An Assessment of Time Involved in Pre-test Case Review and Counseling for a Whole Genome Sequencing Clinical Research Program

Whole genome sequencing (WGS) is being used for evaluation of individuals with undiagnosed disease of suspected genetic origin. Implementing WGS into clinical practice will place an increased burden upon care teams with regard to pre-test patient education and counseling about results. To quantitate the time needed for appropriate pre-test evaluation of participants in WGS testing, we documented the time spent by our clinical research group on various activities related to program preparation, participant screening, and consent prior to WGS. Participants were children or young adults with autism, intellectual or developmental disability, and/or congenital anomalies, who have remained undiagnosed despite previous evaluation, and their biologic parents. Results showed that significant time was spent in securing allocation of clinical research space to counsel participants and families, and in acquisition and review of participant’s medical records. Pre-enrollment chart review identified two individuals with existing diagnoses resulting in savings of $30,000 for the genome sequencing alone, as well as saving hours of personnel time for genome interpretation and communication of WGS results. New WGS programs should plan for costs associated with additional pre-test administrative planning and patient evaluation time that will be required to provide high quality care.     

Staff and Administrators’ Perceptions of Music Therapy with Acute Care Mental Health Inpatients: A Qualitative Investigation

The purpose of this qualitative study is to understand staff members’ and administrators’ perceptions of group-based music therapy in an acute care mental health setting. The researcher conducted semi-structured interviews with six experienced administrators and unit staff who were familiar with music therapy. Using an inductive approach to thematic analysis, the author identified six themes: (a) music constitutes an important role in patients’ lives, (b) patient-centricity and competence of the music therapist, (c) music therapy uniquely engages the patient with music, the music therapist, and peers, (d) music therapy shifts patients’ focus from internal to external, (e) music therapy is a normalizing experience that facilitates interaction, and (f) music therapy provides optimal conditions for cognitive, affective, and behavioral change. Implications for clinical practice, suggestions for future research, and limitations of the study are provided.     

Impact of a Patient-Facing Enhanced Genomic Results Report to Improve Understanding,Engagement, and Communication

“The objective of this study was to” test the effectiveness of an enhanced genomic report on patient-centered outcome domains including communication, engagement and satisfaction. “Study design utilized” a prospective, randomized, mixed-methods desctiptive study of a whole genome sequencing results report, GenomeCOMPASS?, that was accessed by providers through the electronic health record and by patients through the associated patient portal. “The study was set in” an integrated healthcare delivery system in central Pennsylvania. “Eighty-four” parents of 46 children with undiagnosed Intellectual Disability, Autism Spectrum Disorder and/or multiple congenital anomalies who had participated in a previous study offering whole genome sequencing for their affected child were invited to enroll. Fifty-two parents enrolled. Following a traditional genetics results informing visit, the study coordinator stratified families by diagnostic result and uninformative result and then randomized families within each group to an intervention arm to receive the GenomeCOMPASS? report or to the usual care arm to receive a summary letter from the medical geneticist. A letter inviting enrollment included a baseline survey, which once returned, constituted enrollment. Surveys were administered at 3 months post-genetics visit. At 6 months, the usual care arm crossed over to receive the intervention and were administered an additional survey at 3 months. Qualitative interviews were conducted following survey completion to augment the survey data regarding the patient centered outcomes of interest. Patient reported outcomes including communication, engagement, empowerment and satisfaction. In the intervention arm, GenomeCOMPASS? reports were released to 14 families (N?=?28 parents) and of those 21 (75%) returned 3 month surveys. In the usual care arm, 12 families (N?=?24 parents) received usual care summary letters and of those 20 (83%) returned 3 month surveys. At crossover, GenomeCOMPASS? reports were released to 20 individuals and 15 (75%) returned 3 month surveys. Qualitative interviews were conducted with 5 individuals. Use of the GenomeCOMPASS? report was reported by this small group of parents to improve communication with providers and non-health professionals such as educators and therapists and led to increased engagement and high satisfaction. Providers and others involved in the children’s care also endorsed the report’s effectiveness. Reports that addressed negative findings, i.e. uninformative results, were not found to be useful. Although the number of users was small, this study supports that customizable template reports may provide a useful and durable source of information that can support and enhance the information provided by genetics professionals in traditional face-to-face encounters. Trial registration: Clinicaltrials.gov (Record 2013–0594).     

Deradicalizing Detained Terrorists

Deradicalization of terrorists constitutes a critical component of the global “war on terror.” Unfortunately, little is known about deradicalization programs, and evidence for their effectiveness is derived solely from expert impressions and potentially flawed recidivism rates. We present the first empirical assessment of one such program: the Sri Lankan rehabilitation program for former members of the Liberation Tigers of Tamil Eelam (a terrorist organization that operated in Sri Lanka until their defeat in 2009). We offer evidence that deradicalization efforts that provided beneficiaries with sustained mechanisms for earning personal significance significantly reduced extremism after 1 year (Study 1). We also found that upon release, beneficiaries expressed lower levels of extremism than their counterparts in the community (Study 2). These findings highlight the critical role of personal significance in deradicalization efforts, offer insights into the workings of deradicalization, and suggest practical methods for improving deradicalization programs worldwide.     

Differential Effects of Right‐Wing Authoritarianism and Social Dominance Orientation on Dimensions of Generalized Prejudice in Brazil

Previous research within a dual‐process cognitive‐motivational theory of ideology and prejudice has indicated that dimensions of generalized prejudice are structured around attitudes towards dangerous, derogated and dissident groups, and that these prejudice dimensions are differentially predicted by the ideological attitudes of Right‐Wing Authoritarianism (RWA) and Social Dominance Orientation (SDO). However, to date, these findings have been restricted to New Zealand samples. We describe two studies examining whether the structure of prejudiced attitudes and the differential prediction by RWA and SDO replicate in the Brazilian context, incorporating context‐relevant examples of each group—politicians, those from the northeast region of Brazil, and environmentalists. Results broadly supported the three‐factor structure of dangerous, derogated, and dissident groups. Consistent with previous research, regression and structural equation analyses showed that RWA explained prejudice against dangerous groups, SDO explained prejudice against derogated groups, and both RWA and SDO explained prejudice against dissident groups. This research provides some evidence for the generalizability of the three‐dimensional structure of generalized prejudice and differential prediction by RWA and SDO. Copyright © 2014 European Association of Personality Psychology