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© 2002 American Society for Clinical Oncology Melanoma Information on the Internet: Often Incomplete—A Public Health Opportunity?ByFrom the Departments of Dermatology, Orthopaedic Surgery, Otolaryngology, and Surgery (Division of Plastic Surgery), University of Michigan Health System, Ann Arbor, MI. Address reprint requests to J. Sybil Biermann, MD, 7304 Cancer Center, Box 0946, University of Michigan Hospital, 1500 E Medical Center Dr, Ann Arbor, MI 48109-0946; email: biermann{at}umich.edu
PURPOSE: To assess the accuracy and completeness of information regarding melanoma on the Internet, retrieved by use of search engines. METHODS: The first 30 uniform/universal resource locators (URLs) from each of eight search engines using the search term "melanoma" were retrieved for evaluation of accuracy and completeness using a 35-point checklist rating system instrument. Four reviewers independently rated each of 35 sites, and one reviewer rated all 74 assessable sites. Kappa statistics were used to evaluate interrater variability. RESULTS: A total of 74 assessable Web sites were evaluated. The remainder were inaccessible, link pages only, or duplicates. Thirty-five Web sites were each independently rated by four reviewers. The remaining 39 Web sites were each rated by one reviewer. The mean kappa statistic for all variables and all rater pairs for which a kappa could be calculated was 0.824, indicating excellent overall inter-rater reliability. The majority of Web sites failed to include complete information on general information, risk factors, diagnosis, treatment, prevention, and prognosis. Ten Web sites (14%) contained a total of 13 inaccuracies, most relatively minor. CONCLUSION: Medical information retrieved with the search term melanoma was likely to lack complete basic melanoma information and contained inaccuracies in 14% of sites. Health care providers can help patients by recommending comprehensive and accurate Web sites for patient review, by working to create accurate and thorough Web-based health information material, and by educating patients and the public about the variability in completeness and accuracy.
A NEW DIAGNOSIS of cancer, especially a type associated with potentially high morbidity and mortality, is unwelcome news to both the affected individuals and those close to them. Patients may initially respond to their diagnosis in a variety of ways, including denial, fear, anxiety, and depression. Numerous questions often arise regarding the natural history of the disease, treatment options, and prognosis. Also, family members and friends are frequently interested in risk factors, prevention, genetics, and emotional support. There are relatively few reports that critically examine where patients, family members, and friends acquire information. Additionally, measurements of the quantity, quality, and effects of this information are found in few reports.1-6 Variability in the quantity and quality of information available to the public is, of no surprise, considerable given the number of different media sources, such as lay press, television, videotapes, and the Internet. Additionally, in the overwhelming majority of cases, these variable information sources are not directly linked to the patients’ health care providers. Therefore, it is common that inconsistencies regarding the information on the disease, treatment, and prognosis lead to questions and/or concerns for the patient. Regular weekly Internet users now comprise 40% of the United States population, and searching for health information is common.7 Half of the people who have used the Internet to obtain health and medical information say this information has improved the way they take care of themselves and many report that online information has directly affected their decisions about how to treat illness and deal with their doctors.8 Melanoma is a potentially deadly form of cancer, affecting a disproportionate number of young, Internet-savvy adults, with an incidence increasing faster than any other type of cancer.9 New and continually changing information regarding melanoma is the norm.10 Clearly identified prevention strategies are known that can reduce the risk of melanoma. Several risk factors for the development of melanoma similarly have been identified.11-13 Diagnosis, treatment, and prognostic information continues to evolve and change. Several other factors, such as potential dangers of tanning booth use, dealing with emotional distress, and the importance of self examinations and screening, are important for any patient and family member. The use of prevention strategies and the identification of persons at higher risk requires education of patients with melanoma and their families as well as the general public. The Internet is one such potential educator. In this study, we critically examined Internet information that patients and the public might retrieve in real-life situations.
We first retrieved information regarding the relative frequency of use of search engines and selected the six search engines that were used most frequently. Additionally, we selected two medical search engines.14 These eight engines formed the basis of our study and are listed in Table 1, along with the number of accessible sites that each generated. Using a method modified from Biermann et al,15 we used each search engine to retrieve the first 30 uniform/universal resource locators (URLs) by searching the term "melanoma." Access to each URL was then attempted (n = 240). Web sites from the URLs were identified, and the actual web page retrieved was evaluated for content. A total of 74 Web sites were assessable and are listed alphabetically in Table 2. The remainder were inaccessible, link pages only, or duplicates. The searches occurred between July 2 and 8, 2000.
Development of Checklist Rating System Instrument Based on multispecialty consensus using the knowledge from the University of Michigan Multidisciplinary Melanoma Clinic (MDMC), a 35-point checklist rating system (Table 3) was developed to assess for and extract the most basic information related to general information about melanoma, risk factors, diagnosis, treatment, prevention, prognosis, and other factors. The gold standard for information was a 20-page consensus handout used for health care provider information and education and the current National Comprehensive Cancer Network melanoma guidelines.10,16
Reliability of Ratings Three of the four raters were faculty members in the MDMC and the fourth was a senior dermatology resident with 2 years of specialty training in the MDMC. To determine whether the rating system would produce valid and reliable data, 35 Web sites were independently evaluated by all four raters and the level of agreement across all rater pairs for each of the 35 evaluated factors of the checklist rating system was computed using Cohen’s kappa statistic. Any mention of a specific factor was scored as present, regardless of quantity of information related to the factor.
