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Home arrow Psychology arrow Long-term outcomes in psychopathology research : rethinking the scientific agenda

Preface

As President of the American Psychopathological Association (APPA) in 2013, I had the honor of organizing the 103rd annual meeting on March 7-9. The meeting focused on examining what we have learned about the long-term course of illness and functioning of individuals treated for mental health and substance use disorders and the unexplored areas that require further attention. The stage for the meeting was set on the evening of March 6 with the screening of Kings Park: Stories from an American Mental Institution. Directed by Lucy Winer, this documentary film offers a personal narrative of the past and present history of the US mental health system. Lucy, a seasoned filmmaker, had been admitted to Kings Park Psychiatric Center in the late 1960s when she was seventeen years old, placed on the violent women’s ward, and given a clinical diagnosis of schizophrenia. Thirty years later, she embarked on this film, offering viewers a disturbing history of how psychiatric patients were treated before deinstitutionalization and how they continue to be treated today. Indeed, the film concludes with interviews shot in the county jail. The personal tone of the question-and-answer period following the film was echoed throughout the meeting, and thus voices missing during past APPA meetings were encouraged and welcomed.

Like the authors of the chapters in this volume, I have devoted a considerable part of my career to outcomes research. The shape and focus of outcomes research continue to expand as breakthrough findings on antecedents, risk factors, effect modifiers, and outcomes are published and new technologies are developed. At times, however, major advances derive from modest sources. Indeed, the original breakthroughs came about through the remarkable narratives published by Kraepelin and Bleuler. Until recently, personal narratives and dialogues between investigators and study participants all but disappeared from clinical outcomes research. The pendulum is now swinging toward a more inclusive approach to research. In this regard, by starting the 2013 meeting with the screening of Kings Park, the APPA meeting added faces and voices who had not previously attended these meetings. By design, the meeting also included talks and critiques by experienced investigators who had publicly

Preface

disclosed their psychiatric narratives and, having sat on both sides of the table, offered unique perspectives on the research.

Part 1 of the current volume covers long-term studies of psychosis, bipolar disorder, depressive disorders, and substance use disorders and includes a commentary that synthesizes much of this research. Part 2 addresses some unresolved issues in case definition as reflected in the new Diagnostic and Statistical Manual of Mental Disorders (DSM-5), including Asperger’s syndrome (dropped from DSM-5), disruptive mood dysregulation disorder (added to DSM-5), and post-traumatic stress disorder (PTSD; reconceptualized and redefined in DSM-5), along with a commentary on quantitative versus cate- gorical/consensus classification. Part 3 addresses the concept of recovery in individuals with juvenile-onset depression, psychosis, and PTSD along with personal perspectives on recovery by a psychologist who had been diagnosed with schizophrenia and a social worker who designed and administered a recovery-oriented program. Part 4 covers three topics that have been significantly understudied: nonsuicidal self-injury, included in DSM-5 as a condition for further study but for which no long-term outcome studies exist; psychiatric genetics, which, with a few exceptions, is only beginning to make its way into longitudinal research; and brain imaging, which has enormous potential for understanding treatment response, remission, and recovery but is often conducted with small samples of convenience. The volume concludes with an Epilogue about research priorities, particularly for individuals with chronic and severe disorders. The Epilogue reflects the hope and optimism that can come about through partnerships among patients, families, and investigators.

Last, the conceptual platform for the meeting drew from the structure of Bach’s Goldberg Variations. Published in 1741, the Goldberg Variations begin with an ethereal aria, followed by thirty variations, and ending with a repetition of the opening aria. It is almost impossible for a performer to play the aria exactly the same way after performing the variations. Even when the repetition of the aria is very similar, the experience for the listener is altered considerably. In the same way, the field began in large part with Kraepelin’s and Bleuler’s detailed descriptions of their patients’ illness course. Their books have been followed by a multitude of follow-up studies. It is time for investigators to listen again to the aria—that is, to current narratives that are obscured by our structured measurements—and, having listened, to engage study participants in the research process itself.

Evelyn J. Bromet, PhD

President 2013, APPA

 
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