes the results of the survey from the 17 re-
level. This publication is divided into seven categories accord-
sponding programs that still offer the oncology specialty.
ing to the graduate core curriculum content: research; policy,
Summary of Graduate Education
organization, and financing of healthcare; ethics; professional
The Essentials of Master's Education for Advanced Practice
role development; theoretical foundations of nursing practice;
Nursing (American Association of Colleges of Nursing
human diversity and social issues; and health promotion and
[AACN], 1996) outlines the nursing curriculum at the master's
disease prevention. Survivorship is not specifically listed in
FERRELL VOL 30, NO 1, 2003
E3
Table 2. Graduate Curriculum Survey Responses
n
Variable
%
Respondents position
6
Associate professor
33
1
Professor
7
8
Director/manager of oncology program
47
1
Professor emerita
7
Years in nursing
--
X = 18
SD = 8.10
Range = 230
Assessment of areas in curricula where cancer survivorship is currently taught
12
2
Healthcare systems/QA/models of care
18
3
Rehabilitation services
25
4
Trends, statistics, and healthcare access
31
5
Other survivorship topics
37
6
Treatment of recurrent cancer
50
9
Detection of recurrent and secondary cancers
56
10
General discussion of survivorship
56
10
Prevention of secondary cancers
62
11
Quality-of-life issues and survivorship
68
12
Short-term complication/sequela of treatment
68
12
Long-term complication/sequela of treatment
68
12
Pain management
100
17
Palliative care/end-of-life care
Materials currently used to teach cancer survivorship content in curricula
93
16
Textbooks
7
1
Computer-assisted instruction
47
8
Audiovisuals
73
12
Speakers, experts
8
1
Clinical sites
73
12
Case studies
20
3
Standardized curriculum
60
10
Internet resources
--
Variable
SD
X
Assess the quality of current content in your educational program in the following aspects of cancer survivorshipa
Healthcare systems/QA/models of care
7.44
2.56
Detection of recurrent and secondary cancers
7.69
2.47
Prevention of secondary cancers
8.13
2.01
Rehabilitation services
7.56
2.09
Treatment of recurrent cancer
6.94
2.58
General discussion of survivorship
6.88
2.16
Long-term complication/sequela of treatment
6.94
3.10
Trends, statistics and healthcare access
7.88
2.29
Quality-of-life issues and survivorship
6.81
2.60
Palliative care/end-of-life care
7.88
2.56
Short-term complication/sequela of treatment
8.44
2.90
Pain management
6.63
2.20
Personal factorsa
Overall, how important do you believe cancer survivorship content is to graduate nursing education?
9.14
1.02
How effective do you believe a new graduate of your program would be in caring for cancer survivors?
7.46
1.81
How receptive do you believe your faculty would be to increased cancer survivorship education?
8.00
2.38
As a faculty member, how effective do you feel you are in teaching cancer survivorship content?
8.57
1.50
How effective do you believe your school's curriculum is in teaching cancer survivorship content?
7.50
2.38
N = 17
a
0 = not adequate--10 = very adequate
ONF VOL 30, NO 1, 2003
E4
"Surviving Breast Cancer" (McCorkle, 1996) included con-
any of these categories; however, the category "health promo-
tent such as the definition of survivor, survivorship stages and
tion and disease prevention" discusses a key concept of nurs-
phases, psychological and psychosocial aspects, QOL, eco-
ing encompassing QOL--healthy lifestyle--and the maximi-
nomic issues confronting patients and family, and spiritual
zation of QOL across the health-illness continuum.
and ethical concerns. A section in Cancer Nursing, Principles
The number of programs offering an oncology specialty
and Practice (Yarbro et al., 2000) included three chapters
has decreased from approximately 45 programs in 1990 to
specific to survivorship issues: "Psychosocial Responses to
only 26 programs in 2002. Increased budgetary concerns have
Cancer," "Physical, Economic, and Social Issues Confronting
led to the consolidation of specialty programs into more gen-
Patients and Families," and "Spiritual and Ethical End-of-Life
eralized tracks (e.g., chronic illness, medical-surgical). This
Concerns."
finding holds important implications for the quality of care
Although a key finding of this review was the lack of con-
provided to cancer survivors. Generalized master's education
tent on critical areas, including the prevention of secondary
tracks are less likely to provide adequate attention to the spe-
cancers, treatment of recurrent cancer, and rehabilitative ser-
cific nursing care of cancer survivors. Oncology nursing as a
vices, content pertaining to cancer survivors was incorporated
specialty and the education of nurses in general master's de-
into each of the themes. Nursing care for cancer survivors
gree programs is essential to enhancing the quality of care
occurs throughout all stages of the cancer experience, thus
provided to patients.
