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Year 2000 Oncology Nursing Society
Research Priorities Survey
Mary E. Ropka, PhD, RN, FAAN, Thomas M. Guterbock, PhD,
Linda U. Krebs, PhD, RN, AOCN, Kathleen Murphy-Ende, PhD, RN,
Kathy M. Stetz, PhD, RN, Barbara L. Summers, PhD, RN, Eric Bissonette, MS,
Barbara Given, PhD, RN, FAAN, and Gail Mallory, PhD, RN, CNAA
Key Points . . .
Purpose/Objectives: To determine the Oncology Nursing
Society's (ONS's) research priorities for 20012005 for oncol-
ogy nursing across the entire scope of cancer care, includ-
When comparing surveys, researchers should consider method-
ing prevention, detection, treatment, and palliative care.
ologic differences in sampling, design, and questionnaires.
Design: A cross-sectional, mailed survey.
The top 20 research priorities for the total sample, in rank order,
Sample: Stratified by the general member group (i.e., a
were pain, quality of life, early detection of cancer, prevention/
random sample of 1,850 ONS members) and researcher
risk education, neutropenia/immunosuppression, hospice/end of
group (i.e., census of 150 ONS researchers). 788 responded
for an overall response rate of 39%.
life, oncologic emergencies, suffering, fatigue, ethical issues,
Main Research Variables: 113 topics that were identified
anorexia, access to cancer care, depression, stress-coping adap-
from the 1994 ONS Research Priority Survey questionnaire
tation, nurse retention, hope, palliative care, decision making in
and earlier ONS Research Priority Surveys, with the addition
advanced disease, family education, and cancer recurrence.
of 20 new items to existing questionnaire categories and
Research priorities were rated differently by the total sample
one new category area: health services research.
group compared to the researcher group.
Findings: Top 20 research priorities were distributed
across six of eight questionnaire categories, and the num-
Some research priorities are important to address even though
ber of top 20 priorities within categories differs. Compared
they were not ranked highly, such as genetic screening/testing,
to the 1994 survey, 9 topics were common to both top 20
smoking, and special populations.
lists; 8 were new to the top 20, and 11 dropped out of the
top 20. When the researcher group and adjusted total
sample group top 20 priority ratings were compared, nine
Mary E. Ropka, PhD, RN, FAAN, is an associate professor in the
topics were common to both groups.
School of Medicine at the Department of Health Evaluation Sciences
Conclusions: Examining research priorities affords differ-
and an associate professor in the School of Nursing at the Univer-
ent perspectives to guide practice, education, research,
sity of Virginia in Charlottesville; Thomas M. Guterbock, PhD, is the
management, and administration.
director of the Center for Survey Research at the University of Vir-
Implications for Nursing: ONS Research Priority Survey
ginia; Linda U. Krebs, PhD, RN, AOCN, is an assistant professor
results provide an important foundation for developing fu-
in the School of Nursing at the University of Colorado in Denver;
ture research across the entire scope of oncology nursing.
Kathleen Murphy-Ende, PhD, RN, is a palliative care nurse practi-
tioner at the University of Wisconsin Hospital in Madison and a
clinical assistant professor and associate researcher in the School
apid advances in information and technology related
R
of Nursing at the University of Wisconsin-Madison; Kathy M. Stetz,
to cancer prevention, detection, and care of people
PhD, RN, is an associate professor at Seattle Pacific University in
with cancer, as well as changes in the healthcare sys-
WA; Barbara L. Summers, PhD, RN, is the associate vice president
tems in which they are delivered, generate the need for peri-
for clinical programs at the University of Texas M.D. Anderson Can-
odic evaluation of research priorities. Determining what on-
cer Center in Houston; Eric Bissonette, MS, is a biostatistician in the
cology nurses view as the most important issues for research
Department of Health Evaluation Sciences in the School of Medicine
is part of this process. In the past, oncology nursing research
at the University of Virginia; Barbara Given, PhD, RN, FAAN, is a
professor in the College of Nursing at Michigan State University in
priorities have provided a basis for practice innovations, edu-
Lansing; and Gail Mallory, PhD, RN, CNAA, is the director of re-
cation of nurses, research initiatives and their funding, and
search for the Oncology Nursing Society in Pittsburgh, PA. (Submit-
health policy (McGuire & Ropka, 2000). The identification of
ted September 2001. Accepted for publication November 19, 2001.)
research priorities helps direct resources to areas of greatest
importance or need. Federal-funding agencies, such as the
Digital Object Identifier: 10.1188/02.ONF.481-491
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1993; Lynn, Layman, & Englebardt, 1998; Lynn, Layman, &
National Institute for Nursing Research, National Cancer Insti-
Richard, 1999; Rudy, 1996; Sedlak, Ross, Arslanian, &
tute, and Department of Defense; cancer-related organizations,
Taggart, 1998; Wipke-Tevis, 2001).
such as the American Cancer Society and Oncology Nursing
The purpose of the Year 2000 ONS Research Priorities Sur-
Society (ONS); and foundations, such as the ONS Foundation,
vey was to gather information about the most important issues
utilize these identified priorities to target research funding.
related to the health and health care of individuals affected by
ONS has conducted surveys of its members over the past 20
cancer that can be addressed by oncology nursing research.
years to inform the process of setting research priorities for the
These issues are inclusive of the entire scope of cancer care--
organization. The Year 2000 ONS Research Priorities Survey
prevention, detection, treatment, and palliative care. This study
is the sixth such survey conducted by ONS since 1981 (Funk-
focused on all aspects of cancer care rather than only oncology
houser & Grant, 1989; Grant & Stromborg, 1981; McGuire,
specialist care. Furthermore, it focused on the conduct of re-
Frank-Stromborg, & Varricchio, 1985; Mooney, Ferrell, Nail,
search to develop new knowledge and not research utilization
Benedict, & Haberman, 1991; Stetz, Haberman, Holcombe, &
or evidence-based practice. The stated timeframe for projecting
Jones, 1995). The four most recent ONS Research Priority Sur-
current and future priorities was 20012005. Information from
veys are summarized in Table 1 to facilitate comparison of dif-
this survey will be used, along with other sources, to inform re-
ferences in sample design, response rate, and survey methods.
search priorities and plan future ONS research initiatives.
