perceptions of cancer-related information among cancer survivors: a report from the american cancer...
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Perceptions of Cancer-related Information AmongCancer SurvivorsA Report From the American Cancer Society’s Studies of Cancer Survivors
D. Keith McInnes, ScD, MS1,2,3
Paul D. Cleary, PhD4
Kevin D. Stein, PhD5
Lin Ding, PhD1
C. Christina Mehta, MSPH6
John Z. Ayanian, MD, MPP1,7
1 Department of Health Care Policy, HarvardMedical School, Boston, Massachusetts.
2 Department of Health Policy and Management,Boston University School of Public Health, Bos-ton, Massachusetts.
3 Department of Veterans Affairs Center forHealth Quality, Outcomes, and Economic Research,Bedford, Massachusetts.
4 Yale School of Public Health, Yale School ofMedicine, New Haven, Connecticut.
5 Behavioral Research Center, American CancerSociety, Atlanta, Georgia.
6 Statistics and Evaluation Center, American Can-cer Society, Atlanta, Georgia.
7 Division of General Internal Medicine, Brighamand Women’s Hospital, Boston, Massachusetts.
BACKGROUND. Sources of cancer-related information are rapidly increasing, but
little is known about whether the health information available to cancer survivors
meets their needs.
METHODS. The authors surveyed 778 Massachusetts cancer survivors 3, 6, or 11
years after their diagnosis for 6 common cancers. They analyzed their views
about 5 types of cancer-related information, the quality of that information, bar-
riers to getting it, their experiences with physicians providing cancer care, and
the quality of their cancer care.
RESULTS. Among 462 (61%) respondents who reported needing cancer informa-
tion, many gave unfavorable ratings (fair or poor) of the quality of cancer infor-
mation regarding cancer support groups (38%), long-term side effects (36%),
experiences of other cancer patients (26%), and cancer physicians (26%). About
20% of respondents reported sometimes experiencing barriers to obtaining can-
cer information, although fewer than 10% usually or always experienced barriers.
For both men and women, worse physical and mental functioning was associated
with greater need for information, worse ratings of information quality, and more
barriers to obtaining information (all P < .01). Cancer survivors who were black or
had lower incomes reported more problems obtaining needed information, and
younger women had greater information needs than older women (all P < .01).
CONCLUSIONS. Opportunities exist to improve the quality, content and delivery of
cancer-related information to survivors, especially for those who are racial/ethnic
minorities, have low incomes, or are in worse physical or mental health. Provid-
ing information more effectively to cancer survivors may improve their care and
health outcomes. Cancer 2008;113:1471–9. � 2008 American Cancer Society.
KEYWORDS: cancer survivors, access to information, consumer health informa-tion, health surveys.
T he amount of information available to cancer survivors and their
families has rapidly increased in the past decade, including in-
formation on the disease, treatments, clinical trials, symptoms, and
side effects.1,2 Many cancer patients and survivors want more can-
cer-related information,3 but little is known about the kinds of infor-
mation they want and need or about factors that facilitate or hinder
their ability to obtain information.2 Barriers to information about
cancer care have been noted, including the lack of information
about the quality of cancer care,4 and about tests and examinations
relevant to survivors.5 Furthermore, although the factors related to
seeking health-related information in general have been studied,6
much less is known about the information needs of cancer survi-
vors.7,8 A recent study of cancer-related information seeking, for
Supported by the Behavioral Research Center ofthe American Cancer Society and the ImprovingCancer Care in Massachusetts (CAMA) project ofthe Dana-Farber/Harvard Cancer Center.
We thank the Massachusetts Department of Pub-lic Health, Massachusetts Cancer Registry fortheir help in acquiring data used in this study.Carol Lowenstein provided valuable insights intocancer registry procedures.
Address for reprints: John Z. Ayanian, MD, MPP,Harvard Medical School, Department of HealthCare Policy, 180 Longwood Ave, Boston, MA02115; Fax: (617) 432-0173; E-mail: [email protected]
Received November 2, 2007; revision receivedMarch 11, 2008; accepted April 14, 2008.
ª 2008 American Cancer SocietyDOI 10.1002/cncr.23713Published online 29 July 2008 in Wiley InterScience (www.interscience.wiley.com).
