The Vermont Longitudinal Study, which was led by Courtenay Harding, reported on the long-term outcomes of patients discharged from Vermont State Hospital in the late 1950s and early 1960s. Her findings, which told of remarkably good outcomes for the majority of the patients in her study, belied conventional beliefs that few people diagnosed with schizophrenia ever recovered.
In 2024, she published a book, Recovery from Schizophrenia: Evidence, History and Hope, that told of her Vermont Longitudinal Study and how many in psychiatry, rather than celebrate the relatively good outcomes for the patients in her study, instead were quite furious with her for upsetting their beliefs.
In addition to her academic career as a professor of psychiatry, Harding has worked with 30 states and nearly two dozen countries to redesign their systems of care so they better promote the long-term recovery that her longitudinal study revealed was possible. The recipient of many honors, she received the Alexander Gralnick Research Investigator Award from the American Psychological Foundation for “exceptional contributions to the study of schizophrenia and other serious mental illnesses and for mentoring a new generation of researchers.”
This interview was conducted by email.
Robert Whitaker: Your longitudinal study of outcomes for chronic patients discharged from Vermont State Hospital was—and is—of landmark importance. As you note in your book Recovery from Schizophrenia: Evidence, History, and Hope, your findings tell of how so many people, even patients deemed profoundly disabled and hopeless, can recover with time and the proper support. Your first report was published in 1987, and it challenged the conventional belief that schizophrenia patients need to stay on antipsychotic medication throughout their lives and are unable to achieve, at best, more than a marginal level of functioning.
But before we dig into that study, can you tell us how you came to do this research? I did not know of your personal backstory until I read your book, and I was quite surprised to learn of your path to doing this research.
Courtenay Harding: After I lost my husband when I was 32, I was suddenly needing to support my young family. I decided that I would become a pediatric nurse practitioner because I knew kids. However, the chairman of nursing at Vermont College, who trained at Menninger’s as a psychiatric nurse, wanted me to be a psychiatric nurse too. I fought the idea. I wanted pediatrics.
However, it turned out that the only job I could get for the summer between my junior and senior years was at Vermont State Hospital.
I transferred to the University of Vermont that fall, but UVM goofed up my transfer and I ended up in psychology. When I needed a small research project to complete my senior year, I returned to the hospital to find the smallest one available. That is when I stumbled upon what later became internationally known as the Vermont Longitudinal Study. These people had participated in a highly innovative rehabilitation program 20 years prior and were reporting, in writing, about how their lives were going.
WOW! Letters! I could take them home to do my project! When we figured out what a gold mine we had, over 125 professors, clinicians, statisticians, and other professionals from all over the country taught me, in a university without walls, how to set up a comprehensive, rigorous, and methodologically sound study. The NIMH and the Robert Wood Johnson Foundation funded us for many years, and I studied what these patients had to teach us for the rest of my career. I never would have guessed that would be the path I would end up on.
Whitaker: Your story reminds me of an adage I once heard about how to lead a successful life: When fate offers you an opportunity, grab it, which you certainly did.
However, today is hard to imagine that the NIMH would support a major study whose lead investigator had not yet earned a PhD (or MD), and who was not yet schooled in research methodologies. Can you tell us about how that came about? Why did the NIMH trust you with this work?
Harding: Well, this study was a remarkable opportunity. The superintendent of the hospital had already found 87% of this cohort 20 years after his rehabilitation program from 1955 to 1965 via one letter of inquiry. These people had previously been followed 10 years, having participated in a revolutionary treatment/rehabilitation program from 1955 to 1965.
Professor George Albee (former president of APA) at UVM, where I was graduating with a bachelor’s degree, suggested that I call Loren Mosher, Chief of the Schizophrenia Center at the NIMH, to see if he might be interested. I did and he was. He announced that I only had seven days before the deadline. Out of sheer chutzpah, I decided to go for it.
After all, I wasn’t a green 21-year-old. I was already 36, a nurse with experience caring for psychiatric patients, a year’s worth of research methodology and design in psychology as well as some schizophrenia research literature under my belt, all of which had been woven into my first grant proposal. The original principal investigator (PI), psychiatrist George Brooks, was now superintendent of the hospital and he hired me that summer to conduct an all-important pilot study to demonstrate that we had participants who would let us back in the door.
After that summer, my family and I moved to Boston, and I went back to pediatric nursing. Brooks and I were given a site visit from NIMH at the state hospital in the spring. It happened that the four visitors were probably the only four in the field that would have even considered the possibility of a PI without a terminal degree.