necessitating survivorship content across each of these
The quality of care to be provided to cancer survivors in the
themes. This review exemplifies the care that oncology nurses
future will be greatly influenced by the preparation of nurses
provide to cancer survivors throughout their disease while
through graduate education. Nurses trained in master's degree
highlighting the existing deficits in nursing education. Each of
programs represent the leaders in oncology nursing, assuming
the texts contained information regarding QOL issues, stress-
positions as clinical nurse specialists, nurse practitioners, man-
ing the important role of the nurse in caring for patients across
agers, and educators. Just as advanced practice nurses shaped
the physical, psychological, social, and spiritual domains.
the early care of patients receiving chemotherapy, radiation,
and bone marrow transplants, in the decades ahead, graduate-
Review of Nursing Literature in Journals
prepared nurses will advance care in clinical genetics, cancer
risk counseling, and long-term sequela of treatment.
The oncology nursing literature, as published in leading
journals, also was reviewed to assess survivorship content.
Review of Cancer Nursing Texts
Journals reflect current clinical practice and are the key source
One means of evaluating the knowledge of nurses within a
for published research. A total of 160 articles in the 2001
specific area is to evaluate the textbooks used within formal
volumes of three leading oncology nursing journals (Oncol-
education programs. The authors of this article previously
ogy Nursing Forum, Seminars in Oncology Nursing, and Can-
conducted a review of 50 leading nursing texts to evaluate the
cer Nursing) were reviewed for survivorship content. Table 4
content on end-of-life care (Ferrell, Virani, & Grant, 1999).
presents the overall quantitative findings for the journal re-
To provide similar information for this article, a review of five
view. The same 10 topic areas were included in the journal
key oncology texts was conducted to assess the amount and
review, and the articles were evaluated to determine if they
level of survivorship content that was included.
were research based.
The texts reviewed included Cancer Nursing (2nd edition)
Sixty-six of these articles were found in Oncology Nursing
(McCorkle et al., 1996), Cancer Nursing, Principles, and
Forum, the official journal of ONS. Two issues of the journal
Practice (Yarbro, Frogge, Goodman, & Groenwald, 2000),
(vol. 28, issues 2 and 8) were not included in the review be-
Oncology Nursing (4th edition) (Otto, 2001), Oncology Nurs-
cause they reported meeting proceedings rather than peer-re-
ing: Assessment and Clinical Care (Miaskowski & Buchsel,
viewed articles. Of these 66 articles, 47 contained research-
1999), and Handbook of Oncology Nursing (3rd edition)
based information. The most common themes discussed in these
(Johnson & Gross, 1998). A master's-prepared research nurse
articles were primary care and QOL issues. Slightly less preva-
and a research coordinator conducted the review process. The
lent, but still present, were themes concerning descriptions of
10 critical content areas noted earlier were used for this analy-
populations of cancer survivors, short- and long-term compli-
sis. A grid format was prepared for use in the reviews of each
cations from cancer treatments, and quality of cancer care sys-
text. The reviewers scanned the textbook table of contents and
tems. Palliative care, end-of-life care, and rehabilitative services
read each section for key content. Pertinent information then
received less attention in this journal, whereas the prevention of
was tallied under each of the 10 categories.
secondary cancers, detection of recurrent and secondary can-
Table 3 presents the overall quantitative findings of the to-
cers, and the treatment of recurrent cancer were not identified.
tal text review. Four of the books had content describing popu-
Volume 17(14) of Seminars in Oncology Nursing con-
lations of cancer survivors. The most prevalent survivorship
tained 35 review articles. Only 2 of the 35 articles were pri-
content areas present in all the books were primary care and
marily research based, although all papers in this theme-fo-
quality of care. Content applying to short- and long-term com-
cused journal include references to current research. The most
plications, descriptions of populations of cancer survivors,
frequently occurring themes were quality of care and QOL.
