Online information seeking by patients with bipolar disorder: results from an international multisite survey

Jörn Conell, Rita Bauer, Tasha Glenn, Martin Alda, Raffaella Ardau, Bernhard T. Baune, Michael Berk, Yuly Bersudsky, Amy Bilderbeck, Alberto Bocchetta, Letizia Bossini, Angela Marianne Paredes Castro, Eric Yat Wo Cheung, Caterina Chillotti, Sabine Choppin, Maria del Zompo, Rodrigo Dias, Seetal Dodd, Anne Duffy, Bruno EtainAndrea Fagiolini, Julie Garnham, John Geddes, Jonas Gildebro, Ana González-Pinto, Guy M. Goodwin, Paul Grof, Hirohiko Harima, Stefanie Hassel, Chantal Henry, Diego Hidalgo-Mazzei, Vaisnvy Kapur, Girish Kunigiri, Beny Lafer, Chun Lam, Erik Roj Larsen, Ute Lewitzka, Rasmus Licht, Anne Hvenegaard Lund, Blazej Misiak, Patryk Piotrowski, Scott Monteith, Rodrigo Munoz, Takako Nakanotani, René E. Nielsen, Claire O’Donovan, Yasushi Okamura, Yamima Osher, Andreas Reif, Philipp Ritter, Janusz K. Rybakowski, Kemal Sagduyu, Brett Sawchuk, Elon Schwartz, Ângela Miranda Scippa, Claire Slaney, Ahmad Hatim Sulaiman, Kirsi Suominen, Aleksandra Suwalska, Peter Tam, Yoshitaka Tatebayashi, Leonardo Tondo, Eduard Vieta, Maj Vinberg, Biju Viswanath, Julia Volkert, Mark Zetin, Iñaki Zorrilla, Peter C. Whybrow, Michael Bauer

Research output: Contribution to journalArticle

Abstract

Background: Information seeking is an important coping mechanism for dealing with chronic illness. Despite a growing number of mental health websites, there is little understanding of how patients with bipolar disorder use the Internet to seek information.
Methods: A 39 question, paper-based, anonymous survey, translated into 12 languages, was completed by 1222 patients in 17 countries as a convenience sample between March 2014 and January 2016. All patients had a diagnosis
of bipolar disorder from a psychiatrist. Data were analyzed using descriptive statistics and generalized estimating equations to account for correlated data.
Results: 976 (81 % of 1212 valid responses) of the patients used the Internet, and of these 750 (77 %) looked for information on bipolar disorder. When looking online for information, 89 % used a computer rather than a smartphone,
and 79 % started with a general search engine. The primary reasons for searching were drug side effects (51 %), to learn anonymously (43 %), and for help coping (39 %). About 1/3 rated their search skills as expert, and 2/3 as basic or intermediate. 59 % preferred a website on mental illness and 33 % preferred Wikipedia. Only 20 % read or participated in online support groups. Most patients (62 %) searched a couple times a year. Online information seeking helped about 2/3 to cope (41 % of the entire sample). About 2/3 did not discuss Internet findings with their doctor.
Conclusion: Online information seeking helps many patients to cope although alternative information sources remain important. Most patients do not discuss Internet findings with their doctor, and concern remains about the quality of online information especially related to prescription drugs. Patients may not rate search skills accurately, and may not understand limitations of online privacy. More patient education about online information searching is needed and physicians should recommend a few high quality websites.
Original languageEnglish
Pages (from-to)1-14
JournalInternational Journal of Bipolar Disorders
Volume4
Issue number1
Early online date24 Aug 2016
DOIs
Publication statusPublished - 1 Dec 2016

Bibliographical note

© 2016 The Author(s). This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

Erratum: Conell, J., Bauer, R., Glenn, T., Alda, M., Ardau, R., Baune, B. T., ... Bauer, M. (2017). Erratum to: Online information seeking by patients with bipolar disorder: results from an international multisite survey (Int J Bipolar Disord, (2016), 4, (1), 10.1186/s40345-016-0058-0). International Journal of Bipolar Disorders, 5(1), [18]. DOI: 10.1186/s40345-017-0082-8

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    Conell, J., Bauer, R., Glenn, T., Alda, M., Ardau, R., Baune, B. T., Berk, M., Bersudsky, Y., Bilderbeck, A., Bocchetta, A., Bossini, L., Paredes Castro, A. M., Cheung, E. Y. W., Chillotti, C., Choppin, S., del Zompo, M., Dias, R., Dodd, S., Duffy, A., ... Bauer, M. (2016). Online information seeking by patients with bipolar disorder: results from an international multisite survey. International Journal of Bipolar Disorders, 4(1), 1-14. https://doi.org/10.1186/s40345-016-0058-0, https://doi.org/10.1186/s40345-017-0082-8