The TOP DD Studies
Few studies have assessed how patients with dissociative disorders (DD) respond to treatment. The paucity of research contributes to the limited awareness of DD and the lack of training for treatment providers.
The Treatment of Patients with Dissociative Disorders (TOP DD) Studies examine DD treatment process and progress in the service of identifying the most effective treatments for DD. Finding the most beneficial and cost effective interventions for DD patients is crucial because DD are associated with severe symptoms and considerable suffering, serious impairment in functioning, and high treatment costs.
The TOP DD research team has conducted a series of studies aimed at evaluating and refining DD treatment, including a prospective, naturalistic study of treatment outcome among DD patients from around the world (“the naturalistic treatment study”) and a survey aimed at capturing DD experts' recommendations to identify the specific treatment interventions experts have found effective at various stages in DD treatment (“the expert survey”). Most recently, we completed a study of a web-based educational program for DD patients and their therapists (“the Network study”) that was informed by the results of our previous studies.
Thanks to the generous sharing of time and treatment experiences by our TOP DD participants, the naturalistic treatment study was very successful. We were able to recruit approximately 290 therapists and their patients from 19 countries around the world — the first, and still only international study of dissociative disorders. The consistent reports of patients and therapists in the naturalistic study demonstrated that DD treatment is associated with decreased symptoms and improved functioning. Data collected at four time points across 30 months revealed that over the course of this period, DD patients in treatment exhibited less depression, dissociation, PTSD, and general distress as well as decreases in suicide attempts, self-injurious behaviors, and hospitalizations. In addition, therapist ratings indicated that patients had also improved in adaptive functioning.
The Expert Survey, which surveyed 36 international experts in the treatment of DD, underscored the importance of providing DD-related information as part of treatment. The experts recommended that for DD patients in the early stages of treatment the following should be emphasized: establishing and maintaining safety, providing education about symptoms and their management, developing healthy coping skills including grounding (to increase control over dissociation), appropriate self-care, emotion regulation, and containment skills (to manage intrusive trauma symptoms).
The Network study examined a research-informed, web-based psychoeducational program for DD patients and their therapists aimed at helping patients get and feel safer by learning how to manage and reduce emotional dysregulation, PTSD symptoms, dissociation, and nonsuicidal self-injury (NSSI). Using videos and written and practice exercises, the TOP DD Network program provided therapists and patients with education about DDs and healing-focused skills for managing symptoms, improving emotion regulation, and managing safety issues. Participation was associated with improved emotion regulation, reduced PTSD symptoms and dissociation, and higher adaptive capacities – especially among those with the most pronounced dissociation at intake. Improvements in NSSI among the most self-injurious patients were particularly striking.
We have since been conducting a Randomized Controlled Trial (RCT) of the newest version of the TOP DD Network educational program (Finding Solid Ground), which includes refinements informed by feedback from Network Study participants and participants in group-led versions of the program. With much gratitude to all our RCT enrollees, we have now reached our target enrollment for this study and can no longer accept new participants.
If you are interested in being added to a mailing list to be notified of future studies, please visit our TOP DD Study Participate page. If you’d like to make a donation to support our work, please visit our Donate page. To see a listing of TOP DD publications to date, please visit our Publications page. Finally, if you’d like to learn about the TOP DD research team, visit our Research Team page. Thank you for your interest!