QOL, palliative and end-of-life care, and detection of recurrent
Descriptions of the population of cancer survivors, primary
and secondary cancers also received adequate attention across
care, short- and long-term complications, and palliative and
the textbooks. Prevention of secondary cancers, treatment of
end-of-life care also were present throughout the volume.
recurrent cancer, and rehabilitative services received little at-
However, several themes received little to no attention in this
tention in all the textbooks and were absent in several texts.
journal. The detection of recurrent and secondary cancers,
Only two textbooks had chapters with "survivor" in the
treatment of recurrent cancer, and rehabilitative services re-
title. "Survivorship and QOL Issues" (Grant et al., 1996) and
ceived three or less references throughout the volume,
FERRELL VOL 30, NO 1, 2003
E5
Table 3. Textbook Review: Number of Topics Based on Survivorship Themes
McCorkle et al.,
Yarbro et al.,
Otto (2001),
Miaskowski &
Johnson & Gross
(1996), Cancer
(2000), Cancer
Oncology
(1998), Handbook of
Buchsel (1999),
Nursing
Nursing
Nursing
Oncology Nursing
Oncology Nursing
Survivorship Topic
Totals
41
61
153
Description of population
16
35
of cancer survivors
223
133
293
11
739
Primary care
79
36
16
61
27
176
Short- and long-term
36
complications
2
Prevention of secondary
2
cancers
20
46
Detecting recurrent and
2
68
secondary cancers
1
Treatment of recurrent
1
cancer
8
55
11
23
Quality-of-life issues
2
99
1
4
2
2
Rehabilitative services
9
9
Palliative and end-of-life
1
75
2
22
41
care
383
1
102
103
10
167
Quality of care
1,705
42
335
434
247
647
Total number of survivor-
ship content sections
whereas no articles concerned the prevention of secondary
ics: prevention of secondary cancers, detection of recurrent
cancers. One issue of this journal was dedicated solely to the
and secondary cancers, treatment of recurrent cancer, or re-
dimensions of long-term cancer. This issue addressed each of
habilitative services.
the survivorship themes identified here: physiologic long-term
Although many of the themes received adequate attention
and late effects, psychological and relationship issues, and
throughout the three journals, several important topics were
transitions to palliative and end-of-life care.
absent or limited. Of the articles that were reviewed from the
Fifty-nine articles from volume 24 of Cancer Nursing
three journals, only three articles related to the detection of re-
were reviewed and of the 59 articles, 49 were based on re-
current and secondary cancers, two contained information re-
search studies. The predominant themes discussed through-
garding rehabilitative services, one addressed the treatment of
out these articles were QOL and quality of patient care. De-
recurrent cancer, and no information was included about the
scriptions of the population of cancer survivors and palliative
prevention of secondary cancers. The unique link between nurs-
and end-of-life care also were addressed in many of the ar-
ing care and QOL was recognized by the wealth of information
ticles. Topics that received limited attention were primary
regarding psychosocial and QOL issues after diagnosis and pri-
care and short- and long-term complications. This volume
mary treatment. The results of the journal review reflect the simi-
did not include articles concerning any of the following top-
lar strengths and deficits apparent in the textbook review.
Table 4. Journal Review: Number of Articles Based on Survivorship Themes
Oncology Nursing
Seminars in Oncology
Cancer Nursing
Total
Forum (N = 66)
Nursing (N = 35)
Survivorship Themes
(N = 59)
(N = 160)
9
7
16
32
Description of population of cancer survivors
26
10
10
46
Primary care
27
Short- and long-term complications
15
7
5
Prevention of secondary cancers
3
3
Detecting recurrent and secondary cancers
1
Treatment of recurrent cancer
1
13
25
68
Quality-of-life issues
30
Rehabilitative services
1
1
2
22
Palliative and end-of-life care
2
7
13
17
16
25
58
Quality of care
Based on research
47
2
45
94
ONF VOL 30, NO 1, 2003
E6
Review of Core Texts
Review of Certification of Oncology
ONCC recognizes a core text for each of the certification
Nurses and Advanced Oncology
examinations. The two textbooks for the OCN and AOCN
Nursing Certification
were reviewed for content on survivorship. The textbook for
the OCN examination was Core Curriculum for Oncology
Demographics of Certified Nurses
Nursing (Itano & Taoka, 1998). This book includes a chapter,
"Coping: Survivorship Issues and Financial Concerns," that
Specialization in nursing is recognized through certifica-
focuses on theories of survivorship and defines cancer survi-
tion. An ONS-affiliated corporation, the Oncology Nursing
vorship as the time of discovery of cancer and throughout the
Certification Corporation (ONCC) conducts the certification
balance of life. Other highlights are stages of survivorship,
at two levels, including the Oncology Certified Nurse (OCN)
which are categorized as acute stage, extended stage, and per-
designation and the Advanced Oncology Nursing Certifica-
manent stage. The chapter also explores the impact of sur-
tion (AOCN).