1471
example, surveyed a nationally representative sample
of the US adult population, thus collecting informa-
tion mostly from persons without cancer.8
Research suggests that access to information
may produce better outcomes in cancer survivors.
For example, good patient-physician communication,
which may enhance patient information, is related to
improved patient outcomes.9,10 Patients with more
health-related information may achieve better self-
care, healthier lifestyles, and improved health-related
decision-making.11 Moreover, evidence suggests that
such information has contributed to declines in
morbidity and mortality.12 This is consistent with
Bandura’s self-efficacy theory, which suggests that
persons with more information about their health
condition are more likely to perform the disease
management activities that maintain or improve
their health.13 Studies of cancer patients have shown
relationships between self-efficacy, pain manage-
ment,14 and quality of life.15
Research on information for cancer survivors has
primarily emphasized the quantity, rather than qual-
ity, of information.16 Studies of information quality
have typically focused on patient experiences during
diagnosis and initial treatment,17,18 or have focused
on a single cancer.16,19,20 In our study we surveyed
cancer survivors who were at least 3 years postdiag-
nosis and with 1 of 6 cancers. We assessed per-
ceptions of the quality of 5 different types of
information: research trials, physicians, support
groups, experiences of other patients, and long-term
side effects. We hypothesized that cancer survivors,
even a decade postdiagnosis, continue to need can-
cer-related information, experience barriers to infor-
mation, and have concerns about the quality of
information. Our specific aims were to describe the
cancer-related information-seeking experiences of
survivors of 6 different cancers; describe survivor
characteristics associated with information need,
quality, and barriers; and evaluate whether survivors’
information-seeking experiences are associated with
their ratings of the quality of their clinical care.
MATERIALS AND METHODSStudy of Cancer Survivors-IIOur study is based on survey data collected in Mas-
sachusetts as part of the American Cancer Society’s
Study of Cancer Survivors-II (SCS-II), a multistate,
cross-sectional study of the quality of life and func-
tional status of cancer survivors.21
SCS-II selected population-based samples of
bladder, female breast, colorectal, prostate, uterine,
and melanoma cancer survivors identified through
state cancer registries. Survivor eligibility criteria
included: 1) diagnosis of 1 of the 6 aforementioned
cancers; 2) diagnosis in 1 of the target years (eg,
short-, medium-, or long-term survivors); 3) local, re-
gional, or distant Surveillance, Epidemiology, and
End Results summary stage,22 or in situ stage for
bladder cancer; 4) 181 years old at diagnosis; 5) resi-
dence in the state from which they were sampled at
diagnosis; and 6) ability to read/write English or
Spanish. Survivors were ineligible if they were unable
to complete the survey because of mental impair-
ment or terminal illness. Stratified sampling was con-
ducted by cancer type, time since diagnosis, and
race/ethnicity.
After physician notification/consent, eligible
cases were invited to participate via mail and tele-
phone contacts. Participants provided consent and
completed either a mailed questionnaire or a tele-
phone interview. Previous publications provide addi-
tional information regarding the survey content and
methodology.21,23
For SCS-II in Massachusetts, we drew a stratified
random sample, with oversampling of blacks and
Hispanics, of adult cancer survivors listed in the
Massachusetts Cancer Registry who were diagnosed
either 3, 6, or 11 years before the date of sampling
with 1 of the 6 eligible cancers. The survey was con-
ducted between October 2004 and July 2005, and
included questions related to cancer information.
This study was approved by institutional review
boards at Emory University, the Massachusetts
Department of Public Health, and Harvard Medical
School.
MeasuresThe cancer information questions were informed by
focus groups with 30 cancer survivors and in-depth
interviews with 4 cancer survivors between February
2003 and April 2004. We created 2 scales to measure
survivors’ perceptions of the quality of and barriers
to cancer information. One was a 5-item scale (Cron-
bach alpha 5 .93) that included cancer-related ques-
tions about the quality (poor, fair, good, very good,
excellent) of information about experiences of other
cancer patients, clinical trials, physicians, support
groups, and long-term side effects. The other scale
included 3 previously developed questions24 about
barriers to cancer information, including not know-
ing where to find information, requiring a lot of
effort to acquire information, and information being
difficult to understand (item responses of never,
sometimes, usually, always) (Cronbach alpha 5 .82).
