|
Advertisement |
|
|
||
 |
|
|||||
|
|||||
|
 |
||||||
|
||||||
|
||||||
|
© 2001 American Society for Clinical Oncology
Impact of the Media and the Internet on Oncology: Survey of Cancer Patients and Oncologists in CanadaByFrom the Department of Medical Oncology and Hematology, Princess Margaret Hospital, University Health Network, University of Toronto, Toronto, Canada. Address reprint requests to Lillian L. Siu, MD, Department of Medical Oncology and Hematology, Princess Margaret Hospital, University Health Network, 610 University Ave, Toronto, Canada M5G 2M9; email: lillian.siu{at}uhn.on.ca
PURPOSE: To evaluate the use of the news media and the Internet as sources of medical information by patients and oncologists in Canada and to investigate the impact on patients’ treatment decisions and the patient-doctor relationship. PATIENTS AND METHODS: During a 2-week period, 191 ambulatory patients participated in the survey. Questionnaires were also mailed to Canadian oncologists: 410 of 686 questionnaires were returned (response rate = 60%). RESULTS: Of the 191 patients, 86% wanted as much information as possible about their illness, 54% reported receiving insufficient information, 83% cited physicians as their primary information source, and 7% cited the Internet. Seventy-one percent of patients actively searched for information, and 50% used the Internet. Patients’ opinions about the balance, accuracy, and relevance of news media reports were evenly split. English as the first language, access to the Internet, and use of alternative treatments predicted a higher rate of information seeking. Most oncologists routinely pay some attention to medical news and believe that it is difficult for patients to interpret medical information in the media and on the Internet accurately. Both patients and oncologists agree that information seeking does not affect the patient-physician relationship. CONCLUSION: Information searching is common among cancer patients in Canada. It does not affect the patient-doctor relationship. The media and the Internet are powerful means of medical information dissemination. Strategic efforts are needed to improve the quality of medical news reporting by the media, and to provide guidance for patients to understand their disease and interpret such information better.
TO MAKE INFORMED decisions, cancer patients and their families desire information about their diagnosis and prognosis, conventional and alternative therapeutic options, risks and benefits of treatment, and relevant experimental therapies.1-3 Physicians are often not able to satisfy this demand because limited time is available in busy clinical practices and a lack of training in communication skills. As a result, patients and their families often seek other sources for medical information. A major source of medical and health information for patients and their families is the news media, where new research developments and advances in oncology are frequently reported. In a National Health Council Survey in 1997, 75% of Americans reported that they paid a moderate amount or a great deal of attention to medical and health news.4 Unfortunately, the quality of medical and health news reported by the media is uneven.5-10 Poor reporting often raises false hopes in patients and their families and results in unrealistic expectations.7 One recent example of controversial reporting is a front-page story in The New York Times in 1998 that highlighted the discovery of angiostatin and endostatin and the prediction that cancer could be cured in 2 years as a result of this scientific breakthrough.11 The proliferation of health-related web sites on the Internet provides another vast source of medical and health information. There are no rules or regulations on the posting of medical and health information on the Internet, and as a consequence, many cancer-related web sites exist, but the quality of information is quite variable.12,13 Little is known or published on the effects of medical information from the media and the Internet on clinical oncology practice. We conducted a survey of Canadian oncologists and cancer patients to investigate their attitudes toward medical and health information from the media and Internet sites and to assess the impact of this information on the patient-doctor relationship and the practice of oncology in Canada. We hypothesized that one or more demographic variables, such as age, sex, native language, level of education, occupation, family income, access to the Internet, and use of alternative medicines, would affect the information-searching behavior of a patient.