Nursing organizations in other countries have followed ONS's
lead and used similar approaches (Bakker & Fitch, 1998;
Goldfrad, Vella, Bion, Rowan, & Black, 2000; Hinshaw, 1997;
Methods
Moreno-Casbas, Martin-Arribas, Orts-Cortes, & Comet-Cortes,
The charge to the Research Priorities Survey Project Team
2001; Rustoen & Schjolberg, 2000). Research priorities also
was to conduct a survey of the ONS membership for the pur-
have been established for other specialty areas of nursing, such
pose of determining ONS research priorities. The Project
as critical care and nursing administration (Lindquist et al.,
Table 1. Prior Oncology Nursing Society Research Priority Survey Methods Compared to the Year 2000 Study
Sample
Survey Year
Comments Regarding Comparison
Survey Details
Oncology Nursing Society (ONS)
1988 (Funkhouser
Sample otherwise similar to year 2000
213 returned/700 sent
members who
& Grant, 1989)
researcher group, but also included
30% response rate
Previously identified research as
ONS leadership and short-course fac-
One-time mailing
their major focus or
ulty; general membership not sampled
Participated as research faculty in
Results not reported by sample sub-
ONS short courses or
groups
Functioned in ONS leadership po-
sitions
1991 (Mooney et
"Convenience sample" (p. 1381) of
S a m p l e similar to year 2000 re-
310 returned/429 sent
al., 1991)
ONS members who either
searcher group, but also included
70% response rate
Identified research as major focus
ONS leadership; general membership
One-time mailing
in career or
not sampled
Held ONS leadership positions
Results not reported by sample sub-
groups
1994 (Stetz et al.,
10% random sample of ONS mem-
S a m p l e similar to year 2000 re-
789 returned/2,178 sent
1995)
bers who identified patient care as
searcher group but broader and also
36% response rate
p r i m a r y functional area or ONS
included ONS leadership; similar to
One-time mailing
members who were
year 2000 general member group but
ONS leadership or
restricted to patient care
Members of Advanced Nursing
Results not reported by sample sub-
Research Special Interest Group or
groups
Doctorally prepared
Two groups:
2000
788 returned/2,000 sent
Overall sample adjusted for over-
General member group--random
General member group: 685
sampling of researchers
sample of ONS voting members
returned/1,850 sent
Results reported by overall sample
Researcher group--census of all
Researcher group: 103 re-
adjusted and researcher group
members who met researcher eli-
turned/150 sent
gibility criteria
Total: 39% response rate
General member group: 37%
response rate
Researcher group: 69% re-
sponse rate
Follow-up reminder postcard
at one week and second
mailing at three weeks
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searchers are not directly identified in the ONS membership
Team was comprised of seven volunteer members, specifi-
database, the Project Team devised sampling eligibility cri-
cally recruited to represent practice, administration, education,
teria to identify the researcher group by using membership
and health policy. The ONS Director of Research served as
information collected by ONS as part of initial membership
the ONS liaison. Two of the team members were involved in
or annual renewal applications. Eligibility criteria included
conducting the 1994 survey. The functions of the team in-
(a) highest nursing degree reported as "doctorate" or highest
cluded revising the existing questionnaire by adding new
non-nursing degree reported as "doctorate," (b) functional
items and reorganizing its format; determining survey meth-
area reported as "researcher" or primary position reported as
odology, data acquisition, data analysis, and interpretation of
"researcher," or (c) member of the Advanced Nursing Re-
the findings; and generating a manuscript. The work of the
search Special Interest Group who is an independent inves-
team was carried out through telephone conference calls and
tigator.
other means of electronic communication between August
The general member group (n = 1,850) represented the
1999 and spring 2001. A cross-sectional mail survey was con-
general ONS membership excluding researchers. This was a
ducted between May and August 2000.
random sample of ONS voting members minus those desig-
Sample
nated as researchers according to the researcher group eligi-
bility criteria.
At the time that the sample of 2,000 ONS members was
drawn, July 2000 membership statistics obtained from ONS
Questionnaire
reported 28,764 total members. Of the 27,186 voting mem-
The Project Team developed the Year 2000 ONS Research
bers, 26,546 were active members, 555 were senior members,
Priorities Survey questionnaire after reviewing the five previ-
and 85 were physically challenged members. The sample was
ous ONS research priority survey reports and the research pri-
limited to ONS voting members, who by ONS policy are
ority surveys of other organizations (Bakker & Fitch, 1998;
comprised of the active, senior, and physically challenged
Lindquist et al., 1993). Review of the 1994 questionnaire led
membership categories.
to refining questionnaire categories and items; adding one
The sample was stratified into two separate groups of the
new category (i.e., health services research) and 20 new items
ONS membership: the general ONS membership, designated
that were interspersed throughout categories; regrouping
as the general member group, and ONS members who also
items for better placement; and relabeling categories for im-
were researchers, called the researcher group. Membership of
proved readability. The Year 2000 ONS Research Priorities
these two groups did not overlap. The rationale for stratifying
Survey questionnaire consisted of 113 topics divided into
according to these two groups and then oversampling the re-
eight categories: (a) cancer symptom management (30 topics),
searcher group was to tap the researchers, a particularly im-
(b) behavioral and psychosocial aspects of cancer care (13
portant group for determining research priorities, who might
topics), (c) cancer care delivery systems (14 topics), (d) can-
otherwise be missed by random sampling because of its small
cer continuum of care (17 topics), (e) cancer health behaviors
size. All members who met the researcher study definition
(6 topics), (f) special cancer populations (17 topics), (g) can-
were included in this stratum of the sample.
cer decision making (9 topics), and (h) cancer health services
The researcher group (n = 150) consisted of all ONS mem-
research (7 topics).
bers who were identified as researchers. Thus, this was a cen-
Respondents were asked to rate each of the 113 topics as
sus of the researcher group and not a sample. Because re-
extremely important, very important, moderately important, a
little important, and not at all important in reference to the
Table 2. Respondent Demographics
following question: "What are the most important issues re-
lated to health and health care for individuals affected by can-
Year 2000 Oncology Oncology Nursing
cer that can be addressed by oncology nursing research?" In
Nursing Society
Society
addition, an open-ended question was included that asked re-
Research Priorities
Membership
spondents to "identify other important areas for oncology
Survey Respondents
(as of 7/1/2000)
nursing research. Include those that are `cutting edge' or `vi-
sionary.'"
