These are unwanted ideas or impulses that
repeatedly well up in the mind of the person with OCD. Persistent fears that harm may come
to self or a loved one, an unreasonable concern with becoming contaminated, or an
excessive need to do things correctly or perfectly, are common. Again and again, the
individual experiences a disturbing thought, such as, "My hands may be
contaminated--I must wash them"; "I may have left the gas on"; or "I
am going to injure my child." These thoughts are intrusive, unpleasant, and produce a
high degree of anxiety. Sometimes the obsessions are of a violent or a sexual nature, or
concern illness.
Compulsions
In response to their obsessions, most people with OCD resort to repetitive behaviors called compulsions. The most common of these are washing and checking. Other compulsive behaviors include counting (often while performing another compulsive action such as hand washing), repeating, hoarding, and endlessly rearranging objects in an effort to keep them in precise alignment with each other. Mental problems, such as mentally repeating phrases, listmaking, or checking are also common. These behaviors generally are intended to ward off harm to the person with OCD or others. Some people with OCD have regimented rituals while others have rituals that are complex and changing. Performing rituals may give the person with OCD some relief from anxiety, but it is only temporary.
Insight
People with OCD show a range of insight into the senselessness of their obsessions. Often, especially when they are not actually having an obsession, they can recognize that their obsessions and compulsions are unrealistic. At other times they may be unsure about their fears or even believe strongly in their validity.
Resistance
Most people with OCD struggle to banish their unwanted, obsessive thoughts and to prevent themselves from engaging in compulsive behaviors. Many are able to keep their obsessive-compulsive symptoms under control during the hours when they are at work or attending school. But over the months or years, resistance may weaken, and when this happens, OCD may become so severe that time-consuming rituals take over the sufferers' lives, making it impossible for them to continue activities outside the home.
Shame and Secrecy
OCD sufferers often attempt to hide their disorder rather than seek help. Often they are successful in concealing their obsessive-compulsive symptoms from friends and coworkers. An unfortunate consequence of this secrecy is that people with OCD usually do not receive professional help until years after the onset of their disease. By that time, they may have learned to work their lives--and family members' lives--around the rituals.
Long-lasting Symptoms
OCD tends to last for years, even decades. The symptoms may become less severe from
time to time, and there may be long intervals when the symptoms are mild, but for most
individuals with OCD, the symptoms are chronic.
The old belief that OCD was the result of life experiences has been weakened before the growing evidence that biological factors are a primary contributor to the disorder. The fact that OCD patients respond well to specific medications that affect the neurotransmitter serotonin suggests the disorder has a neurobiological basis. For that reason, OCD is no longer attributed only to attitudes a patient learned in childhood--for example, an inordinate emphasis on cleanliness, or a belief that certain thoughts are dangerous or unacceptable. Instead, the search for causes now focuses on the interaction of neurobiological factors and environmental influences, as well as cognitive processes.
OCD is sometimes accompanied by depression, eating disorders, substance abuse disorder, a personality disorder, attention deficit disorder, or another of the anxiety disorders. Co-existing disorders can make OCD more difficult both to diagnose and to treat.
In an effort to identify specific biological factors that may be important in the onset or persistence of OCD, NIMH-supported investigators have used a device called the positron emission tomography (PET) scanner to study the brains of patients with OCD. Several groups of investigators have obtained findings from PET scans suggesting that OCD patients have patterns of brain activity that differ from those of people without mental illness or with some other mental illness. Brain-imaging studies of OCD showing abnormal neurochemical activity in regions known to play a role in certain neurological disorders suggest that these areas may be crucial in the origins of OCD. There is also evidence that treatment with medications or behavior therapy induce changes in the brain coincident with clinical improvement.
Recent preliminary studies of the brain using magnetic resonance imaging showed that the subjects with obsessive-compulsive disorder had significantly less white matter than did normal control subjects, suggesting a widely distributed brain abnormality in OCD. Understanding the significance of this finding will be further explored by functional neuroimaging and neuropsychological studies (Jenike et al, 1996).
