Online Information Seeking by Patients with Bipolar Disorder: Results from an International Multisite Survey

Authors

• Jörn Conell, Technische Universität Dresden
• Rita Bauer, Technische Universität Dresden
• Tasha Glenn, ChronoRecord Association
• Martin Alda, Dalhousie University
• Raffaella Ardau, University Hospital of Cagliari
• Bernhard T. Baune, University of Adelaide
• Michael Berk, Deakin University
• Yuly Bersudsky, Ben Gurion University of the Negev
• Amy Bilderbeck, University of Oxford
• Alberto Bocchetta, University of Cagliari
• Letizia Bossini, University of Siena
• Angela Marianne Paredes Castron, Deakin University
• Eric Yat Wo Cheung, Castle Peak Hospital, Hong Kong
• Caterina Chillotti, University Hospital of Cagliari
• Sabine Choppin, Hôpitaux Universitaires Henri-Mondor
• Maria Del Zompo, University of Cagliari
• Rodrigo Dias, University of São Paulo
• Seetal Dodd, Deakin University
• Anne Duffy, University of Calgary
• Bruno Etain, Hôpitaux Universitaires Henri-Mondor
• Andrea Fagiolini, University of Siena
• Julie Garnham, Dalhousie University
• John Geddes, University of Oxford
• Jonas Gidebro, Aarhus University Hospital
• Ana Gonzalez-Pinto, University of the Basque Country
• Guy M. Goodwin, University of Oxford
• Paul Grof, Mood Disorders Center of Ottawa
• Hirohiko Harima, Tokyo Metropolitan Matsuzawa Hospital
• Stefanie Hassel, Aston University
• Chantal Henry, Hôpitaux Universitaires Henri-Mondor
• Diego Hidalgo-Mazzei, University of Barcelona
• Vaisnvy Kapur, NIMHANS
• Girish Kunigiri, Leicestershire Partnership NHS Trust
• Beny Lafer, University of São Paulo
• Chun Lam, Kowloon Hospital, Hong Kong
• Erik Roj Larsen, Aarhus University Hospital
• Ute Lewitzka, Technische Universität Dresden
• Ramus Licht, Aalborg University Hospital
• Anne Hvenegaard Lund, Aarhus University Hospital
• Blazej Misiak, Wroclaw Medical University
• Patryk Piotrowski, Wroclaw Medical University
• Scott Monteith, Michigan State University
• Rodrigo Munoz, University of California, San Diego
• Takako Nakanotani, Tokyo Metropolitan Institute of Medical Science
• René E. Nielsen, Aalborg University Hospital
• Claire O'Donovan, Dalhousie University
• Yasushi Okamura, Tokyo Metropolitan Matsuzawa Hospital
• Yamima Osher, Ben Gurion University of the Negev
• Andreas Reif, University Hospital Frankfurt, Goethe-University
• Philipp Ritter, Technische Universität Dresden
• Janusz K. Rybakowski, Poznan University of Medical Sciences
• Kemal Sagduyu, University of Missouri Kansas City
• Brett Sawchuk, University of Calgary
• Elon Shwartz, Croton on Hudson
• Ângela Miranda Scippa, Federal University of Bahia
• Claire Slaney, Dalhousie University
• Ahmad Hatim Sulaiman, University of Malaya
• Kirsi Suominen, City of Helsinki, Department of Social Services and Health Care
• Aleksandra Suwalska, Poznan University of Medical Sciences
• Peter Tam, University of Hong Kong
• Yoshitaka Tatebayashi, Tokyo Metropolitan Institute of Medical Science
• Leonardo Tondo, Harvard Medical School
• Eduard Vieta, University of Barcelona
• Maj Vinberg, Psychiatric Center Copenhagen
• Biju Viswanath, NIMHANS
• Julia Volkert, University Hospital Frankfurt, Goethe-University
• Mark Zetin, Chapman UniversityFollow
• Iñaki Zorrilla, University of the Basque Country
• Peter C. Whybrow, University of California, Los Angeles
• Michael Bauer, Technische Universität Dresden

Document Type

Article

Publication Date

8-24-2016

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.

Comments

This article was originally published in International Journal of Bipolar Disorders, volume 4, issue 1, in 2016. DOI: 10.1186/s40345-016-0058-0

Recommended Citation

Conell, J., Bauer, R., Glenn, T., Alda, M., Ardau, R., Baune, B. T., … Bauer, M. (2016). Online information seeking by patients with bipolar disorder: results from an international multisite survey. International Journal of Bipolar Disorders, 4(1), 17. http://doi.org/10.1186/s40345-016-0058-0

Peer Reviewed

1

Copyright

The authors

Creative Commons License

This work is licensed under a Creative Commons Attribution 4.0 License.