The information-related questions asked about the
last 12 months. We created a dichotomous variable
1472 CANCER September 15, 2008 / Volume 113 / Number 6
of the need for cancer information, based on the 5
quality of cancer information items, each of which
contained a response of ‘‘did not need this type of
information.’’ Survivors who did not report needing
information for any of the 5 items were coded as not
needing any cancer-related information.
We assessed self-reported physical and mental
functioning using the Physical Component Summary
Score (PCS) and Mental Component Summary Score
(MCS), respectively, from the SF-36.25 Higher scores
on the PCS and MCS indicate better functioning. Our
measure of cancer treatment refers to treatment
completed or ongoing.
Survivors rated their care experiences with their
physician and their overall rating of cancer care
using 6 questions adapted from the Consumer
Assessment of Healthcare Providers and Systems, a
widely used, validated questionnaire for assessing
patient perceptions of their healthcare.26 Questions
address their physician explaining things well, pro-
viding emotional support, involving the patient in
decisions, being informed about the patient’s care,
spending enough time answering questions, and pro-
viding instructions to reduce symptoms and side
effects (items coded never, sometimes, usually,
always) (Cronbach alpha 5 .87). A single question
asked respondents for an overall rating of the clinical
cancer care received from all physicians and nurses
on a 0-10 scale (worst to best). In analyses using
mean scale scores, we imputed missing values by
inserting the mean item score.
Survivors were asked whether they had used the
Internet to seek cancer-related information. We did
not include this variable in our models because for 2
of our 3 outcomes (need for information and barriers
to information), it could be a result, rather than a
predictor, of the outcome and therefore endogenous.
Statistical AnalysesWe compared age when diagnosed with cancer, sex,
race/ethnicity, cancer type, and cancer stage of
respondents and nonrespondents. We performed de-
scriptive analyses of respondents’ demographic,
socioeconomic, and cancer characteristics, physical
and mental functioning, the information-related vari-
ables (need, quality, and barriers), and the 2 ratings
of care.
We estimated 3 multivariable regression models
with outcomes, respectively, of need for cancer infor-
mation, information quality, and information bar-
riers. We used logistic regression for the need for
cancer information model (dichotomous) and linear
regression for the quality and barriers models (con-
tinuous outcomes). For cases missing income, we
imputed values using a linear regression model (with
subjects not missing income) with income as the de-
pendent variable and independent variables being
the demographic variables, cancer-related variables,
and physical and mental functioning.27 We analyzed
separate models for men and women, excluding
breast and uterine cancer for men, and prostate can-
cer for women.
We determined whether the information vari-
ables were associated with perceptions of the quality
of cancer care by estimating Pearson correlation
coefficients between the 3 information variables and
the 2 ratings of care. We also estimated linear regres-
sion models for survivors’ ratings of their cancer phy-
sicians and their overall ratings of their cancer care,
controlling for the 3 information variables and socio-
demographic, cancer, and health-related variables.
All analyses were conducted using SAS statistical
software version 8.2.
RESULTSStudy CohortThe Massachusetts Cancer Registry provided names
and addresses of 3434 survivors who had been diag-
nosed 3, 6, or 11 years earlier with 1 of the 6 cancers
of interest, and 3253 of those survivors initially met
eligibility criteria. During recruitment, we determined
that 469 were deceased, and 126 were ineligible
because of language barriers, mental impairment, or
terminal illness. Of the remaining 2658 survivors, 686
refused, 906 did not respond, 271 had no valid con-
tact information, and 795 (29.9%) completed the
SCS-II questionnaire. Among these respondents, 778
also completed the cancer information questions
(response rate of 29.3%) and are the focus of our
analysis.
Patient CharacteristicsRespondents were younger when diagnosed than
nonrespondents (60.8 vs 63.0 years; P < .001), had
been diagnosed more recently than nonrespondents
(P 5 .002), were more likely to be white versus black
or Hispanic (P < .001), and were more likely to have
breast cancer and less likely to have colorectal and
bladder cancer (P 5 .005). There were no differences
by sex (P 5 .94) and cancer stage (P 5 .20).
Most respondents were 65 years of age or older,
52.7% were women, and 83.8% were white (Table 1).
Breast (29.3%) and prostate (27.8%) were the most
common cancers, followed by colorectal (19.3%);
72.6% had localized and 22.8% had regional cancers.
