Increasing numbers of cancer patients are using the Internet, but little is known about their attitudes toward online health care.
The purpose of this substudy was to analyze cancer patients' attitudes toward online health care.
This was a substudy of 41 persons with cancer who used the Internet for health care information and support and who completed the Attitudes Toward Online Health Care (ATOHC) survey.
The majority of study participants were married, held graduate degrees, and had high incomes. Using a five-point Likert scale, means for the five dimensions of the ATOHC survey were as follows: community and news 3.22 (SD = 1.01), outcomes 3.20 (SD = 1.08), trusted information and advice 2.73 (SD = 0.66), self-efficacy in evaluating information and intention 3.46 (SD = 0.65), and disclosure 3.15 (SD = 1.06). The average response fell between “About half the time” and “Usually.” Favorite websites for content were Medscape and WebMD, while favorite sites for support were WebMD and Mediconsult.
Respondents were generally eager to obtain and offer cancer information and support online, but they were skeptical of unknown sources. They were comfortable both giving and receiving information and support. Respondents were interested in the experiences of other patients and benefited by their direct and indirect interactions with them. Respondents felt that they coped better with their illness and experienced less uncertainty and anxiety as a result of their online experiences. They reported a certain level of trust, primarily for established reputable sources of information, and they were confident in their ability to evaluate the information, including research reports. In addition, cancer patients displayed a healthy skepticism when presented with the option of divulging their personal health information; however, they were willing to provide personal details if, as a result, a website provided them with individualized information.
The Internet is rapidly becoming an indispensable resource for persons with cancer. Over 50% of adults in the United States have searched online for health information, and 80% of all US Internet users have searched online for at least one major health topic. This makes searching for health information the third most common online activity after email and researching a product or service [
Although the number of persons who seek cancer health care information online is difficult to measure [
The Online Social Support Theory [
The concept of online health care encompasses a number of factors. Five particular factors that have been represented in the literature are community and news, outcomes, trusted information and advice, self-efficacy in evaluating information and intention, and disclosure.
The Internet, as a collective entity of health professionals, peers, and other concerned international citizens, has responded to cancer patients' needs with a profusion of online community and news mechanisms for support and information. For psychosocial connection with others in a similar situation, cancer patients may choose from a variety of formats and venues: they can join email newsgroups and web-based discussion boards, or they can chat in real time. They can find general support groups or ones that are specific to their type or stage of cancer. Groups may be run by fellow patients, or, less frequently, by licensed health care providers. In addition to online community support, Internet news formats for cancer patients are steadily evolving and taking various forms, such as electronic newsletters and dedicated information sites, or a combination of community and news. For breast cancer alone, it is estimated that 2.4 million Web pages of information are available [
The ultimate test of the effectiveness of online health sites for cancer patients, particularly the effect of online support interventions, is their influence on health outcomes. Analysis of outcomes has been hampered by study designs that fail to distinguish between different types of support, for instance, support provided by peers, support provided with or without the presence of health care providers [
A very salient aspect of life for cancer patients is trust. Because of existential concerns and their need for hope, cancer patients are a vulnerable population [
The knowledge gained from accessing online information and support and from participating in community and news venues of health websites can enhance one's self-efficacy and sense of empowerment. Through online health settings, cancer patients can develop a “social fitness” [
In order to receive optimal benefit from online health venues, cancer patients may be asked to disclose personal health information, such as the stage of their cancer or the presence of metastasis. Because of the Healthcare Information Portability and Accountability Act (HIPAA) in the United States [
The Attitudes Toward Online Health Care (ATOHC) survey was developed to measure the attitudes of people who engage in online health care activities. The instrument was originally comprised of 51 items on a 5-point Likert scale. Possible responses included the following: 1 (Never), 2 (Seldom), 3 (About half the time), 4 (Usually), and 5 (Always) [
An exploratory factor analysis of 265 respondents who used online health care services was conducted using methodology outlined by Gable and Wolf [
This was a descriptive study using a subsample of cancer patients from the total sample of those 265 persons who participated in the Attitudes Toward Online Health Care (ATOHC) study [
Participants were recruited by one of three methods: (1) email discussion groups, (2) Web-based discussion groups, and (3) referrals from other websites. For the email discussion groups, a general invitation to participate was sent to a various groups asking for volunteers to complete the survey. An attempt was made to approach groups dealing with diverse medical conditions, such as heart disease, cancer, lupus, and those with general disability issues. In addition, messages were sent to a number of health professional discussion lists, including those for nurses, physicians, and physician assistants, asking those who personally utilized online health care services to volunteer. A similar procedure was followed for the Web-based discussion groups, with the exceptions that the message was posted on existing websites and potential respondents did not receive the notice automatically as they would with an email. For the referrals from other websites, arrangements were made with webmasters at two Internet health sites,
Data were collected from March 14, 2000 through March 28, 2000. Participants completed a demographic form and the ATOHC survey in a Web-based format. An additional free-text area asked the question, “What changes has receiving online health care information and support caused in your life?” Data were analyzed with the Statistical Package for the Social Sciences (SPSS), Version 11.0.0 [
The mean age of respondents was 57.68 years (SD = 10.15; range 37–79). Slightly more than half, 53.7%, were male (n = 22), 78.9% were married (n = 32), and 90.2% were living in the United States (n = 37).
