Information needs and sources of information among cancer patients:
a systematic review of research (1980–2003)
Lila J. Finney Ruttena,b,*, Neeraj K. Arorab, Alexis D. Bakosc,
Noreen Azizb, Julia Rowlandb
aCancer Prevention Fellow, Cancer Prevention Fellowship Program, Division of Cancer Prevention, National Cancer Institute,
6130 Executive Blvd., EPN 4051A, MSC 7365, Bethesda, MD 20892, USA
bDivision of Cancer Control and Population Sciences, National Cancer Institute, 6130 Executive Blvd., Bethesda, MD, USA
cNational Institute of Nursing Research, 6701 Democracy Blvd., Bethesda, MD, USA
Received 5 March 2004; received in revised form 12 April 2004; accepted 5 June 2004
Understanding what cancer patients need to know and from whom they receive information during the course of care is essential to
ensuring quality care. We reviewed 112 articles published from 1980 to 2003 and developed a typology summarizing cancer patients’
information needs and the sources from which they receive information. The majority of articles focused on information needs and sources
during the diagnosis and treatment phase. Thus, the most frequent information need was treatment-related (38.1%). The most frequent
information source was health professionals (27.3%). We examined patients’ information needs and sources along the continuum of care and
found that during diagnosis and treatment, information needs about the stage of disease, treatment options, and side-effects of treatment were
prominent; during post-treatment, patients continued to need information about treatment, and information about recovery was also
important. Future research should examine cancer patients’ information needs and sources throughout their cancer journey.
? 2004 Elsevier Ireland Ltd. All rights reserved.
Keywords: Cancer; Information needs; Information sources
A vast body of research identifying cancer patients’
information needs and the sources from which they receive
cancer-relevant information has emerged; our study pro-
vides a comprehensive review of this literature [1–112]. The
benefits of information for cancer patients include increased
patient involvement indecision-making and greater satisfac-
during the diagnosis, treatment, and post-treatment phases
[63,113,114]; reductions in anxiety and mood disturbances
[96,115]; and improved communication with family mem-
bers [116–118]. Information seeking has been demonstrated
to play a critical role in individuals’ efforts to cope with the
disruption of quality of life associated with cancer diagnosis
and treatment . Because effective communication is
known to be key to optimal health outcomes, understanding
from whom they receive this information becomes vital to
ensuring the delivery of quality cancer care. To date, most
distinct sets of patients at limited periods during their care.
Furthermore, many of the existing reviews of this literature
edge,no comprehensive attempthasbeen made tosynthesize
view of cancer patients’ information needs over time.
sources from which they receive cancer-relevant information
throughout their cancer journey. Specifically, this review
seeks to address the following objectives: (1) identify cancer
patients’ information needs during their cancer journey, (2)
Patient Education and Counseling 57 (2005) 250–261
* Corresponding author. Tel.: +1 301 435 2842
E-mail address: firstname.lastname@example.org (L.J.F. Rutten).
0738-3991/$ – see front matter ? 2004 Elsevier Ireland Ltd. All rights reserved.
identify the sources cancer patients use to obtain cancer-
relevant information, and (3) examine whether, and to what
extent needs and information sources sought vary by phase
of the cancer care continuum (diagnosis, treatment, post-
treatment/survivorship, relapse/recurrence, and end-of-life).
A review of the literature published over the past 20 years
was conducted using the following databases: Medline,
Cumulative Index to Nursing and Allied Health Literature
(CINAHL), Social Science Citation Index (SSCI), and Psy-
chINFO. The search was limited to articles published in
English between January 1, 1980 and July 31, 2003, invol-
ving adult samples. To be comprehensive, we conducted a
fairly broad search using the following search terms in
conjunction with the term cancer: information needs, infor-
mation resources, information support, information seeking,
information sources, patient concerns, patient satisfaction,
patient communication, patient experience, patient educa-
tion, and patient knowledge.
This initial search resulted in a total of 3401 hits. We
that many of the articles were not relevant to the topic of our
review and were more broadly related to cancer, including
healthcare providers’descriptions of patients’ cancer experi-
ing cancer information services, cancer screening utilization,
cancer mortality, and patient needs other than information
focus on cancer information needs and sources. Detailed
examination of these 217 resulted in the selection of 112
articles that explicitly assessed cancer patients’ information
ing on patients’ cancer educational concerns, cancer-relevant
on the information needs and sources of cancer patients, the
needs and/or information sources for family members of
cancer patients, (2) articles focusing on cancer-related infor-
(3) articles limited to the description of survey instrument
development, (4) articles describing the evaluation of inter-
ventions aimed at improving information support without
explicit assessment of patient information needs and/or
sources, (5) articles focusing exclusively on cancer patients’
knowledge, and (6) articles that reviewed the literature.