Time since diagnosis was 3 years for 38.9%, 6 years
for 33.2%, and 11 years for 27.9%. The most common
Cancer Survivors’ Information Perception/McInnes et al 1473
treatments (not mutually exclusive) were surgery
(89.8%), radiation (49.2%), and chemotherapy
(43.3%). Treatment was ongoing for 67% of those
reporting immunotherapy, 61% of those reporting
hormonal therapy, 32% of those reporting chemo-
therapy, 22% of those reporting radiation, and 15% of
those reporting surgery (data not shown).
Information Need, Quality, and BarriersOf the 778 respondents, 752 answered at least 1 of
the 5 items about need for information. Of these 752,
61.4% needed at least 1 of the 5 types of cancer in-
formation. Table 2 shows that the need for different
types of information ranged from 39.1% for informa-
tion on support groups to 48.3% for information on
long-term side effects. Most survivors needing infor-
mation reported satisfaction with the quality of infor-
mation, ranging from 62% rating as good, very good,
or excellent the quality of cancer support group in-
formation, to 74% rating information about the expe-
rience of other cancer patients this way. Still, about 1
quarter to 1 third of survivors gave poor or fair rat-
ings to the quality of cancer information, from 26%
both for experiences of other cancer patients and for
cancer physicians, to 36% for long-term side effects
and 38% for cancer support groups.
There was little variation in experiences with in-
formation-related barriers. For each of the 3 barriers
examined, approximately 70% of respondents experi-
ence them not at all, 20% sometimes, and fewer than
10% usually or always (data not shown).
Associations of Survivor Characteristics With InformationNeed, Quality, and BarriersFor the total sample, the adjusted need for informa-
tion was associated with younger age at diagnosis,
hormonal therapy, physical functioning, and mental
functioning (Table 3). The sex-specific analyses, how-
ever, indicate that there was an age gradient only for
women (odds ratio [OR] 5 4.44, P 5 .004 for age less
than 55 years vs age greater than 74 years), and that,
for women, being diagnosed longer ago (11 years vs
3 years) was associated with less need for informa-
tion (OR 5 0.46, P 5 .01). For men, none of the inde-
pendent variables was significantly associated with
the need for information.
In the quality of information analyses (Table 4)
only mental and physical functioning were signifi-
cant (P � .01 for each) in all 3 models. For men,
being diagnosed with in situ bladder cancer
(beta 5 21.19, P 5 .04) and being diagnosed 6 (com-
pared with 3) years ago (beta 5 2.48, P 5 .02) were
also associated with perceptions of worse quality of
cancer information, whereas for women the only sig-
TABLE 1Sample Demographics and Cancer-related Characteristics
Frequency %
Total no. of subjects 778
Age, y (n5778)
54 or younger 113 14.5
55-64 205 26.4
65-74 242 31.1
75 or older 218 28.0
Sex (n5778)
Men 368 47.3
Women 410 52.7
Race (n5778)
White 652 83.8
Black 62 8.0
Hispanic 40 5.1
Other 24 3.1
Education (n5743)
Less than high school 83 11.2
High school graduate 198 26.6
Some college 151 20.3
College graduate 311 41.9
Income (n5769)
<$20,000 107 13.9
$20,000-$39,999 201 26.1
$40,000-$74,999 195 25.4
$75,000 or more 266 34.6
Marital status (n5769)
Married 539 70.1
Separated or divorced 76 9.9
Widowed 111 14.4
Never married 43 5.6
Employment status (n5752)
Currently employed 315 41.9
Retired 350 46.5
Other 87 11.6
Type of cancer (n5778)
Breast 228 29.3
Prostate 216 27.8
Colorectal 150 19.3
Bladder 46 5.9
Uterine 68 8.7
Melanoma 70 9.0
Cancer stage (n5778)
In situ (bladder only) 24 3.1
Localized 565 72.6
Regional 177 22.8
Distant 12 1.5
Years since cancer diagnosis (n5778)
3 y 303 38.9
6 y 258 33.2
11 y 217 27.9
Cancer treatment received* (n5778)
Surgery 699 89.8
Chemotherapy 337 43.3
Radiation therapy 383 49.2
Hormonal therapy 223 28.7
Immunotherapy 94 12.1
SF-36 mental health, mean, median, SD (n5736) 53.0, 56.0, 9.0
SF-36 physical health, mean, median, SD (n5736) 48.7, 51.7, 10.4
SF-36 indicates the MOS 36-item short-form health survey; SD, standard deviation.
