International multi-site survey on the use of online support groups in bipolar disorder

Abstract

Background: Peer support is an established component of recovery from bipolar disorder, and online support groups may offer opportunities to expand the use of peer support at the patient’s convenience. Prior research in bipolar disorder has reported value from online support groups.

Aims: To understand the use of online support groups by patients with bipolar disorder as part of a larger project about information seeking.

Methods: The results are based on a one-time, paper-based anonymous survey about information seeking by patients with bipolar disorder, which was translated into 12 languages. The survey was completed between March 2014 and January 2016 and included questions on the use of online support groups. All patients were diagnosed by a psychiatrist. Analysis included descriptive statistics and general estimating equations to account for correlated data.

Results and conclusions: The survey was completed by 1222 patients in 17 countries. The patients used the Internet at a percentage similar to the general public. Of the Internet users who looked online for information about bipolar disorder, only 21.0% read or participated in support groups, chats, or forums for bipolar disorder (12.8% of the total sample). Given the benefits reported in prior research, clarification of the role of online support groups in bipolar disorder is needed. With only a minority of patients using online support groups, there are analytical challenges for future studies.

Keywords:

• Bipolar disorder
• online support groups
• Internet
• self-help
• survey

Acknowledgements

We thank Kerstin Heyde, Christiane Otto, and Katharina Schultheiss for data entry support, and Daniela Jany for assisting with manuscript submission.

Disclosure statement

Michael Berk is supported by an NHMRC Senior Principal Research Fellowship (1059660), Eduard Vieta received a Grant from Telefonica. R. E. Nielsen has received research grants from H. Lundbeck for clinical trials, received speaking fees from Bristol-Myers Squibb, Astra Zeneca, Janssen & Cilag, Lundbeck, Servier, Otsuka Pharmaceuticals, Eli Lilly, and has acted as an advisor to Astra Zeneca, Eli Lilly, Lundbeck, Otsuka Pharmaceuticals, Takeda, and Medivir.

The remaining authors report no conflicts of interest.

Additional information

Funding

Michael Berk is supported by an NHMRC Senior Principal Research Fellowship (1059660), Eduard Vieta received a Grant from Telefonica. R. E. Nielsen has received research grants from H. Lundbeck for clinical trials, received speaking fees from Bristol-Myers Squibb, Astra Zeneca, Janssen & Cilag, Lundbeck, Servier, Otsuka Pharmaceuticals, Eli Lilly, and has acted as an advisor to Astra Zeneca, Eli Lilly, Lundbeck, Otsuka Pharmaceuticals, Takeda, and Medivir.