J Canc Educ DOI 10.1007/s13187-013-0596-4
A Multilingual Assessment of Melanoma Information Quality on the Internet Lilla Bari & Lajos Kemeny & Ferenc Bari
# Springer Science+Business Media New York 2014
Abstract This study aims to assess and compare melanoma information quality in Hungarian, Czech, and German languages on the Internet. We used country-specific Google search engines to retrieve the first 25 uniform resource locators (URLs) by searching the word “melanoma” in the given language. Using the automated toolbar of Health On the Net Foundation (HON), we assessed each Web site for HON certification based on the Health On the Net Foundation Code of Conduct (HONcode). Information quality was determined using a 35-point checklist created by Bichakjian et al. (J Clin Oncol 20:134–141, 2002), with the NCCN melanoma guideline as control. After excluding duplicate and link-only pages, a total of 24 Hungarian, 18 Czech, and 21 German melanoma Web sites were evaluated and rated. The amount of HON certified Web sites was the highest among the German Web pages (19 %). One of the retrieved Hungarian and none of the Czech Web sites were HON certified. We found the highest number of Web sites containing comprehensive, correct melanoma information in German language, followed by Czech and Hungarian pages. Although the majority of the Web sites lacked data about incidence, risk factors, prevention, treatment, work-up, and follow-up, at least one comprehensive, high-quality Web site was found in each language. Several Web sites contained incorrect information in each language. While a small amount of comprehensive, quality melanomarelated Web sites was found, most of the retrieved Web content lacked basic disease information, such as risk factors, L. Bari : L. Kemeny Department of Dermatology and Allergology, Faculty of Medicine, University of Szeged, Szeged, Hungary F. Bari (*) Department of Medical Physics and Informatics, Faculty of Medicine, University of Szeged, Korányi fasor 9, Szeged 6720, Hungary e-mail: [email protected]
prevention, and treatment. A significant number of Web sites contained malinformation. In case of melanoma, primary and secondary preventions are of especially high importance; therefore, the improvement of disease information quality available on the Internet is necessary. Keywords Melanoma . Information quality . Internet . Primary and secondary prevention
Introduction Melanoma is one of the leading causes of cancer deaths in the young and middle-aged populations [1], with a steadily growing incidence worldwide [2]. Although advanced melanoma is a fatal disease with stable mortality rates [1, 3], early stages of the disease have excellent prognosis (http://emedicine. medscape.com/article/280245-overview), placing a crucial role on primary (avoidance of risk factors) and secondary prevention (screening). Searching for health- and diseaserelated information on the Internet has become common among Internet users [4]. Most of this information is uncontrolled [5], and the typical reader can find it difficult to identify and filter out quality, objective data. Bichakjian et al. have investigated the quality of melanoma information available on the Internet, focusing on the North American Englishspeaking population. They found that basic information (general aspects, risk factors, diagnosis, treatment, prevention, and prognosis) was often neglected or absent, and inaccuracies were common [6]. It has been previously reported that nonEnglish-speaking populations search the Internet predominantly in their native language [7]. In a 2001 study, Berland et al. [8] reported a difference in Web site quality in Englishand Spanish-speaking sites on breast cancer information, with deficiencies in the Spanish Web pages.
J Canc Educ
Several certification systems exist for indentifying quality and reliable health information on the Internet. The oldest and most frequently used multilingual code for ethical conduct for medical- and health-related information on the Internet is the Health On the Net Foundation Code of Conduct (HONcode), created by the Health On the Net Foundation (HON). Two recent comprehensive multilingual studies have demonstrated a lack of HON-validated oncologic sites and differences in oncologic health information quality among Western European languages [9, 10]. A multilingual evaluation of melanoma information quality on the Internet in Czech, Hungarian, and German languages has been, to this date, not reported. Based on preceding studies [9, 10], we hypothesize that although the amount of validated sites will be low, the contents will be of comparable quality. Assessing the quality of melanoma-related information available on the Internet in Czech, Hungarian, and German languages may help to identify and point out shortcomings and inaccuracies and eventually promote improvement of melanoma-related Web content quality.