%
n
n
%
Characteristic
Procedures
Gender (n = 760)
96
733
25,945
97
Female
Survey procedures followed the Tailored Design Method
04
027
00,802
03
Male
recommended by Dillman (2000), one of the foremost au-
Age (years) (n = 764)
thorities in survey research. The Tailored Design Method "is
14
104
02,373
09
2029
the development of survey procedures that create respondent
22
167
07,046
27
3039
trust and perceptions of increased rewards and reduced costs
41
314
39
10,277
4049
for being a respondent, which take into account features of the
19
146
21
05,476
5059
survey situation and have as their goal the overall reduction
04
033
04
01,001
60+
of survey error" (Dillman, p. 27). The technique is intended
Ethnicity (n = 767)
91
701
90
23,287
Caucasian
to reduce survey error in coverage, sampling, measurement,
04
033
04
01,137
Asian
and nonresponse (Dillman). Measurement error in written
02
015
03
00,700
African American
surveys is a major concern because it is largely controlled by
02
015
02
00,537
Hispanic
good questionnaire design. The design controls whether ques-
0010
003
<1
00,110
Native American
tions are overlooked, responses are biased, and people are mo-
<1
00,220
Other
tivated to respond. The questionnaire should be respondent-
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Table 3. Professional Characteristics of Respondents
An incentive was offered to participants in the survey--
entry into a drawing for one of ten $25 gift certificates for
Oncology Nursing
Year 2000 Oncology
ONS publications of the recipient's choice. Ten gift certifi-
Society
Nursing Society
cates were distributed by ONS in May 2001. To further en-
Membership
Research Priorities
hance participation, reminders about the research priorities
(as of 7/1/2000)
Survey Respondents
survey were printed in the June issue of the ONS News and
prominently placed on the ONS Online Web site.
n
%
%
Characteristic
n
The ONS National Office in Pittsburgh, PA, coordinated
Highest nursing
preparation of the sample; organized and distributed the mail-
degree (n = 764)
ing of cover letters, questionnaires, and reminder postcards;
04,359
11
17
Diploma
083
received completed questionnaires; and entered and verified
06,845
31
26
Associate
238
study data in Survey Pro. Working with the Project Team,
10,193
34
39
Bachelor's
258
biostatisticians in the Department of Health Evaluation Sci-
04,298
12
17
Master's
095
ences in the School of Medicine at the University of Virginia
00,334
12
01
Doctorate
092
in Charlottesville analyzed the data using SAS.
Highest non-nursing
degree (n = 743)
Results
10,210
65
62
None
484
00,749
02
05
Diploma
018
Response Rates
01,021
11
06
Associate
085
02,851
13
Bachelor's
17
095
The targeted sample of 2,000 ONS members consisted of
01,347
04
Master's
08
031
1,850 individuals from the general member group and 150
00,243
04
Doctorate
01
030
members from the researcher group. Of the 2,000 ONS mem-
Years in oncology
bers who were sent the questionnaire, 788 responded for an
nursing (n = 764)
overall response rate of 39%. This response rate is similar to
04,684
26
13
16
199
the 1988 and 1994 ONS research priorities surveys (Funk-
10,894
42
410
38
323
houser & Grant, 1989; Stetz et al., 1995). When the year 2000
08,561
12
1115
30
090
survey was planned, the goal for overall response rate was
03,171
09
1620
11
072
50%. As noted in Table 1, response rates in prior ONS re-
01,287
10
20+
05
080
search priority surveys varied with the different study samples
Primary functional
area (n = 766)
and methods. When the response rate is stratified by the two
19,171
66
Patient care
72
503
groups, 685 of 1,850 (37%) in the general member group and
01,714
14
Research
06
104
103 of 150 (69%) in the researcher group responded.
01,798
10
Education
07
073
Description of Survey Respondents
02,390
07
Administration
09
056
01,634
04
Other
06
027
Respondents were compared with the ONS membership at
Practice setting
the time the study was conducted to determine how represen-
(n = 759)
tative the respondents were. To facilitate these comparisons, the
12,393
42
50
Hospital
317
study respondents are described by characteristics and catego-
06,054
24
25
Outpatient/ambu-
181
ries used by ONS to collect information about its members.
latory care
01,246
04
05
Home/public
032
ONS data, obtained by member self-report, are updated annu-
health/hospice
ally at the time of membership renewal. Membership data were
02,822
09
11
Physician office
071
provided by ONS from the July 2000 membership statistics to
01,406
08
06
Cancer center
061
compare study participants to the ONS membership.
00,738
13
03
Other
097
Personal characteristics of the respondents are summarized
Employment status
in Table 2 and include gender, age, and ethnicity. Respon-
(n = 763)
dents were representative of the ONS membership in terms of
21,759
83
80
Full-time
634
personal characteristics.
04,701
15
17
114
Part-time
Professional characteristics of the respondents, such as
00,362
01
01
008
Unemployed
highest nursing degree, highest non-nursing degree, years in
00,287
01
01
007
Retired
oncology nursing, primary functional area, practice setting,
Note. Because of rounding, not all percentages total 100.
and employment status, are summarized in Table 3. Respon-
dents were representative of the ONS membership in terms of
practice setting and employment status.
friendly and attractive, should encourage reading words in the
Respondents' professional characteristics differed from the
same order by all respondents, and should be guided by
ONS membership in the areas of highest nursing degree, years
graphical layout features (Dillman).
in oncology nursing, and primary functional area. A smaller pro-
The cover letter and questionnaire initially were mailed in
portion of survey respondents were diploma-prepared, and a
May 2000. One week after the first mailing, a postcard was
mailed to the entire sample to thank those who already re-
larger proportion of survey respondents had associate degrees or
doctorates listed as their highest degree as compared to the ONS
sponded and encourage responses from those who had not
membership. A larger proportion of the ONS membership was
done so yet. In June 2000, approximately three weeks after the
master's prepared. A larger proportion of survey respondents,
postcard mailing, a second mailing of 1,600 questionnaires
compared to ONS members, worked in oncology nursing for
was sent to all nonresponders.
