The Face of Bipolar Illness
Presented at American Psychiatric Association Annual Meeting
May, 2001
Lydia Lewis, Executive Director DBSA

• Last July, the Depression and Bipolar Support Alliance (formerly National Depressive and Manic-Depressive Association) DBSA conducted a survey of people with bipolar disorder. We wanted to know who is coping with the illness and how it impacts their lives. Today I’m going to share some of the survey’s findings so that you can get an idea of what the "Face of Bipolar Illness" looks like.

• There were several reasons DBSA sponsored this survey. We wanted to raise awareness about the "real-world" consequences of untreated or inappropriately treated bipolar disorder, the importance of proper diagnosis and treatment and we wanted to provide information to people with bipolar disorder and their health care providers that could improve diagnosis and treatment.

• There was only one qualification for completing the survey: a physician must have diagnosed the respondent with bipolar disorder.

• So now, here are some of our survey’s findings . . . Here is the "Face of Bipolar Illness" in the year 2000:

• Looking back to the time before they were diagnosed as having bipolar disorder, one-third say they were under age 15 when the signs first appeared and 27% were between 15 and 19.

• At least seven-in-ten respondents experienced five particular symptoms of mania before being diagnosed. These included:
  

• Heightened mood, elation, increased self confidence

• Erratic sleeping and/or a decreased need for sleep

• Racing thoughts and increased speech production

• Increased physical and mental activity

• Poor judgment

• However, when we asked which of these symptoms did they report to a physician, the percentages reported were significantly lower than the percentages experienced.

• The same disconnect between experiencing symptoms and reporting them to a physician occurred in depression, although the gap was not as large:

• The five most experienced depressive symptoms before diagnosis were:
  

• Prolonged sadness, pessimism

• Insomnia

• Feelings of guilt, worthlessness

• The inability to concentrate

• Loss of energy

• The most troubling disconnect is that while 69% had thoughts of death or suicide, only 49% told their doctors.

• When asked: "What caused you to seek help?" 63% said, "because my symptoms became unmanageable." In addition to unmanageable symptoms, nearly half said there was intervention of family, friends or employer.

• There’s a considerable time lapse between experiencing symptoms of bipolar disorder and first seeking help. Be sure to note that nearly one-third waited more than ten years before seeking professional help.
  
• One of the most disturbing statistics uncovered is that nearly 7 out of 10 of our respondents said they had been misdiagnosed -- 70% were misdiagnosed between 1 and 3 times. Another 14% were misdiagnosed between 4 and 6 times. On average, respondents consulted 4 physicians before receiving a proper diagnosis. Psychiatrists were most likely to have misdiagnosed as reported by 79%.
  
• The most common incorrect diagnosis was unipolar depression, followed by anxiety disorder, schizophrenia, borderline personality, alcohol or substance abuse and schizoaffective disorder. Gender plays a significant role in misdiagnosis -- 43% of the men responding reported being misdiagnosed with depression compared to 68% of the women. And while 14% of the women reported receiving an incorrect diagnosis of schizophrenia, 28% of the men reported this.
  
• It’s disturbing that only 36% sought help within the first year of exhibiting symptoms. And that 31% waited more than 10 years. After this significant delay in seeking treatment, we wanted to determine how much time elapsed from this first visit until a correct diagnosis was made.
  
• The findings aren’t good. One-in five respondents waited up to one year from the very first time they sought guidance to the time they were correctly diagnosed. More than half waited at least 5 years for a correct diagnosis and 35% waited longer than ten years before a correct diagnosis was made.
  
• We wanted the patient’s perspective on why so many misdiagnoses were made by psychiatrists so we asked "What do you believe prevented a correct diagnosis from being made earlier"
  
• We learned that 60% felt there was a lack of understanding of bipolar disorder among the doctors and professionals they consulted.

• Disturbingly, more than one-third felt their symptoms were not taken seriously, 37% said there was a lack of communication between themselves and their doctor, and you can see their other beliefs on this slide.
  
• It must be noted that 28% felt a correct diagnosis wasn’t made earlier because they, the patient, did not report all their symptoms.

• To determine how much stigma and ignorance surrounded the illness, we asked whether bipolar was primarily a medical illness, a personality flaw or character weakness or both. 82% believed it is a medical illness but unfortunately 14% believed it is both.

• We asked quite a few questions to measure the impact of bipolar disorder, both when treated and untreated. When we look at impact of treatment, the importance of early and correct diagnosis becomes obvious. For example, spending sprees were reduced 15% after treatment and sexual promiscuity dropped from 43% to 18%.