Symptoms of OCD are seen in association with some other neurological disorders. There is an increased rate of OCD in people with Tourette's syndrome, an illness characterized by involuntary movements and vocalizations. Investigators are currently studying the hypothesis that a genetic relationship exists between OCD and the tic disorders.
Other illnesses that may be linked to OCD are trichotillomania (the repeated urge to pull out scalp hair, eyelashes, eyebrows or other body hair), body dysmorphic disorder (excessive preoccupation with imaginary or exaggerated defects in appearance), and hypochondriasis (the fear of having--despite medical evaluation and reassurance--a serious disease). Genetic studies of OCD and other related conditions may enable scientists to pinpoint the molecular basis of these disorders.
Other theories about the causes of OCD focus on the interaction between behavior and the environment and on beliefs and attitudes, as well as how information is processed. These behavioral and cognitive theories are not incompatible with biological explanations.
A person with OCD has obsessive and compulsive behaviors that are extreme enough to interfere with everyday life. People with OCD should not be confused with a much larger group of individuals who are sometimes called "compulsive" because they hold themselves to a high standard of performance and are perfectionistic and very organized in their work and even in recreational activities. This type of "compulsiveness" often serves a valuable purpose, contributing to a person's self-esteem and success on the job. In that respect, it differs from the life-wrecking obsessions and rituals of the person with OCD.
Treatment of OCD: Progress Through Research
Clinical and animal research sponsored by NIMH and other scientific organizations has provided information leading to both pharmacologic and behavioral treatments that can benefit the person with OCD. One patient may benefit significantly from behavior therapy, while another will benefit from pharmacotherapy. Some others may use both medication and behavior therapy. Others may begin with medication to gain control over their symptoms and then continue with behavior therapy. Which therapy to use should be decided by the individual patient in consultation with his or her therapist.
Pharmacotherapy
Clinical trials in recent years have shown that drugs that affect the neurotransmitter
serotonin can significantly decrease the symptoms of OCD. The first of these serotonin
reuptake inhibitors (SRIs) specifically approved for the use in the treatment of OCD was
the tricyclic antidepressant clomipramine (AnafranilR). It was followed by
other SRIs that are called "selective serotonin reuptake inhibitors" (SSRIs).
Those that have been approved by the Food and Drug Administration for the treatment of OCD
are flouxetine (ProzacR), fluvoxamine (LuvoxR), and paroxetine
(PaxilR). Another that has been studied in controlled clinical trials is
sertraline (ZoloftR). Large studies have shown that more than three-quarters of
patients are helped by these medications at least a little. And in more than half of
patients, medications relieve symptoms of OCD by diminishing the frequency and intensity
of the obsessions and compulsions. Improvement usually takes at least three weeks or
longer. If a patient does not respond well to one of these medications, or has
unacceptable side effects, another SRI may give a better response. For patients who are
only partially responsive to these medications, research is being conducted on the use of
an SRI as the primary medication and one of a variety of medications as an additional drug
(an augmenter). Medications are of help in controlling the symptoms of OCD, but often, if
the medication is discontinued, relapse will follow. Indeed, even after symptoms have
subsided, most people will need to continue with medication indefinitely, perhaps with a
lowered dosage.
Behavior Therapy
Traditional psychotherapy, aimed at helping the patient develop insight into his or her
problem, is generally not helpful for OCD. However, a specific behavior therapy approach
called "exposure and response prevention" is effective for many people with OCD.
In this approach, the patient deliberately and voluntarily confronts the feared object or
idea, either directly or by imagination. At the same time the patient is strongly
encouraged to refrain from ritualizing, with support and structure provided by the
therapist, and possibly by others whom the patient recruits for assistance. For example, a
compulsive hand washer may be encouraged to touch an object believed to be contaminated,
and then urged to avoid washing for several hours until the anxiety provoked has greatly
decreased. Treatment then proceeds on a step-by-step basis, guided by the patient's
ability to tolerate the anxiety and control the rituals. As treatment progresses, most
patients gradually experience less anxiety from the obsessive thoughts and are able to
resist the compulsive urges.