3.1. Sample characteristics
Characteristics of the samples described in the articles
were coded and summarized (Table 1). In the majority of
cancer diagnoses (52%); samples focusing exclusively on
breast cancer patients (25%) or patients with prostate cancer
(16%) were also common. The average sample size was n =
352, ranging from (n = 1)  to (n = 13,136) . Since the
search was limited to articles published in English, it is not
surprising that the majority of samples were drawn from
populations in the United States (31.3%), Canada (27.7%),
and the United Kingdom (18.8%). Although our literature
search included articles published from 1980 to July 2003,
the overwhelming majority of articles (92.0%) were pub-
lished since 1990. More than half of the articles included in
the review assessed both information needs and sources
(52.9%), while 39.2% of the articles assessed only needs
and 7.8% assessed only sources. Patient samples were
drawn from across the cancer care continuum: 34% of
articles assessed patients who were at the diagnosis and/
or treatment phase; 32% of articles assessed patients during
L.J.F. Rutten et al./Patient Education and Counseling 57 (2005) 250–261251
Characteristics of literature included in review
Cancer continuum phase of patient
Other site specific
Other European nations
Other (mixed designs)
Data collection method
post-treatment; and the remaining articles included patients
from multiple phases of the cancer care continuum (33.9%).
3.2. Methodological characteristics
Methodological characteristics of the articles reviewed
were coded and summarized (Table 1). Most investigations
employed either a concurrent (46.4%) or retrospective
(37.5%) design. Studies employed a range of data collection
approaches including original surveys (47.3%), previously
and previously developed surveys were administered via
telephone, by in-person interview, and through pencil
and paper measures. Commonly used survey instruments
included the Krantz Health Opinion Survey (KHOS) ,
instruments derived from the nine information needs iden-
tifiedandinitiallytestedbyLuker etal. andbyBilodeau
and Degner  and their colleagues, the Toronto Informa-
tion Needs Questionnaire (TINQ-BC) , the Cancer
Needs Questionnaire (CNQ) , and the Information
Needs Questionnaire-Breast Cancer
Approximately 20% of the articles discussed their work
intermsofatheoreticalframework; Lazarus’ modelof
stress and coping was most commonly used, with an empha-
sis on the important role that information seeking plays in
helping cancer patients cope with the demands of their
3.3. Information needs
We created a typology of information needs containing
10 information need categories with 64 subcategories as a
classification scheme for information needs (Table 2). The
10 information need categories were as follows: cancer-
specific information, treatment-related information, prog-
nosis information, rehabilitation information, surveillance
and health information, coping information, interpersonal
information, financial/legal information, medical system
information, and body image/sexuality information. These
categories were identified and refined throughout the review
process to reflect prominent themes in the studies reviewed.
We examined the 91 articles assessing patient needs to
discern and classify patients’ information needs; citations
for these articles by category of need and the associated 64
subcategories are shown in Table 2.
We report the frequency with which different types of
information needs are mentioned in the literature in two
ways. First, we summarized the relative percentage of needs
discussed across the entire body of literature reviewed that
belonged to each of the 10 information need categories. We
also provide information on the percentage of articles that
discussed each of the 10 information need categories. For
example, 96% of the articles mentioned patients’ need for
treatment-related information, and 65% mentioned a need
for cancer-specific information. The significance of exam-
ining needs and sources as both a percentage of total unique
needs identified in the literature and as a percentage of
articles that mention a specific need is that this provides a
fuller, more in-depth picture of cancer patients’ information
needs and sources. Furthermore, the consistency in the
content identified through these two means provides some
reassurance that the content of our typology is a valid
refection of the current literature.
The 64 distinct subcategory needs were identified across
of articles mentioned more than one information need, any
given article could therefore, be classified into multiple
categories. We determined the percentage of needs belong-
ing to each categoryby dividing the frequencyof occurrence
of subcategory needs within each category by 795. For
example, the nine subcategories of needs within the can-
cer-specific information category were mentioned for a total
of 102 times in the literature. Thus, 12.8% (102/795) of the
information needs discussed in the literature were related to
cancer-specific concerns. Percentages for the 10 categories
thus sum to 100%.
