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

Conell, Jorn, 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, Catarina, Choppin, Sabine, Del Zompo, Maria, Dias, Rodrigo, Dodd, Seetal, Duffy, Anne, Etain, Bruno, Fagiolini, Andrea, Garnham, Julie, Geddes, John, Gildebro, Jonas, Gonzalez-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, Eric Roj, Lewitzka, Ute, Licht, Rasmus, Lund, Anne Hvenegaard, Misiak, Blazej, Piotrowski, Patryk, Monteith, Scott, Munoz, Rodrigo, Nakanotani, Takako, Nielsen, Rene 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, Sulaiman, Ahmad Hatim, Suominen, Kirsi, Suwalska, Aleksandra, Tam, Peter, Tatebayashi, Yoshitaka, Tondo, Leonardo, Vieta, Eduard, Vinberg, Maj, Viswanath, Biju, Volkert, Julia, Zetin, Mark, Zorrilla, Inaki, 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, vol. 4, Article number: 17, pp. 1-14, doi: 10.1186/s40345-016-0058-0.

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Title Online information seeking by patients with bipolar disorder: results from an international multisite survey
Author(s) Conell, Jorn
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, Catarina
Choppin, Sabine
Del Zompo, Maria
Dias, Rodrigo
Dodd, Seetal
Duffy, Anne
Etain, Bruno
Fagiolini, Andrea
Garnham, Julie
Geddes, John
Gildebro, Jonas
Gonzalez-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, Eric Roj
Lewitzka, Ute
Licht, Rasmus
Lund, Anne Hvenegaard
Misiak, Blazej
Piotrowski, Patryk
Monteith, Scott
Munoz, Rodrigo
Nakanotani, Takako
Nielsen, Rene 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
Sulaiman, Ahmad Hatim
Suominen, Kirsi
Suwalska, Aleksandra
Tam, Peter
Tatebayashi, Yoshitaka
Tondo, Leonardo
Vieta, Eduard
Vinberg, Maj
Viswanath, Biju
Volkert, Julia
Zetin, Mark
Zorrilla, Inaki
Whybrow, Peter C.
Bauer, Michael
Journal name International journal of bipolar disorders
Volume number 4
Season Article number: 17
Start page 1
End page 14
Total pages 14
Publisher Springer
Place of publication London, Eng.
Publication date 2016-08-24
ISSN 2194-7511
Summary 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.
Language eng
DOI 10.1186/s40345-016-0058-0
Field of Research 111799 Public Health and Health Services not elsewhere classified
Socio Economic Objective 920499 Public Health (excl. Specific Population Health) not elsewhere classified
HERDC Research category C1 Refereed article in a scholarly journal
ERA Research output type C Journal article
Copyright notice ©2016, The Authors
Free to Read? Yes
Use Rights Creative Commons Attribution licence
Persistent URL http://hdl.handle.net/10536/DRO/DU:30086853

Document type: Journal Article
Collections: School of Medicine
Open Access Collection
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Every reasonable effort has been made to ensure that permission has been obtained for items included in DRO. If you believe that your rights have been infringed by this repository, please contact drosupport@deakin.edu.au.