Patient-Directed Questionnaire Copies of a self-administered questionnaire were placed in ambulatory cancer clinics at the Princess Margaret Hospital, a Canadian comprehensive cancer care hospital, for a 2-week period in April 2000. The 2-week study period was chosen to avoid the possibility that patients might submit repeat questionnaires on their subsequent visits to clinics because it is unlikely that outpatients will make a return clinic visit within that short time frame. Questionnaires were not placed in benign hematology clinics or cancer screening clinics. A cover letter described the purposes of the survey and invited patients to participate on a voluntary basis. Participation in this study was anonymous. The questionnaire consisted of 31 multiple-choice or short answer questions. The first part of the questionnaire collected information on patient demographics, including age, race, native language, level of education, family income, and access to the Internet. The second part of the questionnaire queried patients about their primary source of medical information, whether they actively searched for information, where they searched, and their opinions about the information obtained. The last part of the questionnaire explored issues of patients’ coping with their illnesses, trust in their physicians, and the impact of information seeking on patient-physician relationship. Patients were specifically told that they could choose not to answer any question if they did not wish to do so. Only questionnaires with responses to more than 70% of the questions were included in the final analysis to allow the inclusion of a reasonable number of returned questionnaires without violating the overall validity of survey results. This criterion was selected after all questionnaires were collected but before the performance of any data analysis.
Physician-Directed Questionnaire Both questionnaires were reviewed and approved by the institutional review board at the Princess Margaret Hospital, University Health Network. To protect confidentiality and anonymity, no signed consent form was required to participate in this survey for both patients and oncologists.
Statistical Analysis
Patient-Directed Questionnaire Two hundred twelve patient-directed questionnaires were returned. Twenty-one questionnaires were excluded because less than 70% of the questions were completed; therefore, 191 patient-directed questionnaires were included in the final analysis. Patient demographics are summarized in Table 1. The mean age of respondents was 54 years (range, 17 to 77 years), and 63.8% were female. Most respondents were white (85.2%), and spoke English as their first language (76.3%). Approximately 80% had a high school education or beyond.
A majority of patients (86.4%) wanted as much information as possible about their illness. Among these patients, 53.7% reported that the information they received from their physicians and other health care providers was insufficient. Physicians remained the primary source of medical information for the majority of patients (83.0%) (Table 2). Most patients (71%) searched for information about their illness, with the Internet as the most popular choice. The majority of patients (56%) performed the information search themselves, and the rest, with the help of family and friends. The amount of time spent on searching for medical information about their illness was considerable; 16.7% of patients estimated that they spent between 10 to 30 hours, and 23.8% spent more than 30 hours. Patients’ opinions about the balance, accuracy, and relevance of medical information in the news media and on the Internet were evenly split. Only one patient in our survey paid for medical information over the Internet. Thirty-seven patients (29.4%) requested specific treatments and eight (6.3%) patients declined treatments recommended by their physicians as a result of their information search.
When they tried to discuss the information with their physicians, most patients (88.3%) found that their physicians were willing to discuss information found in the media or on the Internet, and 67.3% of patients found that their physicians spent a lot (16.4%) of or a moderate amount (50.9%) of time discussing this information with them. Most patients (68.4%) thought that patients who searched for information about their illness were coping better or similarly with their illness as compared with those patients who did not search for information. Searching for information about their illness did not reflect a lack of trust in their physicians (Table 3). Most patients (62.9%) did not believe that the patient-doctor relationship was adversely affected by information searching.
Demographic variables, such as age, sex, level of education, occupation, and family income, did not affect information searching. However, patients with English as their first language, those with access to the Internet at home, and those who used alternative medicines were more likely to search for information about their illness (P < .05).
Physician-Directed Questionnaire
More than 70% of oncologists indicated that they paid routine or occasional attention to medical information in the media and the Internet. The most common reason (51.6%) was to keep informed because patients might ask them about such information. Most oncologists felt that the media reported accurate medical information only sometimes (60.6%) or rarely (23.8%). In addition, more than 90% of physicians thought that it was difficult for their patients to understand and interpret medical information in the media and on the Internet correctly. However, most oncologists were supportive or neutral toward patients who actively searched for medical information about their illness (Table 5). Fifty-nine percent of oncologists reported that they felt always (1%), often (5.9%), or sometimes (51.1%) that patients who actively searched for medical information questioned their advice and recommendations. It was common for patients to discuss with their oncologists the information that they obtained (Table 6). Although 21.3% of oncologists thought that their patients expected them to spend more than 30 minutes discussing information obtained by the patient, only 9.6% of oncologists reported doing so in practice.