* Respondents could endorse multiple treatments. Treatment could be ongoing or completed.
1474 CANCER September 15, 2008 / Volume 113 / Number 6
nificant variable, besides mental and physical func-
tioning, was being black (compared with white;
beta 5 -.69, P 5 .03).
In information barriers analyses, mental and
physical functioning were significant in all 3 models
(Table 5). Among men, being black (compared with
white), was associated with information barriers
(beta 5 .35, P 5 .009). Among women, less education
(not completing high school vs college degree;
beta 5 2.36, P 5 .007) was associated with fewer
barriers, whereas low income (lowest vs highest;
beta 5 .29, P 5 .03) and distant cancer (vs localized;
beta 5 .62, P 5 .02) were associated with more bar-
riers.
Internet use, after adjusting for covariates, was
associated with greater need for information (72% vs
53%, P < .001), and more barriers to information (1.64
vs 1.30, P < .001), but not with quality of information.
Similar associations were found in models that exam-
ined men and women separately. We did not include
Internet use as an explanatory variable, however,
because of the problem of endogeneity described in
the Measures section. Employment status and cancer
type were not statistically significantly associated with
the outcomes in any of the multivariate models.
Correlations Between Information and Ratings of CareTable 6 shows the correlations for survivor percep-
tions of information variables, ratings of cancer care
experience (6-item care experience with one’s physi-
cian) (mean 5 3.65, median 5 4.00, standard devia-
tion [SD] 5 0.58, range 1-4), and rating of clinical
cancer care received (mean 5 9.13, median 5 10.0,
SD 5 1.65, range 0 to 10). Information quality was
positively, whereas need for information and infor-
mation barriers were negatively, correlated with the 2
care ratings. These associations continued to be sig-
nificant in multivariable models predicting ratings of
physicians, and of clinical cancer care, controlling
for demographic, cancer, and health functioning vari-
ables (data not shown).
DISCUSSIONIn our study of cancer survivors 3 to 11 years post-
diagnosis, we found that 61% of cancer survivors
needed at least 1 of 5 types of cancer information.
Among survivors indicating this need, most were
satisfied with the quality of the information they
received (62%-74%). Nevertheless, a substantial mi-
nority, 26% to 38%, rated the quality of information
they received as fair or poor. Survivors rated lowest
information on cancer support groups and long-term
side effects (38% and 36% fair/poor, respectively),
whereas they rated highest information about the ex-
perience of other cancer patients and about cancer
physicians (26% fair/poor for each). Less than 10%
reported frequently experiencing barriers to finding
and using cancer information.
These levels are lower than findings from the
HINTS study, which reported that 37% to 58% of the
general population seeking cancer information had
unfavorable experiences (strongly agree or somewhat
agree) such as not knowing where to find, or doubt-
ing the quality of, information.8 Our lower unfavor-
able rates may be because of our sample of relatively
long-term survivors. As such, they may have more in-
formation-seeking expertise compared with the
HINTS sample, in which 89% were either family
members of cancer patients/survivors or persons
without any personal or family history of cancer.
Better functioning was associated with less need
for, higher quality ratings of, and fewer barriers to infor-
mation. Worse physical and mental functioning may
deter survivors from getting the quantity and quality of
information they desire. Poorer functioning likely
represents a complex mixture of physical, psychologi-
cal, and emotional challenges that increase the need
for information as survivors try to understand and miti-
TABLE 2Distribution of Information Need and Ratings of Quality of Information for 752 Respondents*
Those Who NeedThis Information Among Those Who Need Information, Ratings of the Quality of Information, %
Items % n Poor Fair Good Very Good Excellent
Experience of other cancer patients 43.1 324 9.0 17.0 27.2 28.4 18.5
Cancer research trials 41.9 315 13.7 17.5 29.2 24.8 14.9
Cancer physicians 41.5 312 12.5 13.5 28.5 25.6 19.9
Cancer support groups 39.1 294 19.1 19.1 21.4 22.8 17.7
Long-term side effects of cancer 48.3 363 18.2 18.2 21.2 23.1 19.3
* Twenty-six of 778 subjects did not answer any of these 5 items, and thus 752 were included in the analysis.