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tive category on the questionnaire. Topics are listed in rank
Table 4. Top 20 Research Priorities Determined by Mean
order within each questionnaire category so that the mean im-
Importance Ratings for Total Sample, Adjusted for
portance rankings can be examined within and across the
Researcher Group Sampling
eight categories. Although some variability in the mean im-
Mean Importance
Rank Order
portance ratings of topics is observed in all questionnaire cat-
Ratinga (SD)
Topic
Among All Topics
egories, none of the topics have a mean rating lower than 2.91
on the five-point scale.
Pain
1.28 (0.555)
01
In Table 5, a boldfaced topic entry indicates a top 20 rank.
Quality of life
1.28 (0.542)
02
The top 20 research priorities are distributed across all but two
Early detection of can-
1.32 (0.595)
03
of the eight questionnaire categories; cancer health behaviors
cer
and special cancer populations did not contain top 20 topics.
Prevention/risk reduc-
1.55 (0.700)
04
In addition, the number within the categories differs. The can-
tion
Neutropenia/immuno-
1.60 (0.551)
05
cer continuum of care category had six topics in the top 20:
suppression
early detection of cancer, prevention/risk reduction, hospice/
Hospice/end of life
1.62 (0.768)
06
end of life, oncologic emergencies, palliative care, and cancer
Oncologic emergen-
1.63 (0.782)
07
recurrence. The behavioral/psychosocial aspects of cancer cat-
cies
egory had five topics in the top 20: quality of life, suffering,
Suffering
1.65
(0.771)
08
depression, stress-coping adaptation, and hope. The cancer
Fatigue
1.66
(0.757)
09
symptom management category had four topics in the top 20:
Ethical issues
1.67
(0.802)
10
pain, neutropenia/immunosuppression, fatigue, and anorexia.
Anorexia
1.67
(0.719)
11
In the cancer care delivery systems category, only two topics,
Access to cancer care
1.69
(0.748)
12
nurse retention and family education, were in the top 20. Like-
Depression
1.69
(0.685)
13
Stress-coping adapta-
1.70
(0.668)
14
wise, the cancer decision-making category included only two
tion
topics in the top 20: ethical issues and decision making in ad-
Nurse retention
1.70
(0.891)
15
vanced disease. One topic in the cancer health services re-
Hope
1.70
(0.737)
16
search category, access to cancer care, was in the top 20.
Palliative care
1.71
(0.728)
17
Decision making in ad-
Comparison of Research Priorities Between
1.72
(0.786)
18
vanced disease
1994 and 2000
Family education
1.75 (0.708)
19
Table 6 compares the rank order of the top 20 topics iden-
Cancer recurrence
1.78 (0.756)
20
tified in the year 2000 survey to those of the 1994 survey
(Stetz et al., 1995). Considerable change is evident. Nine top-
a
Scored 1 (extremely important) to 5 (not at all important).
N = 788
ics were ranked among the top 20 in both surveys: pain, qual-
ity of life, early detection, prevention/risk reduction, neutro-
penia/immunosuppression, fatigue, ethical issues, access to
13 years or 20+ years, whereas a smaller proportion worked
cancer care, and stress-coping adaptation. Although these top-
1115 years. A larger proportion of survey respondents, com-
ics are among the top 20 in both surveys, their rank may have
pared to ONS members, identified research as their primary
been different in each survey.
functional area, whereas a smaller proportion of survey respon-
Eight topics not identified among the top 20 in the 1994
dents identified patient care. These differences are likely ex-
survey were evaluated as part of the top 20 in the Year 2000
plained by the sampling plan that oversampled researchers.
Research Priorities Survey. They were hospice/end of life, on-
Top 20 Research Priorities
cologic emergencies, suffering, anorexia, depression, hope,
palliative care, and cancer recurrence. In addition, two topics
Mean importance ratings were calculated for each topic and
that were not part of the 1994 questionnaire appear in the year
then were adjusted to remove the effects of oversampling the
2000 top 20: decision making in advanced disease and fam-
researcher group. The adjustment was accomplished by
ily education.
poststratification weighting of cases (i.e., using weights in-
Eleven topics are not in the top 20 of the Year 2000 Re-
versely proportional to the sampling probability for each
search Priorities Survey that were ranked in the top 20 of the
group). Topics then were listed in rank order from most impor-
1994 Research Priorities Survey (Stetz et al., 1995). They
tant to least important. Mean importance ratings were plotted in
were patient education, cost containment, advanced practice
descending order to determine how many topics to display as
nursing, long-term effects of treatment, care delivery models
top priorities. A break was observed at 20, so the decision was
(case management), acuity/patient classification system, staff-
made to report the top 20 for the year 2000 survey (see Table
ing ratios and mix, women, AIDS/HIV, nausea, and stomati-
4) rather than the top 10 as had been reported in prior surveys.
tis/mucositis.
Mean importance ratings of the top 20 all reflected high impor-
tance ratings, ranging from 1.281.78 when responses were
Comparison of Researcher Group and
coded on a scale of 1 (extremely important) to 5 (not at all im-
Adjusted Total Sample Ranking of Year
portant). Many of the mean importance ratings were quite close
2000 Top 20 Research Priorities
even though the rank of the topic was different.
