Use of the Internet to Obtain Cancer Information Among Cancer Patients at an Urban County Hospital
http://www.100md.com
《临床肿瘤学》
the Departments of Medicine and Biostatistics, Division of Hematology/Oncology, the Indiana University Cancer Center
the Regenstrief Institute for Health Care
the Indiana University Center for Bioethics, Indiana University School of Medicine, Indianapolis, IN
the Fairbanks Center for Medical Ethics, and the Department of Medicine, Section of Hematology/Oncology, and the MacLean Center for Clinical Medical Ethics, University of Chicago, Chicago, IL
ABSTRACT
PURPOSE: To evaluate rates, predictors, and barriers to use of the Internet to obtain cancer information among a cohort of cancer patients at an urban county hospital.
PATIENTS AND METHODS: Of 208 cancer patients approached, 200 patients completed a structured interview study examining Internet use, perceptions of the accuracy of Internet information, and barriers to use.
RESULTS: Only 10% of participants reported using the Internet themselves to obtain cancer information. Another 21% reported exposure to Internet information through proxies. The most common barrier to Internet use cited was lack of Internet access, with 44% reporting that they would use the Internet to obtain cancer information if they had Internet access. Younger age and more years of formal education were significantly associated with Internet use, although race and income were not. Less education, African American race, and female sex were associated with lower estimates of the accuracy of Internet information. Fewer years of formal education was associated with increased likelihood of reporting confusion after reading Internet information.
CONCLUSION: Very few cancer patients in this study of a cohort of generally disadvantaged individuals used the Internet themselves to obtain cancer information, although many more desired to do so. Significant opportunities for Web-based interventions aimed at improving cancer care outcomes in this population of cancer patients exist. However, further study will be needed to determine how to make such intervention accessible, trustworthy, and understandable to the disadvantaged.
INTRODUCTION
Estimates of the proportion of Americans using the Internet for health information range from 40% to 80% of all Internet users, or approximately 93 million Americans.1,2 It is estimated that, on an average day, 5.5 million Americans go online to search for health information.3 The Internet seems to be playing an increasingly significant and direct role in patients’ health care as well. Eleven million Americans who helped a family member deal with an illness in the past 2 years say their use of the Internet played a crucial or important role in their aid to another person. More than 4 million Americans say the Internet helped them cope with their own struggle with a major illness in the past 2 years.3 More than half of all those who have used the Internet to access health information report that it has improved the way they obtain health information, and almost half (41%) of users report that the information they found has affected a health care decision.3 Although it is likely that the widespread use of the Internet is having significant effects on patients, which patient populations are more likely to use, and be affected by, the Internet remains a subject of active investigation.
Socioeconomically disadvantaged populations, including those with cancer, are faced with significant disparities with regard to health care access and outcomes. There is emerging evidence of a socioeconomic gap in access to information on the Internet. This gap in access and use of the Internet has been called the digital divide. Approximately 42% of households earning $50,000 dollars or more per year have been reported as having Internet access, compared with 17% of households earning less than $30,000 dollars per year, although one recent study suggested that as many of 36% of people living in low-income households (less than $30,000 dollars/year) use the Internet.4 Nearly 65% of college graduates have home Internet access, but only 11.7% of households headed by persons with less than a high school education have Internet access.5 Within households below the median income for American households, African-Americans are less than half as likely as whites to have a computer at home.5 Nicholson’s study of health information resources found that black women were 60% less likely than white women to use computer-based resources.6
Recent studies suggest that though the digital divide is closing in some patient populations, there remain significant disparities in access to and use of the Internet. In a systematically sampled population of inner city patients at three urban primary care clinics, Dickerson found that 33% of patients had used the Internet within the past year to search for health information. In this study, black patients were 44% less likely than white patients to use the Internet. Those patients who had attended some college were 4.3 times more likely to have used the Internet than less educated patients.7 Robinson examined 152 patients in outpatient general medicine clinics in Los Angeles and found that only 20% of patients in this cohort study had Internet access and only 5% of patients had used the Internet to search for health information.8
With specific regard to cancer patients, there is relatively little information describing the effects of Internet information. Estimates of the proportion of cancer patients using the Internet range from 8% (among patients at a Veterans Affairs Research Service hospital) to 50% (at a Canadian urban academic referral center).9-14 We have previously found that American oncologists estimate that approximately 30% of their cancer patients use the Internet to obtain cancer information,15 an estimate confirmed by Eysenbach in his comprehensive review of published studies on this topic.16
Although recent studies have begun to document Internet use among cancer patients, few published studies have specifically examined Internet use and the barriers to use among disadvantaged patients. To gauge the frequency and effects of Internet use among such a population of patients, we conducted a structured interview study of a convenience sample of cancer patients in an urban public hospital. Wishard Memorial Hospital (WMH) is located near the center of downtown Indianapolis, a city of nearly 900,000 residents, and serves as the county hospital for the merged city-county metropolitan area. The oncology clinic at WMH serves a stable and ethnically diverse inner-city population that is made up mostly of socially and/or economically disadvantaged individuals. Fewer than 5% of WMH patients have private insurance, and approximately two thirds of patients have a publicly funded form of indigent care insurance, such as Medicaid.
This study was approved by the institutional review board of Indiana University. All patients participated anonymously and gave their oral informed consent to participate. Here we report results from this structured interview study of 200 patients.
PATIENTS AND METHODS
Participants
Participants were selected by convenience sampling from the WMH Oncology Specialty Outpatient Clinic at the time of a new or established patient visit. Efforts were made to approach every patient entering the clinic on a given day who had not previously been approached for participation. This continued until the target goal of 200 interviewed patients was completed. Patients were approached in clinic or in the chemotherapy infusion area by a research assistant and their willingness to participate in the study was assessed using a scripted dialogue. Eligible subjects included patients 18 years of age who could communicate sufficiently in English and who were neither medically nor mentally impaired sufficiently to prohibit participation. Subjects were asked for oral informed consent to participate in this study using a scripted dialogue and were interviewed immediately after consent. Subjects were told that all answers would be kept confidential and would not affect their care in any way.
Interview, Interviewer, and Survey Instruments
Interview. Information was obtained from patients via a structured, face-to-face interview lasting 15 to 20 minutes. The survey was developed by the investigators and some questions were adapted from prior studies.13-15 During the interview, all questions were read from a standardized survey form. Patients’ responses were hand written on the survey form by the research assistant. Numerical codes were assigned to the handwritten responses, and the responses were entered into a database created by the investigators in the form of an Excel spreadsheet.
