Obsessive-compulsive disorder (OCD), one of the anxiety disorders, is
a potentially disabling condition that can persist throughout a person's
life. The individual who suffers from OCD becomes trapped in a pattern
of repetitive thoughts and behaviors that are senseless and distressing
but extremely difficult to overcome. OCD occurs in a spectrum from mild
to severe, but if severe and left untreated, can destroy a person's
capacity to function at work, at school, or even in the home.
The case histories in this brochure are typical for those who suffer
from obsessive-compulsive disorder--a disorder that can be effectively
treated. However, the characters are not real.
How Common Is OCD?
For many years, mental health professionals thought of OCD as a rare
disease because only a small minority of their patients had the
condition. The disorder often went unrecognized because many of those
afflicted with OCD, in efforts to keep their repetitive thoughts and
behaviors secret, failed to seek treatment. This led to underestimates
of the number of people with the illness. However, a survey conducted in
the early 1980s by the National Institute of Mental Health (NIMH)--the
Federal agency that supports research nationwide on the brain, mental
illnesses, and mental health--provided new knowledge about the
prevalence of OCD. The NIMH survey showed that OCD affects more than 2
percent of the population, meaning that OCD is more common than such
severe mental illnesses as schizophrenia, bipolar disorder, or panic
disorder. OCD strikes people of all ethnic groups. Males and females are
equally affected. The social and economic costs of OCD were estimated to
be $8.4 billion in 1990 (DuPont et al, 1994).
Although OCD symptoms typically begin during the teenage years or
early adulthood, recent research shows that some children develop the
illness at earlier ages, even during the preschool years. Studies
indicate that at least one-third of cases of OCD in adults began in
childhood. Suffering from OCD during early stages of a child's
development can cause severe problems for the child. It is important
that the child receive evaluation and treatment by a knowledgeable
clinician to prevent the child from missing important opportunities
because of this disorder.
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.
What Causes OCD?
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.
Do I Have OCD?
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.
How to Get Help for OCD
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.
What the Family Can Do to Help
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.
CONTINUING RESEARCH
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.
If You Have Special Needs
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
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 6000 Executive
Boulevard, Suite 513 Rockville, MD 20852 Telephone
301-231-9350
Makes referrals to professional members and to support groups. Has
a catalog of available brochures, books, and audiovisuals.
Association for Advancement of Behavior Therapy 305 Seventh
Ave. New York, NY 10001 Telephone 212-647-1890
Membership listing of mental health professionals focusing on
behavior therapy.
Dean Foundation Obsessive Compulsive Information Center
8000 Excelsior Dr., Suite 302 Madison, WI 53717-1914
Telephone 608-836-8070
Computer data base of over 4,000 references updated daily. Computer
searches done for nominal fee. No charge for quick reference
questions. Maintains physician referral and support group lists.
Freedom From Fear 308 Seaview Ave. Staten Island, NY
10305 Telephone: 718-351-1717
Offers a free newsletter on anxiety disorders and a referral list
of treatment specialists.
Offers free or at minimal cost brochures for individuals with the
disorder and their families. In addition, videotapes and books are
available. A bimonthly newsletter goes to members who pay an annual
membership fee of $30.00. Has over 250 support groups nationwide. Can
refer to mental health professionals in your area with experience in
treating OCD.
Tourette Syndrome Association, Inc. 42-40 Bell Boulevard
New York, NY 11361-2874 Telephone 718-224-2999
Publications, videotapes, and films available at minimal cost.
Newsletter goes to members who pay an annual fee of $35.00.
Trichotillomania Learning Center 1215 Mission Street, Suite 2
Santa Cruz, CA 95060-3558 Telephone: 408-457-1004 E-mail:
trichster@aol.com
Membership fee of $35.00 includes information packet and bimonthly
newsletter.