Methods Among the various search engines, Google is the most popular (www.searchenginewatch.com) and has been previously used in other studies [11]. Using country-specific versions of Google search engines, we retrieved the first 25 universal/ uniform resource locators (URLs) by searching the word “melanoma” in the given language. Multiple Web sites were excluded. The retrieved URLs were screened for certificate of HON accreditation using the HONcode Toolbar (downloaded from www.hon.ch), and information content was assessed using a 35-point checklist developed and previously applied by Bichakjian et al. [6] (Table 1). The checklist is based on multispecialty consensus using the knowledge from the Michigan Multidisciplinary Melanoma Clinic (MDMC) and uses
the NCCN melanoma guideline as control. The searches occurred between April 1 and 10, 2013. Table 2 lists the retrieved Web sites in alphabetical order for the Internet version only.
Results HON Certification Four (19 %) of the examined German, one of the Hungarian (4 %), and none of the examined Czech Web pages were HON certified. Thirty-Five-Point Checklist German language Web sites contained the highest amount of correct information followed by Czech and Hungarian language Web pages; this trend was observed in most of the subcategories. General information, such as melanoma definition, incidence, signs and symptoms, and etiological role of sunshine, were mentioned most frequently, followed by risk factors, diagnosis, prevention, and treatment. These were reported in similar extent within a given language. Prognosis was poorly reported in each of the examined languages. None of the Czech and less than one quarter of the German Web sites provided such information. In the other subcategory factors, information about self or MD screening and epiluminescence were most frequently available on the examined Web sites. Non-cutaneous melanoma, follow-up, genetic testing/studies, emotional distress, and support groups were mostly ignored in the Hungarian and Czech Web pages, in contrary to German language URLs, where more than one third of the Web sites provided correct information. The risks associated with indoor tanning were reported by no greater than one third of the Web pages in each language. A significant number of Web sites contained
Table 1 Thirty-five-point checklist for assessing information quality Specified factor
General information (definition, incidence, signs/symptoms, etiology (sun)) Risk factors Diagnosis (3) Treatment (5) Prevention (3) Prognosis Other factors (12) Inaccuracies not classified elsewhere
Hungarian
Czech
German
Present Absent Present but inaccurate
Present Absent Present but inaccurate
Present Absent Present but inaccurate
33
63
4
54
44
2
67
32
1
25 14 15 25 8 16 17
74 83 84 75 92 84 83
1 3 1 0 0 0 0
33 22 32 28 0 18 11
67 78 67 72 100 82 89
0 0 1 0 0 0 0
50 46 57 41 24 37 5
50 54 43 59 76 63 95
0 0 0 0 0 0 0
J Canc Educ Table 2 List of the examined Web sites in alphabetical order
Table 2 (continued)
Hungarian betegszoba.hu/cikkek/daganatos_betegsegek/ a_melanoma_kockazatat_is_noveli_az_elhizasert_felelos_gen/ budaioltokozpont.hu/maganorvosi-centrum/szurovizsgalatok/ melanoma-szures daganatok.hu/melanoma drimmun.com/tumoros-megbetegedesek/melanoma.html egeszsegkalauz.hu/gyogyszerterapia/betegsegmodosito-szerrel-amelanoma-ellen-107395.html euromelanoma.org/hungary/risk-factors-malignant-melanoma-0 facebook.com/pages/Melan%C3%B3ma-Nap/101366353239901 femcafe.hu/cikkek/egeszseg/fontos-a-szures-a-melanoma-kialakulasaes-kezelese hirado.hu/Hirek/2013/02/12/15/ A_C_vitamin_hatasos_a_melanoma_es_a_mellrak.aspx hu.wikipedia.org/wiki/Melan%C3%B3ma hvg.hu/cimke/melan%C3%B3ma