Table 7 displays the top 20 research priority topics and their
Rank Order of Mean Importance Ratings
mean importance ratings in rank order for the researcher
The overall mean and importance ratings of all 113 topics
group beside those for the adjusted total sample, which also
are shown in Table 5, with each topic displayed in its respec-
are displayed in rank order. The unweighted data, with its in-
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Table 5. Rank Order of Mean Importance Ratingsa Listed Within Questionnaire Categories for Total Survey Sample,
Adjusted for Researcher Group Oversampling
Mean Importance Rating
Number of
Rank Order Among
Topic Listed in Rank Order Within Each
Among All Topics (SD)
Respondents to Item
All Topics
Questionnaire Category
Cancer symptom management
1.28 (0.555)
781
001
01. Pain
1.60 (0.752)
777
005
02. Neutropenia/immunosuppression
1.66 (0.757)
781
009
03. Fatigue
1.67 (0.719)
785
011
04. Anorexia
1.82 (0.771)
780
026
05. Nausea
1.83 (0.724)
778
029
06. Stomatitis/mucositis
1.85 (0.809)
778
033
07. Vomiting
1.85 (0.828)
777
034
08. Dyspnea/shortness of breath
1.88 (0.962)
771
041
09. Extravasation
1.91 (0.928)
781
045
10. Bleeding
1.95 (0.758)
777
047
11. Neurologic impairment
1.95 (0.938)
777
049
12. Impaired cardiac function
1.97 (0.804)
780
054
13. Appetite
2.01 (0.864)
779
060
14. Fluid and electrolyte imbalance
2.10 (0.839)
781
070
15. Cognitive impairment
2.14 (0.797)
778
076
16. Diarrhea
2.18 (0.883)
780
080
17. Fever
2.23 (0.823)
767
083
18. Weight changes
2.26 (0.889)
768
084
19. Wounds
2.34 (0.830)
776
094
20. Insomnia/sleep difficulties
2.37 (0.865)
783
098
21. Altered mobility
2.41 (0.854)
785
101
22. Constipation
2.42 (0.780)
779
102
23. Sexual dysfunction
2.72 (0.842)
776
107
24. Cutaneous reactions
2.73 (0.830)
780
108
25. Hot flashes/sweats
2.78 (0.798)
778
109
26. Dry mouth
2.81 (0.771)
775
110
27. Skin changes
2.82 (0.918)
783
111
28. Alopecia
2.84 (0.839)
773
112
29. Urticaria
2.91 (0.842)
781
113
30. Cough
Behavioral/psychosocial aspects of cancer
1.28 (0.542)
785
002
01. Quality of life
1.65 (0.771)
774
008
02. Suffering
1.69 (0.685)
783
013
03. Depression
1.70 (0.668)
777
014
04. Stress-coping adaptation
1.70 (0.737)
782
016
05. Hope
1.78 (0.714)
781
021
06. Family communications/relationships
1.79 (0.736)
780
022
07. Grief
1.80 (0.742)
780
023
08. Caregiver burden
1.84 (0.760)
785
031
09. Social support
1.86 (0.748)
778
039
10. Spiritual well-being
1.88 (0.753)
783
042
11. Anxiety
2.08 (0.783)
784
064
12. Counseling
2.13 (0.733)
783
075
13. Body image/sexuality
Cancer care delivery systems
1.70 (0.891)
780
015
01. Nurse retention
1.75 (0.708)
777
019
02. Family education
1.82 (0.839)
777
027
03. Continuing education/professional development
1.82 (0.841)
779
028
04. Standards of care
1.86 (0.731)
775
036
05. Family caregiving
1.86 (0.954)
778
038
06. Occupational hazards
1.96 (0.948)
778
052
07. Nurse recruitment
2.00 (0.892)
771
056
08. Continuous quality improvement
2.22 (0.871)
774
082
09. Information systems in patient care
2.30 (0.922)
775
087
10. Advanced practice nursing
2.33 (1.029)
773
092
11. Acuity/patient classification system
(Continued on next page)
a
Rated 1 (extremely important) to 5 (not at all important).
Note. Boldfaced topics indicate top 20 ranking.
n = 767785
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Table 5. Rank Order of Mean Importance Ratingsa Listed Within Questionnaire Categories for Total Survey Sample,
Adjusted for Researcher Group Oversampling (Continued)
Rank Order Among
Topic Listed in Rank Order Within Each
Mean Importance Rating
Number of
All Topics
Questionnaire Category
Among All Topics (SD)
Respondents to Item
093
12. Sites of care delivery
2.33 (0.930)
777
095
13. Case management/care management
2.34 (0.870)
774
104
14. Leadership
2.46 (0.933)
776
Cancer health services research
012
01. Access to cancer care
1.69 (0.748)
781
040
02. Disease management
1.86 (0.760)
781
051
03. Outcomes of cancer care
1.96 (0.792)
780
065
04. Effects on healthcare system restructuring
2.08 (0.929)
775
071
05. Care delivery systems
2.11 (0.825)
781
078
06. Evidence-based practice
2.15 (0.869)
774
096
07. Health policy
2.35 (0.883)
777
Cancer continuum of care
003
01. Early detection of cancer
1.32 (0.595)
779
004
02. Prevention/risk reduction
1.55 (0.700)
777
006
03. Hospice/end of life
1.61 (0.768)
779
007
04. Oncologic emergencies
1.63 (0.782)
779
017
05. Palliative care
1.71 (0.728)
778
020
06. Cancer recurrence
1.78 (0.756)
778
024
07. Long-term effects of treatment
1.80 (0.721)
778
032
08. Screening
1.85 (0.802)
771
037
09. Active cancer treatment
1.86 (0.774)
777
048
10. Cancer as a chronic disease
1.95 (0.807)
777
055
11. Participation in clinical trials
1.97 (0.806)
776
062
12. Home care
2.05 (0.799)
777
068
13. Bereavement
2.09 (0.832)
777
069
14. Ambulatory care
2.09 (0.817)
778
077
15. Rehabilitation
2.14 (0.775)
772
079
16. Genetic counseling/testing
2.17 (0.890)
779
097
17. Impact of technology
2.35 (0.872)
774
Cancer health behaviors
025
01. Public education
1.81
(0.763)
779
035
02. Diet and nutrition
1.86
(0.754)
781
050
03. Stress management
1.95
(0.805)
781
061
04. Exercise/physical activity
2.04
(0.769)
780
067
05. Sleep/rest
2.09
(0.815)
777
106
06. Substance abuse
2.63
(1.000)
780
Special cancer populations
046
01. Children and adolescents
1.94
(0.832)
777
059
02. Children of parents with cancer
2.01
(0.833)
780
066
03. Cancer survivors
2.08
(0.781)
777
072
04. Women
2.11
(0.845)
770
073
05. Families
2.12
(0.803)
772
074
06. Socioeconomically disadvantaged
2.13
(0.857)
773
081
07. Elderly
2.20
(0.802)
771
085
08. Men
2.28
(0.800)
771
086
09. Minority
2.28
(0.876)
770
088
10. Multicultural
2.30
(0.892)
775
089
11. Illiterate
2.31
(0.864)
772
090
12. Rural/frontier
2.32
(0.872)
771
091
13. AIDS/HIV
2.32
(0.912)
775
099
14. Disabled
2.39
(0.795)
769
100
15. Mentally ill
2.40
(0.869)
773
103
16. Immigrant
2.44
(0.890)
770
105
17. Migrant
2.50
(0.899)
770
Cancer decision making
010
01. Ethical issues
1.67 (0.802)
780
(Continued on next page)
a
Rated 1 (extremely important) to 5 (not at all important).
