Journal of Public Health Advance Access originally published online on June 29, 2006
Journal of Public Health 2006 28(3):235-237; doi:10.1093/pubmed/fdl019
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Patients’ characteristics and rate of Internet use to obtain cancer information
Julien Mancini, MD, MSc1,2
Catherine Noguès, MD3
Claude Adenis, MD4
Pascaline Berthet, MD5
Valérie Bonadona, MD6
Agnès Chompret, MD7
Isabelle Coupier, MD8
François Eisinger, MD, MSc9,10
Jean-Pierre Fricker, MD11
Marion Gauthier-Villars, MD8
Christine Lasset, MD6
Alain Lortholary, MD12
Tan Dat N’Guyen, MD13
Philippe Vennin, MD4
Hagay Sobol, MD, PhD9,10
Dominique Stoppa-Lyonnet, MD, PhD8
Claire Julian-Reynier, MD, MSc1
1 INSERM UMR379, Epidemiology and Social Sciences Unit, Institut Paoli-Calmettes, 232 Bd Ste Marguerite, F-13273 Marseille cedex 09, France
2 Méditerranée University, Marseille, F-13284 France
3 René Huguenin Centre, "Génétique Oncologique" Unit, Saint-Cloud, F-92210 France
4 Oscar Lambret Centre, Lille, F-59020 France
5 François Baclesse Centre, Caen, F-14076 France
6 Léon Bérard Centre, Lyon, F-69373 France
7 Gustave Roussy Institute, Villejuif, F-94805 France
8 Curie Institute, "Génétique Oncologique" Unit, Paris, F-75248 France
9 INSERM UMR599, Marseille, F-13273 France
10 Paoli-Calmettes Institute, "Oncologie Génétique" Department, Marseille, F-13273 France
11 Paul Strauss Centre, Strasbourg, F-67065 France
12 Paul Papin Centre, Angers, F-49033 France
13 Jean Godinot Institute, Reims, F-51100 France
Address correspondence to Claire Julian-Reynier, E-mail: julian{at}marseille.inserm.fr
The aim of this study was to present baseline data on the access to Internet by French breast cancer patients attending genetic clinics and to examine factors affecting Internet health-related use. Twenty-four percent of participants used Internet to obtain information about the disease. This rate was higher among patients with health occupations [adjusted odds ratio (adjOR) 2.6; 95% confidence interval (CI) 1.3–5.1], the most highly educated (adjOR 2.1; 95% CI 1.1–4.0) and those under 41 years of age (adjOR 7.3; 95% CI 2.1–26.2). Almost one of every three women was dissatisfied of this source of information.
Keywords: Internet, patient education, genetic counselling, breast neoplasms, BRCA
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Background |
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The rates of health-related Internet use by cancer patients reported in the literature vary between 8 and 50%1 and between 10 and 44% in the case of breast cancer patients,2 but few European studies are available on this topic.3 Here, we present baseline data on the access to Internet by breast cancer patients attending hereditary cancer clinics and examine whether sociodemographic factors and having a health-related occupation may affect these patients’ rates of Internet use.
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Materials and methods |
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Data obtained in a survey on the national impact of a patient information booklet about BRCA1/2 mutation genetic testing were used in this study.4 This survey, which was performed at 11 centres between June 2001 and July 2003, included all women with cancer who were the first member of their family to whom the possibility of identifying a BRCA1/2 mutation had been proposed. Data were collected by distributing self-administered questionnaires to be completed at home within 1 month of a cancer genetic consultation. A secondary objective of those 14-page questionnaires, first dedicated to evaluate the impact of the information booklet, was to study Internet use in this context. Sociodemographic details and information about Internet access (‘Have you got access to a computer connected to Internet?’) and health-related use of Internet (‘Do you sometimes use it to look for information about health?’) were collected. There was a complementary open-ended question about the respondents’ health-related use of Internet (‘If you had consulted websites, please describe your experience:’).