wikiskripta.eu/index.php/Melanom zbynekmlcoch.cz/informace/medicina/video-fotografie-obrazek/jakvypada-melanom-fotografie-foto-obrazek-maligniho-melanomu zdravi.doktorka.cz/melanom-nejzhoubnejsi-nador-kuzi/ znamenka.biz/melanom/ zpravy.idnes.cz/lekari-maji-dve-nove-zbrane-proti-metastazujicimmelanomum-p4r-/domaci.aspx?c=A111017_193101_domaci_taj German apotheken-umschau.de/melanom awmf.org/leitlinien/detail/ll/032-024OL.html de.wikipedia.org/wiki/Malignes_Melanom dgho-onkopedia.de/de/onkopedia/leitlinien/melanom euromelanoma.org/germany/melanoma-0 fachklinik-hornheide.de/Malignes-Melanom.178.0.html flexikon-doccheck.com/de/melanom hauttumorzentrum-bochum.de/malignes-melanom-389.html icd-code.de/icd/code/C43.-.html klinikum.uni-muenster.de/index.php?id=3729 krebsgesellschaft.de/pat_ka_hautkrebs_melanom,107801.html krebsliga.ch/de/uber_krebs/krebsarten/hautkrebs/ melanom.de melanom.net melanom-wissen.de onmeda.de/krankheiten/melanom.html pharmawiki.ch/wiki/index.php?wiki=Melanom pharmazeutische-zeitung.de/?id=41099 sueddeutsche.de/gesundheit/krebs-frueherkennung-melanom-app1.1575215 tumorzentrum-freiburg.de/fachleute/klinisches-krebsregister/ dokumentation/kodierung/cccf-kkr-kodierhilfe-melanom.pdf ukb.uni-bonn.de/42256BC8002AF3E7/vwWebPagesByID/ 4FF4FB4FDCD50D59C12574070079117B
idegen-szavak.hu/melan%C3%B3ma immunet.hu/hu/filmek?tag=melan%C3%B3ma index.hu/tudomany/egeszseg/2013/02/12/cvitaminnal_a_melanoma_es_a_mellrak_ellen/ malenomanaplo.blogspot.cz/ melanomaszures.hu mno.hu/lanchidradio/majus-hetedike-a-melanoma-vilagnapja-kalauz1159118 netambulancia.hu/melanoma sopronkorhaz.hu/index.php?option=com_content&view= article&id=175&catid=94&Itemid=468 stop.hu/tudomany/a-c-vitamin-hatasos-a-melanoma-es-a-mellrakellen/1122538/ vargagyogygombak.hu videotar.mtv.hu/Videok/2013/04/11/12/Feny_es_melanoma.aspx videotar.mtv.hu/Videok/2013/05/06/22/ Duplajara_n_tt_a_melanoma_el_fordulasa_az_elmult_tiz.aspx webbeteg.hu/cikkek/borbetegsegek/5300/melanoma—gyanusanyajegy Czech blesk.cz/clanek/radce-zdravi-a-zivotni-styl-zdravi/195059/pribehterezy-16-melanom-jsem-mela-uz-ve-13-letech.html cs.wikipedia.org/wiki/Melanom domaci.eurozpravy.cz/zivot/68690-zhoubny-melanom-decimujecechy-nechte-se-zdarma-vysetrit/ chimare.cz/cz/co-lecime/kozni-nadory-melanom/ medonet.cz/l.php?id=108 melanomy.cz/ mou.cz/9-maligni-melanom/f96 mudrhenzl.info/melanom.html nemoci.vitalion.cz/melanom/ ona.idnes.cz/poradna-ceske-onkologicke-spolecnosti-cls-jep-f4n-/ poradna.asp?p=vorlicek2&t=1228 ovosan.eu slovnik-cizich-slov.abz.cz/web.php/slovo/melanom szskm.cz/melanom
incorrect information, most of which was found in Hungarian Web sites, followed by Czech and German URLs.
Discussion The Internet is an important source of health information for patients and the general public and has a proven role in aiding patients' medical decisions [12, 13]. Public awareness of melanoma has risen in the recent years, partially due to the emergence of international screening programs [14, 15]. It has been demonstrated that melanoma patients actively use the Internet to search for information about their diagnosis [13], and the Internet may be the first source of information for the healthy population before visiting a health professional. Despite its potentially significant public health role, only a few studies have assessed the quality of health information on the Internet [6, 10, 16–18]. Bichakjian and colleagues [6] created a 35-point checklist to investigate the quality of melanoma information in English language Web sites. They found that only 8 of the 35 points were present in at least half of the studied pages, melanoma definition being the most abundant, followed by prognosis, signs and symptoms,
J Canc Educ
etiology (sun), treatment (local surgery), diagnosis (tumor thickness, biopsy), and treatment (distant). Risk factors (with the exception of personal melanoma history) and prevention were mentioned in approximately one third of the evaluated sites. The other factors were poorly reported, and 14 % of the evaluated Web pages contained inaccuracies. Lawrentschuk et al. [10] performed a comprehensive multilingual study, evaluating and comparing malignancy Web sites of major Western European languages (English, German, French, and Spanish). They found that French sites had the highest percent of HON certification, followed by English, Spanish, and German Web pages. Specifically, regarding melanoma, English Web sites had the highest rate of HON accreditation followed by French, German, and Spanish. In our study, we had found a significant difference in the amount of German, Czech, and Hungarian Web sites that contain extensive, correct information based on the 35-point checklist [6]. The highest amount of