For information on other mental disorders, contact:
Information Resources and Inquiries Branch National Institute
of Mental Health 5600 Fishers Lane, Room 7C-02, MSC 8030
Bethesda, MD 20892 Telephone: 301-443-4513 e-mail:
nimhinfo@nih.gov
Books Suggested for Further Reading
Baer L. Getting Control. Overcoming Your Obsessions and Compulsions.
Boston: Little, Brown & Co., 1991.
DeSilva P and Rachman S. Obsessive-compulsive Disorder: that Facts.
Oxford: Oxford University Press, 1992.
Foa EB and Wilson R. Stop Obsessing! How to Overcome Your
Obsessions and Compulsions. New York: Bantam Books, 1991.
Foster CH. Polly's Magic Games: A Child's View of
Obsessive-Compulsive Disorder. Ellsworth, ME: Dilligaf Publishing,
1994.
Greist JH. Obsessive Compulsive Disorder: A Guide. Madison, WI:
Obsessive Compulsive Disorder Information Center. rev. ed., 1992.
(Thorough discussion of pharmacotherapy and behavior therapy)
Jenike MA. Drug Treatment of OCD in Adults. Milford, CT: OC
Foundation, 1996. (Answers frequently asked questions about OCD and drug
treatments)
Johnston HF. Obsessive Compulsive Disorder in Children and
Adolescents: A Guide. Madison, WI: Child Psychopharmacology
Information Center, 1993.
Matisik EN. The Americans with Disabilities Act and the
Rehabilitation Act of 1973: Reasonable Accommodation for Employees with
OCD. Milford, CT: OC Foundation, 1996.
Neziroglu F. and Yaryura-Tobias JA. Over and Over Again:
Understanding Obsessive-compulsive Disorder. Lexington, MA: DC Health,
1991.
Rapoport JL. The Boy Who Couldn't Stop Washing: The Experience and
Treatment of Obsessive-Compulsive Disorder. New York: E.P. Dutton,
1989.
Steketee GS and White K. When Once Is Not Enough: Help for
Obsessive Compulsives. Oakland, CA: New Harbinger, 1990.
VanNoppen BL, Pato MT, and Rasmussen S. Learning to Live with OCD.
Milford, CT: OC Foundation, 1993.
Videotape
The Touching Tree. Jim Callner, writer/director, Awareness
films. Distributed by the O.C. Foundation, Inc., Milford, CT. (about a
child with OCD)
References
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.
Message From The National Institute Of Mental Health
The year 1996 marks the fiftieth anniversary of the National Institute
of Mental Health (NIMH). Throughout the past 50 years, the results of
research supported by the Institute have brought new hope to millions of
people who suffer from mental illness and to their families and friends.
In work with animals as well as human participants, researchers have
advanced our understanding of the brain and vastly expanded the capability
of mental health professionals to diagnose, treat, and prevent mental and
brain disorders.
During the last decade of the twentieth century--designated "The
Decade of the Brain" by the U.S. Congress--knowledge of brain
function has exploded. Research is yielding information about the causes
of mental disorders such as depression, bipolar disorder, schizophrenia,
panic disorder, and obsessive-compulsive disorder. With this knowledge,
scientists are developing new therapies to help more people overcome
mental illness.
The National Institute of Mental Health is part of the National
Institutes of Health (NIH), the Federal Government's primary agency for
biomedical and behavioral research. NIH is a component of the U.S.
Department of Health and Human Services.
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.
Material appearing in this brochure is in the public domain except
where noted and may be reproduced or copied without permission from the
Institute. Citation of the source is appreciated. Portions that are
copyrighted may be reproduced only upon permission of the copyright
holder.
US DEPARTMENT OF HEALTH AND HUMAN SERVICES
National Institutes of Health National Institute of Mental Health
Bulk sales (Stock No. 017-024-01540-7) by the U.S. Government Printing
Office, Superintendent of Documents, Mail Stop: SSOP, Washington, DC
20402-9328.
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