Demographic characteristics of respondents (N = 41)
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Female | 19 | 46.3 |
Male | 22 | 53.7 |
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Married | 33 | 80.5 |
Divorced | 3 | 7.3 |
Single | 3 | 7.3 |
Unspecified | 2 | 2.9 |
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High school diploma | 5 | 12.2 |
Some college/associate's degree | 11 | 26.9 |
Bachelor's degree | 6 | 14.6 |
Graduate degree | 18 | 43.9 |
Unspecified | 1 | 2.4 |
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$5000–14999 | 3 | 7.3 |
$15000–34999 | 7 | 17.0 |
$35000–49999 | 7 | 17.1 |
$50000–74999 | 10 | 24.4 |
≥ $75000 | 7 | 17.1 |
Unspecified | 7 | 17.1 |
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Working full time | 15 | 36.6 |
Not working: retired | 13 | 31.7 |
Working part time (39 hours or less per week) | 7 | 17.1 |
Not working: disabled or other reason | 6 | 14.6 |
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United States | 37 | 90.2 |
Other | 4 | 9.8 |
Participants were asked to select their primary and secondary diagnoses from a list by checking the relevant boxes on the online form. A separate area was provided to enter their diagnosis if it was not included in the list. For primary diagnoses, the majority of respondents elaborated on their type of cancer, whereas for secondary diagnoses, more non-cancer conditions were listed (
Respondents' listing of diagnoses and comorbid conditions (N = 41)
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Cancer |
39 | 95.1 |
Cardiac | 1 | 2.4 |
Fibromyalgia/chronic fatigue | 1 | 2.4 |
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Cancer |
5 | 12.2 |
Depression | 3 | 7.3 |
Diabetes | 2 | 4.9 |
Epstein-Barr | 1 | 2.4 |
Huntington's Disease | 1 | 2.4 |
Post-Traumatic Stress Disorder | 1 | 2.4 |
Rhabdomyosarcoma | 1 | 2.4 |
Seizure Disorder | 1 | 2.4 |
Unspecified | 26 | 63.4 |
* Of the 39 persons listing cancer as a primary diagnosis, 11 specified the site (7 prostate, 2 breast, 1 colon, 1 chronic lymphocytic leukemia).
† Of the 5 persons listing cancer as a secondary diagnosis, 2 specified the site (1 prostate, 1 kidney). Three respondents listed cancer as both a primary and secondary diagnosis. For the other two persons, the corresponding primary diagnoses were 1 Grave's disease, 1 unspecified.
In this sample, scores ranged from 50 to 172, with a mean of 128.46 (SD = 25.98). Thirty-six items had a scale range of 1–4, and 5 items had a range of 1–5. Pearson
ATOHC scores by dimension
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Community and news | 41.84 | 13.19 | 13–64 | 13–65 |
Outcomes | 28.80 | 9.72 | 9–42 | 9–45 |
Trusted information and advice | 27.27 | 6.58 | 10–37 | 10–50 |
Self-efficacy in evaluating information and intention | 24.24 | 4.54 | 7–31 | 7–35 |
Disclosure | 6.29 | 2.12 | 2–10 | 2–10 |
* Higher scores indicate a greater degree of positive agreement.