correct and informative melanoma Web pages were found in German language. This could be explained by possibly different educational Web content fundings in the German language regions. Despite of this, we had found at least one high-quality Web site among the retrieved Czech and Hungarian URLs as well. The amount of HON-certified Web sites was surprisingly low. Although other certification systems were not reviewed in this study, one might speculate that a general lack of knowledge or direct motivation of Web site providers as well as pure marketing purposes could explain the fact that majority of the sites do not follow the HON principles. While HON does not filter the Internet for content quality, it guarantees a set of ethical standards in the presentation of information, enabling the readers to know the source and purpose of the provided information. Educating Web content providers, health professionals, and the general public about such systems and tools (free downloadable HONcode Toolbar, www.hon.ch/ HONtools/Patients/index.html) could be an important step towards improving health information quality on the Internet. Incorrect information was found in each of the investigated languages. While some of this malinformation may have a relatively small significance for the public (“Clark level means stage of the disease (http://www.nccn.org/patients/patient_ guidelines/melanoma), a good enough dermatologist is able to detect melanoma by simply looking at the lesion”), most of it could mislead and potentially harm the reader. Two similar content commercial Web sites that require distinct mention are the Hungarian sites www.max-immun.hu and www. vargagyogygombak.hu, operated by the same company, engaging in the production and distribution of dietary supplements. Videos found on these sites contain serious malinformation presented by the company owner, such as “melanoma is more common on non-sun-exposed skin surface (http://www.nccn.org/patients/patient_guidelines/ melanoma), melanoma is the most common cancer type in
the Caucasian population (http://seer.cancer.gov) and is not caused by sunshine but radio waves, sunshine has anticancer effect, and apigenin is a very strong anti-melanoma substance that prevents metastasis formation and destroys metastatic tumors” (http://www.nccn.org/patients/patient_guidelines/ melanoma; http://seer.cancer.gov; [19, 20]). The importance to filter out and correct such potentially very harmful and misleading information is evident but can be difficult to realize due to the highly unregulated and diverse nature of this medium. An important, but so far poorly studied aspect of patient education through the Internet is the population's variable level of knowledge and technologic skills, which highly influences the comprehension of the provided health information. A recent study by Marble et al. reports that melanoma patients acknowledge and prefer the incorporation of technology (DVDs, Internet, computer-based programs) into their education about melanoma [21]. While the relative ease of access, wide availability make the Web a powerful potential health-educating tool, it is difficult for the general public to identify and filter out correct, quality information. Based on our results, a major part of the retrieved German, Czech, and Hungarian melanoma Web sites lacked comprehensive correct disease information. This clearly indicates the need to improve melanoma-related Web content quality in these languages with the help of health professionals and certification systems, such as HON. In case of melanoma, prevention and early detection hold the key to effective disease control (http:// emedicine.medscape.com/article/280245-overview), which places a crucial role on patient education. Based on our findings as well as other findings [6, 9, 10], the Internet is a yet to be improved tool for effective patient education in the field of oncology. Acknowledgments This study was supported by the European Union and co-funded by the European Social Fund. Project title was “Telemedicine-focused research activities on the field of mathematics, informatics and medical sciences,” with project number: TÁMOP-4.2.2.A-11/1/ KONV-2012-0073.