Cancer Survivors’ Information Perception/McInnes et al 1475
TABLE 3Odds Ratios of Multivariate Logistic Regression Models PredictingInformation Need
AllRespondents
(N5713)yMen Only
(n5333)
Women Only
(n5380)
Predictors* OR P OR P OR P
Age, y
54 or younger 2.32 .02 0.89 .85 4.44 .004
55-64 1.91 .02 1.70 .19 3.00 .01
65-74 1.64 .04 1.77 .08 1.86 .11
75 or older (ref) — — — — — —
Race
White (ref) — — — — — —
Black 1.90 .08 2.15 .13 1.75 .29
Hispanic 2.00 .11 2.10 .32 1.77 .31
Other 1.77 .28 2.85 .21 0.93 .92
Education
Less than high school 0.79 .45 0.55 .19 1.07 .89
High school graduate 0.76 .21 0.76 .43 0.75 .37
Some college 0.93 .75 0.81 .52 1.20 .60
College graduate (ref) — — — — — —
Marital status
Married (ref) — — — — — —
Separate or divorced 0.80 .46 0.88 .78 0.87 .73
Widowed 0.71 .22 1.36 .56 0.61 .16
Never married 2.24 .08 1.49 .66 2.56 .10
Income
<$20,000 1.54 .19 2.26 .13 1.35 .52
$20,000-$39,999 1.15 .57 1.66 .16 0.78 .50
$40,000-$74,999 1.15 .54 1.10 .78 1.14 .70
$75,000 or more (ref) — — — — — —
Cancer stage
In situ (bladder only) 0.43 .22 0.52 .41 0.13 .23
Localized (ref) — — — — — —
Regional 1.00 .99 1.21 .60 1.02 .95
Distant 1.45 .63 0.81 .85 3.02 .36
Years since cancer diagnosis
3 y (ref) — — — — — —
6 y 0.94 .75 0.92 .78 0.94 .84
11 y 0.67 .05 0.82 .54 0.46 .01
Cancer treatment received{
Surgery 0.81 .51 1.04 .91 0.27 .07
Chemotherapy 1.07 .72 1.03 .93 0.96 .87
Radiation therapy 1.33 .15 1.58 .13 1.16 .61
Hormonal therapy 1.62 .04 1.42 .37 1.71 .09
Immunotherapy 0.75 .30 0.65 .34 0.86 .71
SF-36
Mental health 0.97 .006 0.97 .06 0.97 .02Physical health 0.97 .003 0.98 .16 0.97 .02
Boldface indicates P < .05.
OR indicates odds ratio; ref, reference group; SF-36, MOS 36-item short-form health survey.
* Sex (for the full model), employment, and cancer type were controlled for in all multivariate models;
however, as they were not significant (P > .05) in any of the models, they are not shown in the tables.y Not equal to 778 because of missing values.{ Treatment could be ongoing or completed.
TABLE 4Multivariate Regression Models (Coefficients) Predicting Quality ofInformation Received
AllRespondents
(N5439)yMen Only
(n5199)
Women Only
(n5240)
Predictors* b P b P b P
Age, y
54 or younger 2.255 .30 2.638 .16 .024 .95
55-64 2.199 .31 2.195 .52 2.059 .85
65-74 2.119 .50 2.089 .72 2.133 .65
75 or older (ref) — — — — — —
Race
White (ref) — — — — — —
Black 2.363 .09 .012 .97 2.690 .03
Hispanic .062 .79 2.301 .50 .133 .66
Other .245 .46 .298 .49 2.046 .94
Education
Less than high school .022 .92 2.268 .41 .202 .53
High school graduate .145 .36 .225 .37 .184 .40
Some college .101 .52 2.050 .84 .185 .40
College graduate (ref) — — — — — —
Marital status
Married (ref) — — — — — —
Separate or divorced .029 .89 .212 .53 2.061 .83
Widowed 2.014 .95 .202 .57 2.134 .64
Never married .041 .86 .199 .70 .029 .92
Income
<$20,000 2.186 .42 2.089 .80 2.140 .67
$20,000-$39,999 2.059 .73 2.046 .86 .150 .56
$40,000-$74,999 2.260 .09 2.340 .16 2.091 .68
$75,000 or more (ref) — — — — — —
Cancer stage
In situ (bladder only) 2.725 .13 21.190 .04 .948 .42
Localized (ref) — — — — — —
Regional .208 .16 .287 .25 .166 .42
Distant .199 .68 2.246 .78 .283 .65
Years since cancer diagnosis
3 y (ref) — — — — — —
6 y 2.211 .11 2.476 .02 .054 .77
11 y 2.089 .56 2.059 .81 2.092 .67
Cancer treatment received{
Surgery 2.152 .46 2.070 .80 2.358 .38
Chemotherapy .079 .54 .022 .92 .110 .55
Radiation therapy 2.047 .72 2.086 .68 .058 .76
Hormonal therapy .216 .16 .065 .80 .358 .09
Immunotherapy .161 .41 .060 .85 .303 .26
SF-36
Mental health .029 <.001 .030 .005 .028 .002Physical health .024 <.001 .026 .01 .024 .004
Boldface indicates P < .05.
