Since the 1980s, the prevalence of torture survivors living in the US has been estimated as high, but no actual demographic or diagnostic data had been collected across the country. Rehabilitation services for torture survivors are currently underfunded and erratic, with most programs' funding dependent on successful renewal of federal grants, and little information published on the efficacy of existing rehabilitation programs. In 2008, the US National Consortium of Torture Treatment Programs (NCTTP) initiated a voluntary research project to provide descriptive, inferential, and outcome data on the torture survivors in treatment in its 35 member centers across the US.
A group of separate NCTTP centers came together for the benefits of collaboration on data collection, research and advocacy related to U.S. government policy on torture survivors who migrate as refugees or asylum seekers. This study is a chart review of data previously collected for treatment purposes or for reporting information to funders by 23 NCTTP member centers on 9,025 individual torture survivors seen in the six years between September 2007 and September 2013. Following U.S. research standards, the NCTTP obtained Institutional Review Board oversight of the research protocol. Over 50 individuals from the 23 centers collaborated to write a data use agreement, which ensured protection of patient identity, rights of the centers as data owners, and joint publication of data collected. Coordinated by a Research Committee, representatives from member centers made decisions together on variables to collect and participated in training sessions via conference calls and webinars. Over eight years, the project collected 54 data variables, including basic demographic information, type of torture experienced, psychiatric diagnoses, medical diagnoses, and functional outcome data. A total of 27 NCTTP centers have submitted data on over 14,000 individual survivors. Next steps include prospective diagnostic data on hypertension and diabetes and treatment outcomes.
This study reports on torture survivors from 125 countries. Irrespective of immigration status, 52% of survivors showed major depressive disorder (MDD); 69%, posttraumatic stress disorder (PTSD). Asylum seekers showed significantly higher rates of MDD and PTSD compared to refugees. High risk factors for PTSD and MDD were reporting three or more types of torture, reporting rape, and having immigration status of asylum seeker. At one and two years after intake, asylum seekers and refugees showed improvements in employment and immigration status. This longitudinal project provides foundation for long-term follow up and lays a vital ground- work for assessing effectiveness of treatment of torture survivors in the U.S. Collaboration with researchers across continents is suggested to provide a much-needed representative picture of torture survivors seeking rehabilitation across the world. Discussion will explore comparisons of methodology and encourage effective collaboration across countries and world regions to multiply research efforts and results.
Funding & No Conflicts Declaration
This project has had no funding, except for $15,000 from the Jacob & Valeria Langeloth Foundation. NCTTP centers have no conflict of interests.