References 1. Bosetti C, La Vecchia C, Naldi L, Lucchini F, Negri E, Levi F (2004) Mortality from cutaneous malignant melanoma in Europe. Has the epidemic levelled off? Melanoma Res 14:301–309 2. Garbe C, Leiter U (2009) Melanoma epidemiology and trends. Clin Dermatol 27:3–9 3. Forsea AM, del Marmol V, de Vries E, Bailey EE, Geller AC (2012) Melanoma incidence and mortality in Europe: new estimates, persistent disparities. Br J Dermatol 67:1124–1130 4. Risk A, Dzenowagis J (2001) Review of Internet health information quality initiatives. J Med Internet Res 3:E28 5. Babamiri K, Nassab RS (2010) The availability and content analysis of melanoma information on YouTube. Plast Reconstr Surg 126:51e– 52e
J Canc Educ 6. Bichakjian CK, Schwartz LJ, Wang TS, Hall JM, Johnson TM, Biermann JS (2002) Melanoma information on the Internet: often incomplete—a public health opportunity. J Clin Oncol 20:134–141 7. Singh PM, Wight CA, Sercinoglu O, Wilasn DC, Boytsov A, Raizada MN (2007) Language preferences on websites and in Google searches for human health and food information. J Med Internet Res 9:e18 8. Berland GK, Elliott MN, Morales LS et al (2001) Health information on the Internet: accessibility, quality, and readability in English and Spanish. JAMA 285:2612–2621 9. Lawrentschuk N, Abouassaly R, Hackett N, Groll R, Fleshner NE (2009) Health information quality on the Internet in urological oncology: a multilingual longitudinal evaluation. Urology 74:1058–1063 10. Lawrentschuk N, Sasges D, Tasevski R, Abouassaly R, Scott AM, Davis ID (2012) Oncology health information quality on the Internet: a multilingual evaluation. Ann Surg Oncol 19:706–713 11. Kaimal AJ, Cheng YW, Bryant AS, Norton ME, Shaffer BL, Caughey AB (2008) Google obstetrics: who is educating our patients? Am J Obstet Gynecol 198:e1–e5 12. Couper MP, Singer E, Levin CA, Fowler FJ Jr, Fagerlin A, ZikmundFisher BJ (2010) Use of the Internet and ratings of information sources for medical decisions: results from the DECISIONS survey. Med Decis Mak 30:106S–114S 13. Ludgate MW, Sabel MS, Fullen DR, Frohm ML, Lee JS, Couper MP, Johnson TM, Bichakjian CK (2011) Internet use and anxiety in
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A Multilingual Assessment of Melanoma Information Quality on the Internet Lilla Bari & Lajos Kemeny & Ferenc Bari
# Springer Science+Business Media New York 2014
Abstract This study aims to assess and compare melanoma information quality in Hungarian, Czech, and German languages on the Internet. We used country-specific Google search engines to retrieve the first 25 uniform resource locators (URLs) by searching the word “melanoma” in the given language. Using the automated toolbar of Health On the Net Foundation (HON), we assessed each Web site for HON certification based on the Health On the Net Foundation Code of Conduct (HONcode). Information quality was determined using a 35-point checklist created by Bichakjian et al. (J Clin Oncol 20:134–141, 2002), with the NCCN melanoma guideline as control. After excluding duplicate and link-only pages, a total of 24 Hungarian, 18 Czech, and 21 German melanoma Web sites were evaluated and rated. The amount of HON certified Web sites was the highest among the German Web pages (19 %). One of the retrieved Hungarian and none of the Czech Web sites were HON certified. We found the highest number of Web sites containing comprehensive, correct melanoma information in German language, followed by Czech and Hungarian pages. Although the majority of the Web sites lacked data about incidence, risk factors, prevention, treatment, work-up, and follow-up, at least one comprehensive, high-quality Web site was found in each language. Several Web sites contained incorrect information in each language. While a small amount of comprehensive, quality melanomarelated Web sites was found, most of the retrieved Web content lacked basic disease information, such as risk factors, L. Bari : L. Kemeny Department of Dermatology and Allergology, Faculty of Medicine, University of Szeged, Szeged, Hungary F. Bari (*) Department of Medical Physics and Informatics, Faculty of Medicine, University of Szeged, Korányi fasor 9, Szeged 6720, Hungary e-mail: [email protected]
prevention, and treatment. A significant number of Web sites contained malinformation. In case of melanoma, primary and secondary preventions are of especially high importance; therefore, the improvement of disease information quality available on the Internet is necessary. Keywords Melanoma . Information quality . Internet . Primary and secondary prevention
Introduction Melanoma is one of the leading causes of cancer deaths in the young and middle-aged populations [1], with a steadily growing incidence worldwide [2]. Although advanced melanoma is a fatal disease with stable mortality rates [1, 3], early stages of the disease have excellent prognosis (http://emedicine. medscape.com/article/280245-overview), placing a crucial role on primary (avoidance of risk factors) and secondary prevention (screening). Searching for health- and diseaserelated information on the Internet has become common among Internet users [4]. Most of this information is uncontrolled [5], and the typical reader can find it difficult to identify and filter out quality, objective data. Bichakjian et al. have investigated the quality of melanoma information available on the Internet, focusing on the North American Englishspeaking population. They found that basic information (general aspects, risk factors, diagnosis, treatment, prevention, and prognosis) was often neglected or absent, and inaccuracies were common [6]. It has been previously reported that nonEnglish-speaking populations search the Internet predominantly in their native language [7]. In a 2001 study, Berland et al. [8] reported a difference in Web site quality in Englishand Spanish-speaking sites on breast cancer information, with deficiencies in the Spanish Web pages.
