Global survey shows how perceptions of healthcare professionals and patients influence treatment of bipolar disorder
SummaryGlobal survey shows how perceptions of healthcare professionals and patients influence treatment of bipolar disorder
A global survey comparing perceptions of doctors, patients and carers on aspects of bipolar disorder has identified differences which may impact on diagnosis and management. Findings of the survey were disclosed during the AstraZeneca International Bipolar Disorder Media Event held in Barcelona, Spain in September 2008. Details of a new initiative to foster greater understanding of the disorder were also discussed.
Bipolar disorder, a common and serious mental illness where mood fluctuates between the two polar extremes of mania and depression, has a high life-time prevalence (3-5 per cent). Yet, despite its ubiquity it remains hard to diagnose and manage well for reasons which are not fully understood. Recent years have seen advances in pharmacological treatments; for example, several large studies have demonstrated the efficacy of quetiapine in various phases of bipolar disorder1-5.
New research has also attempted to fill the knowledge gaps that serve as barriers to early diagnosis of bipolar disorder and implementation of scientific advances to manage it. The aim was to see where healthcare professionals and patients themselves could do better in accelerating diagnosis and preventing relapses of bipolar disorder. A new global survey focussing on 10 countries - Australia, Canada, Germany, Italy, Mexico, New Zealand, Spain, Sweden, the UK and the USA – was conducted and provides pointers to how matters could be improved 6.
The survey canvassed the views of 2688 bipolar disorder patients and carers and of 643 healthcare professionals (HCPs). Approximately 40 per cent of both participating groups agreed that at least four years might elapse before some bipolar patients are diagnosed accurately. Even then finding the right medicine to control symptoms is fraught with difficulty, with many patients reporting trying multiple medications before one suited to their needs is identified.
Results of the survey were disclosed by Professor Guy Goodwin, a leading psychiatrist from Oxford University, UK, with a special interest in bipolar disorder. He commented: “This is the first global survey on bipolar disorder to compare opinions of patients, carers and HCPs”. The survey emphasises the complexity of diagnosing, managing and treating bipolar disorder but also shows where doctors and patients agree on how those issues can be tackled, he stressed. The patient’s perspective was gained with the support of several patient advocacy groups including EUFAMI, GAMIAN-Europe and the World Federation for Mental Health (WFMH). The physician perspective was obtained with the help of the International Society of Bipolar Disorders (ISBD) and the International Review of Bipolar Disorders (IRBD) who sought doctors’ views online and during professional conferences. “We had a massive response from patients and carers, especially in the US,” said Dr Alexandra Wyke, of PatientView, one of the survey authors. A striking finding has been the similarities experienced across countries.
The global survey has been illuminating, in some countries especially, in revealing mismatches between the perceptions of bipolar disorder held by patients and healthcare professionals, he noted. Disparities included findings about quality of life, for example. HCPs believe four out of five of their bipolar patients have a good or better-than-good quality of life while only around half of patients are of a similar opinion. Patients emphasised the importance of treatment side effects in impacting their quality of life; doctors agreed but also focussed on non-treatment factors.
Commenting on delays in diagnosis, Professor Goodwin said a possible problem lay in doctors not asking the right questions because of time constraints. “When patients present with depression they are often treated for this without questions being asked about elevated mood. They may not then receive the right diagnosis or treatment for several years.” Both groups acknowledge that specialists are better at diagnosis but if access to specialists is not possible, they suggest primary care physicians and nurses should be provided with more training on bipolar disorder.
A large proportion of patients, 78 per cent, felt that where there was a family history of bipolar disorder other family members should be screened for signs of illness. A smaller proportion of HCPs (40 per cent) also believed this would be useful.
“From the physician’s perspective there are a number of challenges. Making a diagnosis is in itself difficult, but once made, the nature of bipolar disorder can make management also problematic,” remarked Professor Goodwin. Bipolar disorder is not a single dimension to manage; as well as symptoms of mania and depression, anxiety may be a prominent feature, so physicians sometimes struggle with it, he conceded. “Part of the problem is the lack of clear information provided to patients about their illness.” Primary care physicians often require more updated knowledge themselves before they can share the knowledge patients need to become experts in their own care. “Education about bipolar disorder is key and implementing proper care requires strong relationships between doctors and patients,” he pointed out. “For this we need to understand the illness from the patient’s perspective.”
