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

Conell J 1 , Bauer R 1 , Glenn T 2 , Alda M 3 , Ardau R 4 , Baune BT 5 Show all authors , Berk M 6 , Bersudsky Y 7 , Bilderbeck A 8 , Bocchetta A 9 , Bossini L 10 , Paredes Castro AM 6 , Cheung EY 11 , Chillotti C 4 , Choppin S 12 , Del Zompo M 9 , Dias R 13 , Dodd S 6 , Duffy A 14 , Etain B 15 , Fagiolini A 10 , Garnham J 3 , Geddes J 8 , Gildebro J 16 , Gonzalez-Pinto A 17 , Goodwin GM 8 , Grof P 18 , Harima H 19 , Hassel S 20 , Henry C 15 , Hidalgo-Mazzei D 21 , Kapur V 22 , Kunigiri G 23 , Lafer B 13 , Lam C 24 , Larsen ER 16 , Lewitzka U 1 , Licht R 25 , Lund AH 16 , Misiak B 26 , Piotrowski P 26 , Monteith S 27 , Munoz R 28 , Nakanotani T 29 , Nielsen RE 25 , O'Donovan C 3 , Okamura Y 19 , Osher Y 7 , Reif A 30 , Ritter P 1 , Rybakowski JK 31 , Sagduyu K 32 , Sawchuk B 14 , Schwartz E 33 , Scippa ÂM 34 , Slaney C 3 , Sulaiman AH 35 , Suominen K 36 , Suwalska A 31 , Tam P 37 , Tatebayashi Y 29 , Tondo L 38 , Vieta E 21 , Vinberg M 39 , Viswanath B 40 , Volkert J 30 , Zetin M 41 , Zorrilla I 17 , Whybrow PC 42 , Bauer M 43

Affiliations 

  • 1 Department of Psychiatry and Psychotherapy, University Hospital Carl Gustav Carus, Technische Universität Dresden, Dresden, Germany
  • 2 ChronoRecord Association, Fullerton, CA, USA
  • 3 Department of Psychiatry, Dalhousie University, Halifax, Nova Scotia, Canada
  • 4 Unit of Clinical Pharmacology, University Hospital of Cagliari, Cagliari, Italy
  • 5 Discipline of Psychiatry, School of Medicine, University of Adelaide, Adelaide, SA, Australia
  • 6 IMPACT Strategic Research Centre, School of Medicine, Deakin University, Geelong, VIC, Australia
  • 7 Department of Psychiatry, Faculty of Health Sciences, Ben Gurion University of the Negev; Beer Sheva Mental Health Center, Beer Sheva, Israel
  • 8 Department of Psychiatry, University of Oxford, Warneford Hospital, Oxford, UK
  • 9 Section of Neurosciences and Clinical Pharmacology, Department of Biomedical Sciences, University of Cagliari, Sardinia, Italy
  • 10 Department of Molecular Medicine, Department of Mental Health (DAI), University of Siena, University of Siena Medical Center (AOUS), Siena, Italy
  • 11 Department of General Adult Psychiatry, Castle Peak Hospital, Hong Kong, China
  • 12 AP-HP, Hôpitaux Universitaires Henri-Mondor, Créteil, France
  • 13 Bipolar Disorder Research Program, Department of Psychiatry, University of São Paulo Medical School, São Paulo, Brazil
  • 14 Department of Psychiatry, University of Calgary, Calgary, Canada
  • 15 AP-HP, Hôpitaux Universitaires Henri-Mondor, INSERM U955 (IMRB), Université Paris Est, Créteil, France
  • 16 Department of Affective Disorders, Q, Mood Disorders Research Unit, Aarhus University Hospital, Aarhus, Denmark
  • 17 Department of Psychiatry, University Hospital of Alava, University of the Basque Country, CIBERSAM, Vitoria, Spain
  • 18 Mood Disorders Center of Ottawa, Ottawa, Canada
  • 19 Department of Psychiatry, Tokyo Metropolitan Matsuzawa Hospital, Setagaya, Tokyo, Japan
  • 20 Department of Psychology & Aston Brain Centre, Aston University, Birmingham, UK
  • 21 Bipolar Disorders Program, Hospital Clinic, University of Barcelona, IDIBAPS, CIBERSAM, Barcelona, Catalonia, Spain
  • 22 Department of Clinical Psychology, NIMHANS, Bangalore, 560029, India
  • 23 Leicestershire Partnership NHS Trust, Leicester, UK
  • 24 Department of Psychiatry, Kowloon Hospital, Hong Kong, China
  • 25 Aalborg University Hospital, Psychiatry, Aalborg, Denmark
  • 26 Department of Psychiatry, Wroclaw Medical University, Wroclaw, Poland
  • 27 Michigan State University College of Human Medicine, Traverse City Campus, Traverse City, MI, USA
  • 28 Department of Psychiatry, University of California San Diego, San Diego, CA, USA
  • 29 Affective Disorders Research Project, Tokyo Metropolitan Institute of Medical Science, Setagaya, Tokyo, Japan
  • 30 Department of Psychiatry, Psychosomatic Medicine and Psychotherapy, University Hospital Frankfurt, Goethe-University, Frankfurt am Main, Germany
  • 31 Department of Adult Psychiatry, Poznan University of Medical Sciences,, Poznan, Poland
  • 32 Department of Psychiatry, University of Missouri Kansas City School of Medicine, Kansas City, MO, USA
  • 33 , Croton on Hudson, NY, USA
  • 34 Department of Neuroscience and Mental Health, Federal University of Bahia, Salvador, Brazil
  • 35 Department of Psychological Medicine, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia
  • 36 City of Helsinki, Department of Social Services and Health Care, Psychiatry, Helsinki, Finland
  • 37 Department of Psychiatry, Department of Medicine, University of Hong Kong, Hong Kong, China
  • 38 Harvard Medical School-McLean Hospital, Boston, MA, USA
  • 39 Psychiatric Center Copenhagen, Copenhagen, Denmark
  • 40 Department of Psychiatry, NIMHANS, Bangalore, 560029, India
  • 41 Department of Psychology, Chapman University, Orange, CA, USA
  • 42 Department of Psychiatry and Biobehavioral Sciences, Semel Institute for Neuroscience and Human Behavior, University of California Los Angeles (UCLA), Los Angeles, CA, USA
  • 43 Department of Psychiatry and Psychotherapy, University Hospital Carl Gustav Carus, Technische Universität Dresden, Dresden, Germany. Michael.Bauer@uniklinikum-dresden.de
Int J Bipolar Disord, 2016 Dec;4(1):17.
PMID: 27552813 DOI: 10.1186/s40345-016-0058-0

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.

* Title and MeSH Headings from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.

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