vival, including the physical or physiologic, psychologic, so-
At present, there are 19,021 OCNs. Seventy-eight percent
cial, and spiritual effects, thus addressing all QOL domains.
report full-time employment, and 20% report part-time em-
Assessment of survivorship described in this chapter identifies
ployment. Eighty percent designate their functional area as
the stages of survival and includes an evaluation of the can-
patient care, while others function in administration, educa-
cer history of the individual, leading to the psychosocial
tion, or research. Seventy percent work on oncology specialty
interview(s) of the patient, family, and significant others. Also
units. There are also 1,269 AOCNs. Eighty-two percent of
included are targeted outcomes and planning and implemen-
these nurses are employed full-time, and 15% are part-time.
tation of care for survivors. The chapter describes long-time
Fewer (53%) are primarily focused on patient care, with more
survivors of both pediatric and adult cancer and the develop-
AOCNs in administration, education, or research. Fifty-three
ment of guidelines for continued care by other care providers,
percent of AOCNs work on oncology units, with a wide di-
such as primary care physicians and nurses.
versity of other settings of practice.
The textbook for the AOCN certification examination is
OCNs and AOCNs, and the certification process itself,
Advanced Practice in Oncology Nursing (Lin, 2001). The
are important factors in the quality of care of cancer survivors.
book is divided into major disease sites and treatment modali-
These nurses have received specific training in cancer care
ties, according to diseases, diagnosis, and treatments (e.g., sur-
and are experienced in issues confronting cancer survivors.
gery, chemotherapy, radiation, biotherapy). Patient care issues
Familiarity with issues ranging from chemotherapy side ef-
are discussed, including psychosocial issues relevant to can-
fects to complex psychosocial issues pertaining to cancer sur-
cer survivorship. The psychosocial issues addressed are anxi-
vivorship make these nurses invaluable resources to cancer
ety, depression, anger, pain, and family dysfunction. A genet-
survivors. These nurses are recognized leaders and mentors
ics chapter provides an overview of a family history review.
and often are in advanced practice roles directing programs
targeting survivorship concerns.
Results of Role Delineation Studies
Similar to other professional certification processes, ONCC
Review of Test Blueprints
conducts periodic studies of the role function of the oncology
Test blueprints provide an outline of the content tested in
nurse to ensure that certification and testing reflect actual
the certification examinations. In reviewing the OCN test
practice (McMillan, Heusenkveld, & Spray, 1997; McMillan,
blueprint guide for the OCN examination, "survivorship is-
Heusenkveld, Spray, & Murphy, 1999). The most recent
sues" is found under the category of QOL. QOL content en-
OCN study was conducted in fall 2001 (McMillan, Heu-
compasses 27% of the OCN test. QOL is divided into five
senkveld, Chai, Murphy, & Huang, 2002).
categories: comfort, coping, sexuality, symptom management,
The authors conclude that the process of oncology nurs-
and supportive care. "Survivorship issues" is 1 of 12 items un-
ing certification is an important contribution to quality care
der the category of coping. Review of the actual test would
for cancer survivors. The certification process provides a
suggest that a major focus of the examination is on the active
means of promoting and testing competence in many areas
treatment phase, with less emphasis on survivorship.
of significance to cancer survivorship. The number of
The AOCN test blueprint is divided into six sections that
OCNs and AOCNs is very small, given the national need
reflect role functions of direct caregiver, administrator, coor-
for nurses to address survivorship concerns and provide care
dinator, consultant, researcher, and educator. The "direct
for survivors. Promotion of certification is recommended
caregiver role" section, which encompasses 63% of the test,
and should be encouraged in cancer centers. Continued rec-
is divided into seven categories. One of the subcategories is
ognition of survivorship content in the certification exami-
"comprehensive assessment and problems identification" re-
nations is recommended.
garding patients, families, and survivors, which includes psy-
chosocial examples of spirituality, social support, financial as-
Review of Content of Basic Nursing
p e c t s , and other topics of importance to survivorship.
Education on Survivorship Issues
Survivorship also is mentioned under this subset of "direct
caregiver role" within the discussion of "continuity of care."
Undergraduate Curriculum
Within "continuity of care," subtopics include cancer survi-
The vast majority of RNs are prepared at a basic level of di-
vorship rehabilitation and end-of-life care. Each of the role
ploma/associate degree (42.8%) and baccalaureate degree
functions reflects aspects of survivorship, including genetic
(53.2%), whereas only 3.9% of nurses hold a master's degree or
risk, psychosocial support, and the role of advanced practice
higher. AACN (1998) reviewed and published a document that
nurses in achieving quality cancer care.