Interviewers. One interviewer held a Bachelor’s degree with training in medical ethics. The second interviewer was an oncology nurse and held a juris doctor. Both interviewers had prior experience obtaining medical histories and conducting surveys of cancer patients and underwent ongoing training by the principal investigator (P.R.H.) in interview techniques.
Survey Instruments. All survey questions were developed by the investigators or adapted from prior studies. A pilot version of the survey was administered to 18 patients from the same oncology clinic. Results and experience were used to refine some questions to improve understanding of the questions. Information obtained from patients included sociodemographic and cancer-specific clinical information. Estimates of income were made using the median income for the zip code in which each patient resided. Survey questions addressed access to computers and to the Internet, exposure to Internet information through proxies, and attempted to identify barriers to computer and Internet use. Patients were asked as a true/false question whether they would like to read information about cancer on the Internet if they had access to the Internet.
Self-described Internet users were also given choices as to why they used the Internet to obtain cancer information. Internet users were provided with several response categories describing types of information they had sought on the Internet, and were given an opportunity to include others of their own choosing. These included treatment options, general information about cancer, nutrition and cancer, alternative therapies, ways to live with cancer, and news articles about research and treatment. Other questions addressed patients’ estimates of the accuracy of Internet information. Internet users were asked whether they had ever discussed Internet information with their doctors. We asked if patients had ever felt more hopeful, anxious, or confused after reading Internet information. The selection of these outcomes was based on prior pilot work suggesting that these outcomes were commonly cited by patients who read cancer information on the Internet.13
We examined participants’ preferences both for information and for participation in medical decision making. Information preferences were examined in two ways. We used a Likert scale asking patients to rate their desire for information about their disease with 1 being no more detail than is needed and 7 being as many details as possible. We additionally assessed information preferences by asking participants to select among three statements describing information preferences: "I want only the information needed to take care of myself properly," "I want additional information only if it is good news," and "I want as much information as possible, good or bad." Finally, we examined participants’ preferences for involvement in medical decisions by asking them which model best describes their decision-making style: doctor-centered, shared, or patient-centered, using a question adapted from Llewelyn-Thomas.17 The interview text may be found in the appendix.
Statistical Methods
T-tests were performed to test for an association of continuous variables with use of the Internet to obtain cancer information. 2 tests were conducted to examine the association between categoric variables and Internet use. If any expected cell sizes were less than 5, Fisher’s exact tests were conducted instead of 2 tests. A multivariable logistic regression analysis was done to investigate the association of demographic and diagnosis variables on Internet use. Missing data were excluded from the analysis.
RESULTS
Two hundred eight patients were approached for participation in the study and 200 patients completed the interview (96%). Eight patients (4%) refused, with the most common reason being not feeling well enough to participate. Participants were recruited from a general oncology clinic and a breast oncology clinic. Demographics for participants are shown in Table 1. The median age for participants was 57 years. Because breast cancer patients at WMH are cared for in a separate, dedicated clinic, a higher proportion of women were recruited to this study than would have been expected by chance (65%). Nearly half of patients had less than a high school degree. Nearly three quarters of patients had either lung, breast, or colon cancer.
Internet Use
Ten percent of study participants reported using the Internet themselves to search for cancer information (users). Twenty-one percent of those participants who did not use the Internet themselves to obtain cancer information reported that proxies (friends or family, most commonly) occasionally provided them with Internet information. Table 2 lists subjects’ reports of the type of information sought on the Internet. The most common type of information obtained was treatment options. Table 3 lists the most common reasons Internet users cited for using the Internet. Understanding their disease better was the most common response.
Overall, interviewed participants felt that Internet information was accurate. On a Likert scale of one to seven, with seven being most accurate and one being least accurate, the mean estimate of the accuracy of Internet cancer information among users was 5.6.
All subjects were asked whether they did or did not use a computer. Among nonusers of the Internet, 29% of participants had access to a computer and 21% of participants had access to the Internet. Nonusers of the Internet were asked why they did not use the Internet. Table 4 lists these reasons. The most common reason cited was lack of computer access followed closely by lack of interest. Forty-four percent of nonusers said they would read more about their cancer if they had a way to use the Internet.
Both age and education were significantly associated with Internet use. Self-described Internet users tended to be younger than nonusers (49 years v 57 years; P = .0043) and were more likely to be high school graduates (95% v 54%; P = .0003). There was no association between cancer diagnosis, sex, race, income (based on zip code information), or marital status and likelihood of using the Internet to obtain cancer information. Despite the differences in use of the Internet, users and nonusers reported equal interest in having more information about their disease (P = .4736). Among users, only 40% of participants had shared information they had obtained from the Internet with their doctors.
Sixty-two percent of users reported that Internet information had made them feel more hopeful about their disease. One third (33%) of participants reported feeling more confused after reading Internet information, and nearly one quarter (24%) reported feeling more nervous, anxious, or upset. Of the 31% of participants exposed to Internet information either through their own use or through proxy exposure, only 5% reported that Internet information had swayed a decision they had made about treatment. However, 52% reported that they had learned about new treatments from the Internet and 38% reported learning about clinical trials from the Internet.
Several multivariate analyses were performed to test for associations among demographic and disease variables and Internet use. Internet use was significantly associated only with younger age (odds ratio, 0.94; 95% CI, 0.90 to 0.98) and increasing years of education (odds ratio, 2.86; 95% CI, 1.53 to 5.36). Within our interviewed population, there was no association between likelihood of using the Internet and income (P = .9792). More educated patients were more likely to believe that information obtained on the Internet was accurate (r = 0.0417; P = .05). Of the five Internet users who had a college degree or higher, all estimated the accuracy of Internet information to be 6 or 7 of 7. Both sex and race were significantly associated with a lower estimate of the overall accuracy of Internet information. Women had a mean estimate of 5.38 (P = .0494), and African-Americans had a mean estimate of 4.60 (P = .0310).
Only fewer years of formal education was significantly associated with increased likelihood of reporting confusion after exposure to Internet information (P = .0352). No tested demographic variable was associated with reporting increased hopefulness or anxiety after exposure to Internet information. No examined demographic variables were associated with the likelihood of discussing Internet information with one’s doctors.
There was no difference in the mean scores for information preferences between Internet users and nonusers both using a 7-point Likert scale and in the qualitative question examining information preferences (6.6 v 6.3, P = .47). There were no differences between Internet users and nonusers with respect to decision making preferences (P = .86).
DISCUSSION
The use of the Internet to obtain health information has become a widespread phenomenon among individuals seeking medical care, with millions of individuals going online each day to find medical information. Studies of Internet use among cancer patients suggest that 30% to 40% of patients seek information about their cancers from the Internet,12,15,16 although in socioeconomically disadvantaged populations, such as within a Veterans Affairs Research Service hospital, there is evidence that the proportion of Internet health information seekers is lower.9 Few published studies have specifically examined use and desire for use of the Internet to obtain health information among large cohorts of exclusively disadvantaged cancer patients. Thus, this is the first study of Internet use among disadvantaged cancer patients outside of a Veterans Affairs Research Service setting.