Approximately a quarter of patients now take nine medications before they find one that controls their symptoms. Two thirds of patients believed a willingness on the part of physicians to change treatments until the right one is found is one of the most important qualities of a good doctor. Just over a third of physicians felt patients might have to try up to four medicines before satisfaction with treatment is achieved and only four per cent believed some patients would not find any treatment to suit them.
Adherence to treatment was an issue with over two thirds of patients reporting a need for drugs with fewer side effects and three quarters wanting medicines that allowed them to manage their condition more effectively. A solution to problems with concordance over treatment was to encourage better dialogue between doctors and patients, the patient arm of the study found. Patients wanted to discuss their illness with their doctor rather than just collect prescriptions and two thirds wanted their condition checked on a regular basis. Over 70 per cent of both patients and HCPs believed regular reviews of medication were important and that outcomes would improve with better patient self-management. However, 41 per cent of HCPs reported that getting patients to attend regular check-ups was a challenge in the management of bipolar disorder.
The survey highlighted the sense of stigmatisation and discrimination felt by some people with bipolar disorder. Common public misperceptions of how people with mental illnesses think and behave are reinforced by thoughtless comments in everyday media. As a positive step to tackle this problem at its source, The Lexicon: International Media guide for Mental Health has been developed with support from an educational grant from AstraZeneca7. “This is an international guide for media workers to help them write about mental illness without using words that hurt individuals with bipolar disorder and their families,” explained Dr Patt Franciosi, immediate past president of the WFMH.
The Lexicon, with a foreword by Norman Sartorius, former Director of the Division of Mental Health, at the World Health Organization, recognises the essential role the media plays in shaping public understanding. It encourages responsible and accurate reporting, containing useful statistics to help journalists understand the prevalence of mental illness and explanations of what it involves. More importantly, it provides a vocabulary of words to replace those with pejorative connotations used by the popular media to describe people with mental disorders. By these means, the Lexicon hopes to reduce the negative portrayals of people with mental disorders that promote fear, mistrust and stigma.
The Lexicon was developed in collaboration with leading national and international patient advocacy groups, people with personal experience of mental illness, and senior journalists to compile the information journalists need to report accurately and sensitively, news items involving people with mental illnesses. It is available online at www.forum4mentalhealth.com/lexicon.
As the MEP John Bowes commented recently: “Living with mental illness is tough enough without having added to the burden of illness, the pain and rejection of stigma.”
Commenting on other issues raised by the survey, Dr Franciosi reiterated a need for much wider dissemination of knowledge about bipolar disorder generally and described the development by WFMH of a “Tool Kit”8. The Tool-Kit, titled “Learning about bipolar disorder” developed with the help of an unrestricted educational grant from AstraZeneca, hopes to increase both patient and public awareness, and to assist patients with bipolar disorder and their carers to manage the illness more effectively. As well as providing comprehensive information for patients, the kit also includes guidance for primary care professionals giving them the means to explain detailed bipolar treatment issues to patients and carers in layman’s language.
“In developing the Tool-Kit, we found a useful aspect was to use personal stories” noted Dr Franciosi. “By reading the experience of others, patients can identify with symptoms more easily and articulate their own experience of bipolar disorder,” she explained. The Tool-Kit also takes account of cultural variability in the language used to describe symptoms. Advice for relatives and carers is included to help them recognise signs of relapse and to identify bipolar symptoms in children. Tips such as recording mood changes, feelings and symptoms that patients experience, are supplied, along with ways to reduce stresses such as keeping to a structured schedule where possible and being flexible. Advice on where to get help from support groups and life coaches specialising in bipolar disorder is included alongside other practical information on how to create and maintain a healthy lifestyle and avoid alcohol abuse.
Bipolar disorder frequently creates tensions at home and work, and often results in relationship breakdowns. It is a major risk for suicide. All attempts to foster a greater understanding of the disorder and its management should help to reduce these. The tool-kit “Learning about bipolar disorder” is available in print and online at www.wfmh.org and is translated into a number of languages.