Note. Boldfaced topics indicate top 20 ranking.
n = 767785
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Table 5. Rank Order of Mean Importance Ratingsa Listed Within Questionnaire Categories for Total Survey Sample,
Adjusted for Researcher Group Oversampling (Continued)
Number of
Mean Importance Rating
Rank Order Among
Topic Listed in Rank Order Within Each
Respondents to Item
Among All Topics (SD)
All Topics
Questionnaire Category
1.72 (0.786)
780
018
02.
Decision making in advanced disease
1.83 (0.878)
779
030
03.
Advance directives
1.89 (0.795)
779
043
04.
Treatment decisions
1.90 (0.883)
780
044
05.
Informed consent
1.97 (0.851)
781
053
06.
Nursing role in decision support
2.00 (0.849)
780
057
07.
Family role in decision making
2.01 (0.817)
780
058
08.
Compliance/adherence
2.07 (0.902)
783
063
09.
Complementary/alternative therapies
a
Rated 1 (extremely important) to 5 (not at all important).
Note. Boldfaced topics indicate top 20 ranking.
n = 767785
tentional oversample of researchers, would be most directly
the impact of this oversampling, and rankings of the researcher
comparable to the sample design used in the 1994 survey
group responses were considered separately.
(Stetz et al., 1995). Stetz et al. included a researcher over-
Topics that remained among the top 20 from 1994 to 2000
sample but did not use postweighting to adjust the published
are pain, quality of life, early detection, prevention/risk reduc-
results as the current survey's researchers did. However, the
tion, neutropenia/immunosuppression, fatigue, ethical issues,
differences in the top 20 categories between the year 2000
access to cancer care, and stress-coping adaptation. Because
weighted and unweighted results are small. The results are
the top research topics are similar to previous surveys, it can
displayed in weighted form in Table 7 to keep the listed means
be inferred that oncology nursing practice continues to focus
consistent with those shown in the other tables.a
on managing the effects of cancer and its treatment and pro-
Nine topics were rated in the top 20 by both groups: pain,
moting quality of life for patients and families. Although these
quality of life, early detection, prevention/risk reduction, hos-
are broad topics, the fact that they continue to be ranked highly
pice/end of life, fatigue, access to cancer care, depression, and
indicates oncology nurses' appreciation for further research in
palliative care. Four topics were from the cancer continuum
these areas.
of care category, two each were from the cancer symptom
Changes in treatments and technology may have caused or
management category and behavioral/psychosocial aspects of
at least played a role in the dramatic change in specific priori-
care category, and one was from the cancer health services re-
ties. For example, AIDS was ranked 10 in 1991 and 18 in
search category.
1994, but fell to 91 in 2000. Because new treatments have
Ten topics rated among the top 20 by the researcher group
decreased mortality and enhanced symptom control, less fo-
were not included in the top 20 of the adjusted total sample.
cus on HIV has resulted. The possibility also exists that this
They were evidence-based practice, outcomes of cancer care,
patient population may not be cared for by oncology nurses.
caregiver burden, family caregiving, family communications/
Interest in ethical issues has increased dramatically, moving
relationships, cognitive impairment, socioeconomically disad-
to the top 10 in 1994 and 2000 from 46 in 1988. Decision
vantaged, advanced practice nursing, long-term effects of
making, now rated in the top 20, was not even listed as a topic
treatment, and health policy. Three of these topics were from
in previous surveys. The increased availability of complex
the cancer health services research category, two were from
and aggressive treatment modalities, improved survival, and
the cancer care delivery systems category, and one each was
an emphasis on maintaining quality of life throughout the
from the cancer symptom management, behavioral/psychoso-
cancer experience have resulted in the identified need for re-
cial aspects of cancer, special cancer populations, cancer con-
search in solving new ethical problems and assisting patients
tinuum of care, cancer health behaviors, and special cancer
and families in complex decision making. Progress in medi-
populations categories.
cal technology may account for the rise in the ranking of on-
cologic emergencies that is now 7th, whereas it was not even
Discussion
in the top 20 in previous surveys.
Other noteworthy shifts in rank relate to clinical practice.
Trends and Clinical Practice
Hospice/end of life increased in rank from 23 in 1988 to 6 in
Comparisons to previous studies are limited by differences
2000. This is congruent with the recent national focus on end
in sampling technique and size, response rates, demographics,
of life and the palliative care movement designed to improve
and survey methodology, including questionnaires. Sampling
care at this stage and is indicative of oncology nurses' empha-
approaches varied by type (e.g., convenience, random, com-
sis on quality of life, which includes the end of life. Another
bination) and the number and types of participants (e.g., re-
change relates to economic influences and cost containment
searchers, ONS leaders, sample of all members, combination).
that had been ranked in the top 10 in 1988, 1991, and 1994,
Although the current sample included a larger number of re-
but dropped to 51 in 2000. This sizable decrease in priority on
searchers than in the past, the results were adjusted to remove
the topic of cost is not currently understood.