As for the patients, most physicians thought that patients who searched for medical information were coping with their disease as well as or better than those who did not. Searching for medical information did not reflect a lack of trust in physicians. Furthermore, oncologists also did not believe that the patient-physician relationship was affected adversely (Table 3).
The diagnosis of cancer is associated with substantial anxiety about prognosis, the availability and effectiveness of treatment and its side effects, and a lack of long-term disease control in many cases. Furthermore, patients are more aware than they have been in the past about experimental and alternative therapies. Therefore, it is not surprising that cancer patients want to receive as much information as possible about their illness.1-3 This desire for information is reflected in our survey, with 86.4% of patients reporting that they desired as much information as possible about their illness. However, 53.7% of these patients did not feel that their physicians and other health care workers provided them with adequate information. This is a complex issue, but oncologists in busy clinical practices often have limited time to spend with each patient, and communication may have a lower priority than medical treatment. The news media is a major source of medical and health information for the general public. In a National Health Council Survey in 1997, 75% of Americans reported that they paid a moderate amount or a great deal of attention to medical and health news.4 Only 5% claimed that they did not pay any attention at all. Furthermore, more than 90% of respondents to this survey thought that the quality of medical and health information in the news media was fair to good. However, journalists are often limited by lack of training in scientific methodology, insufficient time and space for them to present a balanced story, competition to be the first to break a major story, and the need to attract the attention of viewers and listeners quickly.5,8,10 As a result, medical news is often sensationalized. In addition, studies are often reported in isolation, and there is generally no follow-up of previously reported stories. Also, researchers and medical institutions sometimes use the media to increase public awareness in their research and to increase the chances of future research funding.5,7 Consequently, the quality of medical and health information in the news media is frequently suboptimal. One recent review of 187 newspaper articles and 27 television reports on pravastatin, alendronate, and aspirin showed that 40% did not present benefits quantitatively, 53% did not discuss side effects, and 70% did not mention costs associated with therapy.9 In addition, 50% of experts cited in these articles and reports did not disclose their potential financial conflicts. The explosive growth of the Internet provides a major source of medical and health information. The convenience, anonymity, and amount of information available on the Internet make it an attractive medium for the public to obtain medical and health information. It has been estimated that 55% of the 110 million adults with Internet access in the United States use it to obtain medical and health information.14 A recent Canadian survey showed that 22% of adult Canadians used the Internet to find medical and health information during the past year.15 There is no quality control of medical and health information posted on the Internet. Anyone with access can establish a Web site and post medical information on the Internet. In a recently published review of 136 Internet sites on breast cancer, only 32% identified the credentials of authors, 33% showed the date of posting, and 30% indicated the source of information posted.12 The impact of the media and the Internet is enormous. In the aforementioned National Health Council Survey,4 58% of the general American public stated that they have changed their behavior or acted on information they have read or heard in a medical or health news report. Among those who have searched for medical information online, 70% said that the information influenced their opinion on how an illness should be treated, 50% said that the information led them to ask their doctors new questions or obtain a second opinion, and 28% said that the information affected their decision of whether to visit a doctor or not.14 Therefore, it is critical to ensure that medical and health information in the media and on the Internet is accurate. Various authors and organizations have proposed guidelines for the public to assess the quality of medical and health information available on the Internet.16,17 In contrast to the general public, cancer patients still rely primarily on their physicians for medical information about their illness. However, information seeking was common in our patient sample, with 71% of patients stating that they searched for medical information somewhere else. Patients’ hopes are often raised by the excitement that surrounds the discovery of a particular molecular target or a new type of treatment. Often, their oncologists will tell them that the particular type of treatment is not available to them or that it is unlikely to be applicable in their situations. Therefore, cancer patients tend to be more critical of the quality of medical and health information from the news media and the Internet than is the general public. In our survey, patients were evenly split in their opinions about the information they obtained. Still, the impact of information searching is large, with 29.4% of patients requesting specific treatments, and 6.3% of