Studies of behavior therapy for OCD have found it to be a successful treatment for the
majority of patients who complete it. For the treatment to be successful, it is important
that the therapist be fully trained to provide this specific form of therapy. It is also
helpful for the patient to be highly motivated and have a positive, determined attitude.
The positive effects of behavior therapy endure once treatment has ended. A recent
compilation of outcome studies indicated that, of more than 300 OCD patients who were
treated by exposure and response prevention, an average of 76 percent still showed
clinically significant relief from 3 months to 6 years after treatment (Foa & Kozak,
1996). Another study has found that incorporating relapse-prevention components in the
treatment program, including follow-up sessions after the intensive therapy, contributes
to the maintenance of improvement (Hiss, Foa, and Kozak, 1994).
One study provides new evidence that cognitive-behavioral therapy may also prove effective
for OCD. This variant of behavior therapy emphasizes changing the OCD sufferer's beliefs
and thinking patterns. Additional studies are required before the promise of
cognitive-behavioral therapy can be adequately evaluated. The ongoing search for causes,
together with research on treatment, promises to yield even more hope for people with OCD
and their families.
If you think that you have OCD, you should seek the help of a mental health professional. Family physicians, clinics, and health maintenance organizations may be able to provide treatment or make referrals to mental health centers and specialists. Also, the department of psychiatry at a major medical center or the department of psychology at a university may have specialists who are knowledgeable about the treatment of OCD and are able to provide therapy or recommend another doctor in the area.
OCD affects not only the sufferer but the whole family. The family often has a difficult time accepting the fact that the person with OCD cannot stop the distressing behavior. Family members may show their anger and resentment, resulting in an increase in the OCD behavior. Or, to keep the peace, they may assist in the rituals or give constant reassurance.
Education about OCD is important for the family. Families can learn specific ways to encourage the person with OCD to adhere fully to behavior therapy and/or pharmacotherapy programs. Self-help books are often a good source of information. Some families seek the help of a family therapist who is trained in the field. Also, in the past few years, many families have joined one of the educational support groups that have been organized throughout the country.
Research into treatment for OCD is ongoing in several areas--ways of increasing availability of effective behavior therapy; cognitive therapy; relapse prevention; methods of reducing medication in patients who have a history of being unable to tolerate medication, such as small, liquid doses of flouxetine or the use of intravenous clomipramine; and neurosurgery, a new approach to treatment-refractory OCD. In the very few centers where neurosurgery has been performed as a clinical procedure, candidates are generally restricted to those who have failed to respond to conventional treatments, including behavior therapy and pharmacotherapy.
In addition to research into treatment modalities, NIMH researchers are conducting studies into possible linkage of OCD to some autoimmune diseases (diseases in which infection-fighting cells, or antibodies, turn against the body, trying to destroy it). Other NIMH-supported studies compare behavior therapy, pharmacotherapy, and a combination of both.
Anecdotal reports of the successful use of electroconvulsive therapy (ECT) in OCD have been published over the past several decades. Most often, the benefit from ECT has been short lived, and this treatment is now generally restricted to instances of treatment-resistant OCD accompanied by severe depression.
Individuals with OCD are protected under the Americans with Disabilities Act (ADA). Among organizations that offer information related to the ADA are the ADA Information Line at the U.S. Department of Justice, (202) 514-0301, and the Job Accommodation Network (JAN), part of the President's Committee on the Employment of People with Disabilities in the U.S. Department of Labor. JAN is located at West Virginia University, 809 Allen Hall, P.O. Box 6122, Morgantown, WV 26506, telephone (800) 526-7234 (voice or TDD), (800) 526-4698 (in West Virginia).