J Canc Educ
Several certification systems exist for indentifying quality and reliable health information on the Internet. The oldest and most frequently used multilingual code for ethical conduct for medical- and health-related information on the Internet is the Health On the Net Foundation Code of Conduct (HONcode), created by the Health On the Net Foundation (HON). Two recent comprehensive multilingual studies have demonstrated a lack of HON-validated oncologic sites and differences in oncologic health information quality among Western European languages [9, 10]. A multilingual evaluation of melanoma information quality on the Internet in Czech, Hungarian, and German languages has been, to this date, not reported. Based on preceding studies [9, 10], we hypothesize that although the amount of validated sites will be low, the contents will be of comparable quality. Assessing the quality of melanoma-related information available on the Internet in Czech, Hungarian, and German languages may help to identify and point out shortcomings and inaccuracies and eventually promote improvement of melanoma-related Web content quality.
Methods Among the various search engines, Google is the most popular (www.searchenginewatch.com) and has been previously used in other studies [11]. Using country-specific versions of Google search engines, we retrieved the first 25 universal/ uniform resource locators (URLs) by searching the word “melanoma” in the given language. Multiple Web sites were excluded. The retrieved URLs were screened for certificate of HON accreditation using the HONcode Toolbar (downloaded from www.hon.ch), and information content was assessed using a 35-point checklist developed and previously applied by Bichakjian et al. [6] (Table 1). The checklist is based on multispecialty consensus using the knowledge from the Michigan Multidisciplinary Melanoma Clinic (MDMC) and uses
the NCCN melanoma guideline as control. The searches occurred between April 1 and 10, 2013. Table 2 lists the retrieved Web sites in alphabetical order for the Internet version only.
Results HON Certification Four (19 %) of the examined German, one of the Hungarian (4 %), and none of the examined Czech Web pages were HON certified. Thirty-Five-Point Checklist German language Web sites contained the highest amount of correct information followed by Czech and Hungarian language Web pages; this trend was observed in most of the subcategories. General information, such as melanoma definition, incidence, signs and symptoms, and etiological role of sunshine, were mentioned most frequently, followed by risk factors, diagnosis, prevention, and treatment. These were reported in similar extent within a given language. Prognosis was poorly reported in each of the examined languages. None of the Czech and less than one quarter of the German Web sites provided such information. In the other subcategory factors, information about self or MD screening and epiluminescence were most frequently available on the examined Web sites. Non-cutaneous melanoma, follow-up, genetic testing/studies, emotional distress, and support groups were mostly ignored in the Hungarian and Czech Web pages, in contrary to German language URLs, where more than one third of the Web sites provided correct information. The risks associated with indoor tanning were reported by no greater than one third of the Web pages in each language. A significant number of Web sites contained
Table 1 Thirty-five-point checklist for assessing information quality Specified factor
General information (definition, incidence, signs/symptoms, etiology (sun)) Risk factors Diagnosis (3) Treatment (5) Prevention (3) Prognosis Other factors (12) Inaccuracies not classified elsewhere
Hungarian