Overall, only 10% of disadvantaged patients in this cohort used the Internet to obtain cancer information themselves. As might be predicted, this rate of self-use is low compared with rates of use in populations of cancer patients not restricted to socioeconomically disadvantaged patients.12,14 Another 21% of our cohort of patients obtained Internet information through proxies. We are unable to draw conclusions about the differential effects of self-obtained versus proxy-provided Internet information because they were not specifically explored in the survey. The only other published study of rates of use among cancer patients and proxies found that 44% of patients in the cohort and 60% of companions used the Internet for cancer information. However, this study was performed in a large, urban, academic referral center and probably reflects very different patient demographics than our cohort.12 Nonusers were nearly equally split with respect to using the Internet to obtain cancer information if given the opportunity: 44% of nonusers reported that they would be interested in using the Internet to obtain information about cancer if they had access to the Internet, and 49% of patients responded that they were not interested. Our results suggest that efforts to provide Internet access to disadvantaged patients are appropriate and may be welcomed by a substantial proportion of patients. However, these findings obviously suggest that interventions that attempt to provide Web-based information to cancer patients should take patients’ preferences for format of information into account. Notably, we found no differences between Internet users’ and nonusers’ preferences for information or for style of decision making, raising questions about the information needs of patients who were not interested in using the Internet for cancer information: Are their information needs already being met through other means? Are they intimidated by or suspicious of Internet information? We are in the process of exploring this finding further in qualitative studies among a similar group of patients. Finally, although only 5% of study participants reported that Internet information had directly influenced a medical decision, other possible effects of Internet information, such as satisfaction with disease information and communication with members of the care team and with health care services, were not explored. Effects on these patient-centered outcomes, including decision making, should be further explored.
The most common barrier to seeking online cancer information cited by participants was not having access to a computer. Our results are similar to at least one other study of oncology patients, in which 60% of nonusers said lack of access was barrier.18 Only 18% of patients selected cost from a list of barriers to Internet use.
In this cohort of socioeconomically disadvantaged cancer patients, only younger age and more years of formal education were associated with Internet use for cancer information, similar to other studies; however, race and income were not.1,4 We did not find a statistically significant association between assigned income based on zip code data and Internet use; however, our cohort contained a relatively small number of high income responders and their rates of Internet use were unusually low (data not shown). Several other studies have examined rates and predictors of Internet use among cancer patients. The study by Fogel et al10 of 188 breast cancer patients at a single institution found that higher income and education significantly predicted Internet use. Nonwhites were less likely than whites to use the Internet for health information, but this result was not statistically significant. Monnier et al11 found that among 319 patients and caregivers, black patients were less likely to use the Internet themselves and were less likely to have a family member who used the Internet. The authors also found that Internet use was significantly correlated with education, but the effect of income was not examined. Basch et al12 found that younger age and higher education were associated with the likelihood of using the Internet for cancer information, but the effects of race and income were not examined. The study by Peterson and Fretz19 of 139 patients attending a lung cancer clinic at an academic medical center found that 16% of patients sought information on the Internet, and usage was associated with increased income and education, but the effect of race was not examined. Smith et al9 surveyed 295 patients undergoing radiotherapy for prostate cancer in three settings—an academic medical center, a Veterans Affairs Research Service hospital, and a community hospital—and found that, controlling for access to the Internet, white patients were significantly more likely to use the Internet to search for cancer information than black patients. The effects of education and income were not examined, and the rates of usage among Veterans Affairs patients were so low (8%) as to make conclusions about this specific group of disadvantaged patients difficult. None of these studies examined exclusively disadvantaged cancer patients, and it is possible that the effects of race and income on Internet seeking behaviors in disadvantaged groups of cancer patients is quantitatively less important than in other groups of cancer patients. Confirmation of this finding in other groups of disadvantaged patients is warranted. Further research into the effects of race and other socioeconomic variables on Internet use would help to target future Web-based intervention studies aimed at narrowing the digital divide.
Our data suggest that estimates of the accuracy of Internet information are positively associated with increased education. More years of formal education was significantly associated with increased estimates of accuracy and lower likelihood of reporting confusion as a result of reading Internet information. The reasons why black patients had lower estimates of accuracy than other subgroups were not explored in this study. One hypothesis worthy of exploration is that general suspicion about medical information or toward the medical establishment itself may influence perceptions of the accuracy of Internet medical information. In the end, our findings suggest that, in addition to providing Internet access to those who desire it, disadvantaged cancer patients may benefit from Web-based interventions that address specific issues related to quality, readability, and trustworthiness of Internet information.
Of note, only 40% of Internet users in this study reported sharing the information they found with their doctors within the clinical encounter. In our previous survey study of United States oncologists, survey respondents estimated that approximately one third of patients who sought cancer information on the Internet discussed it in the clinical encounter, a figure similar to the findings in this study of cancer patients.15 The sharing of Internet information clearly represents an opportunity to clear up misunderstandings and false information and may serve as a check on the substantial quantities of misinformation available on the Internet. We cannot determine from this study the precise reasons why patients did or did not share information with their doctors, and no examined sociodemographic or disease variables were associated with this outcome. We have suggested elsewhere that physician-associated variables, such as the perception of threat to authority, may influence a patient’s desire to share information.15 However, patient-associated factors that may inhibit patients from discussing Internet information remain unknown. The reasons why patients do not share information with their oncologists is a phenomenon worthy of further study, and an understanding of the reasons would be vital to any efforts to translate Web-based interventions aimed at patients into clinical care.
We recognize several limitations with our study. Although it is the largest study of use of the Internet conducted wholly among disadvantaged cancer patients performed to date, it was conducted among a convenience sample within a single, inner-city, public hospital located in a large, Midwestern city, and the possibility of cohort bias cannot be excluded. Second, the sample had more females than males, and the possibility that our results were biased by this disparity cannot be excluded. Third, the survey interview as designed did not delve deeply into the effects of Internet information on individual patients’ decisions, clinical care, and satisfaction with health services processes. This is an area of patient-centered outcomes that deeply needs further study, given the many public and private efforts to provide Internet access to medical patients and given the overall growing use of the Internet to obtain health information.
