perceptions of cancer-related information among cancer survivors: a report from the american cancer...

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Perceptions of Cancer-related Information Among Cancer Survivors A Report From the American Cancer Society’s Studies of Cancer Survivors D. Keith McInnes, ScD, MS 1,2,3 Paul D. Cleary, PhD 4 Kevin D. Stein, PhD 5 Lin Ding, PhD 1 C. Christina Mehta, MSPH 6 John Z. Ayanian, MD, MPP 1,7 1 Department of Health Care Policy, Harvard Medical 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 for Health Quality, Outcomes, and Economic Research, Bedford, Massachusetts. 4 Yale School of Public Health, Yale School of Medicine, New Haven, Connecticut. 5 Behavioral Research Center, American Cancer Society, Atlanta, Georgia. 6 Statistics and Evaluation Center, American Can- cer Society, Atlanta, Georgia. 7 Division of General Internal Medicine, Brigham and 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. Ó 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 of the American Cancer Society and the Improving Cancer Care in Massachusetts (CAMA) project of the Dana-Farber/Harvard Cancer Center. We thank the Massachusetts Department of Pub- lic Health, Massachusetts Cancer Registry for their help in acquiring data used in this study. Carol Lowenstein provided valuable insights into cancer registry procedures. Address for reprints: John Z. Ayanian, MD, MPP, Harvard Medical School, Department of Health Care Policy, 180 Longwood Ave, Boston, MA 02115; Fax: (617) 432-0173; E-mail: ayanian@ hcp.med.harvard.edu Received November 2, 2007; revision received March 11, 2008; accepted April 14, 2008. ª 2008 American Cancer Society DOI 10.1002/cncr.23713 Published online 29 July 2008 in Wiley InterScience (www.interscience.wiley.com). 1471

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Page 1: Perceptions of cancer-related information among cancer survivors: A report from the American Cancer Society's Studies of Cancer Survivors

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

Page 2: Perceptions of cancer-related information among cancer survivors: A report from the American Cancer Society's Studies of Cancer Survivors

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

Page 3: Perceptions of cancer-related information among cancer survivors: A report from the American Cancer Society's Studies of Cancer Survivors

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

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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

Page 5: Perceptions of cancer-related information among cancer survivors: A report from the American Cancer Society's Studies of Cancer Survivors

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

Page 6: Perceptions of cancer-related information among cancer survivors: A report from the American Cancer Society's Studies of Cancer Survivors

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

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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

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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.

REFERENCES1. Viswanath K, Breen N, Meissner H, et al. Cancer knowledge

and disparities in the information age. J Health Commun.

2006;11(suppl 1):1-17.

2. Nelson DE, Kreps GL, Hesse BW, et al. The Health Informa-

tion National Trends Survey (HINTS): development, design,

and dissemination. J Health Commun. 2004;9:443-460; dis-

cussion 81-84.

3. Jones R, Pearson J, McGregor S, et al. Cross sectional sur-

vey of patients’ satisfaction with information about cancer.

BMJ. 1999;319:1247-1248.

4. Institute of Medicine. Ensuring Quality Cancer Care. Hewitt

M, Simone JV, eds. Washington, DC: National Academy

Press; 1999.

5. Institute of Medicine, National Research Council. From

Cancer Patient To Cancer Survivor. Hewitt M, Greenfield S,

Stovall E, eds. Washington, DC: National Academies Press;

2006.

6. Ramanadhan S, Viswanath K. Health and the information

nonseeker: a profile. Health Commun. 2006;20:131-139.

7. Mayer DK, Terrin NC, Kreps GL, et al. Cancer survivors in-

formation seeking behaviors: a comparison of survivors

who do and do not seek information about cancer. Patient

Educ Couns. 2007;65:342-350.

8. Arora NK, Hesse BW, Rimer BK, Viswanath K, Clayman ML,

Croyle RT. Frustrated and confused: the American public

rates its cancer-related information-seeking experiences. J

Gen Intern Med. 2008;23:223-228.

9. Ong LM, de Haes JC, Hoos AM, Lammes FB. Doctor-

patient communication: a review of the literature. Soc Sci

Med. 1995;40:903-918.

10. Roter DL. Which facets of communication have a strong

effect on outcome—a meta-analysis. In: Stewart M, Roter

DL, eds. Communicating With Medical Patients. Newbury

Park, CA: Sage; 1989:183-196.

11. Gustafson DH, Helstad CP, Hung CF, Nelson G, Batalden P.

The total costs of illness: a metric for health care reform.