In addition to presenting the distribution of information
needs in the literature across the 10 categories, we also
summarized the relative percentage of needs for each indi-
vidual subcategory. Since needs identified in a given article
could be classified into more than one subcategory, we
determined the percentage of needs in each subcategory
by dividing the number of unique occurrences of each
subcategory need by the sum of all subcategory needs within
each category. For example, within the category cancer-
specific information the nine distinct subcategories occur a
total of 102 times; therefore, to determine the percentage for
each subcategory of needs within diagnosis, the frequency
for each of the nine subcategories was divided by 102.
Subcategory percentages within each category thus sum
Table2summarizesthe percentageoftotalneeds foreach
need category and for each corresponding subcategory. The
most frequently cited category was treatment-related infor-
mation (38.1%). Within the treatment-related information
category, the most frequent subcategories were available
treatments and treatment options (17.2%) and side effects of
treatment/risks and benefits of treatment (20.5%). Other
prominent categories were cancer-specific information
(12.8%) and rehabilitation information (12.2%). The most
common subcategory need mentioned in the cancer-specific
information category was type of cancer/nature of disease
(27.5%), and the most common subcategory in the rehabi-
litation information category was self-care issues/home care
during recovery (30.9%).
3.4. Information sources
We also created a typology of cancer patients’ informa-
tion sources containing fivesource categoriesand 19distinct
subcategories (Table 3). The five information source cate-
gories were as follows: health care professionals, printed
L.J.F. Rutten et al./Patient Education and Counseling 57 (2005) 250–261 252
L.J.F. Rutten et al./Patient Education and Counseling 57 (2005) 250–261 253
Typology of cancer patients’ information needs (n = 91 articles, 795 needs)
Type of cancer/nature of disease (27.5%)
Etiology and course of disease (15.7%)
Physical effects of disease (14.7%)
Specific diagnosis information (12.7%)
Stage of disease (9.8%)
Symptoms of cancer/management of symptoms (7.8%)
Where to get information about specific cancer diagnosis (6.9%)
Seeking second opinions (2.9%)
Disease information (2.0%)
(65% of articles, n = 59)
Side effects of treatment/risks and benefits of treatment (20.5%)
Available treatments/treatment options (17.2%)
Treatment plan, treatment description, or logistical
Tests and procedures involved in treatment (8.6%)
Reducing side effects of treatment (8.3%)
Alternative or complimentary treatments (7.3%)
How treatment works (4.6%)
Physical effects of treatment (4.3%)
Progress during treatment (3.0%)
Treatment success (2.6%)
Physical limitations during treatment (2.3%)
Clinical trials (2.0%)
Purpose of treatment (2.0%)
Other patients’ experiences or choices about treatment (2.0%)
Referrals for treatment (1.3%)
Where to get information about treatment (0.7%)
Effects of missing treatment (0.3%)
(96% of articles, n = 87)
Chance of cure (24.4%)
Life span or survival rate (20.9%)
Recurrence of cancer (17.4%)
Spread of disease or metastasis (12.8%)
Expectations for future health condition (8.1%)
Effect on life plan or long term goals (7.0%)
Outcome of no treatment or delayed treatment (5.8%)
Options if initial treatment fails (3.5%)
Chance of cure (24.4%)
(51% of articles, n = 46)
Self care issues or home care during recovery (30.9%)
Nutrition during recovery (21.6%)
Immediate post-treatment follow-up care (16.5%)
Long-term side effects of cancer or treatment (12.4%)
Recognizing or preventing complications following treatment (6.2%)
Recovery time (6.2%)
Where to get medical supplies or medical equipment (6.2%)
(63% of articles, n = 57)
Surveillance and health
Maintaining physical health or physical activity (37.0%)
Prevention and early detection (29.6%)
Maintaining psychological health (22.2%)
Health behavior and promotion (11.1%)
89,92,94,100,110,112] (24% of articles, n = 22)
Coping information (8.8%) Emotional reactions, emotional support, coping with cancer (45.7%)
Community counseling or support (24.3%)
Support groups (17.1%)
Support from other patients (8.6%)
Spiritual support (4.3%)
108,112] (45% of articles, n = 41)
Effect on family, friends, or caregivers (35.4%)
Effect on social life or leisure (29.2%)
Risk of disease for family members (22.9%)
Effect on employment or work life (12.5%)
(33% of articles, n = 30)
Cost of treatment, insurance coverage, or other financial issues (75.0%)
Advanced directives or writing a will (25.04%)
[54,56,99,112] (4% of articles, n = 4)
material, media, interpersonal, organizational and scientific
resources. These categories were developed and refined
throughout the review process to reflect prominent informa-