FERRELL VOL 30, NO 1, 2003
E7
provides direction for the preparation of professional nurses
span," which falls under the major "health promotion and
for practice at the baccalaureate level. This document does not
maintenance" category, comprises 7%13% of the examina-
tion content and could test survivorship knowledge. The ma-
use the term survivorship but covers many aspects relevant to
survivorship, such as future trends in health care, technologic
jor section, "psychosocial integrity," which comprises 10%
advances, and advances in genetic knowledge. One of the im-
22% of the examination content, would be an important area
for testing survivorship issues. The two subcategories are cop-
portant trends included is the need to seek quality, accessibil-
ing and adaptation (5%11%) and psychosocial adaptation
ity, and cost-effectiveness in all aspects of health care and
education.
(5%11%). Many of the issues tested in this category are end
of life, coping mechanisms, stress management, situational
The document is divided into the components of profes-
role changes, religious and spiritual influences on health, and
sional nursing education and preparation of professional
nurses upon graduation. Graduates should be provided with
sensory or perceptual alterations.
Overall, although undergraduate education provides a gen-
the knowledge to assess factors that influence the health of pa-
eral framework for addressing cancer survivor's needs, this
tients and to foster strategies for health promotion, risk reduc-
tion, and disease prevention across the life span. QOL do-
basic preparation has not addressed survivorship in specific
terms. This suggests a significant need for continuing educa-
mains are discussed under the category of "illness and disease
tion in survivorship for practicing nurses.
management." Knowledge of social, physical, psychological,
a n d spiritual responses of individuals and families or
caregiver to disease and illnesses is required at the baccalau-
Nursing Research Related to Cancer
reate level. The goal is to maximize QOL and maintain an
Sur vivorship
optimal level of functioning throughout the course of the ill-
ness, including end of life.
ONS and the ONS Foundation
Although the undergraduate nursing curriculum provides a
framework supportive of survivorship needs, the curriculum
In addition to its role in education and practice, ONS has
is broad and must serve as a general introduction to all aspects
been a leading force in oncology nursing research, including
of nursing care from obstetrics, pediatrics, mental health,
pioneering research in cancer survivorship. Much of the re-
community health, and intensive care to numerous other as-
search has been supported through the grants program of the
pects of nursing. The curriculum also is focused on the acqui-
ONS Foundation. Table 5 includes a listing of studies funded
sition of basic nursing skills. Clinical time is focused in gen-
by the ONS Foundation from 20002001 that are related to
eralized care settings. Although some exposure to cancer care
survivorship. Table 6 presents a summary of all research
may exist in the classroom or clinical arena, in most instances,
funded by this organization from 19842001. These data in-
oncology is considered a specialized setting and not a focus of
dicate significant areas of survivorship addressed through
undergraduate education.
oncology nursing research, such as long-term complications,
survivorship concerns in ethically diverse groups, screening
Licensure Review
for second malignancies, and supportive care. ONS Founda-
The NCLEX-RN licensure examination was established to
tion resources are limited, and this program funds pilot
test entry-level nurse performance. The test is divided into
projects, generally in the range of $5,000$10,000. Much of
four major categories: safe, effective care environment; health
the support is dependent on pharmaceutical funding. Addi-
promotion and maintenance; psychosocial integrity; and
tional support for this program to extend the number of
physiologic integrity. Although the term "survivorship" is not
small grant projects available, mentorship of grantees be-
mentioned throughout the test plan blueprint, sections under
yond these pilot studies to pursue future research, and avail-
the four major categories are relevant to survivorship. One
ability of larger scale funding would be an important recom-
such subcategory, "growth and development through the life
mendation.