In summary, in this study of disadvantaged cancer patients at an urban, public hospital, very few patients used the Internet themselves to obtain cancer information, although more were exposed to Internet information through proxies. Nearly half of all participating nonusers of the Internet seem to desire such an opportunity. Although providing assisted or filtered Internet information to this population of patients may represent an important strategy to improve their care, a greater understanding of the outcomes and effects of Internet information on patients and on their interactions with health care professionals is still needed.
Authors’ Disclosures of Potential Conflicts of Interest
The authors indicated no potential conflicts of interest.
Appendix 1. Questionnaire
"First, I would like to get some information about you."
1. Patient Number: (Number sequentially) __________
2. Age: _____
3. What is your cancer diagnosis? (What kind of cancer do you have?)
4. How long have you had cancer? Or when were you first diagnosed with cancer?
"Many patients tell us that they are reading information about cancer on the Internet. I’m going to start by asking you some questions about whether you have used the Internet to obtain information about cancer since your diagnosis."
1. Do you have access to a computer?
Yes No
2. Do you have access to the Internet?
Yes No
3. Do you ever use the Internet to get information about your cancer?
Yes No
4. Does anyone else you know ever provide you with Internet information about cancer?
Yes No
5. True or False:
I would like to read information about cancer on the Internet, but I do not have access to a computer or the Internet.
6. On a scale of 1 to 7, how interested are you in reading information about cancer on the Internet? 1 means that you have no interest at all in reading information about cancer on the Internet and 7 means that you have a great deal of interest in reading information about cancer on the Internet.
1 2 3 4 5 6 7
For patients without access to a computer or the Internet
7. "People have many reasons for not using the Internet. Which of the following reasons applies to you?"
__________I have no access to a computer
__________I have a computer, but no access to the Internet
__________I have a computer, but no telephone at home
__________I do not know anything about the Internet
__________I did not know that you could get cancer information on the Internet
__________Too expensive
__________I prefer to get information from my doctor rather than a computer
For Internet users:
8. What types of cancer information do you obtain from the Internet?
__________General information about your type of cancer (eg, what it is, how it is diagnosed, etc.)
__________Treatment options (eg, standard therapies, clinical trials)
__________Ways to cope with cancer (eg, psychosocial support)
__________News reports (eg, news articles about cancer research and treatment)
__________Alternative or complementary therapies
__________Nutrition and cancer
__________Medical journal articles
__________Chat rooms/discussion groups/on-line support groups
__________Financial assistance
__________Other (please explain)
Can you think of any particular Web sites you have visited?
9. People have various reasons for seeing information on the Internet. Why do you look for information on the Internet? (Check all that apply.)
__________To understand the disease better
__________To investigate treatment options
__________To help in coping with my cancer
__________Are there any other reasons? (please explain)
10. On a scale of 1 to 7 where 7 means extremely accurate and 1 means extremely inaccurate, how would you rate the accuracy of information about cancer on the Internet?
1 2 3 4 5 6 7
11. Some people say that they have felt more confused after reading information about cancer on the Internet. On balance, would you say you have ever felt more confused after reading information about cancer on the Internet?
Can you remember an example of this?
12. Have you ever felt more hopeful after reading information about cancer on the Internet?
Yes Don’t know No
12a. Can you remember an example of an Internet piece that increased your level of hope?
12b. What was it about the information that made you feel more hopeful?
Have you ever felt more nervous, anxious or upset after reading information about cancer on the Internet?
Yes Don’t know No
13a. Can you remember an example of an Internet piece that increased your level of anxiety?
13b. What was it about the information that made you feel more nervous or anxious?
14. Have you ever discussed information you have read about cancer on the Internet with your doctors?
YES
a. Why did you discuss this information with your doctors?
b. How did your doctors react when you brought it up?
c. Was discussing the information with your doctors helpful to you?
d. How?
NO
e. Why didn’t you discuss this information with your doctors?
15. Has Internet information influenced any of your decisions about treatment? If so, how?
16. Have you ever learned about new treatments on the Internet?
Yes No
17. Have you ever learned about clinical trials on the Internet?
Yes No
ALTERNATIVES OF CARE
18. Other than the treatment you are:
1) currently receiving
2) going to receive
3) previously received
Do you know of or has anyone ever discussed any other options for treatment of your disease?
DECISION-MAKING PREFERENCE QUESTIONNAIRE
19. After patients have all of the information they need about their illness and possible treatment, some prefer to leave decisions about their treatment up to their doctor, while others prefer to participate in these decisions. Of the following statements that I will read to you, please tell me which best describes the ideal you believe in. I can repeat the statements or show them to your if you wish.
__________The doctor should make the decisions using all that is known about the treatments.
__________The doctor and I should make decisions together on an equal basis.
__________I should make the decisions using all I know or learn about the treatments.
INFORMATION PREFERENCES
Some patients want lots of information about their disease when undergoing treatment and others only want to know a few things. On a scale of 1 to 7, please rate how much information about your disease you like to have. 1 means "no more details than needed" and 7 means "as many details as possible."
1 2 3 4 5 6 7
Please select from the following statements which best describes how much information you prefer to have about your illness.
__________I want only the information needed to take care of myself properly.
__________I want additional information only if it is good news.
__________I want as much information as possible, good and bad.
DEMOGRAPHICS
Gender: __________Male
__________ Female
Race: AfA Ca AsA HA Other
Birth date: _______/_______/_______
Education: Number years of school
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24
Marital Status:
Single Married Divorced
Single with partner Separated Widowed
What is or what was your most recent occupation?
Where were you born? __________
Current zip code? __________
NOTES
Supported by a Young Investigator Award from the American Society of Clinical Oncology (P.R.H.).
Authors’ disclosures of potential conflicts of interest are found at the end of this article.