tion sources identified by cancer patients in the studies
reviewed. We examined the 45 articles assessing patient
citations for these articles by source category are shown in
We determined the frequency of sources in the five broad
information source categories in the same manner pre-
viously described for information needs; the number of
unique occurrences of specific subcategory sources was
counted. We identified 260 total occurrences of the 19
distinct subcategories. We determined the percentage of
total sources for each source category by dividing the
frequency of sources within each category by 260. Thus,
the percentages for the five categories sum to 100%. We
calculated the percentage of sources for each subcategory by
dividing the number of unique occurrences of a particular
subcategory source by the sum of subcategory sources
within each category. For example, within the category
health professionals, the four distinct subcategory sources
L.J.F. Rutten et al./Patient Education and Counseling 57 (2005) 250–261 254
Table 2 (Continued)
Interactions with health care providers (26.7%)
Experience or qualifications of physician and medical staff (20.0%)
Quality of medical equipment and supplies (20.0%)
Health care systems (20.0%)
Available research (13.3%)
(9% of articles, n = 8)
Physical appearance/physical attractiveness (35.5%)
(25% of articles, n = 23)
aThe percentage of total needs assessed within each category was determined by dividing the frequency of needs within each category by the 795 unique
occurrences of the 64 distinct subcategory needs that were identified.
bThe percentage of needs in each subcategory was determined by dividing the number unique occurrences of subcategory needs by the sum of all
subcategory needs within each category.
Typology of cancer patients’ information sources (n = 45 articles, 260 sources)
Health professionals (27.3%) Physician (e.g. general practitioner, surgeon, oncologist)
Other health care professional or health care
professionals in general (25.4%)
Other health-related professionals
(e.g. lawyers, financial planners) (2.8%)
15,99,101,104–108,111,112] (80% of articles, n = 36)
Printed materials (26.2%) Books (25.0%)
Libraries/unspecified readings (23.5%)
Magazines and newspapers (22.1%)
Materials from physician (7.4%)
77,80,87,89,97,104–108,111,112] (80% of articles, n = 36)
Media (13.5%) TV, radio, or videos (62.9%)
104–108,111,112] (60% of articles, n = 27)
Interpersonal (18.8%)Friends and/or family (42.9%)
Counseling, support groups, or support services (30.6%)
Other patients (20.4%)
Clergy, church, synagogue, or other place of worship (6.1%)
81,83,87,89,99,101,104–108,111,112] (78% of articles, n = 35)
Organizational and scientific
Telephone information services
(e.g. Cancer Information Service) (37.8%)
Charitable or professional organizations
(e.g. American Cancer Society) (35.1%)
Medical journals or books (21.6%)
Health care organizations (5.4%)
83,87,89,104,106,108] (62% of articles, n = 28)
aThepercentageof total sourcesassessedwithineach category wasdeterminedby dividingthe frequency ofsourceswithineach categoryby the 260 unique
occurrences of the 19 distinct subcategory sources that were identified.
bThe percentage of sources in each subcategory was determined by dividing the number unique occurrences of subcategory sources by the sum of all
subcategory sources within each category.
were mentioned for a total of 71 times; therefore, the
health professionals were divided by 71 to determine the
percentage belonging to each particular subcategory. Thus,
subcategory percentages within each category sum to 100%.
Table 3 summarizes the percentage of total sources for
each source category and corresponding subcategories. The
most frequent information source category was health pro-
fessionals (27.3%), with the most prominent subcategory
being physicians (43.7%). Printed materials (26.2%) was
also a frequently mentioned category; the most frequent
provides information on the percentage of articles that
discussed each of the 10 information source categories.
For example, 80% of the articles mentioned health profes-
sionals as a source, and 80% mentioned printed materials as
an information source.
3.5. Needs and sources across the cancer
Our initial intention for this reviewwas tosummarize key
information needs and sources for cancer patients within
each of the phases of the cancer care continuum. To this end,
we hoped to characterize and compare patients’ needs and
sources during the diagnosis, treatment, and post-treatment
phases. Patients in the studies reviewed were roughly evenly
distributed across the cancer care continuum. However,
while the majority of patients in the diagnosis and treatment
phase were asked about their current information needs
(68.4%), the majority of patients in the post-treatment phase
(72.2%) were asked to consider their needs retrospectively.