They included Professor John Strauss, then at the University of Rochester School of Medicine, who had conducted the Washington Center site for the World Health Organization’s International Pilot Study of Schizophrenia Study with Prof. William Carpenter. They had found indicators of improvement and recovery in their five-year study. Strauss arrived with Professor Malcolm Bowers, who studied drug interactions with psychosis and was the vice chair at Yale Psychiatry. Dr. Loren Mosher, chief of the center in DC, and Dr. Jack Maser, his associate there, were the other two who visited.
They were very diplomatic and said they knew I had only seven days to write the grant proposal. Would I consider quitting my job as a neurosurgical ICU nurse at Boston Children’s Hospital, and stay in Boston, which was rich in resources? I was to talk to knowledgeable people about the project across the next 18 months and resubmit a new proposal. The four visitors proposed to give me $27,000 (equivalent to $133,348 today) to use for my salary, consulting fees, and ad hoc secretarial support for the final rewrite. This proposal alone was highly unusual, and that plan is exactly what I did.
Whitaker: So now you had a promise of potential funding. What was your next step?
Harding: Professor Brendan Maher, Chair of Psychology at Harvard was interested in increasing scientific studies of schizophrenia. He worked with me every Friday afternoon over the next year on methodology and design. He also sent me to colleagues who had special knowledge of specific areas such as having a control group who did not have the rehab program, as well as scales and schedules to use in interviews, and which statistics to use. All of this information, which made sense to me vis-à-vis Vermont, was wrapped into the new grant proposal plan. Not one person accepted consulting money.
It became clear to me that I should flip the narrative and be the grad student who hired professors and experienced clinicians to collect the data. The chief of biomedical statistics at UVM Medical School, Professor Takamaru Ashikaga, did the analyses, while I administered the grant to make sure it was being run correctly and wrote new grants.
My science role would be to make sure that our participants were understood and treated as people. I worked with Professor Stanley Herr at Harvard Law, who had taken down the notorious Willowbrook State School where 600 intellectually disabled students were horrendously maltreated, to make sure there were multiple protections in place in an era (the 1970s and ’80s) that had spotty protections for research subjects.
The next group of site visitors checking out the second grant proposal were traditional middle-level people who had fits and conniptions about my lowly status and tried also to strip out the longitudinal section and re-diagnosis. “We know they are just a bunch of old chronic schizophrenics,” they said. I was appalled and stuck to my guns and wouldn’t change it. In the end, we were given a nearly perfect score. I became kind of a mascot at NIMH showing that they too were human. It was kind of a shock for me to receive my doctorate at age 43 and become just one of the usual crowd of applicants.
Whitaker: Can you tell us more about this cohort of patients? When were they discharged from Vermont State Hospital and what was their prognostic status at that time? And what was the nature of this “revolutionary treatment/rehabilitation program?”
Harding: The patients that we studied taught us an amazing amount about human resilience and fortitude.
They were considered to be the worst cases . . . the hopeless cases relegated to the very back wards of the state hospital. They had either been in and out of the hospital many times or had stayed in for years. They had been subjected to many different forms of “treatment” such as electroshock, cold baths, insulin shock, etc.
In the early 1950s, at the peak of hospitalized psychiatric patients in the US, Vermont had two psychiatrists for 1,300 patients in its one and only state hospital. One was George Brooks, a Vermonter himself and an avid reader. At this time, across the US there was huge excitement about a drug for patients and it was being tested. It was called chlorpromazine (Thorazine) and was made from an earlier pharmaceutical in 1951 used to relax naval hospital patients getting ready for surgery.
In the early 1950s, Dr. Brooks became one of the first to run official clinical trials with his patients. When it seemed to calm people, he, like every other state hospital doc, put most all of their patients on it.
At first, it appeared to be quite successful. Many people were discharged and that excited the staff as well. However, Brooks found a group of people who were only modest responders and still stuck in the back wards. They were definitely not ready to leave. As a group, they had what was considered very disturbed lives with a multitude of clinical descriptions, such as bizarre delusions, hallucinations, problems with attention, excessive guilt, highly distractible, problems with attention, little to no emotions, withdrawn, speaking very little, apathetic, no energy, or grandiose and lots of ideas and speaking all the time, and so on.
In the mid-1950s, they had an average of 16 years of illness, 10 years being totally disabled. They were middle-aged, poor, slow, touchy, suspicious, temperamental, unpredictable, and many with a medical history of alcohol and/or drug abuse. Sixty-two percent were single.
They were still smearing feces on walls, running around without clothes, speaking animal-like gibberish even after their introduction to Thorazine. Brooks was totally flummoxed. In 1955, he simply did not know what to do.