Descriptive Statistics
Reliability of Ratings The mean kappa statistic for all variables and all rater pairs for which a kappa statistic could be calculated was 0.824 (Table 4). This represents excellent overall inter-rater agreement. Thirteen of the rated factors had mean kappas statistics greater than 0.90, and three had perfect agreement across raters. Eleven factors had mean kappa statistics between 0.8 and 0.89, and six factors had mean kappa statistics between 0.70 and 0.79. Five factors had kappa statistics less than 0.70, indicating marginal to poor agreement, including solicitation, support groups, genetic testing, prognosis, and other inaccuracies. After initial ratings, all inaccuracies were again reviewed by all four raters together with revision and perfect agreement across raters.
Descriptive Statistics A complete list of each rating system factor with frequency found is listed in Table 3. Of the 35 factors that comprised the rating system (Table 3), only eight factors (24%) were present on at least 50% of the evaluated sites. The definition of melanoma occurred the most frequently, on 46 sites (62%). Prognosis was the second most frequently included factor, mentioned on 44 sites (59%). The other factors found on at least half of the evaluated sites were signs and symptoms (41 sites, 55%); etiology–sun (39 sites, 53%); treatment–local surgery (39 sites, 53%); diagnosis–tumor thickness (39 sites, 53%); treatment–distant (38 sites, 51%); and diagnosis–biopsy (37 sites, 50%). Factors related to prevention were present on only approximately one third of the evaluated sites, with sunscreen mentioned on 27 sites (36%), hat/clothing mentioned on 25 sites (34%), and midday sun avoidance mentioned on 23 sites (31%). Risk factors were mentioned in fewer than 50% of the sites, including sunburn (35 sites, 47%), fair skin/hair/eyes (30 sites, 41%), dysplastic nevi (25 sites, 34%), normal nevi (24 sites, 32%), family history (30 sites, 40%), and personal history (16 sites, 22%). Factors that were mentioned on fewer than 25% of the evaluated sites included epiluminescence (four sites, 5%), pregnancy/hormones (seven sites, 9%), alternative medicine (10 sites, 14%), mucosal/vaginal melanoma (12 sites, 16%), work-up (16 sites, 22%), monetary or other solicitation (15 sites, 20%), risk factors–personal history (16 sites, 22%), treatment–sentinel lymph node biopsy (17 sites, 23%), diagnosis–other histologic parameters (17 sites, 23%), and follow-up (18 sites, 24%). Factual inaccuracies are listed in Table 5. We noted a total of 13 inaccuracies in 10 (14%) of the 74 Web sites evaluated. Melanoma incidence was the single factor most frequently rated as present but inaccurate, with three sites (4%) misreporting melanoma incidence. Other inaccuracies included work-up in two sites (3%); local surgery, regional surgery, sentinel lymph node biopsy, and follow-up in one site (1%) each. Inaccuracies not classified elsewhere were present in four sites (5%).
Quality of medical information on the Internet has been a topic of discussion.17 Previous investigations have shown a relatively low rate of inaccuracy in the area of Ewing’s sarcoma.15 To our knowledge, there have been no previous reports reviewing melanoma information on the Internet. Most patients who search for medical information on a specific disease are likely to do so because they or someone close to them has been diagnosed with the disease. It is likely in the case of melanoma that this is true as well. The need for current, up-to-date information and dissemination of this information is great. All patients with a diagnosis of invasive melanoma are at an increased risk for development of additional primary melanomas and metastasis (22% of Web sites reported).11-13,18,19 All first-degree relatives are also at increased risk (40% reported), as are individuals with a history of sunburn (47% reported), fair skin/eyes/hair color (41% reported), dysplastic nevi (34% reported), or more than 50 normal nevi in children and more than 100 normal nevi in adults (32% reported).20-22 The prognosis for melanoma ranges from a theoretical 0% to 100% 5-year survival rate, which is dependent on the stage of disease (59% reported).23 Early detection is key and can be greatly increased with a limited amount of basic knowledge.24-28 Cutaneous melanoma detection is facilitated by the fact that it occurs on the skin where patients, family members, friends, and health care providers can see it. The earliest sign of a melanoma is a change in the size, shape, or color of a lesion.29,30 The earliest symptom, although less common, is persistent itching in a lesion. Armed with this limited basic information, early detection is easier (55% reported). Visual figures that should be especially helpful were found in 31% of sites. Prevention of melanoma was poorly reported. Approximately 80% of an individual’s lifetime sun exposure occurs before the age of 20 years. Basic information on prevention includes wearing hats and clothing (34% reported), midday sun avoidance (31% reported), and sunscreen use (36% reported). Sun as an etiology was reported in 53% of sites and possible dangers of tanning booths in 30%.31,32 Tumor thickness measured in millimeters is the single most important factor that determines treatment, prognosis, and follow-up guidelines.23,31 This factor was reported in 53% of sites. Other adverse histologic parameters associated with a poorer prognosis, such as ulceration, were reported in 23% of sites. Treatment was reported in 53% of sites for local disease (surgery), 43% for regional (surgery), and 51% for distant disease. The use of sentinel lymph node biopsy and adjuvant interferon has evolved over the past decade and was reported in only 23% and 34% of sites, respectively.33 If the Internet is to fulfill