• We also looked at certain attitudes towards bipolar disorder. When we asked if they have come to terms with living with their illness, 79% agreed strongly or somewhat. And while slightly more than three-quarters feel confident that they will manage their illness well throughout their life, nearly the same number feel it’s a struggle to manage their illness.

• The questionnaire also addressed treatment. By an overwhelming margin -- 72% -- psychiatrists are the most likely treatment providers. Only 3% reported being treated by a psychologist, social worker or primary care physician.

• More than half of those dissatisfied with their treatment are unhappy because their doctor doesn’t spend enough time with them.

• To explore medication satisfaction, we asked people what impact side effects of their current medication had on their daily lives and half said they had little or no impact. 34% have considered switching to another medication due to current side effects and 11% reported being likely to discontinue their medication in the next 6-12 months because of side effects. All in all, 85% reported being satisfied with their current treatment.

• 79% of our respondents have been hospitalized for their bipolar illness – 35% for 2-4 times (see slide) and 15% more than 10 times. 35% reported their average duration of hospitalization was between 2 and 4 weeks.

• And one final statistic . . . our participants received most of their information from the radio, with television and cable coming in second and friends a close third. Doctors were rated the poorest source of information.
  
• So, what does all this data tell us? I’d like to leave you with a few thoughts:

• People living with bipolar disorder are misdiagnosed at an alarming rate – and they struggle with symptoms for an average of 10 years before being correctly diagnosed.
  
• NO ONE with bipolar disorder should be forced wait more than ten years for a correct diagnosis. Can you imagine the public outcry if seven out of ten people suffering with diabetes received at least one misdiagnosis – how about if the average number of misdiagnoses for diabetes was four?
  
• This delay caused an "emergency situation" for one third of the respondents.
  
• DBSA believes one reason people are not reporting their symptoms of mania is because they don’t recognize them as an indicator of an illness. Our organization works to educate the general public on how to recognize the signs of depression and mania. But doctors must play a leading role here.
  
• Primary care doctors, as well as psychiatrists, must screen for mania as well as depression. We recently surveyed nearly 900 primary care doctors and we asked: "What proportion of patients with depression do you ask about symptoms of mania?"
  
• 44% of the PCPs said less than 25% and 58% said less than half. This certainly must be a contributing factor to the high number of depression misdiagnoses.
  
• The gender bias in misdiagnoses concerns us. Physicians need to be aware of the role gender plays in diagnosis.
  
• Better diagnostic tools are needed. DBSA posted the Mood Disorder Questionnaire – the MDQ – on our web site late in November. The MDQ is the first self-assessment tool for bipolar. We are pleased to report that in the first two months on-line, more than 11,000 people completed the questionnaire. We are urging people to print out their responses and show them to their health care provider.
  
• Patient support groups help in many ways including providing interpersonal support, help to cope with problems and crises and increasing treatment compliance. Yet we know only one third of the people in DMDA support groups learned of their group from a mental health professional. Just call us or go on-line to find your local DMDA group and refer your patients.
  
• But our efforts will be of little benefit if physicians don’t keep bipolar disorder on their radar screens when patients come in with depressive or manic symptoms.
  
• This illness certainly leaves its mark on the people it affects, including:
  
• Before diagnosis, more than two-thirds had thoughts of death or suicide, yet only half reported these thoughts to their doctor.
  
• Even though 27% of our respondents had post college education, more than one-half reported incomes of less than $15,000.
  
• When their illness is not being managed effectively, more than three-quarters of the respondents report experiencing difficulties with relationships substance abuse and addictive behavior and being able to perform their job duties. More than half reported experiencing financial difficulties and the need to stop working outside their home.
  
• And, finally, half are ashamed or embarrassed to have this illness. That’s a heavy load to for anyone to carry when already coping with such troubling symptoms.
  
• What’s most heart breaking is seeing how positively treatment affects lives yet 70% wait at least a decade to get an accurate diagnosis and then, hopefully, the proper treatment.
  
• The widespread failure to diagnose bipolar disorder is an unrecognized public health problem that needs to be addressed by the medical community.
  
• To make progress we all have to work together – both doctors and patients need greater education to improve awareness and understanding of bipolar disorder and its treatment.
  
• We will do our part to educate the public and we ask that you do whatever you can to educate the primary care community and that you do everything you can to view this illness through our eyes.