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One of our aims in establishing Equilibrium was to make sure its program right from the start was ‘evidence’ based and driven from priorities identified from working with people with bipolar disorder themselves. We also wanted to establish as rapidly as possibly a network of people interested in participating in projects with us.

From this the International Bipolar Disorder Survey was born.

Aiming to provide a comprehensive dataset about a wide range of experiences of people the survey went live in late June and has had more than 3000 respondents making it probably the largest of its type covering such wide area of issues. The study is also big enough to make some interesting international comparisons. We can't emphasise the how the willingness of various organisanistations and individuals to help are contributing to the success so far and particularly wish to acknowledge the MDF the Bipolar Organisation (England and Wales), The Bipolar Fellowship (Scotland), John  MacManamy in the USA, and The Mood Disorders Society of Canada and Fundacion Mundo Bipolar. Early in the new year the spanish and latin american data should be collected.

 

The costs of the survey were supported by a single private donation for which we are very grateful

We have already been invited to present preliminary results at two major international conferences at which experts will be present from all over the world and it is important that when we announce the full results we do so in a carefully planned way as we wish to attract the maximum possible press and public attention. Therefore, today, though we would love to tell you more we need to restrict ourselves to sharing just a few things.

Initial Priorities Identified:

Of the 14 possible areas to be ranked in importance in the research and education section, items ranked as having top importance were

1. Psychoeducation /education of people newly diagnosed with bipolar disorder
   
2. Improved training of professionals
3. Working to decrease stigma and improve public understanding.

To set this in context, other possible items included in descending order of priority rated: diagnostic methods, new drugs, earlier diagnosis, policy, making more information available, carers, identification of at risk children, genetics, more existing psychotherapies, new psychotherapies and alternative / complimentary therapies.

We are very pleased that these top three priorities identifies by such a large number of 3000 participants maps so closely to the areas we have selected for the initial projects for our program.

Self Reported Delay to Diagnosis and Misdiagnosis

58% of people described that it took 5 years or more from first seeking help to eventually receiving correct diagnosis For 38% of people it took longer than 10 years. 67% of people were misdiagnosed between 1 and 3 times and 20% between 4 and 6 times. The most common misdiagnosis by far, was one of unipolar depression but anxiety disorders and pure “substance abuse/dependence” were also common.

General Feedback

95.1% of people answered yes to “ Do you think the survey takes a balanced approach to bipolar disorder”

96.8% of people said they would consider "taking part in another survey or study designed by the Equilibrium team"

Full Report of Results :Autumn 2008

Everyone who has registered with the Bipolar In-Touch Network will be sent an e-mail bulletin in the Spring with a link to the full results of the survey which will start to be publicly presented around this time.

Not taken Part?

If you have not taken part, you still can by clicking on the link below:

International Bipolar Disorder Survey link: http://www.survey.bipolar-foundation.org/international

We thank all of you who took the time and made the effort to take part in this project.

 

 More Detail: International Online Survey of Bipolar Disorder:

Summary of Aims: The principal aim of the survey is to build a picture of the current status of treatment of bipolar disorder  and  priorities of those living with bipolar disorder by an international online survey.

• To establish experience and perception of diagnosis, treatment and "pathways to care" including 'delayed and problematic diagnosis'.
• To determine current actual patterns of treatment of bipolar disorder both pharmacological and psychological.
• To find out the issues people with bipolar disorder themselves think are most important to focus on.
  

This survey should provide the body of information by far examining actual practice in the treatment of bipolar disorder by pharmacological and psychological means since many guidelines have been published and one of few of this scale examining the actual experience of people with bipolar disorder with regard to non-pharmacological therapies.

Recruitment and Inclusion:

The  partners in this project are keen that such information is available to influence policy in a manner balanced by user experience and wishes, professional advice and advised priorities and the increasing body of evidence arising from evidence based practice. As well as having the survey “open access on the internet, a link to the survey will be emailed by these and other advocacy organisations confidentially to members of their mailing lists. Confirmation of 'diagnosis' is by online completion of the very brief Mood Disorders Questionnaire.

Participation in the online survey  takes around 20 minutes and is completely anonymous. You can take a break and save it part way through to return later if you choose. To participate or view the survey go to:

http://www.survey.bipolar-foundation.org/international

This link can also be emailed directly to others who may be interested in the survey.