Regardless of where patients were along the cancer care
continuum, they were most often asked to discuss informa-
tion needs and sources at the time of diagnosis and during
treatment. Thus, overall this body of literature primarily
addresses patients’ information needs and sources during
diagnosis and treatment. Therefore, it became clear that our
original plan to organize this review of literature as a
comparison of patient needs and sources across the cancer
care continuum would have to be limited to a comparison of
those studies wherein patients at different phases in the
continuum were asked to consider their information needs
and sources concurrently.
To examine the issue of changing needs and sources over
time, we identified a subset of articles that concurrently
assessed patients’ needs and/or sources duringdiagnosis and
treatment (n = 26) as well as a subset of articles that
concurrently assessed patients’ needs and/or sources post-
treatment (n = 9). The previously discussed categories and
subcategories of needs and sources were used to summarize
the percentage of the total unique occurrences of needs and
sources in this subset of articles. These percentages were
determined within categories and subcategories in the same
L.J.F. Rutten et al./Patient Education and Counseling 57 (2005) 250–261 255
Comparing information needs and sources at diagnosis and treatment to post-treatment
Information needs Phase in cancer care continuum
Occurrences of subcategory needs
Number of articles
Surveillance and health
Information sources Diagnosis/treatment Post-treatment
Total occurrences of sources
Total number of articles
aPercentages determined by dividing the frequency of needs within each category by the unique occurrences of the distinct subcategory needs.
bPercentages determined by dividing the frequency of needs within each category by the unique occurrences of the distinct subcategory needs.
cFisher’s Exact Test.
manner previously described. The percentages of total needs
and the percentages of total sources in each of the categories
during the diagnosis and treatment phase of the cancer care
continuum and during the post-treatment phase are shown in
3.5.1. Information needs
As might be expected, the most frequently cited needs
during the diagnosis and treatment phasewere in the cancer-
specific information (15.3%) and the treatment-related
information (43.8%) categories. Within the treatment-
related information category, the most frequently cited
subcategory needs were available treatments/treatment
options (18.2%) and side effects of treatment (18.2%).
The subcategories most frequently mentioned within the
cancer-specific information category were stage of disease
(18.5%) and specific diagnosis information (18.5%).
The most frequently cited post-treatment information
information (22%) categories. During the post-treatment
phase, information about available treatments/treatment
options was frequently mentioned, with 21.4% of needs
in this subcategory. Another prominent subcategory need
during post-treatment was the side effects of treatment
(17.9%). Within the rehabilitation information category,
the following subcategories were cited most often: self-care
issues/home care (22.2%), follow-up care and treatment
(22.2%), and long-term side effects (22.2%).
3.5.2. Information sources
The most prominent information sources used during the
diagnosis and treatment phase were printed materials
(34.6%) and health professionals (26.9%). Brochures
(33.3%) and libraries/unspecified readings (33.3%) were
the most frequently mentioned subcategories within the
printed materials category. Physicians (42.9%) were most
often cited within the health professionals category. Post-
treatment survivors identified health professionals (40.6%)
and interpersonal (25.0%) contacts as key information
sources. During the post-treatment phase, physicians,
nurses, and other health care professionals were cited as
sources of information equally often, with 30.8% of the total
sources in each of these subcategories.
3.5.3. Comparison of diagnosis and treatment phase to
We used Fisher’s exact test to compare the proportion of
information needs and sources in each category during the
proportion of needs and sources during the post-treatment
phase. As would have been expected, a significantly greater
proportion of needs fell into the cancer-specific information
category during the diagnosis and treatment phase than
during the post-treatment phase (P < .05), while a signifi-
cantly greater proportion of needs fell into the rehabilitation
information category the during post-treatment phase than
during the diagnosis and treatment phase (P < .01). No
significant differences were detected in the proportion
of information sources cited by phase of the cancer care
3.6. Sociodemographic factors and information
needs and sources
Several broad conclusions about cancer patients’ infor-
mation needs and sources can be drawn from the literature
reviewed. In general, younger patients tend to seek more
information than older patients [6,10,11,15,39,45,61,65].
Additionally, the range of sources from which individuals
seek information appears to be broader in the younger
patients than in older patients. Furthermore, older patients
demonstrate greater reliance on information provided by the
cancer specialist or physician than younger patients .