Table 5. ONS Foundation Cancer Survivorship Research (20002001)
Title
Principal Investigator
Institution
Amount Funded ($)
African American Women: The Experience of Breast
M. Tish Knobf, PhD, RN, FAAN
Yale University
9,906
Cancer and Menopause (2000)
Suzanne M. Mahon, DNSc, RN, AOCN
Screening for Second Malignancies and Osteoporo-
St. Louis University
7,500
sis in Survivors (2000)
2000 Total
17,406
Menopause Symptom Management in Breast Can-
Judith A. Berg, PhD, RNC, WHNP
University of Arizona
10,000
cer Survivors (2001)
Surviving Prostate Cancer and Treatment: Impact
Michael A. Galbraith, PhD, RN
Loma Linda University
10,000
on Couples (2001)
Long-Term Breast Cancer Survivors' Experiences: A
Rose Utley, PhD, RN, CS
Southwest Missouri State University
8,124
Secondary Analysis (2001)
Linda A. Jacobs, PhD, CRNP, AOCN
Late Effects and Quality of Life in Long-Term Survi-
University of Pennsylvania
8,000
vors of Testis Cancer (2001)
2001 Total
36,124
ONF VOL 30, NO 1, 2003
E8
FERRELL VOL 30, NO 1, 2003
E9
National Institute of Nursing Research
ity nursing care often are highlighted as the nursing role in ad-
dressing physical and psychosocial care for cancer survivors is
The National Institute of Nursing Research (NINR) is the
made evident throughout nursing research. Published qualita-
primary source of research funding for nurses in the United
tive studies share the voices of cancer survivors, allowing their
States. NINR research funding must extend across all areas of
thoughts and concerns to be heard by healthcare providers.
patient care; thus, support for cancer research--and more spe-
cifically cancer survivorship--is limited. However, NINR
Conclusions and Recommendations
has supported several very important areas of survivorship
research such as pain, psychosocial support, coping, pediatric
survivorship concerns, lymphedema, family coping, and other
The following list of specific recommendations was pre-
areas. Table 7 includes a list of grants funded by NINR from
sented to the NCPB/IOM based on this review of key oncol-
19992001 related to cancer survivorship. Several of the
ogy nursing literature and resources.
projects are funded as R01s, the funding mechanism for ma-
1. Increase the focus by the Oncology Nursing Society (ONS)
jor research projects.
and other professional nursing groups on survivors and
In some instances, NINR has cofunded projects with the
survivorship issues.
National Cancer Institute (NCI). In addition to the R01
2. Increase support for oncology specialty education within
mechanism, NINR supports training and fellowship grants
graduate programs, including the full spectrum of the can-
and small grants to support pilot projects. NINR could be a
cer experience.
very significant source for expanding the focus on quality care
3. Evaluate and support oncology content in curricula, with
for cancer survivors. NCI also has supported nurse investiga-
emphasis on survivorship, which has received minimal
tors in conducting research related to survivorship. Both
attention in general oncology graduate programs.
NINR and NCI have funded research related to end-of-life
4. Promote certification in oncology nursing through the
OCN and AOCN examination process.
care that was not included in this analysis. Additional support
through each of these mechanisms, with attention to those
5. Explore opportunities to integrate survivorship content in
areas that have not been addressed, could advance nursing
basic nursing education (baccalaureate and associate de-
science and care for patients and families across the cancer
gree) programs.
trajectory. Oncology nurses also have contributed signifi-
6. Increase support for oncology nursing research in survivor-
cantly as research nurses in clinical trials and through coop-
ship, including
erative groups. Increased nursing research performed in col-
Support for expanded pilot funding through NINR,
laboration with clinical trials could provide an untapped
ONS, and the ONS Foundation
potential for addressing survivorship concerns.
Targeted research for areas not addressed in current research.
The field of nursing research continues to address topics fo-
7. Support extensive continuing education for clinical nurses
cused on improving the quality of care for cancer survivors.
regarding survivorship because of the limited exposure in
These studies can be used to identify the major issues that af-
this area in undergraduate education.
fect QOL for cancer survivors, paving the way for future nurs-
8. Explore opportunities for nursing research in cancer survivor-
ing interventions. The benefits that patients receive from qual-
ship in conjunction with clinical trials and cooperative groups.