REFERENCES
Fox S, Fallows D: Health searches and e-mail have become more commonplace, but there is room for improvement in searches and overall Internet access. Pew Internet and American Life Project Online Report: July 16, 2003. http://www.pewinternet.org/pdfs/PIP_Health_Report_July_2003.pdf
Baker L, Wagner TH, Singer S, et al: Use of the Internet and e-mail for health care information: Results from a national survey. JAMA 289:2400-2406, 2003
Fox S, Rainie L, Horrigan J, et. al: The online health care revolution: How the web helps Americans take better care of themselves. Pew Internet and American Life Project Online Report: November 26, 2000. http://www.pewinternet.org/pdfs/PIP_Health_Report.pdf
National Library of Medicine: National Library of Medicine to work with public libraries to help consumers find answers to medical questions. National Library of Medicine, October 22, 1998. http://www.nlm.nih.gov/news/press_releases/medplus.html
Digital Divide Network: Digital Divide Basics Fact Sheet, 2004. http://www.digitaldividenetwork.org/content/stories/index.cfm?key=168
Nicholson WK, Grason HA, Powe NR: The relationship of race to women’s use of health information resources. Am J Obstet Gynecol 188:580-585, 2003
Dickerson S, Reinhart AM, Feeley TH, et al: Patient internet use for health information at three urban primary care clinics. J Am Med Inform Assoc 11:499-504, 2004
Robinson C, Flowers CW, Alperson BL, et al: Internet access and use among disadvantaged inner-city patients. JAMA 281:988-989, 1999
Smith RP, Devine P, Jones H, et al: Internet use by patients with prostate cancer undergoing radiotherapy. Urology 62:273-277, 2003
Fogel J, Albert SM, Schnabel F, et al: Use of the Internet by women with breast cancer. J Med Internet Res 4:E9, 2002
Monnier J, Laken M, Carter CL: Patient and caregiver interest in Internet-based cancer services. Cancer Practice 10:305-310, 2002
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Llewllyn-Thomas HA, McGreal J, Thiel EC: The effects of framing information about short-term toxicity and long-term survival. Med Decis Making 15:4-12, 1995
Ziebland S, Chapple A, Dumelow C, et al: How the Internet affects patients’ experience of cancer: A qualitative study. BMJ 328:564, 2004
Peterson MW, Fretz PC: Patient use of the Internet for information in a lung cancer clinic. Chest 123:452-457, 2003(Paul R. Helft, Rachael E.)
the Regenstrief Institute for Health Care
the Indiana University Center for Bioethics, Indiana University School of Medicine, Indianapolis, IN
the Fairbanks Center for Medical Ethics, and the Department of Medicine, Section of Hematology/Oncology, and the MacLean Center for Clinical Medical Ethics, University of Chicago, Chicago, IL
ABSTRACT
PURPOSE: To evaluate rates, predictors, and barriers to use of the Internet to obtain cancer information among a cohort of cancer patients at an urban county hospital.
PATIENTS AND METHODS: Of 208 cancer patients approached, 200 patients completed a structured interview study examining Internet use, perceptions of the accuracy of Internet information, and barriers to use.
RESULTS: Only 10% of participants reported using the Internet themselves to obtain cancer information. Another 21% reported exposure to Internet information through proxies. The most common barrier to Internet use cited was lack of Internet access, with 44% reporting that they would use the Internet to obtain cancer information if they had Internet access. Younger age and more years of formal education were significantly associated with Internet use, although race and income were not. Less education, African American race, and female sex were associated with lower estimates of the accuracy of Internet information. Fewer years of formal education was associated with increased likelihood of reporting confusion after reading Internet information.
CONCLUSION: Very few cancer patients in this study of a cohort of generally disadvantaged individuals used the Internet themselves to obtain cancer information, although many more desired to do so. Significant opportunities for Web-based interventions aimed at improving cancer care outcomes in this population of cancer patients exist. However, further study will be needed to determine how to make such intervention accessible, trustworthy, and understandable to the disadvantaged.
INTRODUCTION
Estimates of the proportion of Americans using the Internet for health information range from 40% to 80% of all Internet users, or approximately 93 million Americans.1,2 It is estimated that, on an average day, 5.5 million Americans go online to search for health information.3 The Internet seems to be playing an increasingly significant and direct role in patients’ health care as well. Eleven million Americans who helped a family member deal with an illness in the past 2 years say their use of the Internet played a crucial or important role in their aid to another person. More than 4 million Americans say the Internet helped them cope with their own struggle with a major illness in the past 2 years.3 More than half of all those who have used the Internet to access health information report that it has improved the way they obtain health information, and almost half (41%) of users report that the information they found has affected a health care decision.3 Although it is likely that the widespread use of the Internet is having significant effects on patients, which patient populations are more likely to use, and be affected by, the Internet remains a subject of active investigation.
Socioeconomically disadvantaged populations, including those with cancer, are faced with significant disparities with regard to health care access and outcomes. There is emerging evidence of a socioeconomic gap in access to information on the Internet. This gap in access and use of the Internet has been called the digital divide. Approximately 42% of households earning $50,000 dollars or more per year have been reported as having Internet access, compared with 17% of households earning less than $30,000 dollars per year, although one recent study suggested that as many of 36% of people living in low-income households (less than $30,000 dollars/year) use the Internet.4 Nearly 65% of college graduates have home Internet access, but only 11.7% of households headed by persons with less than a high school education have Internet access.5 Within households below the median income for American households, African-Americans are less than half as likely as whites to have a computer at home.5 Nicholson’s study of health information resources found that black women were 60% less likely than white women to use computer-based resources.6
Recent studies suggest that though the digital divide is closing in some patient populations, there remain significant disparities in access to and use of the Internet. In a systematically sampled population of inner city patients at three urban primary care clinics, Dickerson found that 33% of patients had used the Internet within the past year to search for health information. In this study, black patients were 44% less likely than white patients to use the Internet. Those patients who had attended some college were 4.3 times more likely to have used the Internet than less educated patients.7 Robinson examined 152 patients in outpatient general medicine clinics in Los Angeles and found that only 20% of patients in this cohort study had Internet access and only 5% of patients had used the Internet to search for health information.8
With specific regard to cancer patients, there is relatively little information describing the effects of Internet information. Estimates of the proportion of cancer patients using the Internet range from 8% (among patients at a Veterans Affairs Research Service hospital) to 50% (at a Canadian urban academic referral center).9-14 We have previously found that American oncologists estimate that approximately 30% of their cancer patients use the Internet to obtain cancer information,15 an estimate confirmed by Eysenbach in his comprehensive review of published studies on this topic.16
Although recent studies have begun to document Internet use among cancer patients, few published studies have specifically examined Internet use and the barriers to use among disadvantaged patients. To gauge the frequency and effects of Internet use among such a population of patients, we conducted a structured interview study of a convenience sample of cancer patients in an urban public hospital. Wishard Memorial Hospital (WMH) is located near the center of downtown Indianapolis, a city of nearly 900,000 residents, and serves as the county hospital for the merged city-county metropolitan area. The oncology clinic at WMH serves a stable and ethnically diverse inner-city population that is made up mostly of socially and/or economically disadvantaged individuals. Fewer than 5% of WMH patients have private insurance, and approximately two thirds of patients have a publicly funded form of indigent care insurance, such as Medicaid.
This study was approved by the institutional review board of Indiana University. All patients participated anonymously and gave their oral informed consent to participate. Here we report results from this structured interview study of 200 patients.