Several studies also suggest that women seek more informa-
tion than men [5,12,25]. In general, there do not appear to be
dramatic differences in information needs or sources based
on racial/ethnic differences . However, evidence for
differences among socioeconomic groups suggests that
information needs and sources are influenced by economic
class; greater amounts of information are sought from more
diverse sources among those from higher socioeconomic
strata. Patients with higher educational attainment were also
more likely to seek information from a greater range of
sources .Although a fewdifferences ininformation needs
and sources for patients livingin urbanversusrural locations
have been documented,inthe majority ofinvestigations
the informational needs and common sources of information
used by rural patients have not been found to differ drama-
tically from those of urban patients [43,84,88,101].
4. Methodological critique of studies
There is a great deal of consistency in the content of
information needs and sources reported across diverse sam-
ples and varied methodologies, which provides a cohesive
picture of cancer patients’ information needs and sources.
However, there are several conceptual, measurement, and
design limitations of this literature that are worth noting.
4.1. Conceptual refinement
Only a minority of investigations reported use of a
theoretical or conceptual framework [7,11,13,15,22,26,40,
46,51,61,63,67,79,84,86,88,92]. In many of the investiga-
tions that reported use of a theoretical model, the theories
lopment [7,11,13,15,22,26,40,46,63,79,85,88,92]. Other
investigations employed theoretical models to explain or
organize their research findings [51,61,67,84,86]. Specifi-
cally, the use of theoretical models, such as Lazarus’ 
L.J.F. Rutten et al./Patient Education and Counseling 57 (2005) 250–261 256
cancer patients’ information needs and clarified the impor-
tance ofinformation from trusted sources for cancer patients.
Both of these approaches served to clarify the conceptual
and theory-grounded understanding of patients’ information
needs and sources. Theoretical frameworks and models can
guide approaches to assessing cancer patients’ information
needs and sources and provide a framework for summarizing
them. Use of theoretical models to provide a rationale for
investigating information needs and sources as well as to
derive hypothesesandexplainfindingswouldprovide a more
coherent picture of patients’ information needs, and the
sources from which they seek information.
Several of studies in the review assessed needs and
sources with instruments that had not been previously
65–67,71–73,75,76,82,83,112]. Only a minority of studies
across studies more difficult and potentially limiting the
validity of the findings [14,21,26,61–63,70]. An advantage
of developing original survey instruments is that it allows
investigators to tailor the questions to their unique patient
population; however, use of previously existing instruments
allows for more ready comparisons between patient popula-
tions. Future efforts to assess cancer patients’ information
needs and sources should strive for continuity with previous
4.3. Study design
A limitation of many of the studies was the predominant
use of cross-sectional and retrospective designs [3,6,14,15,
longitudinalstudydesigns [21,52,67,102]. Among thosewho
patients change throughout the clinical course of cancer. For
importance of information among women with breast cancer
changed from the time of diagnosis to 21 months following
diagnosis with greater concerns regarding the risk of breast
cancer among family members emerging at the 21-month
follow-up. Understanding the evolution of cancer patients’
information needs and preferred sources of information as
examined cancer patients’ needs and sources; thus, it is
needs and sources many change over time.
Several studies reported small (less than n = 25) sample
sizes [32,42,47,67,74,80,81,98,102,111]. Therefore, results
from these studies may not be representative of the wider
population of cancer patients, and must be interpreted with
caution. Many of the patient samples were homogenous
with regard to factors such as race, socioeconomic status,
and age [3,37,66,72,90],thereby limiting the extenttowhich
findings from these samples can be generalized to under-
represented individuals, including people of color, older
adults, and individuals with lower socioeconomic standing.
Response rates reported in many studies were low (often
below 50%) [5,11,16,27,34,36,40,43,51,55,60,66,75,68,86,
95], or in few cases, not reported [5,8,26,41,72,112]. Low
response rates, coupled with lack of information about the
characteristics of patients who chose not to participate may
undermine the generalizability of the results.