Czech
German
Present Absent Present but inaccurate
Present Absent Present but inaccurate
Present Absent Present but inaccurate
33
63
4
54
44
2
67
32
1
25 14 15 25 8 16 17
74 83 84 75 92 84 83
1 3 1 0 0 0 0
33 22 32 28 0 18 11
67 78 67 72 100 82 89
0 0 1 0 0 0 0
50 46 57 41 24 37 5
50 54 43 59 76 63 95
0 0 0 0 0 0 0
J Canc Educ Table 2 List of the examined Web sites in alphabetical order
Table 2 (continued)
Hungarian betegszoba.hu/cikkek/daganatos_betegsegek/ a_melanoma_kockazatat_is_noveli_az_elhizasert_felelos_gen/ budaioltokozpont.hu/maganorvosi-centrum/szurovizsgalatok/ melanoma-szures daganatok.hu/melanoma drimmun.com/tumoros-megbetegedesek/melanoma.html egeszsegkalauz.hu/gyogyszerterapia/betegsegmodosito-szerrel-amelanoma-ellen-107395.html euromelanoma.org/hungary/risk-factors-malignant-melanoma-0 facebook.com/pages/Melan%C3%B3ma-Nap/101366353239901 femcafe.hu/cikkek/egeszseg/fontos-a-szures-a-melanoma-kialakulasaes-kezelese hirado.hu/Hirek/2013/02/12/15/ A_C_vitamin_hatasos_a_melanoma_es_a_mellrak.aspx hu.wikipedia.org/wiki/Melan%C3%B3ma hvg.hu/cimke/melan%C3%B3ma
wikiskripta.eu/index.php/Melanom zbynekmlcoch.cz/informace/medicina/video-fotografie-obrazek/jakvypada-melanom-fotografie-foto-obrazek-maligniho-melanomu zdravi.doktorka.cz/melanom-nejzhoubnejsi-nador-kuzi/ znamenka.biz/melanom/ zpravy.idnes.cz/lekari-maji-dve-nove-zbrane-proti-metastazujicimmelanomum-p4r-/domaci.aspx?c=A111017_193101_domaci_taj German apotheken-umschau.de/melanom awmf.org/leitlinien/detail/ll/032-024OL.html de.wikipedia.org/wiki/Malignes_Melanom dgho-onkopedia.de/de/onkopedia/leitlinien/melanom euromelanoma.org/germany/melanoma-0 fachklinik-hornheide.de/Malignes-Melanom.178.0.html flexikon-doccheck.com/de/melanom hauttumorzentrum-bochum.de/malignes-melanom-389.html icd-code.de/icd/code/C43.-.html klinikum.uni-muenster.de/index.php?id=3729 krebsgesellschaft.de/pat_ka_hautkrebs_melanom,107801.html krebsliga.ch/de/uber_krebs/krebsarten/hautkrebs/ melanom.de melanom.net melanom-wissen.de onmeda.de/krankheiten/melanom.html pharmawiki.ch/wiki/index.php?wiki=Melanom pharmazeutische-zeitung.de/?id=41099 sueddeutsche.de/gesundheit/krebs-frueherkennung-melanom-app1.1575215 tumorzentrum-freiburg.de/fachleute/klinisches-krebsregister/ dokumentation/kodierung/cccf-kkr-kodierhilfe-melanom.pdf ukb.uni-bonn.de/42256BC8002AF3E7/vwWebPagesByID/ 4FF4FB4FDCD50D59C12574070079117B
idegen-szavak.hu/melan%C3%B3ma immunet.hu/hu/filmek?tag=melan%C3%B3ma index.hu/tudomany/egeszseg/2013/02/12/cvitaminnal_a_melanoma_es_a_mellrak_ellen/ malenomanaplo.blogspot.cz/ melanomaszures.hu mno.hu/lanchidradio/majus-hetedike-a-melanoma-vilagnapja-kalauz1159118 netambulancia.hu/melanoma sopronkorhaz.hu/index.php?option=com_content&view= article&id=175&catid=94&Itemid=468 stop.hu/tudomany/a-c-vitamin-hatasos-a-melanoma-es-a-mellrakellen/1122538/ vargagyogygombak.hu videotar.mtv.hu/Videok/2013/04/11/12/Feny_es_melanoma.aspx videotar.mtv.hu/Videok/2013/05/06/22/ Duplajara_n_tt_a_melanoma_el_fordulasa_az_elmult_tiz.aspx webbeteg.hu/cikkek/borbetegsegek/5300/melanoma—gyanusanyajegy Czech blesk.cz/clanek/radce-zdravi-a-zivotni-styl-zdravi/195059/pribehterezy-16-melanom-jsem-mela-uz-ve-13-letech.html cs.wikipedia.org/wiki/Melanom domaci.eurozpravy.cz/zivot/68690-zhoubny-melanom-decimujecechy-nechte-se-zdarma-vysetrit/ chimare.cz/cz/co-lecime/kozni-nadory-melanom/ medonet.cz/l.php?id=108 melanomy.cz/ mou.cz/9-maligni-melanom/f96 mudrhenzl.info/melanom.html nemoci.vitalion.cz/melanom/ ona.idnes.cz/poradna-ceske-onkologicke-spolecnosti-cls-jep-f4n-/ poradna.asp?p=vorlicek2&t=1228 ovosan.eu slovnik-cizich-slov.abz.cz/web.php/slovo/melanom szskm.cz/melanom
incorrect information, most of which was found in Hungarian Web sites, followed by Czech and German URLs.