PATIENTS AND METHODS
Participants
Participants were selected by convenience sampling from the WMH Oncology Specialty Outpatient Clinic at the time of a new or established patient visit. Efforts were made to approach every patient entering the clinic on a given day who had not previously been approached for participation. This continued until the target goal of 200 interviewed patients was completed. Patients were approached in clinic or in the chemotherapy infusion area by a research assistant and their willingness to participate in the study was assessed using a scripted dialogue. Eligible subjects included patients 18 years of age who could communicate sufficiently in English and who were neither medically nor mentally impaired sufficiently to prohibit participation. Subjects were asked for oral informed consent to participate in this study using a scripted dialogue and were interviewed immediately after consent. Subjects were told that all answers would be kept confidential and would not affect their care in any way.
Interview, Interviewer, and Survey Instruments
Interview. Information was obtained from patients via a structured, face-to-face interview lasting 15 to 20 minutes. The survey was developed by the investigators and some questions were adapted from prior studies.13-15 During the interview, all questions were read from a standardized survey form. Patients’ responses were hand written on the survey form by the research assistant. Numerical codes were assigned to the handwritten responses, and the responses were entered into a database created by the investigators in the form of an Excel spreadsheet.
Interviewers. One interviewer held a Bachelor’s degree with training in medical ethics. The second interviewer was an oncology nurse and held a juris doctor. Both interviewers had prior experience obtaining medical histories and conducting surveys of cancer patients and underwent ongoing training by the principal investigator (P.R.H.) in interview techniques.
Survey Instruments. All survey questions were developed by the investigators or adapted from prior studies. A pilot version of the survey was administered to 18 patients from the same oncology clinic. Results and experience were used to refine some questions to improve understanding of the questions. Information obtained from patients included sociodemographic and cancer-specific clinical information. Estimates of income were made using the median income for the zip code in which each patient resided. Survey questions addressed access to computers and to the Internet, exposure to Internet information through proxies, and attempted to identify barriers to computer and Internet use. Patients were asked as a true/false question whether they would like to read information about cancer on the Internet if they had access to the Internet.
Self-described Internet users were also given choices as to why they used the Internet to obtain cancer information. Internet users were provided with several response categories describing types of information they had sought on the Internet, and were given an opportunity to include others of their own choosing. These included treatment options, general information about cancer, nutrition and cancer, alternative therapies, ways to live with cancer, and news articles about research and treatment. Other questions addressed patients’ estimates of the accuracy of Internet information. Internet users were asked whether they had ever discussed Internet information with their doctors. We asked if patients had ever felt more hopeful, anxious, or confused after reading Internet information. The selection of these outcomes was based on prior pilot work suggesting that these outcomes were commonly cited by patients who read cancer information on the Internet.13
We examined participants’ preferences both for information and for participation in medical decision making. Information preferences were examined in two ways. We used a Likert scale asking patients to rate their desire for information about their disease with 1 being no more detail than is needed and 7 being as many details as possible. We additionally assessed information preferences by asking participants to select among three statements describing information preferences: "I want only the information needed to take care of myself properly," "I want additional information only if it is good news," and "I want as much information as possible, good or bad." Finally, we examined participants’ preferences for involvement in medical decisions by asking them which model best describes their decision-making style: doctor-centered, shared, or patient-centered, using a question adapted from Llewelyn-Thomas.17 The interview text may be found in the appendix.
Statistical Methods
T-tests were performed to test for an association of continuous variables with use of the Internet to obtain cancer information. 2 tests were conducted to examine the association between categoric variables and Internet use. If any expected cell sizes were less than 5, Fisher’s exact tests were conducted instead of 2 tests. A multivariable logistic regression analysis was done to investigate the association of demographic and diagnosis variables on Internet use. Missing data were excluded from the analysis.
RESULTS
Two hundred eight patients were approached for participation in the study and 200 patients completed the interview (96%). Eight patients (4%) refused, with the most common reason being not feeling well enough to participate. Participants were recruited from a general oncology clinic and a breast oncology clinic. Demographics for participants are shown in Table 1. The median age for participants was 57 years. Because breast cancer patients at WMH are cared for in a separate, dedicated clinic, a higher proportion of women were recruited to this study than would have been expected by chance (65%). Nearly half of patients had less than a high school degree. Nearly three quarters of patients had either lung, breast, or colon cancer.
Internet Use
Ten percent of study participants reported using the Internet themselves to search for cancer information (users). Twenty-one percent of those participants who did not use the Internet themselves to obtain cancer information reported that proxies (friends or family, most commonly) occasionally provided them with Internet information. Table 2 lists subjects’ reports of the type of information sought on the Internet. The most common type of information obtained was treatment options. Table 3 lists the most common reasons Internet users cited for using the Internet. Understanding their disease better was the most common response.
Overall, interviewed participants felt that Internet information was accurate. On a Likert scale of one to seven, with seven being most accurate and one being least accurate, the mean estimate of the accuracy of Internet cancer information among users was 5.6.
All subjects were asked whether they did or did not use a computer. Among nonusers of the Internet, 29% of participants had access to a computer and 21% of participants had access to the Internet. Nonusers of the Internet were asked why they did not use the Internet. Table 4 lists these reasons. The most common reason cited was lack of computer access followed closely by lack of interest. Forty-four percent of nonusers said they would read more about their cancer if they had a way to use the Internet.
Both age and education were significantly associated with Internet use. Self-described Internet users tended to be younger than nonusers (49 years v 57 years; P = .0043) and were more likely to be high school graduates (95% v 54%; P = .0003). There was no association between cancer diagnosis, sex, race, income (based on zip code information), or marital status and likelihood of using the Internet to obtain cancer information. Despite the differences in use of the Internet, users and nonusers reported equal interest in having more information about their disease (P = .4736). Among users, only 40% of participants had shared information they had obtained from the Internet with their doctors.
Sixty-two percent of users reported that Internet information had made them feel more hopeful about their disease. One third (33%) of participants reported feeling more confused after reading Internet information, and nearly one quarter (24%) reported feeling more nervous, anxious, or upset. Of the 31% of participants exposed to Internet information either through their own use or through proxy exposure, only 5% reported that Internet information had swayed a decision they had made about treatment. However, 52% reported that they had learned about new treatments from the Internet and 38% reported learning about clinical trials from the Internet.
Several multivariate analyses were performed to test for associations among demographic and disease variables and Internet use. Internet use was significantly associated only with younger age (odds ratio, 0.94; 95% CI, 0.90 to 0.98) and increasing years of education (odds ratio, 2.86; 95% CI, 1.53 to 5.36). Within our interviewed population, there was no association between likelihood of using the Internet and income (P = .9792). More educated patients were more likely to believe that information obtained on the Internet was accurate (r = 0.0417; P = .05). Of the five Internet users who had a college degree or higher, all estimated the accuracy of Internet information to be 6 or 7 of 7. Both sex and race were significantly associated with a lower estimate of the overall accuracy of Internet information. Women had a mean estimate of 5.38 (P = .0494), and African-Americans had a mean estimate of 4.60 (P = .0310).