Our review provides a better understanding of the
relative focus of this expanding body of literature through
summary of both the number of articles addressing a
particular category of information need and/or information
source as well as the total number of occurrences of a
particular category of need or source in the entire litera-
ture. The use of qualitative and quantitative approaches to
analyzing these reports provides greater understanding of
patients’ needs and the sources of information used by
patients. More than a third of the articles reviewed were
published since 2000, suggesting that research attention to
the informational needs and sources of cancer patients is
Although the samples included patients from across the
their needs during diagnosis and treatment. Given the
emphasis in this literature on assessment of needs and
sources during diagnosis and treatment, the finding that
patients’ most frequently sought cancer-specific and treat-
ment-related information is not surprising. During the diag-
nosis and treatment phase, patients were primarily interested
in finding out their specific diagnosis including the stage of
disease, and in exploring their treatment options and under-
standing the side effects associated with those options.
Patients during the post-treatment phase demonstrated a
continued need for information about the treatment that
they had undergone and its side effects; during this phase,
information about rehabilitation was also prominent.
The finding that health professionals are the most fre-
quently cited information source emphasizes the crucial role
that physicians, nurses, and other health care professionals
play in meeting patients’ information needs. During the
diagnosis and treatment phase, patients rely heavily upon
brochures and their physicians for information about their
illness. Physicians remain an important source of informa-
tion during post-treatment; however, nurses and other health
care professionals become equally important sources of
information during this time.
L.J.F. Rutten et al./Patient Education and Counseling 57 (2005) 250–261257
Although health care professionals consistently emerge as
important sources of health information, continued evalua-
tion of the sources from which cancer patients seek informa-
tion is necessary to track potential shifts in sources of
information access. For example, the rapid growth in health
information on the World Wide Web (WWW) and the
development of technology-based health resources and con-
sumer health informatics systems which improve access to
and ease of use of such information, has begun to influence
the sources of health information used by cancer patients.
Recent investigations suggest that cancer patients are inter-
ested in Web-based resources  and that they may bene-
fit from the use of consumer health informatics systems
5.1. Practice implications
Our typology offers a comprehensive review of the
existing literature published to date on cancer patients’
information needs and sources. Although several methodo-
logical limitations of this body of research have been
identified, our typology provides a snapshot of the state
advancing assessment and methodology in this important
area of research and for improving our understanding of
cancer patients’ information needs and sources. The typol-
in our review provides a structure for summarizing this
significant and expanding body of research.
Organizing patients’ needs and sources into this typology
has allowed us to identify important strengths and limita-
tions of this area of research. Future investigations should be
guided by both the strengths and limitations of prior
research. A key strength of this research resides in the
consistency with which the content of patients’ information
needs and sources emerges from varied patient samples,
methodological approaches, and assessment tools. Contin-
ued evaluation in this direction through a variety of meth-
odological approaches will contribute to our understanding
of patients’ needs and the sources from which they seek
information. The typology developed in this review may
serve as a framework for crafting more comprehensive and
standardized assessment tools for evaluating cancer patients’
information needs and sources.
The methodological limitations identified in this research
and the insufficient number of investigations focusing on
patients’ information needs and sources post-treatment illu-
minated through the development of our typology offer
fertile ground for making recommendations for advancing
research on cancer patients’ information needs and sources.
Future research should address the limitations identified
in past research by assessing the information needs and
sources of large, representative, and diverse samples of
cancer patients, including those with rare cancer diagnoses.
To capture a fuller understanding of the dynamic nature of
patients’ information needs, future research efforts should be
mindful that patients’ information needs and sources change
over the course of their cancer journey. Thus, assessment of
needs and sources should occur with clear reference to the
point in the cancer care continuum that a patient is currently
experiencing. Efforts to conduct longitudinal evaluations of
patients’ needsandsourcesare encouraged. Futureinvestiga-
tions should initiate assessment of patients’ needs at the time
of diagnosis and follow patients through their cancer journey
to ascertain important changes in information needs and
sources over time.
Previous research focuses almost exclusively on under-
standing patients’ needs and sources during the diagnosis
and treatment phase; thus, greater attention to the informa-
tional needs and sources of cancer patients during recovery,
survivorship, and end of life is also needed to address this
gap. Such research, combined with the findings from exist-
ing studies, which have largely focused on the active phase
of care, would inform evidence-based interventions to
address the information needs of cancer patients across
the cancer care continuum.
In addition to serving as a template for a more compre-
hensive assessment tool for researchers, this typology also
provides a tool for health care practitioners to familiarize
themselves with and assess common information needs
of cancer patients throughout their cancer journey. Under-
standing cancer patients’ information needs is the crucial
first step in designing interventions to meet the needs
of cancer patients. The typology of information needs
and sources created in this review provides a resource to
guide the development of interventions to address the infor-
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