Why PTSD Is So Hard to Diagnose and Treat

Post-traumatic stress disorder closes people off. They withdraw — often reluctant to talk about what they’ve experienced and unable to trust others or themselves. But many leading treatments for the condition require just that.

The treatments for PTSD — including several forms of psychotherapy and medication — are effective for many patients, but they don’t work for everyone. They can be expensive. Sometimes, they can be so distressing that patients stop the treatment before it’s complete.

“The field has acknowledged for years that we need to do better for our patients,” Dr. Jerry Rosenbaum, a professor of psychiatry at Harvard Medical School, said Tuesday at a meeting of experts tasked with advising the Food and Drug Administration on whether to approve the first new medication in decades for PTSD.

The treatment would use the psychoactive drug MDMA, also known as Ecstasy, in combination with talk therapy to relieve symptoms of the disorder, which can cause intrusive thoughts, flashbacks and nightmares and increases the risk of suicide or death from other causes. Proponents say the drug can tamp down on patients’ fears and anxieties and help them to feel compassion for themselves as they work through their trauma in therapy. Two clinical trials have shown promising outcomes, but experts have raised concerns about how reliable the data is and how safe the drug may be.

Roughly six percent of the American population will develop PTSD at some point in their lives. Only a fraction of those patients currently recover, Dr. Tiffany R. Farchione, director of the F.D.A.’s Division of Psychiatry Products, said at the meeting Tuesday. And many people with PTSD symptoms struggle to get diagnosed in the first place.

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The gold standard for diagnosing PTSD is the Clinician Administered PTSD Scale, known as CAPS-5. Clinicians ask patients about symptoms and their severity, how often they re-experience unwanted memories, what measures they take to avoid reminders of traumatic events, and more.

But many people with the disorder won’t even get assessed for it.

In part, that’s because patients may not recognize signs of the disorder, particularly if the person experiencing symptoms isn’t a veteran, said Edna Foa, a professor of psychiatry at the University of Pennsylvania Perelman School of Medicine. The public perception of the disorder is still so tightly tied to the idea of military combat that those who experience a natural disaster or sexual assault may not realize they, too, have undergone a trauma.

Primary care providers, who might be the first to hear about a patient’s sleep issues or mood changes, may not recognize some symptoms as signs of the disorder, said Dr. Shaili Jain, a PTSD specialist at Stanford University.

PTSD is also an avoidance disorder. People with the condition typically avoid reminders of the traumatic event and sometimes don’t want to discuss it or look for treatment.

“One of the problems with PTSD is, you pull inward,” said Dr. John Markowitz, a professor of clinical psychiatry at Columbia University. “You avoid people, because you feel you can’t trust them, and so you might not seek help even if you need it.”

Psychotherapy is the first line of treatment. One common and effective approach, developed by Dr. Foa, is called prolonged exposure. Patients describe the traumatic event they experienced in detail, and then work through a list of people, places or situations they have avoided since the event, coaxing them to gradually confront their fears.

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Another leading method is cognitive processing therapy, in which mental health providers work to help patients understand how the disorder has altered the way they view themselves and the world.

“If you can help someone balance their thinking, then their emotions and behaviors will follow,” said Matthew A. Robinson, the program director of McLean’s Trauma Continuum of Care at the Hill Center in Massachusetts.

Other types of treatment include eye movement desensitization and reprocessing therapy, which activates both sides of the brain as a patient describes a traumatic event, and interpersonal psychotherapy, a form of talk therapy that focuses on how trauma affects relationships.

These therapies can be very effective for people with PTSD, but studies estimate that between one quarter to one half of patients will not respond to cognitive therapy. And many also stop treatment early. On average, nearly 20 percent of participants in clinical trials for PTSD treatments drop out. Researchers think that number is most likely higher in practice and may be driven in part by patients’ discomfort at revisiting their worst memories in what can feel like excruciating detail.

The cost of therapy, issues with insurance coverage and the shortage of mental health providers can also create barriers to treatment, Dr. Jain said.

The F.D.A. has approved two medications to treat PTSD: the selective serotonin reuptake inhibitors sertraline and paroxetine. Clinicians might offer drugs not specifically approved to treat PTSD to help with the disorder, including prazosin, a blood pressure medication that research suggests can alleviate nightmares. While medications can help with symptoms, they don’t address the underlying causes of PTSD.

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Between 40 to 60 percent of people who have received treatment for PTSD still meet the diagnostic criteria for the disorder, Dr. Rosenbaum said Tuesday at the F.D.A. meeting.

Over the last decade or so, experimental treatments including MDMA-assisted psychotherapy, virtual reality therapy and neurofeedback, which involves modulating brain activity, have gained traction.

The more effective options to address the disorder, experts said, the better off patients will be.

Dana Smith contributed reporting.

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