Post-9/11 ‘Symptoms’ Don’t Add Up to Disorders

The scope of the World Trade Center disaster was such that trying to study the effect on direct victims was nearly impossible. It was estimated that roughly 160,000 persons were directly affected by the collapse of the WTC complex—including people who died, people who were evacuated from the towers, people who were physically present on the streets below, rescue workers, and the families of each of these.

North and others knew early on that the victims of the disaster would be at extremely high risk of developing posttraumatic disorders. Yet quantifying those disorders would be an overwhelming task.

“In Oklahoma City, we did full diagnostic interviews on a very small population, relative to the number of direct victims in New York City,” North said. “Yet it took us months to complete structured clinical interviews. It was a cumbersome, labor-intensive process that was logistically very difficult.” In addition, she said, it takes time and money.

North was not the only one thinking of studying the WTC victims in those early days. Researchers at Cornell University, Columbia University, New York State Psychiatric Institute, Disaster Psychiatry Outreach, and the New York Academy of Medicine all floated grant proposals, as did several others throughout the country. Only a few have published the results of their efforts, in part because some of the research is still under way. Many have not published any data, because they were significantly delayed in their efforts or never got the study approved. Others had difficulty getting grant or institutional review board approvals.

“I ended up doing the research with my own money,” said Lynn DiLisi, M.D., a professor of psychiatry at New York University and principal investigator of a study by Disaster Psychiatry Outreach, a New York nonprofit foundation. DiLisi’s results have just recently been accepted for journal publication. DiLisi, North, and others applied to the National Institute of Mental Health for rapid grant approval; however, each was turned down, with indications that the institute did not believe the studies proposed were feasible—largely for the same reasons cited by North.

Randall Marshall, M.D., the director of trauma studies at the New York State Psychiatric Institute and a professor of psychiatry at Columbia University, noted that in the diagnosis and treatment of PTSD “there’s always been this sort of fuzzy boundary between a really normative reaction to an empirical trauma and the emergence of chronic PTSD. It really is not at all clear where you draw the boundary, and I am not sure we’ll ever get it clear.”

In a sense, though, said DiLisi, the data that were collected “back up what we already thought—that there is a very large group of people who suffered early, acute stress reactions, which by four to six months were resolving.”

North calls these responses or reactions “distress or subdiagnostic distress, which is perfectly normative.” She said that data from the directly affected victims her team interviewed in Oklahoma City bear this out. “And it serves to separate the responses from psychopathology. Otherwise, we can inadvertently trivialize the experiences and disorders of directly exposed people with PTSD.”

“Most of the studies published thus far have been snapshots of acute responses,” said Roxanne Cohen Silver, Ph.D., a professor of psychology and behavioral sciences at the University of California at Irvine. Silver strongly agrees with North, noting that in her post-9/11 report, she did not use the term “PTSD.”

“I do believe that it really depends upon what your discipline is. An epidemiologist is very likely to report on numbers of specific diagnoses,” Silver noted. She believes the reactions reported in the studies to date simply represent the vast range of coping and resolution mechanisms inherent in humans, and as such, she said, they are normal.

Interestingly, though, regardless of the researchers’ background and experience, experts also agreed that the studies provide data on one very important clinical question—whether any specific reaction or response is more predictive of more severe stress and potential development of PTSD (see box above).

So what have we learned?

“My interpretation is,” said North, “that after a disaster, we need to subdivide the population into who is psychiatrically ill and who is subdiagnostically stressed, and then use that distinction to direct people to the appropriate kind of treatment.”

North is still planning to study the direct victims of the WTC collapse to see whether she can obtain data to compare their longitudinal course with that of the direct victims of Oklahoma City.

“I’d like to see research focus on therapeutics and interventions at this point,” noted Marshall. Although it’s important to follow the levels of symptoms over time, he said, the whole point of the epidemiological research is to steer and direct therapeutic interventions accordingly.

DiLisi agreed and noted that research on early interventions could be pivotal. “The question is, Do you give them medications very early on and, if so, what medication? Or do you treat them with one sort or another of talk therapy? There’s really nothing in the literature yet on early intervention. We need that. It’s important to know, if there’s another disaster, how you mobilize your mental health resources. And we’ll always wonder if there was something different we could have done to minimize the impact of 9/11, so long after the event.” ▪