Advanced practice nursing as a topic was introduced and
ranked 11 in the 1994 survey. Surprisingly, in the 2000 study,
a
Results for unweighted data are available from the authors.
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Table 6. Comparison of Top 20 Research Priorities
personal and professional experiences could affect how re-
Between 1994 Survey and Year 2000 Adjusted Total
sponding nurses rated the research priorities, whereas those
Sample
with a broad professional exposure may have more global
insight to clinical research issues.
1994 Survey Rank Order
Education Perspective
Topic Listed in Rank Order
by Priority Index
(Weighted Sum)a
for Year 2000 Survey
Implications of the survey results for nursing education
need to be approached with caution because the survey spe-
01.
Pain
1
cifically asks for research priorities and not educational needs.
02.
Quality of life
3
Whether the highest ranked topics are areas in which knowl-
03.
Early detection
9 detection
edge is lacking or nurses are so well educated on the topics
04.
Prevention/risk reduc-
2 prevention, 4 risk reduc-
that they are able to identify the research gaps is difficult to
tion
tion/screening
05.
Neutropenia/immuno-
6
determine. Considering the topics listed in each of the eight
suppression
categories may be useful when planning educational pro-
06.
Hospice/end of life
(27 hospice/terminal care)
grams. Identifying the educational needs of oncology and
07.
Oncologic emergen-
(31)
advanced practice nurses alternatively has been obtained by
cies
surveying practicing nurses about issues or knowledge gaps
08.
Suffering
(28)
in their nursing educational program and desired areas for
09.
Fatigue
12
continuing education.
10.
Ethical issues
5
These findings have been incorporated into the ONS blue-
11.
Anorexia
(59)
print of educational priorities. Based on a variety of sources
12.
Access to cancer care
20 barriers to access
including current nursing trends, evolving medical technol-
13.
Depression
(33)
14.
Stress-coping adapta-
8
ogy, and identified member needs, the blueprint is evaluated
tion
yearly and then used as the basis for educational projects
15.
Nurse retention
(54 retention)
within ONS. An important perspective of the blueprint is to
16.
Hope
(37)
include levels of evidence in all education programs (Ropka
17.
Palliative care
(36)
& Spencer-Cisek, 2001). This will enable nurses to respond
18.
Decision making in ad-
more knowledgeably to future research priorities by heighten-
vanced disease
ing awareness of the type and level of evidence that supports
19.
Family education
various clinical interventions.
20.
Cancer recurrence
(34 disease recurrence)
Management and Administrative
a
Research priorities in 1994 survey were displayed in two ways:
Perspective
(a) a priority index based on the summed priority rank scores for
each item and (b) the number of first priority votes each item
Several items that may be of particular interest to manag-
received (Stetz et al., 1995).
ers and administrators have decreased in importance in 2000
when compared to prior surveys: cost containment, advanced
it was ranked 87 by the adjusted total sample, but was ranked 17
practice nursing, care delivery systems, acuity/patient classi-
by the researcher group. This decrease in priority ranking by
fication, and staffing ratios and mix. Interestingly, some of
clinicians may represent intense concerns regarding advanced
these items seem to represent changes that have occurred in
practice roles, titling, positions, and education among practitio-
the global healthcare environment. For example, healthcare
ners and the emphasis placed by ONS on needing to meet these
and nursing administrators are increasingly adept in the appli-
concerns during the early 1990s. Whether the decrease indicates
cation of financial analyses. Utilization of patient acuity and
that many of these issues are resolved or they are merely artifacts
classification systems has assumed less emphasis.
related to the large proportion of survey respondents with diplo-
Today, the combination of a competitive employment mar-
mas or associate or bachelor's degrees is unclear. Learning what
ket, payor limits on length of stay, and more complex, aggres-
aspect of advanced practice nursing the researcher group be-
sive therapies present administrators with additional chal-
lieves should be studied would be of particular interest.
lenges in effectively managing care and treatment outcomes.
Topics now listed in the top 20 that were not rated as high
Administrators have responded to this predicament with an
in the 1994 survey are of interest. These include suffering
intensified emphasis on evidence-based practice and the mea-
surement of outcomes of nursing care, which is mirrored in
(rated 8 in 2000 versus 28 in 1994), depression (rated 13 in
the survey results in these topic areas. Standards of care
2000 versus 33 in 1994), and hope (rated 16 in 2000 versus 37
in 1994). These topics reflect the realities of the cancer expe-
(ranked 28), outcomes of cancer care (ranked 51), and evi-
rience and may reflect oncology nurses' desire to minimize
dence-based practice (ranked 78) reflect increasing impor-
the psychosocial ramifications of cancer and its treatment
tance of these topics to managers and administrators of can-
while also decreasing the impact of physical symptoms.
cer care services.
The year 2000 survey has given ONS clinicians a voice and
External bodies, such as the Joint Commission on the Ac-
opportunity to reflect and articulate what they see as signifi-
creditation of Healthcare Organizations (JCAHO), have
cant clinical issues for patients and families. The results of this
pointed to specific clinical problems, such as pain manage-
survey represent the research needs perceived by ONS mem-
ment (ranked 1), as a priority for clinicians and institution
bers and update the research values of practitioners. The re-
leaders (JCAHO, 2001). Managers and administrators must
sults may be a reflection of the prevalence of problems that in-
demonstrate the establishment of formal pain management
dividual nurses see in their professional practice. Nurses'
programs, as well as the outcomes of these programs. Research
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in this topic can identify the qualities and components of suc-
Table 7. Top 20 Research Priorities: Total Sample and
cessful pain management programs.
Researcher Group
The year 2000 research priorities identified through the
survey will provide managers and administrators with an op-
Year 2000 Total Sample, Adjusted for Researcher
Group Sampling
portunity to support the conduct of research in priority areas.