Discussion The Internet is an important source of health information for patients and the general public and has a proven role in aiding patients' medical decisions [12, 13]. Public awareness of melanoma has risen in the recent years, partially due to the emergence of international screening programs [14, 15]. It has been demonstrated that melanoma patients actively use the Internet to search for information about their diagnosis [13], and the Internet may be the first source of information for the healthy population before visiting a health professional. Despite its potentially significant public health role, only a few studies have assessed the quality of health information on the Internet [6, 10, 16–18]. Bichakjian and colleagues [6] created a 35-point checklist to investigate the quality of melanoma information in English language Web sites. They found that only 8 of the 35 points were present in at least half of the studied pages, melanoma definition being the most abundant, followed by prognosis, signs and symptoms,
J Canc Educ
etiology (sun), treatment (local surgery), diagnosis (tumor thickness, biopsy), and treatment (distant). Risk factors (with the exception of personal melanoma history) and prevention were mentioned in approximately one third of the evaluated sites. The other factors were poorly reported, and 14 % of the evaluated Web pages contained inaccuracies. Lawrentschuk et al. [10] performed a comprehensive multilingual study, evaluating and comparing malignancy Web sites of major Western European languages (English, German, French, and Spanish). They found that French sites had the highest percent of HON certification, followed by English, Spanish, and German Web pages. Specifically, regarding melanoma, English Web sites had the highest rate of HON accreditation followed by French, German, and Spanish. In our study, we had found a significant difference in the amount of German, Czech, and Hungarian Web sites that contain extensive, correct information based on the 35-point checklist [6]. The highest amount of correct and informative melanoma Web pages were found in German language. This could be explained by possibly different educational Web content fundings in the German language regions. Despite of this, we had found at least one high-quality Web site among the retrieved Czech and Hungarian URLs as well. The amount of HON-certified Web sites was surprisingly low. Although other certification systems were not reviewed in this study, one might speculate that a general lack of knowledge or direct motivation of Web site providers as well as pure marketing purposes could explain the fact that majority of the sites do not follow the HON principles. While HON does not filter the Internet for content quality, it guarantees a set of ethical standards in the presentation of information, enabling the readers to know the source and purpose of the provided information. Educating Web content providers, health professionals, and the general public about such systems and tools (free downloadable HONcode Toolbar, www.hon.ch/ HONtools/Patients/index.html) could be an important step towards improving health information quality on the Internet. Incorrect information was found in each of the investigated languages. While some of this malinformation may have a relatively small significance for the public (“Clark level means stage of the disease (http://www.nccn.org/patients/patient_ guidelines/melanoma), a good enough dermatologist is able to detect melanoma by simply looking at the lesion”), most of it could mislead and potentially harm the reader. Two similar content commercial Web sites that require distinct mention are the Hungarian sites www.max-immun.hu and www. vargagyogygombak.hu, operated by the same company, engaging in the production and distribution of dietary supplements. Videos found on these sites contain serious malinformation presented by the company owner, such as “melanoma is more common on non-sun-exposed skin surface (http://www.nccn.org/patients/patient_guidelines/ melanoma), melanoma is the most common cancer type in
the Caucasian population (http://seer.cancer.gov) and is not caused by sunshine but radio waves, sunshine has anticancer effect, and apigenin is a very strong anti-melanoma substance that prevents metastasis formation and destroys metastatic tumors” (http://www.nccn.org/patients/patient_guidelines/ melanoma; http://seer.cancer.gov; [19, 20]). The importance to filter out and correct such potentially very harmful and misleading information is evident but can be difficult to realize due to the highly unregulated and diverse nature of this medium. An important, but so far poorly studied aspect of patient education through the Internet is the population's variable level of knowledge and technologic skills, which highly influences the comprehension of the provided health information. A recent study by Marble et al. reports that melanoma patients acknowledge and prefer the incorporation of technology (DVDs, Internet, computer-based programs) into their education about melanoma [21]. While the relative ease of access, wide availability make the Web a powerful potential health-educating tool, it is difficult for the general public to identify and filter out correct, quality information. Based on our results, a major part of the retrieved German, Czech, and Hungarian melanoma Web sites lacked comprehensive correct disease information. This clearly indicates the need to improve melanoma-related Web content quality in these languages with the help of health professionals and certification systems, such as HON. In case of melanoma, prevention and early detection hold the key to effective disease control (http:// emedicine.medscape.com/article/280245-overview), which places a crucial role on patient education. Based on our findings as well as other findings [6, 9, 10], the Internet is a yet to be improved tool for effective patient education in the field of oncology. Acknowledgments This study was supported by the European Union and co-funded by the European Social Fund. Project title was “Telemedicine-focused research activities on the field of mathematics, informatics and medical sciences,” with project number: TÁMOP-4.2.2.A-11/1/ KONV-2012-0073.
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