After univariate analyses, a logistic regression predicting health-related Internet use was conducted on the women with access to Internet (SPSS 11.5 software). P-values (in two-sided tests) of <0.05 were taken to be statistically significant.
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Results |
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Among the 644 women included, 560 (87%) mailed back their questionnaire. There were no significant differences between the medical characteristics and the age of respondents compared with non-respondents.4 Among the respondents, 272 (48.6%) had access to Internet (Table 1) and 136 (24.3%; 50% of the latter group) consulted Internet to obtain health information.
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In those with access to Internet, after multivariate adjustment, health-related Internet use decreased with age but increased with the educational level and increased among those with a health-related occupation (Table 2). Women with a present or past healthcare occupation were found to be 2.6 times [adjusted odds ratio (adjOR); 95% confidence interval (CI) 1.3–5.1] more likely to use Internet than women with other occupations.
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The opinions expressed about the websites visited were positive (23.8%), negative (31.7%) or both positive and negative (11.1%); 33.3% had no specific opinion. Among the Internet users, there were two kinds of negative comments worth mentioning: first, the fact that it is difficult to understand detailed medical website information, which was said to be stressful, and, second, the fact that patients would have preferred to be given an address to consult rather than having to look for one by themselves, especially because many medical websites are in English.
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Discussion |
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Health-related use of Internet by French cancer patients seems to be one of the lowest reported so far in cancer patients, even in this sample with a high educational level. Here, we confirm previous findings on the impact of age and educational characteristics on Internet use.1–3 Because women in our sample had reasonably easy access to Internet, other factors such as a poor grasp of English or unfamiliarity with medical terminology may play a role.
Regular Internet use has been previously reported to be higher among doctors and nurses than their patients.5 The present findings show that healthcare providers also use Internet more frequently when hit by disease, regardless of their age and education. This confirms that familiarity with medical websites and terminology greatly facilitates the use of this information source. Familiarity with the language also appears to be a key issue, and quality-controlled sites giving good translations would surely be welcome in places such as North America and Europe, where many languages are spoken.
Further research is now required to monitor the access of patients to medical websites. These sites are generally thought to provide convenient and inexpensive means of making updated detailed information available to the public.6 However, most patients with chronic diseases, especially cancer, tend to be elderly people who are not at ease with computers,7 and according to our results, almost one of every three women is dissatisfied with Internet as a means of obtaining health-related information. We therefore emphasize the need to tailor the means of delivering information of this kind to the patients’ characteristics.
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Acknowledgements |
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We thank Dr Jessica Blanc for revising the English manuscript and Ms Françoise Chabal from the INSERM UMR379 for her technical help.
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References |
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- Helft PR, Eckles RE, Johnson-Calley CS et al. Use of the Internet to obtain cancer information among cancer patients at an urban county hospital. J Clin Oncol 2005;23:4954–62.
[Abstract/Free Full Text] - Satterlund MJ, McCaul KD, Sandgren AK. Information gathering over time by breast cancer patients. J Med Internet Res 2003;5:e15.
- Jeannot JG, Froehlich F, Wietlisbach V et al. Patient use of the Internet for health care information in Switzerland. Swiss Med Wkly 2004;134:307–12.[Medline]
- Mancini J, Noguès C, Adenis C et al. Impact of an information booklet on satisfaction and decision-making about BRCA genetic testing. Eur J Cancer 2006;42:871–81.[CrossRef][Web of Science][Medline]
- Jadad AR, Sigouin C, Cocking L et al. Internet use among physicians, nurses, and their patients. JAMA 2001;286:1451–2.
[Free Full Text] - Winefield HR, Coventry BJ, Lambert V. Setting up a health education website: practical advice for health professionals. Patient Educ Couns 2004;53:175–82.[CrossRef][Web of Science][Medline]
- Voelker R. Seniors seeking health information need help crossing "digital divide". JAMA 2005;293:1310–2.
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