These data also will provide a framework for administrators
Mean Importance
and managers to use in exploring the issues of concern and
a
Ratingb (SD)
Topic
Rank
importance for clinical caregivers.
Painc
01
1.28
(0.555)
Future Research Perspective
Quality of lifec
02
1.28
(0.542)
Researchers should investigate phenomena of immediate
Early detection of cancerc
03
1.32
(0.595)
concern to clinicians (e.g., symptom management), as well as
Prevention/risk reductionc
04
1.55
(0.700)
areas of emerging interest (e.g., prevention, early detection,
05
Neutropenia/immunosup-
1.60
(0.551)
pression
evidence-based practice, caregiver burden). In the quest for
Hospice/end of lifec
06
1.62
(0.768)
creating new knowledge and armed with information about
Oncologic emergencies
07
1.63
(0.782)
the changing demographics of the patient population, re-
Suffering
08
1.65
(0.771)
searchers have an obligation to investigate these areas to en-
Fatiguec
09
1.66
(0.757)
sure that future nurses involved in cancer care are prepared to
Ethical issues
10
1.67
(0.802)
address individual and family needs.
Anorexia
11
1.67
(0.719)
Some topics that represent future trends in cancer care and
Access to cancer carec
12
1.69
(0.748)
research were rated low on the priority scale by the entire
Depressionc
13
1.69
(0.685)
sample. Some of these items include genetic counseling/test-
14
Stress-coping adaptation
1.70
(0.668)
ing (rank 79 of 113), elderly populations (rank 81), and
15
Nurse retention
1.70
(0.891)
multicultural populations (rank 88). These items and others
16
Hope
1.70
(0.737)
ranked low or not included on the list (e.g., smoking cessa-
Palliative carec
17
1.71
(0.728)
18
Decision making in ad-
1.72
(0.786)
tion) should be addressed by oncology nursing researchers.
vanced disease
The fact that they were not rated highly on the 2000 priority
19
Family education
1.75 (0.708)
survey should not exclude them from consideration for study
20
Cancer recurrence
1.78 (0.756)
and funding. ONS, the ONS Foundation, and other funders
need to develop a mechanism to include topics that represent
Year 2000 Researcher Group
future trends even though they may not be rated high using
survey methods.
Mean Importance
Although the prevalence of problems that clinicians en-
Ratingb (SD)
Rank
Topic
counter in practice may influence the importance ranking of
01
1.40
(0.616)
Evidence-based practice
these items, clinicians perceived them as just that--problems
Painc
02
1.41
(0.678)
that have not been addressed adequately. Research utilization
Quality of lifec
03
1.44
(0.589)
and incorporation of results into practice are essential steps
04
1.45
(0.638)
Outcomes of cancer care
in validating the findings of studies related to pain, suffering,
05
1.58
(0.679)
Caregiver burden
fatigue, and the like. Knowledge may be derived from re-
06
Family caregiving
1.59
(0.648)
search, but the application of knowledge influences the ef-
Fatiguec
07
1.60
(0.691)
fects and impact of the research. Future surveys might in-
Access to cancer carec
08
1.61
(0.675)
clude the opportunity for respondents to comment on the
09
1.63
(0.703)
Family communications/
degree to which research has been applied successfully to
relationships
clinical problems.
Early detection of cancerc
10
1.71
(0.715)
Researchers tended to rate items such as evidence-based
11
1.73
(0.703)
Cognitive impairment
Family educationc
12
1.78
(0.766)
practice, outcomes of cancer care, family issues, and health
Prevention/risk reductionc
13
1.80
(0.813)
policy as more important than clinicians rated them; however,
Socioeconomically disad-
14
1.81
(0.852)
researchers and clinicians did prioritize many areas similarly,
vantaged
including pain, quality of life, early detection, prevention and
Depressionc
15
1.82 (0.697)
risk reduction, and fatigue. Working together, practice can
Palliative carec
16
1.82 (0.780)
influence research priorities and research can influence prac-
17
1.84 (0.777)
Advanced practice nurs-
tice outcomes.
ing
Hospice/end of lifec
18
1.85 (0.792)
Using the 2000 ONS Priorities Survey Results
19
1.85 (0.740)
Long-term effects of treat-
In the past, the ONS Research Priorities Survey has been
ment
used by both ONS members and the ONS Foundation in the
20
1.87 (0.825)
Health policy
development of proposals to a wide variety of funding
a
Rank order reflects rank of topic in total sample after adjust-
sources. When researchers are able to cite the focus of their
ment for researcher group oversampling.
proposed research as one included in the top ONS research
b
Rated 1 (extremely important) to 5 (not at all important).
priorities, additional support toward funding of the proposal
is engendered. In 2000, the ONS Steering Council, ONS
c
Indicates that this topic was among the top 20 in both groups.
Board, and ONS Foundation Board approved a business plan
N = 788
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to use the 2000 ONS Research Priorities in conjunction with
in a step-by-step program of research over time, and esti-
other information from ONS expert panels and sources to
m a t es of monetary and personnel resources needed to
develop an ONS Research Agenda. The ONS Research
achieve these goals. The ONS Research Agenda will provide
Agenda will represent ONS's best concepts regarding the re-
an objective, balanced way of deciding on funding priorities
search that needs to be conducted, some of the mechanisms
and will build on the 2000 ONS research priorities survey
needed to achieve the answers, and the resources that are
findings.
needed. The survey results reported here provide an impor-
tant foundation for this document. The ONS Research
The authors acknowledge Jennifer Brown, ONS research administrative
assistant, for her work in the distribution of and data entry for this survey.
Agenda will be a dynamic document that will represent not
only the content of the research that needs to be conducted,
but articulate what type of research may be appropriate for
Author Contact: Mary E. Ropka, PhD, RN, FAAN, can be reached
what type of content, at what level the research is appropri-
at mropka@virginia.edu, with copy to editor at rose_mary@earthlink
ate, how to approach the search for the answers to questions
.net.
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