The three highest ranked items were “I want to know how my online health information will be used before providing information” (mean = 3.93; SD = 1.29); “I am comfortable in evaluating the quality of online medical research reports” (mean = 3.83; SD = 0.89); and “I like to give online support to other patients who have my condition” (mean = 3.56; SD = 1.32). The item ranked lowest was “I tend to trust the products that other patients sell online” (mean = 1.63; SD = 0.77), followed by “I trust online summaries of health research articles even when I am not told who wrote them” (mean = 2.37; SD = 1.07). For the third lowest mean ranking, two items had a mean of 2.44: “I trust online healthcare advertising that has been sponsored by pharmaceutical companies” (SD = 0.95), and “I tend to trust a site more that has a seal of approval, even if I don't know the organization that is awarding it” (SD = 1.05). Outcomes related to depression fell between the highest and lowest scores.
Highest mean scores on each dimension of the ATOHC survey (N = 41)
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3.22 | 1.01 | |||
42 | I like to give online support to other patients who have my condition. |
.78 | 3.56 | 1.32 |
10 | I like to participate in e-mail based discussion about my condition. |
.75 | 3.54 | 1.25 |
14 | I like to read online biographies of other patients that have had my condition. |
.53 | 3.49 | 1.10 |
3.20 | 1.08 |
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20 | As a result of visiting health-related web sites, I have less uncertainty about my condition. |
.69 | 3.51 | 1.21 |
40 | As a result of visiting health-related web sites, I am better able to cope with my condition. |
.80 | 3.46 | 1.16 |
12 | As a result of visiting health-related web sites, I am less anxious about my condition. |
.75 | 3.37 | 1.26 |
2.73 | 0.66 |
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49 | I trust online reports of medical studies that have already been published in a journal. |
.44 | 3.44 | 0.87 |
13 | I trust online advice given by a Medical Doctor (MD). |
.33 | 3.44 | 0.87 |
35 | I trust a site that has been endorsed by a health authority. |
.54 | 3.12 | 1.08 |
3.46 | 0.65 |
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43 | I want to know how my online health information will be used before providing information. |
.36 | 3.93 | 1.29 |
11 | I am comfortable in evaluating the quality of online medical research reports. |
.48 | 3.83 | 0.89 |
41 | I feel that online health information is at a comfortable comprehension level. |
.36 | 3.61 | 0.89 |
3.15 | 1.06 |
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3 | I will disclose my email address to an online healthcare website. |
.58 | 3.51 | 1.05 |
19 | I will give my name to an online healthcare website if I will receive personalized information. |
.44 | 2.78 | 1.31 |
3.13 | 0.63 |
Participants were asked to select their favorite websites for content, as well as for support, from a drop-down menu offering a listing of popular sites. One of the options was “other,” in which case they could enter the name of a site using a text box. Medscape and WebMD were the most frequently mentioned favorite sites for content (31.7% each), while WebMD was the favorite site for support (17.1%). Favorite websites for content were primarily those sponsored by large organizations and by government agencies, such as the American Cancer Society and National Cancer Institute. Other favorite sites for support included a number of smaller, more specific sites such as Avon Crusade message boards and psa-rising.com. Favorite content and support sites are listed in
Favorite websites for content and support
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Medscape.com | 13 | 31.7 | WebMD.com | 7 | 17.1 | ||
WebMD.com | 13 | 31.7 | Mediconsult.com | 3 | 7.3 | ||
Intelihealth.com | 2 | 4.9 | Medscape.com | 2 | 4.9 | ||
Mayohealth.com | 2 | 4.9 | Onhealth.com | 2 | 4.9 | ||
Other | 22 |
51.2 | Other | 24 |
53.7 | ||
Prostate Help Mailing List (PHML) |
3 | 7.2 | PHML |
3 | 7.3 | ||
CancerLit |
2 | 4.8 | “Mailing lists” |
2 |
4.8 |
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Cooleyville.com | 2 | 4.8 | MSN communities (groups.msn.com) | 2 | 4.8 | ||
Prostatepointers.org | 2 | 4.8 | |||||
Sites listed once: about.com, Association of Cancer Online Resources (acor.org), American Cancer Society (cancer.org), drkoop.com, healthcentral.com, helioshealth.com, mediconsult.com, ostomyinternational.org, National Cancer Institute (nci.nih.gov), “Oncology Journals,” oncology.com, onhealth.com, prostate-cancer.org, “web2.airmail.net/lorac1” | Sites listed once: about.com, Association of Online Cancer Resources (acor.org), Avon Crusade Message Boards (avoncompany.com/women/avoncrusade/bbsindex.htm), cooleyville.com, “Doctors Guide to the Internet,” drkoop.com, “Heart Bypass and Transplant Support Board,” intelihealth.com, ostomyinternational.org, ivillage.com, Mass General NeuroWebForum (brain.hastypastry.net/forums/), “MS Breast Cancer Link,” onhealth.com, Patient to Physician (P2P) Mailing List |
** Websites listed in quotes are entries as listed by respondents that were not specific enough to identify a particular site or organization.