The Pharmaceutical Research and Manufacturers Association publishes a directory of indigent programs for those who cannot afford medications. Physicians can request a copy of the guide by calling 800-762-4636 (800-PMA-INFO).
For further information on OCD, its treatment,
and how to get help, you may wish to contact the following organizations:
Anxiety Disorders Association of America
http://adaa.org
Association for Advancement of Behavior Therapy
http:server.psyc.vt.edu/aabt/
Membership listing of mental health professionals focusing on behavior therapy.
Madison Institute of Medicine
http://healthtechsys.com/mimocic.html
Freedom From Fear
http://www.freedomfromfear.org
Obsessive-Compulsive Foundation
http://ocfoundation.org
Tourette Syndrome Association, Inc.
http://ba.mgh.harvard.edu
DuPont RL, Rice DP, Shiraki S, and Rowland C.
Economic costs of obsessive-compulsive disorder. Unpublished, 1994.
Foa EB and KoZak MJ. Obsessive-compulsive disorder: long-term outcome of psychological
treatment. In Mavissakalian & Prien (Eds.), Long-term Treatments of Anxiety
Disorders. Washington, DC: American Psychiatric Press, 1996, 285-309.
Hiss H, Foa EB, and Kozak MJ. Relapse prevention program for treatment of
obsessive-compulsive disorder. Journal of Consulting and Clinical Psychology
62:4:801-808, 1994.
Jenike MA. Obsessive-compulsive Disorder: efficacy of specific treatments as assessed by
controlled trials. Psychopharmacology Bulletin 29:4:487-499, 1993.
Jenike MA. Managing the patient with treatment-resistant obsessive-compulsive disorder:
current strategies. Journal of Clinical Psychiatry 55:3 (suppl):11-17, 1994.
Jenike MA et al. Cerebral structural abnormalities in obsessive-compulsive disorder. Archives
of General Psychiatry 53:7:625-632, 1996.
Leonard HL, Swedo SE, Lenane MC, Rettew DC, Hamburger SD, Bartko JJ, and Rapoport JL. A 2-
to 7-Year follow-up study of 54 obsessive-compulsive children and adolescents. Archives
of General Psychiatry 50:429-439, 1993.
March JS, Mulle K, and Herbel B. Behavioral psychotherapy for children and adolescents
with obsessive-compulsive disorder: an open trial of a new protocol-driven treatment
package. Journal of the American Academy of Child and Adolescent Psychiatry
33:3:333-341, 1994.
Pato MT, Zohar-Kadouch R, Zohar J, and Murphy DL. Return of symptoms after discontinuation
of clomipramine in patients with obsessive-compulsive disorder. American Journal of
Psychiatry 145:1521-1525, 1988.
Swedo SE and Leonard HL. Childhood movement disorders and obsessive-compulsive disorder. Journal
of Clinical Psychiatry 55:3 (suppl):32-37.
Swedo SE and Leonard HL. Excessively compulsive or obsessive-compulsive disorder? It's
Not All in Your Head. New York, NY: HarperCollins, 1996.
Acknowledgments
This brochure is the second revision by
Margaret Strock, staff member in the Information Resources and Inquiries Branch, Office of
Scientific Information (OSI), National Institute of Mental Health (NIMH) of a publication
originally written by Mary Lynn Hendrix, OSI. Expert assistance was provided by Jack
Maser, PhD, Dennis Murphy, MD, Matthew Rudorfer, MD, and Lynn J. Cave, NIMH staff members;
Wayne K. Goodman, MD, University of Florida College of Medicine; Michael A. Jenike, M.D.,
Massachusetts General Hospital; Edna B. Foa, PhD, and Michael J. Kozak, PhD, Medical
College of Pennsylvania; Gail S. Steketee, PhD, Boston University; and James Broatch, MSW,
Obsessive-Compulsive Foundation.
National Institute of Mental Health
NIH Publication No. 96-3755
Printed 1991, Revised 1994, Revised September 1996, Reprinted 1999
Updated: July 06, 2001