its potential in disseminating information with the goal of improved public health, much of this basic information should be present. Other important facets of basic information poorly reported were self/health care provider screening (38%), work-up (22%), and support groups/emotional distress (30%).34-37 Five percent of sites mentioned epiluminescence, a new and evolving diagnostic technique. Solicitation for monetary donations or to buy products was found in 20% of sites. Alternative medicine was mentioned in 14% of sites. Fourteen percent of sites had information that was erroneous. Although many errors were relatively minor, some were considerably more dangerous. One site stated that incisional or punch biopsy promotes metastasis (Web site [WS] no. 43). Two sites recommended multiple screening tests at more frequent intervals than currently recommended (WS nos. 29 and 13).10,16 Elective lymphadenectomy is not routinely recommended as one site mentioned (WS no. 29), and an explanation of sentinel lymph node biopsy was incorrect in another site (WS no. 71).33 One site stated that melanoma is the only fatal form of skin cancer (WS no. 5). Staging was incorrect in one site (WS no. 60), and a 3-cm margin was recommended for a lesion 1.5-mm in thickness (WS no. 71). Margins of 1 to 2 cm are appropriate for a melanoma 1.5-mm thick.10,16,38,39 One site stated that melanoma is 100% curable if treated before the vertical growth phase (WS no. 50). Any invasive melanoma may be lethal, and reports of thin radial growth phase lesions with subsequent metastasis exist.31 Finally, three sites (WS nos. 20, 23, and 44) erroneously reported melanoma incidence. These sites reported one in 75 people in the United States will get melanoma in the year 2000 rather than correctly stating that one person in 75 born in the United States in the year 2000 will develop melanoma in their lifetime.40 Even subtle errors have the potential to create doubt or mistrust if the patient receives conflicting information from their physician and the Internet. One Web site deserves mention, that of the National Cancer Institute (www.nci.nih.gov). This peer-reviewed site presents a balanced perspective on melanoma, including the risk factors, prevention strategies, treatment, diagnosis, and prognosis. Nearly all of the 35 factors we rated were present. We found no inaccuracies. This site demonstrates that comprehensive and accurate sites are, in fact, possible to create and maintain. The Internet offers the opportunity to use unique educational tools in addition to the conventional verbi-age and pictures. None of the sites reviewed in this study used innovative visual aids such as videos. An example of a Web site video to increase patient infor-mation can be found at our institution’s Web site (Http://www.cancer.med.umich.edu/clinic/melvideo.htm). Health care providers have not only an opportunity but also a responsibility to ensure that patients who use the Internet have access to good Web content to help our patients understand their disease and treatment options. This is also important to help decrease disease incidence through prevention and increase early detection in the population at large through education. The low percentage of retrieved Web sites that mention most of the basic information pertaining to general information, risk factors, diagnosis, treatment, prevention, prognosis, and other factors indicates that we have much to do. Physicians can contribute by providing content. For example, the American Society of Clinical Oncology (ASCO) (Http://www.asco.org) has published patient guides that basically translate the evidence-based, peer-reviewed ASCO guidelines into lay terms. They also have a diagnosis-based search mechanism for patient information on the ASCO Web site. We can also help by recommending Web sites to our patients. Nearly two thirds of the URLs in this study lead to dead ends, inaccessible material, link pages only, or duplications. By proactively helping our patients find accurate Web information, we can eliminate their wasted efforts and ensure that they are directed to thorough, comprehensive sites. We can also work to improve the public awareness of the variability of sites and the importance of critical evaluation of Internet material. Time with our patients has become increasingly pressured, with increasing external demands from insurers, employers, and health maintenance organizations. However, a few minutes spent with patients to direct them to appropriate sites, and even a brief explanation of why those sites may be better, may result in more efficient and thorough patient education. Interestingly enough, several high-quality sites did not surface in our study. Inclusion by a search engine or directory is related only in part to actual content of a site and is largely due to factors such as use of metatags and active registration of the site with specific search engines or directories. Table 6 lists the top five sites retrieved from the searches used in this study that had the highest number of factors present from our checklist.
In conclusion, melanoma Web sites retrieved by search engines in this study often neglected to mention much of the basic information pertaining to general aspects, risk factors, diagnosis, treatment, prevention, and prognosis. Other factors of interest were also infrequently mentioned. Additionally, inaccuracies were identified in 14% of the Web sites. Health care providers have an opportunity to contribute to patient education by recommending Web sites that are comprehensive and accurate and by working with their professional organizations to create content for and ensure accuracy of Web sites.
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Copyright © 2002 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
