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).     

Executive Function and Emotional,Behavioral, and Social Competence Problems in Children with Epilepsy

Many researchers have reported elevated rates of emotional, behavioral, and social competence problems (EBSP) in children with epilepsy. Although executive function has been found to be associated with EBSP in children with typical development, almost no research has looked at the individual components of executive function as potential predictors of EBSP in children with epilepsy. This is surprising given the deficits in executive function in children with epilepsy. We investigated EBSP and executive function in 42 children with epilepsy, aged 6.0 to 18.1 years and found, as expected, that EBSP were associated with executive function in these children even after epilepsy-related variables, such as seizure type, were accounted for. However, different components of executive function were related to different emotional, behavioral, and social competence problems in these children. Shifting of mental sets was a significant predictor of emotional, behavioral, and social competence problems whereas inhibition was a significant predictor of behavioral problems. This suggests that different executive function profiles in children with epilepsy may place them at-risk for developing different types of emotional, behavioral, and social competence problems. These results may help researchers and clinicians develop new techniques to identify and treat emotional, behavioral, and social competence problems in children with epilepsy.     

Perceptual experience shapes our ability to categorize faces by national origin: A new other-race effect

People are better at recognizing own-race than other-race faces. This other-race effect has been argued to be the result of perceptual expertise, whereby face-specific perceptual mechanisms are tuned through experience. We designed new tasks to determine whether other-race effects extend to categorizing faces by national origin. We began by selecting sets of face stimuli for these tasks that are typical in appearance for each of six nations (three Caucasian, three Asian) according to people from those nations (Study 1). Caucasian and Asian participants then categorized these faces by national origin (Study 2). Own-race faces were categorized more accurately than other-race faces. In contrast, Asian American participants, with more extensive other-race experience than the first Asian group, categorized other-race faces better than own-race faces, demonstrating a reversal of the other-race effect. Therefore, other-race effects extend to the ability to categorize faces by national origin, but only if participants have greater perceptual experience with own-race, than other-race faces. Study 3 ruled out non-perceptual accounts by showing that Caucasian and Asian faces were sorted more accurately by own-race than other-race participants, even in a sorting task without any explicit labelling required. Together, our results demonstrate a new other-race effect in sensitivity to national origin of faces that is linked to perceptual expertise.     

Psychobiography and the Psychology of Religion: A Tribute to the Work of Donald Capps

This article examines Donald Capps’s work on the psychology of major religious figures and the social forces that informed their psychic lives, spiritual worldviews, and teachings. Drawing on four texts that were published between 2000 and 2014, the essay explores Capps’s views on the importance of psychobiography to the study of religion and the specific contributions his thinking has made to a greater understanding of the historical Jesus. The article considers Capps’s analysis of Jesus’s illegitimacy and his role as healer within the society in which he lived and preached. Building on Capps’s work, the article also expands on feminist and postcolonial theories that offer insight into the psychosocial development of religious figures whose teachings and beliefs emerged out of their individual life circumstances and the larger socio-political culture in which they lived.     

Toward a contemporary quantitative model of punishment

A direct‐suppression, or subtractive, model of punishment has been supported as the qualitatively and quantitatively superior matching law‐based punishment model (Critchfield, Paletz, MacAleese, & Newland, 2003; de Villiers, 1980; Farley, 1980). However, this conclusion was made without testing the model against its predecessors, including the original (Herrnstein, 1961) and generalized (Baum, 1974) matching laws, which have different numbers of parameters. To rectify this issue, we reanalyzed a set of data collected by Critchfield et al. (2003) using information theoretic model selection criteria. We found that the most advanced version of the direct‐suppression model (Critchfield et al., 2003) does not convincingly outperform the generalized matching law, an account that does not include punishment rates in its prediction of behavior allocation. We hypothesize that this failure to outperform the generalized matching law is due to significant theoretical shortcomings in model development. To address these shortcomings, we present a list of requirements that all punishment models should satisfy. The requirements include formal statements of flexibility, efficiency, and adherence to theory. We compare all past punishment models to the items on this list through algebraic arguments and model selection criteria. None of the models presented in the literature thus far meets all of the requirements.     

A Method for Universal Screening of Elementary School Students: Development of the Social Challenges Screening Questionnaire

Schools regularly screen students for hearing and vision impairments because they present impediments to academic progress. For the same reason, schools should consider adding a universal screening for social challenges, which may also impede the learning process. This study reports on the development of the Social Challenges Screening Questionnaire (SCSQ), an efficient teacher-report screening questionnaire that identifies students with challenges who may benefit from a psychological evaluation. Further, the questionnaire may help identify students with Autism Spectrum Disorder who were previously undiagnosed. The SCSQ was administered to 549 general education students in the third and fourth grades. Internal consistency was.85. A smaller sample of students (n = 50) was selected for additional follow up assessment using the Social Responsiveness Questionnaire, Second Edition. Scores on the two instruments were strongly correlated (r =.87, p <.01), and sensitivity (.94) and specificity (.88) indicate the SCSQ can efficiently detect students with social challenges in need of a formal evaluation.     

Measuring Anhedonia in Adolescents: A Psychometric Analysis

Anhedonia—the reduced capacity to experience pleasure—is a trait implicated in mental and physical health. Yet, psychometric data on anhedonia measures in adolescents are absent. We conducted an in-depth psychometric analysis of the Snaith–Hamilton Pleasure Scale (SHAPS; Snaith et al., 1995 Snaith, R. P., Hamilton, M., Morley, S., Humayan, A., Hargreaves, D., & Trigwell, P. (1995). A scale for the assessment of hedonic tone: The Snaith–Hamilton Pleasure Scale. British Journal of Psychiatry, 167, 99–103. doi:10.1192/bjp.167.1.99[Crossref], [PubMed], [Web of Science ®] , [Google Scholar])—a self-report measure of anticipated pleasure response to 14 pleasant experiences—in adolescents. Adolescents (N = 585, M age = 14.5) completed the SHAPS and other paper-and-pencil surveys. Item response theory models were used to evaluate the psychometric performance of each SHAPS item. Correlations of the SHAPS with other personality and psychopathology measures were calculated to evaluate construct validity. Results showed that (a) certain items (e.g., reported pleasure from basic experiences like “seeing smiling faces” or “smelling flowers”) provided more information about latent anhedonia than others; and (b) SHAPS scales exhibited construct-consistent convergent and discriminant validity (i.e., stronger correlations with low positive affect constructs, weaker correlations with negative affect). Reporting diminished pleasure from basic pleasant experiences accurately indicates adolescent anhedonia, which is important for future scale development and understanding the phenomenology of anhedonia in teens. These data support using the SHAPS for assessing anhedonia in epidemiological research and school-based universal prevention programming in general adolescent populations.