ref indicates reference group; SF-36, MOS 36-item short-form health survey.
* Sex (for the full model), employment, and cancer type were controlled for in all multivariate models;
however, as they were not significant (P > .05) in any of the models, they are not shown in the tables.y Not equal to 778 because of missing values.{ Treatment could be ongoing or completed.
1476 CANCER September 15, 2008 / Volume 113 / Number 6
gate their poorer health, but also increase the difficulty
that survivors have getting and understanding informa-
tion. Making phone calls, searching for online informa-
tion, and distinguishing between more and less useful
information, for example, may be daunting to survivors
who are physically weakened, or have symptoms of
depression or anxiety. Alternatively, poorer health itself
may cause negative attitudes about many aspects of
life, including the quality of health-related information.
Black race was also associated with worse infor-
mation outcomes. Blacks indicate more barriers to
cancer information (among men), and give lower rat-
ings to information quality (among women). Hispa-
nics also experienced greater information barriers; it
lacked significance, but that may simply reflect the
small number of Hispanics in our study. The finding
that black survivors perceived worse access to, and
worse quality of, cancer information is concerning,
given research suggesting that clinical quality of care
and survival rates for some cancers are worse for
blacks compared with whites.28 Additional efforts
may be needed to ensure that health information is
readily available, culturally appropriate, and under-
standable to all racial/ethnic groups.
Our finding that lower-income survivors perceive
more barriers to cancer information merits attention,
because socioeconomic status is linked to worse can-
cer survival rates.29 Compared with patients with
higher incomes, poorer patients may ask fewer ques-
tions of their physicians. Alternatively, barriers to in-
formation among poorer survivors may reflect less
Internet access,30 contradicting expectations that the
Internet would help reduce disparities in healthcare
access and outcomes.31
We found important sex differences. For exam-
ple, older age was associated with less need for infor-
mation only in women, and in situ bladder cancer
was associated with lower information quality ratings
only in men. For older female survivors, cancer may
be 1 of many important concerns including other
TABLE 5Multivariate Regression Models (Coefficients) PredictingInformation Barriers
All
Respondents
(N5649)yMen Only
(n5310)
Women Only
(n5339)
Predictors* b P b P b P
Age, y
54 or younger .052 .61 .189 .30 2.029 .84
55-64 .059 .46 .167 .17 .001 .99
65-74 .074 .29 .099 .29 .044 .70
75 or older (ref) — — — — — —
Race
White (ref) — — — — — —
Black .265 .004 .351 .009 .212 .11
Hispanic .187 .10 .201 .34 .235 .09
Other 2.249 .09 2.112 .58 2.310 .17
Education
Less than high school 2.207 .02 2.094 .46 2.357 .007High school graduate 2.116 .07 2.050 .63 2.144 .10
Some college 2.030 .65 .029 .76 2.054 .57
College graduate (ref) — — — — — —
Marital status
Married (ref) — — — — — —
Separate or divorced .004 .96 2.113 .40 .104 .37
Widowed 2.074 .37 2.021 .88 2.073 .48
Never married 2.206 .05 2.045 .84 2.201 .11
Income
<$20,000 .302 .001 .274 .06 .286 .03
$20,000-$39,999 .035 .61 .046 .66 2.037 .72
$40,000-$74,999 .051 .43 .009 .93 .058 .52
$75,000 or more (ref) — — — — — —
Cancer Stage
In situ (bladder only) .163 .41 .109 .64 .516 .26
Localized (ref) — — — — — —
Regional .049 .45 .045 .67 .063 .47
Distant .492 .01 .367 .26 .624 .02
Years since cancer diagnosis
3 y (ref) — — — — — —
6 y .004 .95 .005 .95 .046 .56
11 y 2.105 .09 2.058 .54 2.099 .25
Cancer treatment received{
Surgery 2.102 .26 2.041 .74 2.171 .30
Chemotherapy 2.038 .50 2.006 .95 2.039 .62
Radiation therapy 2.004 .95 .059 .50 2.041 .61
Hormonal therapy .063 .35 2.123 .27 .115 .20
Immunotherapy 2.068 .41 .110 .39 2.204 .08
SF-36
Mental health 2.012 <.001 2.013 .003 2.012 .002Physical health 2.010 <.001 2.015 <.001 2.007 .04
Boldface indicates P < .05.