Table 7. National Institute of Nursing Research Cancer Survivorship Grants Selected, 19992001
Principal Investigator
Study Title
Institution
Mechanism
Ward, Sandra
Representational Intervention for Cancer Pain
University of Wisconsin Madison
R01
Mishel, Merle
Managing Uncertainty in Advanced Prostate Cancer
University of North Carolina at Chapel Hill
R01
Dalton, Jo Ann
Tailoring Cognitive Behavioral Treatment for Cancer Pain
University of North Carolina at Chapel Hill
R01
Nail, Lillian
Postradiation Coping Processes--a Randomized Trial
University of Utah
R01
Barsevick, Andrea
Energy Conservation and Cancer Treatment-Related Fatigue
Fox Chase Cancer Center
R01
Hoskins, Carol
Breast Cancer--Education, Counseling, and Adjustment
New York University
R15
Cimprich, Bernadine
Nursing Therapy--Attentional Fatigue in Patients With Cancer
University of Michigan
R29
Kang, Duck-Hee
Psychoimmune Outcomes: Intervention in Breast Cancer
University of Alabama at Birmingham
R01
Mock, Victoria
Mitigating Cancer Treatment-Related Fatigue by Exercise
Johns Hopkins University
R01
Schwartz, Anna
Cancer, Catabolic Steroids, Exercise, and Quality of Life
University of Washington
R29
Schwartz, Anna
Oregon Health Sciences University
Breast Cancer Survivors: Exercise and Raloxifene
R01
Weitzner, Michael
Longitudinal Study of Depression in Lung Cancer
University of South Florida
R01
Dow, Karen
Quality-of-Life Intervention in Breast Cancer Survivors
University of Central Florida
R01
Armer, Jane
Prospective Nursing Study of Breast Cancer Lymphedema
University of Missouri at Columbia
R01
Galbraith, Michael
Loma Linda University
Prostate Cancer: Acute and Extended Effects for Couples
R15
Ingham, Jane
Georgetown University
R21
Cohort Study of Patients With Cancer Caregiver Outcomes
Coward, Doris
Self-Transcendence in Breast Cancer Support Groups
University of Texas at Austin
R29
Parker, Nadine
Quality of Life in Patients With Head and Neck Cancer and
Oregon Health Sciences University
F31
Their Spouses
Larson, Cheryl
University of Arizona
F31
Elder's Spirituality Across Chronic Illness Experiences
Ridner, Sheila
Lymphedema After Breast Cancer Treatment
Vanderbilt University
F31
ONF VOL 30, NO 1, 2003
E10
In summary, review of key literature and resources by the
Oncology nurses are central to all aspects of survivorship for
authors suggests very significant contributions over the past
patient care and family support. Extensive support is needed
two decades by oncology nursing to the area of cancer survi-
to expand education and research to ensure quality care for the
vorship. Models of clinical excellence exist in major cancer
future.
centers, and these exemplar projects should be disseminated
to other settings. Nurse-directed programs to address pain,
fatigue, lymphedema, psychological issues, and other QOL
Author Contact: Betty R. Ferrell, PhD, FAAN, can be reached at
concerns could be replicated to greatly influence quality care.
bferrell@coh.org, with copy to editor at rose_mary@earthlink.net.
References
American Association of Colleges of Nursing. (1996). The essentials of
Leigh, S. (1998). Survivorship. In C.C. Burke (Ed.), Psychosocial dimensions
master's education for advanced practice nursing. Washington, DC: Author.
of oncology nursing care (pp. 129149). Pittsburgh, PA: Oncology Nurs-
American Association of Colleges of Nursing. (1998). The essentials of bac-
ing Society.
calaureate education for professional nursing practice. Washington, DC:
Leigh, S. (2001). Preface: The culture of survivorship. Seminars in Oncology
Author.
Nursing, 17, 234235.
Brant, J.M. (Ed.). (1996). Statement on the scope and standards of oncology
Lin, E.M. (Ed.). (2001). Advanced practice in oncology nursing. Philadelphia:
nursing practice. Washington, DC: American Nurses Publishing.
Saunders.
Burke, C.C. (Ed.). (1998). Psychosocial dimensions of oncology nursing care.
McCorkle, R. (1996). Surviving breast cancer. In R. McCorkle, M. Grant, M.
Pittsburgh, PA: Oncology Nursing Society.
Frank-Stromborg, & S.B. Baird (Eds.), Cancer nursing (2nd ed.) (pp. 893
Carroll-Johnson, R.M., Gorman, L.M., & Bush, N.J. (1998). Psychosocial
898). Philadelphia: Saunders.
nursing care along the cancer continuum. Pittsburgh, PA: Oncology Nurs-
McCorkle, R., Grant, M., Frank-Stromborg, M., & Baird, S.B. (Eds.). (1996).
ing Society.
Cancer nursing (2nd ed.). Philadelphia: Saunders.
Dow, K.H., & Ferrell, B.R. (1998). Mirror, mirror, on the wall: Description
McMillan, S., Heusenkveld, K., Chai, S., Murphy, C.M., & Huang, C. (2002).