patients declining treatments recommended by their oncologists. The response rate of physicians to our questionnaire was 59.8%, a return rate higher than that recorded for other physician-directed questionnaires.18 This likely reflects the interest of oncologists in this topic. A majority of oncologists in Canada reported that they paid routine or occasional attention to medical news reported in the news media. One common reason for this is that oncologists want to be up-to-date, and to be able to respond to questions raised by their patients. However, oncologists view medical and health news in the news media less favorably than the general public and cancer patients do. In addition, oncologists thought that it was difficult for cancer patients to understand and accurately interpret what was reported in the news media. This most likely reflects the personal experiences of oncologists because it is common for cancer patients to ask their physicians about medical and health information that they obtained elsewhere. Although oncologists are generally sensitive to patients’ needs in this area and expressed reservations about the quality of health information disseminated by the news media, they continue to face the challenge to adequately address these issues in their busy clinical practices. Most cancer patients and oncologists thought that patients who actively search for medical and health information are coping with their illness as well as those who do not. This assumption may not be true, however, as there have been conflicting observations. For instance, a recent study in women with newly diagnosed early-stage breast cancer revealed that those who initiated the use of alternative medicines after diagnosis had greater psychosocial distress and worse quality of life.19 Whether patients also turn to information searching to alleviate their distress needs to be studied further. Both cancer patients and oncologists agreed that information searching did not reflect a lack of trust in physicians and that it did not affect the patient-doctor relationship. Our survey is the first to look at the impact of medical and health information in the media and the Internet on the practice of oncology in Canada. There are several limitations to our study. First, the patient population in our survey is highly selected as indicated by the high percentages of patients who are white, female, use English as their first language, and had a high school education or beyond. The sample could be biased in that patients who seek information from various sources may be more likely to pick up and read a questionnaire in an ambulatory clinic. Secondly, as questionnaires were placed in outpatient clinics, it is possible that they were completed mostly by the healthier patients and less likely by those who were unwell, thus introducing another potential source of bias. In addition, family members or friends might have completed the questionnaires for patients, and such surrogate responses can have an impact on the accuracy of the data collected. Furthermore, we were not able to track how many patients actually read the cover letter and the questionnaire. Therefore, the actual response rate and refusal rate cannot be calculated. Similarly, physicians who completed the survey may be more interested in this topic than those who did not respond to our survey. It is difficult to explore this potential bias because we do not have access to the demographic information of physicians who did not return the questionnaire, nor can we determine whether the respondents to our survey were representative of all practicing Canadian oncologists. Finally, our questionnaires were designed such that they could be completed within a short period of time. As a result, there are many other aspects of the influence of the news media on patients and physicians that we were not able to explore in detail. As such, our results must be considered in the context of a first attempt in addressing this important subject. Future evaluations should build on our study and use more detailed questionnaires or more structured in-depth interviews. There are major differences in the delivery of cancer care between Canada and the United States. Novel and experimental therapies are generally less accessible in Canada than in the United States. Furthermore, chemotherapies are administered in hospitals in Canada. The cost of parental but not oral chemotherapeutic agents is paid for by provincial governments through hospital budgets. It is not possible for patients to purchase parental chemotherapeutic agents that are not covered by hospital budgets and have them administered by health care professionals in Canada. The limited access to novel and experimental therapies might have driven patients to actively search for alternative options available elsewhere and to pay more attention to medical and health news in Canada. Our study indicates that information is important to cancer patients in Canada and suggests that a large percentage of patients feel that their physicians and other health care workers provide inadequate information. Information searching is common in cancer patients. In addition, both patients and oncologists have concerns about medical and health news and information available from the Internet. Therefore, greater efforts should be made by oncologists and other health care providers toward improving patient education to provide accurate and up-to-date information to patients. In addition, there should be more guidance to the media to ensure that medical and health information released in the media and on the Internet is accurate, relevant, and unbiased.