He then did something amazing. He admitted to patients that he did not know what to do next and needed their help. In addition, he read about a new program in England for outpatients called a Therapeutic Community “designed for patients who were considered to be both untreatable and unemployable.”
This program switched the power structure from hierarchical to horizontal authority. Little by little, he and the staff began to work together with these patients and aides as equals in running the place implementing “education and work, shared decision-making, with interdependence considered higher than independence. Ex-patient clubs and living and learning opportunities were integrated into every social interaction and crisis.”
The Department of Vocational Rehabilitation had worked hand-in-hand with the state hospital since the war. Peer groups were organized both in and out of the hospital. People went to work. Social interactions and relationships were prioritized. The model became one of rehabilitation, self-sufficiency, and community integration. Brooks’ rehab program ran from 1955-65 and gained world-wide attention. A limited five-year study of outcomes was also completed in 1965.
In 1975, Dr. Brooks wrote to everyone on the 20th anniversary of the program and asked them how they were and what they were doing in their lives. He received an unheard of 87% reply. These were the letters I chose for my research project during my senior year. It was these people who had participated in this pioneering rehabilitation enterprise, who were the subjects of our later research project. With them we produced one of the longest longitudinal studies of schizophrenia and depression with psychotic features in the world literature, with an average follow-up of 32 years. Eventually 97% of this cohort were found and accounted for.
Whitaker: A quick question. What year was it when you launched your NIMH-funded follow-up study? And your assessment of their status at your follow-up—was this done in person, by phone, or by letters? And what all did you assess—for instance, ongoing symptoms, rehospitalizations, social history, work history, use of medications, and so forth? What picture were you seeking to get from this assessment of their lives?
Harding: We started our NIMH funding in 1977 to put it all together. We began interviewing in 1980. There were 269 people in the study. We removed 22 people because they were also severely intellectually disabled, leaving 247. One hundred sixty-eight (68%) were alive and interviewed. Sixty-one had died (25%), 11 people (4%) refused to have their data used after participation, and we were unable to find seven (3%) after searching across hill and dale.
There were a few people living out of state and our interviewers were given a “See America” ticket by United to go interview them and see if moving out of state made them different. They weren’t, but we noticed that they lived in much warmer places such as Houston and Arizona and Florida! Maybe they were smarter because northern New England usually has long, snowy, and freezing winters!
We saw all live subjects in person. Appointments were made. Our interviewers sat mostly at kitchen tables in their homes. People seemed delighted to tell their stories and often fed our interviewers snacks. Our interviewers actually gained weight. Some conversations went on for several hours. The interviewers, who had five to seven years of experience as clinicians, had no knowledge of what was in each person’s records. They saw people with fresh eyes. The average age in the Vermont study was 59, ranging up in age to 83.
We were trying to capture a life lived up to that point. We ended up with two interviews. The first was a cross-sectional appraisal of how each person was during the past month. We had 15 well-regarded scales and schedules being used in the field at the time. This interview contained 135 questions plus 95 additional observations made by the interviewer himself. Questions included areas such as major areas of functioning such as work, residence, relationships, degrees of satisfaction, responsibilities for day-to-day self-care, odd behaviors noted, current areas of environmental stressors, and any contact with system of care.
Another appointment was also set for the following week for the interviewer to return and complete the longitudinal set of questions, looking at the “life lived.” It had 156 questions. We covered subjects such as symptoms past and present, substance use, current prescriptions, work, residence, friends, hospitalizations, medication histories, etc. We also used a classical Life Chart to chart longitudinal patterns across ten domains. For those people who had already died, we had protocols for interviewing their family, friends, and clinicians. When the raters completed their work, they sat and wrote their own impressions as clinicians.
The records were considered by the first NIMH reviewers as some of the best and most comprehensive they had seen because of the original Thorazine trials. These substantial documents were full of episodes, symptom profiles, side effects, general health, family, work, and social histories. From 1955 to 1965, the first 10 years of the hospital rehabilitation and treatment efforts, participation in the program was documented. We also documented any other hospitalizations which happened later.
Furthermore, we also had the records from the Vermont Department of Vocational Rehabilitation, which told what had been done to train and place people in jobs. The hospital and rehab teams worked together. Our goal was to find out just who these people were as human beings, not just as study participants. We have spent over 40 years to find out and appreciate what they taught us.
Whitaker: So, what did you find out about the lives of this cohort? Can you describe the spectrum of outcomes that you reported?
