Perceptions and Impact of Bipolar Disorder: How Far Have We Really Come? Results of the National Depressive and Manic-Depressive Association 2000 Survey of Individuals With Bipolar Disorder

Robert M. A. Hirschfeld, M.D.; Lydia Lewis, B.A.; and Lana A. Vornik, M.Sc.

Objective: To assess the experience of selected individuals living with bipolar disorder and compare this experience with that of a similar group of individuals sampled in 1992.

Method: In June 2000, 4192 self-administered questionnaires were sent to National Depressive and Manic-Depressive Association chapters for distribution to support group participants diagnosed with bipolar disorder. By July 31, 2000, the first 600 completed surveys were analyzed.

Results: Over one third of respondents sought professional help within 1 year of the onset of symptoms. Unfortunately, 69% were misdiagnosed, with the most frequent misdiagnosis being unipolar depression. Those who were misdiagnosed consulted a mean of 4 physicians prior to receiving the correct diagnosis. Over one third waited 10 years or more before receiving an accurate diagnosis. Despite having underreported manic symptoms, more than half believe their physicians' lack of understanding of bipolar disorder prevented a correct diagnosis from being made earlier. In 2000, the respondents reported a greater negative impact of bipolar disorder on families, social relationships, and employment than did the respondents in 1992. Overall, respondents were satisfied with their current treatment, which often included medication, talk therapy, and support groups. Respondents who were highly satisfied with their treatment provider had a more positive outlook on their illness and their ability to cope with it.

Conclusion: Individuals with bipolar disorder reported that the illness manifests itself early in life but that accurate diagnosis lags by many years. The illness exacts great hardships on the individual and the family and has a profoundly negative effect on careers. These findings are very similar to those reported nearly a decade ago.

(J Clin Psychiatry 2003;64:161-174)

Received Nov. 8, 2001; accepted June 26, 2002. From the Department of Psychiatry and Behavioral Sciences, University of Texas Medical Branch, Galveston (Dr. Hirschfeld and Ms. Vornik); and the Depression and Bipolar Support Alliance, Chicago, Illinois (Ms. Lewis).

The National Depressive and Manic-Depressive Association survey, data analysis, and manuscript preparation were conducted with the support of an educational grant from Eli Lilly and Company.

Presented in part at the 154th annual meeting of the American Psychiatric Association; May 8, 2001; New Orleans, La.

Dr. Hirschfeld has received grants/research support from Abbott, Bristol-Myers, GlaxoSmithKline, Organon, and Wyeth; is a consultant or serves on the advisory board for Abbott, Bristol-Myers, GlaxoSmithKline, Forest, Lilly, Pfizer, Organon, Pharmacia & Upjohn, Janssen, Wyeth, Sepracor, and Novartis; and serves on the speakers bureau for Abbott, Bristol-Myers, Forest, Lilly, Organon, and Pfizer. Ms. Lewis has received grant/research support and honoraria from Lilly.

Corresponding author and reprints: Robert M. A. Hirschfeld, M.D., Department of Psychiatry and Behavioral Sciences, University of Texas Medical Branch, 1.302 Rebecca Sealy, 301 University Blvd., Galveston, TX 77555-0188 (e-mail: rohirsch@utmb.edu).