Hosp Health Serv Adm. 1995;40:154-171.

12. Hiatt RA, Rimer BK. A new strategy for cancer control

research. Cancer Epidemiol Biomarkers Prev. 1999;8:957-964.

13. Bandura A. Self-efficacy: toward a unifying theory of be-

havioral change. Psychol Rev. 1977;84:191-215.

14. Lin CC. Comparison of the effects of perceived self-efficacy

on coping with chronic cancer pain and coping with

chronic low back pain. Clin J Pain. 1998;14:303-310.

15. Beckham JC, Burker EJ, Lytle BL, Feldman ME, Costakis

MJ. Self-efficacy and adjustment in cancer patients: a pre-

liminary report. Behav Med. 1997;23:138-142.

16. Ayanian JZ, Zaslavsky AM, Guadagnoli E, et al. Patients’

perceptions of quality of care for colorectal cancer by race,

ethnicity, and language. J Clin Oncol. 2005;23:6576-6586.

17. Jenkins V, Fallowfield L, Saul J. Information needs of

patients with cancer: results from a large study in UK can-

cer centres. Br J Cancer 2001;84:48-51.

18. Rutten LJ, Arora NK, Bakos AD, Aziz N, Rowland J. Infor-

mation needs and sources of information among cancer

patients: a systematic review of research (1980-2003).

Patient Educ Couns. 2005;57:250-261.

1478 CANCER September 15, 2008 / Volume 113 / Number 6

Page 9: Perceptions of cancer-related information among cancer survivors: A report from the American Cancer Society's Studies of Cancer Survivors

19. Arora NK, Johnson P, Gustafson DH, McTavish F, Hawkins

RP, Pingree S. Barriers to information access, perceived

health competence, and psychosocial health outcomes:

test of a mediation model in a breast cancer sample.

Patient Educ Couns. 2002;47:37-46.

20. Feldman-Stewart D, Brundage MD, Nickel JC, MacKillop

WJ. The information required by patients with early-stage

prostate cancer in choosing their treatment. BJU Int. 2001;

87:218-223.

21. Smith T, Stein KD, Mehta CC, et al. The rationale, design,

and implementation of the American Cancer Society’s stu-

dies of cancer survivors. Cancer. 2007;109:1-12.

22. Young JLJ, Roffers SD, Ries LAG, Fritz AG, Hurlbut AA.

SEER Summary Staging Manual – 2000: Codes And Coding

Instructions. Bethesda, MD: National Cancer Institute;

2001.

23. Stein K, Smith T, Kim Y, et al. The American Cancer

Society’s studies of cancer survivors. Cancer Nurs. 2006;29

(2 suppl):83-85.

24. Arora N. Are cancer survivors receiving adequate commu-

nication about medical tests and symptom management

from their follow-up care physicians? Psychooncology. 2007;

16:S23.

25. Ware JE Jr, Sherbourne CD. The MOS 36-item short-form

health survey (SF-36). I. Conceptual framework and item

selection. Med Care. 1992;30:473-483.

26. Hays RD, Shaul JA, Williams VS, et al. Psychometric prop-

erties of the CAHPS 1.0 survey measures. Consumer assess-

ment of health plans study. Med Care. 1999;37(3 suppl):

MS22-MS31.

27. Little RJA, Rubin DB. Statistical Analysis With Missing

Data. 2nd ed. New York, NY: Wiley; 2002.

28. Hodgson DC, Fuchs CS, Ayanian JZ. Impact of patient and

provider characteristics on the treatment and outcomes of

colorectal cancer. J Natl Cancer Inst. 2001;93:501-515.

29. Goodwin JS, Samet JM, Hunt WC. Determinants of survival in

older cancer patients. J Natl Cancer Inst. 1996;88:1031-1038.

30. Department of Commerce. Falling Through The Net: To-

ward Digital Inclusion. Washington, DC: US Department of

Commerce; 2000.

31. Eng TR, Maxfield A, Patrick K, Deering MJ, Ratzan SC, Gus-

tafson DH. Access to health information and support: a pub-

lic highway or a private road? JAMA. 1998;280:1371-1375.

32. Won CW, Fitts SS, Favaro S, Olsen P, Phelan EA. Commu-

nity-based ‘‘powerful tools’’ intervention enhances health

of caregivers. Arch Gerontol Geriatr. 2008;46:89-100.

Cancer Survivors’ Information Perception/McInnes et al 1479