Schizophrenia not only affects the person struggling with hallucinations, delusions and disorganized thoughts. It wreaks havoc through the entire family.
Charlotte Test, of Dallas, Texas, knows that all too well. Test and her late husband Donald Test Jr., who died in 2016, have a very personal connection to the devastating effects of schizophrenia. Donald Test’s late sons, William and Henry, were diagnosed with schizophrenia as teenagers at a time when there wasn’t much societal awareness of the disease.
“We wanted to help other families who are going through this, to save others the agony and hurt this disease causes. This is a terrible mental illness that affects the lives of the whole family and can tear apart a family—not only can, but does,” Charlotte Test said.
They became connected to Vanderbilt through Dallas psychiatrist Jack Martin, M.D., a 1953 graduate of Vanderbilt University School of Medicine who cared for William and Henry. Since 1999, the Tests have made multiple gifts to the Department of Psychiatry and Behavioral Sciences at VUMC to support research into and treatment of schizophrenia and related disorders. This year a gift from Mrs. Test supported the Department of Psychiatry’s First Episode Psychosis Initiative. “Our gifts support a program with a compassion to help not only the person who is ill, but the family trying to cope as they go along,” she said. (See sidebar on page 35 about the Tests’ gifts.)
“Vanderbilt is uniquely positioned to care for patients during their first episode of psychosis,” said Stephan Heckers, M.D., the William P. and Henry B. Test Professor of Schizophrenia Research and chair of the Department of Psychiatry and Behavioral Sciences. Every year about 700 patients seek treatment for psychosis at Vanderbilt Psychiatric Hospital. Of those, about 100 are first-episode patients.
Patients with psychotic disorders often experience symptoms of psychosis for about two years before the disorder is diagnosed, and Heckers said it’s often difficult for families to know what’s going on. “The person in the early stage of psychosis might struggle in school, withdraw from friends or become irritable. Grades might go down. But then it gets worse. The person hears voices or behaves strangely, symptoms that are so unusual that a parent or friend will realize something isn’t right. And that’s normally when we see them,” he said.
“Our hope is that we can get people diagnosed early. The earlier we can diagnose and treat, the better the outcome,” he said.
The majority of patients with schizophrenia and other psychotic disorders need a combination of psychotherapy and medication management. But first-episode patients need to be treated in a different manner than someone in the chronic stages, Heckers said.
At Vanderbilt Psychiatric Hospital patients can be taken care of in the inpatient unit, the outpatient partial program (morning until 2 p.m.) and the outpatient clinic. “You need all three components to help the person who experiences a first psychotic break. We offer three environments to deliver the level of care that’s required,” he said.
Schizophrenia affects about 1 percent of the population, and another 2 percent have similar psychotic illnesses. The disease often leads to difficulties including holding a job or caring for oneself. However, when patients with schizophrenia respond to treatment, they can lead rewarding and meaningful lives.
“Our plan has always been to create a program at Vanderbilt that allows us to bring clinical services for young people who are in the early stages of a psychotic disorder together with research and education,” Heckers said.
Vanderbilt’s Department of Psychiatry and Behavioral Sciences offers a training program for psychologists and psychiatrists who choose to specialize in psychotic disorders. And the department’s research into psychosis includes brain imaging, cognitive testing and genetic studies. Patients with psychosis are followed for two to three years for additional studies. “We’ve learned the past couple of years that research during a single encounter with these patients is not enough. So we’ve shifted to longitudinal studies to follow our patients over several years,” Heckers said.
Once a patient with psychosis has been stabilized in the inpatient program, the Vanderbilt research team is able to follow them through the partial program and the outpatient clinic. “You can think of care of the patient with psychosis as a gradient—very intensive early on, a partial program in the middle, and transitioning to outpatient care where it becomes less and less frequent,” Heckers said.
“What we’ve found is that those 100 first-episode patients very much look alike when they come in with their first psychotic break. They receive similar treatment. But then they have very different trajectories over the two years we follow them,” Heckers said. “It’s very hard, based on just our clinical assessment, to predict who’s going to do better and who’s going to do worse, so that’s the core of our research interest.
“With our research we aim to be able to get a better sense of what pattern predicts better or worse outcomes. Some patients benefit greatly from treatment and some do not respond at all. Just labeling a person with a diagnosis is not enough. Psychotic patients are quite different from each other. If we don’t pay attention to this heterogeneity, we really can’t help the individual in the best possible way.
“Our hope is in the future we can not only make a diagnosis, but have a checklist that allows us to be more accurate in predicting how a person will respond to treatment and how they will do in the future,” Heckers said. “It will allow us to avoid treatment that is not necessary or that might be harmful, and maximize the therapeutic benefit of the medications or interventions that we have.”
Heckers said the department is grateful to the Tests for their commitment to sparing other families from the struggles William and Henry endured. “Charlotte and Don developed a passion to help others with this illness,” Heckers said. “The Tests’ gifts allow us to raise the bar in all three aspects of our mission: clinical training, patient care and research. There is now a substantial opportunity for recovery. Psychosis doesn’t have to end in tragedy. We can allow people to have meaningful lives and live independently.”
“My husband and I have admired the quality of the team at Vanderbilt, their expertise in their field and their intense zeal to go beyond where they are to find new ways to help patients who are experiencing psychosis,” Charlotte Test said. “The department’s first-episode research sounds so wonderful—to think someday they might be able to stop the progression of the illness.”