Revising the blueprint for the oncology certified nurse (OCN) examina-
of body image among cancer survivors. Quality of Life--A Nursing Chal-
tion: A role delineation study. Retrieved October 2002 from http://
lenge, 5, 100105.
www.ons.org/xp6/ONS/Library.xml/ONS_Publications.xml/ONF.xml/
Dow, K.H., Ferrell, B.R., & Anello, C. (1997). Balancing demands of cancer
ONF2002.xml/Oct2002/Members_Only/McMillan_article.xml
surveillance among survivors of thyroid cancer. Cancer Practice, 5, 289
McMillan, S.C., Heusenkveld, K., & Spray, S. (1997). A study of the rose of
295.
the generalist oncology nurse as a basis for revision of the blueprint for cer-
Ersek, M., Ferrell, B.R., Dow, K.H., & Melancon, C.H. (1997). Quality of life
tification. Oncology Nursing Forum, 24, 13711379.
in women with ovarian cancer. Western Journal of Nursing Research, 19,
McMillan, S.C., Heusenkveld, K., Spray, S., & Murphy, C.M. (1999). Revis-
334350.
ing the blueprint for the AOCN examination using a role delineation study
Ferrans, C.E. (1994). Quality of life through the eyes of survivors of breast
for advanced practice oncology nursing. Oncology Nursing Forum, 26, 529
cancer. Oncology Nursing Forum, 21, 16451661.
537.
Ferrell, B.R. (1996). The quality of lives: 1,525 voices of cancer. Oncology
Miaskowski, C., & Buchsel, P. (1999). Oncology nursing: Assessment and
Nursing Forum, 23, 907916.
clinical care. St. Louis, MO: Mosby.
Ferrell, B.R., Grant, M., Dean, G.E., Funk, B., & Ly, J. (1996). "Bone tired":
Oncology Nursing Society. (1995). Standards of oncology nursing education,
The experience of fatigue and its impact on quality of life. Oncology Nurs-
generalist and advanced practice levels. Pittsburgh, PA: Author.
ing Forum, 23, 15391547.
Otto, S. (2001). Oncology nursing (4th ed.). St. Louis, MO: Mosby.
Ferrell, B.R., Grant, M., Funk, B., Garcia, N., Otis-Green, S., & Schaffner,
Quigley, K.M. (1989). The adult cancer survivor: Psychosocial consequences
M.L. (1996). Quality of life in breast cancer. Cancer Practice, 4, 331340.
of cure. Seminars in Oncology Nursing, 5, 6369.
Ferrell, B.R., Grant, M., Funk, B., Otis-Green, S., & Garcia, N. (1997a).
Wilmoth, M.C., & Sanders, L.D. (2001). Accept me for myself: African
Quality of life in breast cancer--Part I: Physical and social well being.
American women's issues after breast cancer. Oncology Nursing Forum,
Cancer Nursing, 20, 398408.
28, 875879.
Ferrell, B.R., Grant, M., Funk, B., Otis-Green, S., & Garcia, N. (1997b).
Quality of life in breast cancer--Part II: Psychological and spiritual well
Yarbro, C.H., Frogge, M.H., Goodman, M., & Groenwald, S.L. (Eds.). (2000).
being. Cancer Nursing, 21, 19.
Cancer nursing, principles and practice. Boston: Jones and Bartlett.
Ferrell, B.R., Grant, M., Funk, B., Otis-Green, S., & Garcia, N. (1997c).
Quality of life in breast cancer survivors as identified by focus groups.
Psycho-Oncology, 6(1), 1323.
Ferrell, B.R., & Hassey-Dow, K. (1998). Breast cancer across the life span.
Quality of Life--A Nursing Challenge, 6, 4548.
For more information . . .
Ferrell, B.R., Virani, R., & Grant, M. (1999). Analysis of end-of-life content
in nursing textbooks. Oncology Nursing Forum, 26, 869876.
Ganz, P.A. (2001). Late effects of cancer and its treatment. Seminars in On-
Cancer Survivors Online
cology Nursing, 17, 241248.
www.cancersurvivors.org
Grant, M., Padilla, G., & Greimel, E.R. (1996). Survivorship and quality of
Cancer Survivors Network
life issues. In R. McCorkle, M. Grant, M. Frank-Stromborg, & S.B. Baird
(Eds.), Cancer nursing (2nd ed.) (pp. 13121321). Philadelphia: Saunders.
www.acscsn.org
Hoffman, B. (1991). Employment discrimination: Another hurdle for cancer
National Coalition for Cancer Survivorship
survivors. Cancer Investigation, 9, 589595.
www.cansearch.org
Itano, J.K., & Taoka, K.N. (Eds.). (1998). Core curriculum for oncology nurs-
ing. Philadelphia: Saunders.
Links can be found using ONS Online at www.ons.org.
Johnson, B.L., & Gross, J. (1998). Handbook of oncology nursing (3rd ed.).
St. Louis, MO: Mosby.
FERRELL VOL 30, NO 1, 2003
E11