Harding: We had three sets of results from three different, but integrated phases. The first results revealed how people were the day they were interviewed. The second revealed how they were across time—the lives they had led. The third addressed the big question in formal psychiatry: Did these people, who were originally diagnosed with psychotic features by DSM-I or DSM-II criteria, have what psychiatry thinks today is truly schizophrenia and or major depression with psychotic features? These are critical questions.
Professor John Strauss, internationally known as an investigator of schizophrenia and now at Yale along with his chief resident, Dr. Alan Breier, took on the challenge of answering that big question. Our findings were published in 1987 by the American Journal of Psychiatry as the first two papers in that volume.
Each of the “outcome” results taught us a new appreciation for these participants’ achievements, and they have continued to do for so many years. These results keep challenging the century old idea that people with “schizophrenia” either achieve only marginal levels of functioning or have a downward course. It should be noted that those who died first, leaving the rest to be interviewed, were not the worst off. In following up systematically with their family, friends, and clinicians, we found the same division of recovered, improved, and not improved.
Whitaker: What were the outcomes you reported? How were the people the day they were interviewed, and during the past year?
Harding: Of the 168 people interviewed, here were the results:
- One hundred forty people (83%) were not in the hospital in past year. Five men were in the hospital, and the remainder were elderly and in level 2 nursing homes. All these people had been expected to grow old and die in the hospital.
- One hundred eleven people (66%) had moderately close to very close relationships; this finding was in direct challenge to expectations. In addition, 102 people were either married, widowed, or divorced (62%).
- One hundred twenty-eight people (76%) met with friends every week or two. All participants had received a large amount of social support across rehab in the 1950s and ’60s, and that clearly made a difference in the long haul.
- Seventy-nine people in this group were still employed (47%). The average age of this cohort of 168 people was 59 to 83 and, thus, many of the 53% who weren’t employed were retired and/or elderly. This was far greater than what current beliefs would have projected.
When I reported these findings on National Public Radio, I received calls from all over America telling stories of people who were physicians, attorneys, teachers, engineers and the like who also once had schizophrenia. They did not tell anyone because of the stigma.
Employment depended on education primarily. These Vermonters had attended school up to 8th grade but had all sorts of skills for use in the community. It was interesting to find that many women, who were once patients, were now taking care of other people.
- One hundred twenty-one people displayed slight or no symptoms (72%). Complete recovery required in our study to have no further symptoms and no odd behaviors, working, and relating well to others. Significantly improved was defined as having all of that except one thing. Since then, we learned that people could meet all of the recovered criteria with a residual symptom not standing in the way.
- One hundred thirty-three people met their own needs (79%). They once had regressed to the point where they were unable to brush their teeth, comb their hair, or use a fork. Many even threw off their clothes, smeared feces on walls, and spoke animal gibberish. Now they were able to pay bills, cook, and clean, generally take care of themselves, and often others.
- One hundred twenty-eight people led moderate to very full lives (76%).
- About 25% of the 168 participants stayed on psychotropics; about 50% had gone off such medications; and another 25%, who were off medications, tried to self-medicate for a short time if they were feeling out of sorts and then would put the meds back in their drawers.
Whitaker: Can you tell us more about their use of antipsychotics and other psychotropics?
Harding: At first, many people said that they were still on psychotropic prescriptions for schizophrenia and depression as expected. However, we experienced a big surprise. During the second interview a week later, participants began to trust our interviewers more. Some began to show them drawers and pantries full of unused prescription bottles that they had dutifully picked up at the pharmacy and stored away. They did not want their community mental health docs to know.
They also told us stories that some of their psychiatrists had yelled at them when they suggested tapering off their medication. They were told they would become sick again if they went off. That threat is actually true because a fast withdrawal would have caused significant harm after long-term use. The brain itself seems to change the way it functions during long-term use. However, these Vermonters were able to eventually titrate off and now some psychiatrists are learning to assist patients to withdraw their use very slowly.
All of those participants who successfully withdrew were found in the recovered group as well as many in the group considered to be recovered in all areas but one. The more recent Chicago long-term study (by Martin Harrow) also found that patients who went off their medications after a couple of years of use were in their recovered groups.
Whitaker: In addition to the papers you published telling of study results, you published an influential paper titled “Empirical Correction of Seven Myths about Schizophrenia with Implications for Treatment.” One of the seven myths, you wrote, was that patients diagnosed with schizophrenia “must be on medication all their lives,” when, in “reality, it may be a small percentage who need medication indefinitely.” And perhaps most important, you told of how your study—and numerous others—challenged the common belief that schizophrenia ran a downward long-term course. Can you tell us about this larger body of research?