We thank Ian Tannock, MD, PhD, and Joyce Nyhof-Young, PhD, PhD, for their helpful advice on the study and all Canadian physicians and patients who participated in this survey.
1. Meredity C, Symonds P, Webster L, et al: Information needs of cancer patients in west Scotland: Cross sectional survey of patient’s views. BMJ 313: 724-726, 1996 2. Fallowfield L, Ford S, Lewis S: Information preference of patients with cancer. Lancet 344: 1576, 1994 (letter) 3. Cassileth BR, Zupkis RV, Sutton-Smith K, et al: Information and participation preference among cancer patients. Ann Intern Med 92: 832-836, 1980 4. Roper Starch Worldwide Inc: American talk about science and medical news: The National Health Council Report. Harrison, NY, 1997
5.
Johnson T: Shattuck lecture: Medicine and the media. N Engl J Med 339: 87-92, 1998 6. Radford T: Influence and power of the media. Lancet 347: 1533-1535, 1996[Medline]
7.
Shuchman M, Wilkes MS: Medical scientists and health news reporting: A case of miscommunication. Ann Intern Med 126: 976-982, 1997 8. Nelkin D: An uneasy relationship: The tensions between medicine and the media. Lancet 347: 1600-1603, 1996[Medline]
9.
Moynihan R, Bero L, Ross-Degnan D: Coverage of the new media of the risks and benefits of medications. N Engl J Med 342: 1645-1650, 2000
10.
Steinbrook R: Medical journals and medical reporting. N Engl J Med 342: 1668-1671, 2000 11. Kolata G: A cautious awe greets drugs that eradicate tumors in mice. New York Times. May 3, 1998, sect 1:1 12. Hoffman-Goetz L, Clarke JN: Quality of breast cancer sites on the World Wide Web. Can J Public Health 91: 281-284, 2000[Medline] 13. Silberg WM, Lundberg GD, Musacchio RA: Assessing, controlling, and assuring the quality of medical information on the Internet: Caveant lector et viewor—Let the reader and viewer beware. JAMA 277: 1244-1245, 1997 (editorial)[Medline] 14. The Pew Internet and American Life Project: The online health care revolution: How the Web helps Americans take better care of themselves. Http://www.pewinternet.org. Accessed February 2001
15.
Martin S: Nearly a quarter of Canadians head online for health info. Can Med Assoc J 163: 1328, 2000 (letter)
16.
Winker MA, Flanagin A, Chi-Lum B, et al: Guidelines for medical and health information sites on the Internet: Principles governing AMA Web sites. JAMA 283: 1600-1601, 2000
17.
Eysenbach G, Diepgen TL: Towards quality management of medical information on the internet: Evaluation, labeling, and filtering of information. BMJ 317: 1496-1502, 1998 18. Kellerman SE, Herold J: Physician response to surveys: A review of the literature. Am J Prev Med 20: 61-67, 2001[Medline]
19.
Burstein HJ, Gelber S, Guadagnoli E, et al: Use of alternative medicine by women with early-stage breast cancer. N Engl J Med 340: 1733-1739, 2000 Submitted April 18, 2001; accepted July 20, 2001. This article has been cited by other articles:
|
|||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
|
|||||||||||
|
|||||||||||
|
|
Copyright © 2001 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
|
TOP
ABSTRACT
INTRODUCTION
2 statistics were calculated to assess the differences among patient groups. All P values were two sided. 