* 21 persons listed “Other” favorite content sites. One respondent listed two sites; thus, there are 22 sites listed. Sites are in formats as listed by respondents.
† 22 persons listed “Other” favorite support sites. Two respondents listed two sites each; thus, there are 24 sites listed. Sites are in formats as listed by respondents.
‡ The Prostate Help Mailing List (PHML) and Prostate Problems Mailing List (PPML) are sponsored by the Association of Cancer Online Resources (acor.org).
§ The Patient to Physician (P2P) Mailing List and The Circle Mailing List are sponsored by Prostatepointers.org.
The results of this analysis indicated that although respondents were generally married, they were otherwise from diverse backgrounds, with a tendency toward a higher level of education and income. This was consistent with previous studies. Based on the type of cancer and favorite websites, prostate cancer appeared to be the most common in this group, followed by breast cancer. Respondents utilized a variety of methods to obtain information and support about their cancer, including general medical sites such as WebMD, cancer-specific organizations such as the Association of Cancer Online Resources, patient-run cancer sites such Cooleyville.com, and specific mailing lists such as Prostate Problems Mailing List (PPML).
When responses to the ATOHC scale were analyzed, means for the five dimensions were more consistent than the means for individual items, ranging from 2.73 to 3.46 with standard deviations of 0.65 to 1.08. Mean scores for individual items demonstrated some variability, ranging from 1.63 to 3.93. However, the overall mean of 3.13 indicates that the average response was nearer to “About half the time” than “Usually” on the Likert scale. This demonstrates that respondents perceived some benefit as a result of obtaining health information and support online. This finding, in consonance with previous studies, is more reflective of the use of online health care as an adjunctive rather than a predominant modality of care. Although the use of online health care is rapidly increasing, obtaining health care information and support face-to-face remains the norm in the United States as well as internationally. Although the number of persons in the United States who have sought online health care information has just passed 51% of all adults, or 111 million people, a third of them accessed health information only on an infrequent basis, and not within the previous month [
There are several implications of this study for the care of cancer patients. First, patients are comfortable giving as well as receiving cancer information and support online and are comfortable evaluating it. They are interested in the experiences of other patients and derive benefit by interacting with them directly, through venues such as discussion boards and email lists, or indirectly, through activities such as reading biographies. Second, cancer patients perceived better outcomes after using online health information and support. This was manifested as being able to cope better with their condition, as well as having less uncertainty, anxiety, and, to a lesser extent, depression. Cancer patients have a certain level of trust in online information, primarily for information obtained from established reputable sources such as studies in journals and advice given by medical doctors. They also trust websites endorsed by health authorities. They are confident in their ability to evaluate information, including comprehension of research reports. In addition, cancer patients display a healthy skepticism when presented with the option of divulging personal health information. Some patients are willing to provide email addresses, and, if they receive personalized information, they are comfortable disclosing their identity.
Although results of the ATOHC survey with cancer patients are consistent with the parent survey, the current study needs to be replicated with a larger sample, and websites need to be validated to reflect their current Internet usage in light of mergers and acquisitions since the original study. In addition, correlation with variables such as coping and avoidance, as well as involvement in treatment decision-making [
There were several limitations of this study which prevent the generalization of study results beyond the study sample population. First, the sample size is small and may not be representative of all persons with cancer who use the Internet. Second, the original ATOHC survey sample was comprised of a volunteer population of self-selected persons with chronic health issues. Third, because the cancer patients in the current study were primarily educated with higher incomes, generalization to underserved populations or to those who do not have Internet access cannot be made. Finally, since the data were collected in the year 2000, a number of the websites mentioned have consolidated, merged, or are no longer active. Thus, the study provides a snapshot of a point in time and cannot be inferred to be representative of current attitudes of cancer patients.
This work was supported in part by a training grant from the Department of Defense Breast Cancer Research Program (DAMD17-00-1-0509), Ruth McCorkle, Principal Investigator. The authors also gratefully acknowledge the assistance of Dr. Robert K. Gable, Professor Emeritus, University of Connecticut, for his assistance with the development of the original Attitudes Toward Online Health Care instrument.
None declared.
The Attitudes Toward Online Health Care (ATOHC) Scale.