Only fewer years of formal education was significantly associated with increased likelihood of reporting confusion after exposure to Internet information (P = .0352). No tested demographic variable was associated with reporting increased hopefulness or anxiety after exposure to Internet information. No examined demographic variables were associated with the likelihood of discussing Internet information with one’s doctors.
There was no difference in the mean scores for information preferences between Internet users and nonusers both using a 7-point Likert scale and in the qualitative question examining information preferences (6.6 v 6.3, P = .47). There were no differences between Internet users and nonusers with respect to decision making preferences (P = .86).
DISCUSSION
The use of the Internet to obtain health information has become a widespread phenomenon among individuals seeking medical care, with millions of individuals going online each day to find medical information. Studies of Internet use among cancer patients suggest that 30% to 40% of patients seek information about their cancers from the Internet,12,15,16 although in socioeconomically disadvantaged populations, such as within a Veterans Affairs Research Service hospital, there is evidence that the proportion of Internet health information seekers is lower.9 Few published studies have specifically examined use and desire for use of the Internet to obtain health information among large cohorts of exclusively disadvantaged cancer patients. Thus, this is the first study of Internet use among disadvantaged cancer patients outside of a Veterans Affairs Research Service setting.
Overall, only 10% of disadvantaged patients in this cohort used the Internet to obtain cancer information themselves. As might be predicted, this rate of self-use is low compared with rates of use in populations of cancer patients not restricted to socioeconomically disadvantaged patients.12,14 Another 21% of our cohort of patients obtained Internet information through proxies. We are unable to draw conclusions about the differential effects of self-obtained versus proxy-provided Internet information because they were not specifically explored in the survey. The only other published study of rates of use among cancer patients and proxies found that 44% of patients in the cohort and 60% of companions used the Internet for cancer information. However, this study was performed in a large, urban, academic referral center and probably reflects very different patient demographics than our cohort.12 Nonusers were nearly equally split with respect to using the Internet to obtain cancer information if given the opportunity: 44% of nonusers reported that they would be interested in using the Internet to obtain information about cancer if they had access to the Internet, and 49% of patients responded that they were not interested. Our results suggest that efforts to provide Internet access to disadvantaged patients are appropriate and may be welcomed by a substantial proportion of patients. However, these findings obviously suggest that interventions that attempt to provide Web-based information to cancer patients should take patients’ preferences for format of information into account. Notably, we found no differences between Internet users’ and nonusers’ preferences for information or for style of decision making, raising questions about the information needs of patients who were not interested in using the Internet for cancer information: Are their information needs already being met through other means? Are they intimidated by or suspicious of Internet information? We are in the process of exploring this finding further in qualitative studies among a similar group of patients. Finally, although only 5% of study participants reported that Internet information had directly influenced a medical decision, other possible effects of Internet information, such as satisfaction with disease information and communication with members of the care team and with health care services, were not explored. Effects on these patient-centered outcomes, including decision making, should be further explored.
The most common barrier to seeking online cancer information cited by participants was not having access to a computer. Our results are similar to at least one other study of oncology patients, in which 60% of nonusers said lack of access was barrier.18 Only 18% of patients selected cost from a list of barriers to Internet use.
In this cohort of socioeconomically disadvantaged cancer patients, only younger age and more years of formal education were associated with Internet use for cancer information, similar to other studies; however, race and income were not.1,4 We did not find a statistically significant association between assigned income based on zip code data and Internet use; however, our cohort contained a relatively small number of high income responders and their rates of Internet use were unusually low (data not shown). Several other studies have examined rates and predictors of Internet use among cancer patients. The study by Fogel et al10 of 188 breast cancer patients at a single institution found that higher income and education significantly predicted Internet use. Nonwhites were less likely than whites to use the Internet for health information, but this result was not statistically significant. Monnier et al11 found that among 319 patients and caregivers, black patients were less likely to use the Internet themselves and were less likely to have a family member who used the Internet. The authors also found that Internet use was significantly correlated with education, but the effect of income was not examined. Basch et al12 found that younger age and higher education were associated with the likelihood of using the Internet for cancer information, but the effects of race and income were not examined. The study by Peterson and Fretz19 of 139 patients attending a lung cancer clinic at an academic medical center found that 16% of patients sought information on the Internet, and usage was associated with increased income and education, but the effect of race was not examined. Smith et al9 surveyed 295 patients undergoing radiotherapy for prostate cancer in three settings—an academic medical center, a Veterans Affairs Research Service hospital, and a community hospital—and found that, controlling for access to the Internet, white patients were significantly more likely to use the Internet to search for cancer information than black patients. The effects of education and income were not examined, and the rates of usage among Veterans Affairs patients were so low (8%) as to make conclusions about this specific group of disadvantaged patients difficult. None of these studies examined exclusively disadvantaged cancer patients, and it is possible that the effects of race and income on Internet seeking behaviors in disadvantaged groups of cancer patients is quantitatively less important than in other groups of cancer patients. Confirmation of this finding in other groups of disadvantaged patients is warranted. Further research into the effects of race and other socioeconomic variables on Internet use would help to target future Web-based intervention studies aimed at narrowing the digital divide.
Our data suggest that estimates of the accuracy of Internet information are positively associated with increased education. More years of formal education was significantly associated with increased estimates of accuracy and lower likelihood of reporting confusion as a result of reading Internet information. The reasons why black patients had lower estimates of accuracy than other subgroups were not explored in this study. One hypothesis worthy of exploration is that general suspicion about medical information or toward the medical establishment itself may influence perceptions of the accuracy of Internet medical information. In the end, our findings suggest that, in addition to providing Internet access to those who desire it, disadvantaged cancer patients may benefit from Web-based interventions that address specific issues related to quality, readability, and trustworthiness of Internet information.
Of note, only 40% of Internet users in this study reported sharing the information they found with their doctors within the clinical encounter. In our previous survey study of United States oncologists, survey respondents estimated that approximately one third of patients who sought cancer information on the Internet discussed it in the clinical encounter, a figure similar to the findings in this study of cancer patients.15 The sharing of Internet information clearly represents an opportunity to clear up misunderstandings and false information and may serve as a check on the substantial quantities of misinformation available on the Internet. We cannot determine from this study the precise reasons why patients did or did not share information with their doctors, and no examined sociodemographic or disease variables were associated with this outcome. We have suggested elsewhere that physician-associated variables, such as the perception of threat to authority, may influence a patient’s desire to share information.15 However, patient-associated factors that may inhibit patients from discussing Internet information remain unknown. The reasons why patients do not share information with their oncologists is a phenomenon worthy of further study, and an understanding of the reasons would be vital to any efforts to translate Web-based interventions aimed at patients into clinical care.