ref indicates reference group; SF-36, MOS 36-item short-form health survey.
* Gender (for the full model), employment, and cancer type were controlled for in all multivariate models;
however, as they were not significant (P>.05) in any of the models, they are not shown in the tables.y Not equal to 778 due to missing values.{ Treatment could be ongoing or completed.
TABLE 6Pearson Correlations Between CAHPS Scores and Rating of Careand Information
CAHPS-6 Rating of Care
Predictors Correlations P Correlations P
Information quality scale 0.50 <.001 0.45 <.001Information barrier scale 20.28 <.001 20.24 <.001Need information 20.08 .08 20.12 .007
Boldface indicates P < .05.
CAHPS indicates Consumer Assessment of Healthcare Providers and Systems.
Cancer Survivors’ Information Perception/McInnes et al 1477
health conditions, financing retirement, or caring for
a spouse/partner in failing health.32
Greater elapsed time since diagnosis was asso-
ciated in men with worse ratings of information
quality, possibly reflecting diminishing contacts that
male survivors have with their physicians after initial
treatments. If men are more reliant than women on
their physicians (compared with the Web, family
members, etc.) for cancer information, then these
lower ratings may represent lost opportunities to
receive information from their physicians. In women
greater time since diagnosis was associated with less
need for information. Such survivors may believe
that they are doing relatively well, having survived
over a decade. Also, many would have obtained
extensive information immediately after diagnosis
and may believe they sufficiently understand their
cancer. Many would no longer be in treatment, thus
minimizing the need for information about treat-
ments and side effects.
A limitation of our study is the potential for bias
because of differences in likelihood of participat-
ion across certain demographic groups. Specifically,
respondents were younger when diagnosed, more
recently diagnosed, more likely to be white, and less
likely to have colorectal cancer than nonrespondents.
Thus, the results might not generalize to all Massachu-
setts cancer survivors. However, the younger, more
white population we surveyed probably resulted in less
variation in perceptions of cancer information, and
thus, if we had a more representative sample of
respondents, the differences we observed might have
been even more pronounced. The study’s cross-sec-
tional design means causal inferences are not possible.
Finally, our clinical cancer variables were limited to
stage at diagnosis, type of cancer, and type of treat-
ment received. Because our study was exploratory in
nature, we did not adjust nominal significance levels to
account for the multiple tests conducted.
In conclusion, healthcare providers and systems
are meeting the information needs of many cancer
survivors, including providing information perceived
as good quality. A substantial minority of survivors,
however, lack sufficient cancer-related information,
and are unsatisfied with its quality. With growing evi-
dence that well-informed patients are more satisfied
with their care, and do better clinically, efforts are
needed to improve the content and delivery of can-
cer-related information to survivors. Our findings
suggest that emphasis be given to improving the
quality of, and reducing barriers to, information for
traditionally vulnerable groups, including survivors
who are poor, are racial minorities, or have impaired
physical and/or mental functioning. In addition,
efforts should be made to understand the differences
by sex in needs for, perceptions of, and barriers to
cancer information, and to tailor information appro-
priately.
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