Harding: Unbeknownst to many people, there are eleven two-to-three-decade studies from across the world studying 2700 people once diagnosed with schizophrenia who were found to have significantly improved or recovered. These percentages were the following:
1972- Bleuler in Switzerland after 23 years (53-68%)
1973- Hinterhuber in Austria after 30-40 years (69.6%)
1976- Ciompi and Müller in Switzerland after 37 years (57-63%)
1977- Kreditor in Lithuania after 20+ years (84%)
1979- Huber et al in Germany after 20 + years found 65%)
1979- Tsuang et al in Iowa 500 after 37+ years (46%)
1980- Marinow in Bulgaria after 20 years (72.5%)
1987- Harding et al in Vermont after 32 years (68%)
1987- Ogawa et al in Japan after 22.5 years (77%)
1995- DeSisto et al in Maine after 36 years (49%)
2021- Harrow et al in Chicago, Illinois after 15-20 years (73%)
Whitaker: How did psychiatry, as a medical discipline, respond to your findings?
Harding: I started to speak at international and national meetings as well as Grand Rounds at medical schools. I thought psychiatrists would do a jig in the hallways but, alas, the opposite occurred. Many psychiatrists were quite furious and thought that those recovered people more than likely had affective disorders instead. I was yelled at repeatedly.
I realized that these findings were a challenge to the 125-year-old belief begun by a German physician named Emil Kraepelin. At the turn of the last century, he had written in a textbook to train new physicians that people with schizophrenia could not get better. He did not realize that administrative decisions and other terminal illnesses were mixed into the studies of his groups. This made me want to provide more evidence.
Strauss and Breier decided that they would take all the participant’s historical records and apply the new DSM-III criteria (published in 1980) to see how they would have been diagnosed by the newest system. We also wondered whether a difference in diagnostic criteria could explain the good outcomes in our study. Unlike many state hospital records across America in the 1950s, the Vermont State Hospital records had been found to be excellent by the original NIMH site visitors. These records had not only symptoms, behavioral indicators, medical, and health data, but also family, occupational, relationship, and educational histories.
Strauss and Breier went through two reliability sub-studies before they did the actual re-diagnostic effort because the DSM-III was new to them as well. Each of the 269 patients were then reviewed and re-diagnosed.
Whitaker: So, what did they find? Were your good outcomes an artifact of different criteria for diagnosing schizophrenia in the 1950s?
Harding: In the 1950s, the original Vermont cohort, at index hospitalization, included 213 (79%) people diagnosed as meeting the DSM-I criteria of schizophrenia. Thirty-four patients (13%) were considered to have affective disorders, mostly major depression with psychotic features. An additional 22 people (8%) had severe developmental delays and who were later removed from the analysis.
Our hardest data on long-term outcomes for patients, who met DSM-III schizophrenia, was from the 82 people who were alive and interviewed. Of these 82 people:
- Sixty-seven people were not in the hospital in past year (82%)
- Fifty people had moderately close to very close relationships (61%)
- Fifty-six people met with friends every week or two (68%)
- Thirty-three people in this group were still employed (40%)
- Fifty-six people displayed slight or no symptoms (72%)
- Sixty-six people met their own needs (81%)
All of these findings challenged expectations. Nothing radically changed the outcome numbers if you compare the first group to the smaller cohort that met DSM-III criteria for schizophrenia.
In 1987, we wrote at the end of our publication in APA’s American Journal of Psychiatry that: “For one-half to two-thirds of those subjects who retrospectively met the DSM-III criteria, long-term outcome was neither downward nor marginal but an evolution into various degrees of productivity, social involvement, wellness, and competent functioning.”
The criteria from the future DSM classifications have not changed except that the schizophrenia subgroups were deleted in the DSM-5 because patients were found to slide between them.
There are a few psychiatrists who continue pioneering long-term studies, psychosocial programs, and tapering medications across the world. These efforts are described in the last four chapters in our recent book. Change is incredibly slow-moving when old belief systems are involved.
Whitaker: Final question. Is our current paradigm of care that emphasizes continual antipsychotics use worsening overall recovery rates for patients diagnosed with schizophrenia, and robbing many of a chance at a robust recovery?
Harding: As I said earlier, all the completely and most significantly improved people in the Chicago and Vermont studies were off meds. Isn’t there a lesson to be learned here?
Whitaker: Thank you, Courtenay, for taking the time to do this interview. Your book, Recovery from Schizophrenia: Evidence, History, and Hope, tells of the hopeful finding that emerged from your research. I can only hope that leaders in American psychiatry, and frankly, leaders in global psychiatry, will read it and develop protocols that promote such outcomes.
Harding: Thank you for offering me this opportunity. The excellent work that MIA is doing each week informs us all.