We recognize several limitations with our study. Although it is the largest study of use of the Internet conducted wholly among disadvantaged cancer patients performed to date, it was conducted among a convenience sample within a single, inner-city, public hospital located in a large, Midwestern city, and the possibility of cohort bias cannot be excluded. Second, the sample had more females than males, and the possibility that our results were biased by this disparity cannot be excluded. Third, the survey interview as designed did not delve deeply into the effects of Internet information on individual patients’ decisions, clinical care, and satisfaction with health services processes. This is an area of patient-centered outcomes that deeply needs further study, given the many public and private efforts to provide Internet access to medical patients and given the overall growing use of the Internet to obtain health information.
In summary, in this study of disadvantaged cancer patients at an urban, public hospital, very few patients used the Internet themselves to obtain cancer information, although more were exposed to Internet information through proxies. Nearly half of all participating nonusers of the Internet seem to desire such an opportunity. Although providing assisted or filtered Internet information to this population of patients may represent an important strategy to improve their care, a greater understanding of the outcomes and effects of Internet information on patients and on their interactions with health care professionals is still needed.
Authors’ Disclosures of Potential Conflicts of Interest
The authors indicated no potential conflicts of interest.
Appendix 1. Questionnaire
"First, I would like to get some information about you."
1. Patient Number: (Number sequentially) __________
2. Age: _____
3. What is your cancer diagnosis? (What kind of cancer do you have?)
4. How long have you had cancer? Or when were you first diagnosed with cancer?
"Many patients tell us that they are reading information about cancer on the Internet. I’m going to start by asking you some questions about whether you have used the Internet to obtain information about cancer since your diagnosis."
1. Do you have access to a computer?
Yes No
2. Do you have access to the Internet?
Yes No
3. Do you ever use the Internet to get information about your cancer?
Yes No
4. Does anyone else you know ever provide you with Internet information about cancer?
Yes No
5. True or False:
I would like to read information about cancer on the Internet, but I do not have access to a computer or the Internet.
6. On a scale of 1 to 7, how interested are you in reading information about cancer on the Internet? 1 means that you have no interest at all in reading information about cancer on the Internet and 7 means that you have a great deal of interest in reading information about cancer on the Internet.
1 2 3 4 5 6 7
For patients without access to a computer or the Internet
7. "People have many reasons for not using the Internet. Which of the following reasons applies to you?"
__________I have no access to a computer
__________I have a computer, but no access to the Internet
__________I have a computer, but no telephone at home
__________I do not know anything about the Internet
__________I did not know that you could get cancer information on the Internet
__________Too expensive
__________I prefer to get information from my doctor rather than a computer
For Internet users:
8. What types of cancer information do you obtain from the Internet?
__________General information about your type of cancer (eg, what it is, how it is diagnosed, etc.)
__________Treatment options (eg, standard therapies, clinical trials)
__________Ways to cope with cancer (eg, psychosocial support)
__________News reports (eg, news articles about cancer research and treatment)
__________Alternative or complementary therapies
__________Nutrition and cancer
__________Medical journal articles
__________Chat rooms/discussion groups/on-line support groups
__________Financial assistance
__________Other (please explain)
Can you think of any particular Web sites you have visited?
9. People have various reasons for seeing information on the Internet. Why do you look for information on the Internet? (Check all that apply.)
__________To understand the disease better
__________To investigate treatment options
__________To help in coping with my cancer
__________Are there any other reasons? (please explain)
10. On a scale of 1 to 7 where 7 means extremely accurate and 1 means extremely inaccurate, how would you rate the accuracy of information about cancer on the Internet?
1 2 3 4 5 6 7
11. Some people say that they have felt more confused after reading information about cancer on the Internet. On balance, would you say you have ever felt more confused after reading information about cancer on the Internet?
Can you remember an example of this?
12. Have you ever felt more hopeful after reading information about cancer on the Internet?
Yes Don’t know No
12a. Can you remember an example of an Internet piece that increased your level of hope?
12b. What was it about the information that made you feel more hopeful?
Have you ever felt more nervous, anxious or upset after reading information about cancer on the Internet?
Yes Don’t know No
13a. Can you remember an example of an Internet piece that increased your level of anxiety?
13b. What was it about the information that made you feel more nervous or anxious?
14. Have you ever discussed information you have read about cancer on the Internet with your doctors?
YES
a. Why did you discuss this information with your doctors?
b. How did your doctors react when you brought it up?
c. Was discussing the information with your doctors helpful to you?
d. How?
NO
e. Why didn’t you discuss this information with your doctors?
15. Has Internet information influenced any of your decisions about treatment? If so, how?
16. Have you ever learned about new treatments on the Internet?
Yes No
17. Have you ever learned about clinical trials on the Internet?
Yes No
ALTERNATIVES OF CARE
18. Other than the treatment you are:
1) currently receiving
2) going to receive
3) previously received
Do you know of or has anyone ever discussed any other options for treatment of your disease?
DECISION-MAKING PREFERENCE QUESTIONNAIRE
19. After patients have all of the information they need about their illness and possible treatment, some prefer to leave decisions about their treatment up to their doctor, while others prefer to participate in these decisions. Of the following statements that I will read to you, please tell me which best describes the ideal you believe in. I can repeat the statements or show them to your if you wish.
__________The doctor should make the decisions using all that is known about the treatments.
__________The doctor and I should make decisions together on an equal basis.
__________I should make the decisions using all I know or learn about the treatments.
INFORMATION PREFERENCES
Some patients want lots of information about their disease when undergoing treatment and others only want to know a few things. On a scale of 1 to 7, please rate how much information about your disease you like to have. 1 means "no more details than needed" and 7 means "as many details as possible."
1 2 3 4 5 6 7
Please select from the following statements which best describes how much information you prefer to have about your illness.
__________I want only the information needed to take care of myself properly.
__________I want additional information only if it is good news.
__________I want as much information as possible, good and bad.
DEMOGRAPHICS
Gender: __________Male
__________ Female
Race: AfA Ca AsA HA Other
Birth date: _______/_______/_______
Education: Number years of school
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24
Marital Status:
Single Married Divorced
Single with partner Separated Widowed
What is or what was your most recent occupation?
Where were you born? __________
Current zip code? __________
NOTES
Supported by a Young Investigator Award from the American Society of Clinical Oncology (P.R.H.).
Authors’ disclosures of potential conflicts of interest are found at the end of this article.
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