Excerpt From: How Far 
Have We Really Come?
American Psychiatric Association
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. The survey was similar to one we conducted in 1992. The goals of the survey were twofold:
  
• One: We wanted to better understand the experiences of people with bipolar disorder who seek diagnosis and treatment.
  
• And two, We wanted to see if life for people with bipolar disorder has gotten any better in the past 8 years.

• Today I’m going to address goal #2 -- What progress has been made, if any, since 1992.
  
• Between 1992 and 2000, public awareness and professional knowledge of bipolar disorder have increased. Anti-stigma campaigns have been ongoing and advances in neuroscience, behavioral science and genetic research have been significant.
  
• We wanted to know . . . has this progress actually had any impact on the lives of people coping with bipolar illness?
  
• Because of all the efforts underway advocating on behalf of consumers, all the research completed and the push to destigmatize mental illness, we launched the 2000 survey with the assumption that any findings remaining the same as in 1992 indicated a set-back, not a neutral position.

• There was only one qualification for completing the survey: a physician must have diagnosed the respondent with bipolar disorder.
  
• In 1992 and in 2000, the general membership of DBSA, as well as that of our local DMDA chapters, was surveyed by mail. In 1992, 500 completed surveys were analyzed. Last year, a total of more than 4,000 questionnaires were distributed and 600 individuals responded.

• There has been virtually no change in the age when people believe they first had symptoms of bipolar disorder. In fact, in most age groupings, the percentages were identical. The only significant difference is in the 10 -14 age group. (14% in 1992 – 19% in 2000)

• Looking back to the time before they were diagnosed as having bipolar disorder, people are now seeking help sooner but nearly one-third are still waiting 10 years or more before seeking help.

• The time lapse between seeking help and receiving an accurate diagnosis has improved somewhat, with 20% now receiving an accurate diagnosis in less than 1 year. However, a full third is still waiting 10 years or more for a correct diagnosis.

• It’s troubling that the number of people misdiagnosed did not decrease significantly since 1992. It appears the "Decade of the Brain" had little impact here.
  
• Psychiatrists are misdiagnosing at the same high rate and the number of family physicians misdiagnosing has significantly increased since 1992. And more doctors were consulted in 2000 before a correct diagnosis was made than in 1992.

• Depression, anxiety and borderline misdiagnoses have significantly increased while the misdiagnosis of schizophrenia has decreased. The gender gap has also increased especially for women receiving a misdiagnosis of depression.

• We wanted to determine if the impact on lifestyle and family had improved during the 8-year period. In every area things have gotten worse. Relationships with families aren’t as good, more families have lower expectations and the family’s understanding of the illness has worsened. Maintaining long-term friendships and intimate relationships are also more difficult now.

• The patient perspective of treatment was less positive in 2000 than it was in 1992. For example, in 1992, 45% of the people who had unstable relationships reported improvement after treatment. This compares with only 22% reporting improvement in 2000.

• Has the impact of untreated bipolar illness in the workplace changed in any way during the past 8 years? In every area things have gotten worse.

• Types of treatment have not changed significantly in the 8-year period with the exception of group therapy.
  
• There’s some good news here with the number of people hospitalized having decreased. What’s troubling is that the number of times a respondent was hospitalized had increased. The mean was 4.5 times in 1992 and 5.1 times in 2000.
  
• Side effects seem to be having more impact now than in 1992. However, treatment satisfaction has remained high, with 87% reporting satisfaction in 2000.
  
• This is surprising when we take into account how negatively the illness impacts lives. It’s obvious from the data I’ve just presented that people are not being treated to total wellness.
  
• An 87% satisfaction rate indicates to us that patient expectations of treatment are low.

• So . . . let me summarize our key findings:

• While people are seeking help a little sooner now, nearly one-third still wait 10 years or more.
  
• The percentage misdiagnosed has not significantly improved and, in 2000, more doctors were consulted before an accurate diagnosis was made.
  
• The length of time people wait for a correct diagnosis has shortened, with 20% receiving an accurate diagnosis in less than one year but more than one-third still waits 10 years or more.
  
• There has been no improvement in the misdiagnosis rate of psychiatrists and the number of family doctors misdiagnosing has increased.

• A significant gender bias still exists in diagnosis and, in fact, has increased.
• The past eight years have shown little improvement in family and lifestyle issues or on social and financial events.
  
• Untreated bipolar disorder has a greater negative impact on employment in 2000.
  
• While the type of treatment has remained relatively constant and the number of people hospitalized has decreased, the number of hospitalizations reported has increased since 1992.
  
• Patient satisfaction with treatment remains high although side effects are having a greater impact on daily life now.

• So . . . where do we go from here?

• While we’ve made some hypotheses about our data, we can’t say for sure why the findings are what they are. All we know for certain is that there’s a lot of work to be done.
  
• Diagnosis must be improved. It must be more accurate and it must come sooner. Bipolar illness devastates – even ends – lives. No one should have to wait a decade, and even longer, from onset of symptoms to correct diagnosis. Awareness needs to be significantly increased both in the general public and the medical community.
  
• DBSA believes the primary reason people are not reporting their symptoms of mania is because they don’t recognize them as an indicator of a possible illness.
  
• Symptoms such as heightened self-confidence, poor judgment, increased speech and a decreased need for sleep are experienced in every day life.  When is it just a bad day and when is it manic depression?
  
• If we don’t know what we’re looking for, it’s all the more difficult to find.

• 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.

• The medical community must be educated to put bipolar disorder on their radar screens. Primary care doctors, as well as psychiatrists, must screen for mania when they screen for depression.
  
• In a recent DBSA survey of nearly 900 primary care doctors, only one-quarter felt it is "somewhat or very" easy to diagnose mania and 44% reported they screen less than 25% of their patients for mania.
  
• Better screening tools are needed for the general public and for children. DBSA posted the Mood Disorder Questionnaire – the MDQ – on our web site at the end of November.
  
• The MDQ is the first self-assessment tool for bipolar. We are pleased to report that in the first four months on-line, more than 19,000 people completed the interactive questionnaire.
  
• We are urging people to print out their responses and show them to their health care provider. We hope this will prompt their provider to screen for mania as well as for depression.
  
• The gender bias in misdiagnosis concerns us. Physicians need to be attentive to the role gender plays in their diagnosis and the medical community needs to determine why this bias exists.
  
• Finally, we need better treatments to decrease the number of hospitalizations and to improve the side effect profiles of medications.

• The widespread failure to diagnose bipolar disorder promptly is an unrecognized public health problem that needs to be addressed.
  
• We’ve all worked so hard since 1992 yet progress appears to be minimal. To move forward 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 medical community about bipolar disorder and that you do everything you can to view this illness through our eyes.

• Thank you.