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

Conell, Jörn, Bauer, Rita, Glenn, Tasha, Alda, Martin, Ardau, Raffaella, Baune, Bernhard T., Berk, Michael, Bersudsky, Yuly, Bilderbeck, Amy, Bocchetta, Alberto, Bossini, Letizia, Paredes Castro, Angela Marianne, Cheung, Eric Yat Wo, Chillotti, Caterina, Choppin, Sabine, del Zompo, Maria, Dias, Rodrigo, Dodd, Seetal, Duffy, Anne, Etain, Bruno, Fagiolini, Andrea, Garnham, Julie, Geddes, John, Gildebro, Jonas, González-Pinto, Ana, Goodwin, Guy M., Grof, Paul, Harima, Hirohiko, Hassel, Stefanie, Henry, Chantal, Hidalgo-Mazzei, Diego, Kapur, Vaisnvy, Kunigiri, Girish, Lafer, Beny, Lam, Chun, Larsen, Erik Roj, Lewitzka, Ute, Licht, Rasmus, Lund, Anne Hvenegaard, Misiak, Blazej, Piotrowski, Patryk, Monteith, Scott, Munoz, Rodrigo, Nakanotani, Takako, Nielsen, René E., O’Donovan, Claire, Okamura, Yasushi, Osher, Yamima, Reif, Andreas, Ritter, Philipp, Rybakowski, Janusz K., Sagduyu, Kemal, Sawchuk, Brett, Schwartz, Elon, Scippa, Ângela Miranda, Slaney, Claire, Hatim Sulaiman, Ahmad, Suominen, Kirsi, Suwalska, Aleksandra, Tam, Peter, Tatebayashi, Yoshitaka, Tondo, Leonardo, Vieta, Eduard, Vinberg, Maj, Viswanath, Biju, Volkert, Julia, Zetin, Mark, Zorrilla, Iñaki, Whybrow, Peter C. and Bauer, Michael (2016). Online information seeking by patients with bipolar disorder:results from an international multisite survey. International Journal of Bipolar Disorders, 4 (1), pp. 1-14.

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.

Publication DOI: https://doi.org/10.1186/s40345-016-0058-0
Divisions: Life & Health Sciences > Psychology
Life & Health Sciences
Additional Information: © 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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Related URLs: http://www.scop ... tnerID=8YFLogxK (Scopus URL)
Published Date: 2016-12-01
Authors: Conell, Jörn
Bauer, Rita
Glenn, Tasha
Alda, Martin
Ardau, Raffaella
Baune, Bernhard T.
Berk, Michael
Bersudsky, Yuly
Bilderbeck, Amy
Bocchetta, Alberto
Bossini, Letizia
Paredes Castro, Angela Marianne
Cheung, Eric Yat Wo
Chillotti, Caterina
Choppin, Sabine
del Zompo, Maria
Dias, Rodrigo
Dodd, Seetal
Duffy, Anne
Etain, Bruno
Fagiolini, Andrea
Garnham, Julie
Geddes, John
Gildebro, Jonas
González-Pinto, Ana
Goodwin, Guy M.
Grof, Paul
Harima, Hirohiko
Hassel, Stefanie ( 0000-0001-7240-1581)
Henry, Chantal
Hidalgo-Mazzei, Diego
Kapur, Vaisnvy
Kunigiri, Girish
Lafer, Beny
Lam, Chun
Larsen, Erik Roj
Lewitzka, Ute
Licht, Rasmus
Lund, Anne Hvenegaard
Misiak, Blazej
Piotrowski, Patryk
Monteith, Scott
Munoz, Rodrigo
Nakanotani, Takako
Nielsen, René E.
O’Donovan, Claire
Okamura, Yasushi
Osher, Yamima
Reif, Andreas
Ritter, Philipp
Rybakowski, Janusz K.
Sagduyu, Kemal
Sawchuk, Brett
Schwartz, Elon
Scippa, Ângela Miranda
Slaney, Claire
Hatim Sulaiman, Ahmad
Suominen, Kirsi
Suwalska, Aleksandra
Tam, Peter
Tatebayashi, Yoshitaka
Tondo, Leonardo
Vieta, Eduard
Vinberg, Maj
Viswanath, Biju
Volkert, Julia
Zetin, Mark
Zorrilla, Iñaki
Whybrow, Peter C.
Bauer, Michael

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