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).     

“What Just Happened?”

The author discusses experiences in analysis during the formation of an object relationship, which can give rise to a phase of experiential “wholeness” when a particular piece of unconscious analytic work has been completed. The question of wholeness is also considered from an ontogenetic perspective. The difficulties in achieving a good object relationship are considered, including with those who have had little or no experience of a good internal object. Three stages in the formation of a good internal object relationship are proposed.     

Functional Communication Training and Demand Fading Using Concurrent Schedules of Reinforcement

Demand fading, a schedule thinning procedure for escape-maintained behaviors, typically includes an escape extinction component. The purpose of this study was to examine the effectiveness of demand fading with alternative reinforcement utilizing concurrent reinforcement schedules without extinction. During demand fading, aggression and requests emitted prior to meeting the task completion criterion were reinforced with short, low-quality breaks, but requests emitted following the task completion criterion were reinforced with long, high-quality breaks. Results suggest that concurrent schedules of reinforcement may be an effective alternative to extinction as a component of demand fading.     

“Inside out”: Appraisals for achievement emotions from constructive,positive, and negative feedback on writing

Even with the recent surge of research on achievement emotions, few studies have investigated emotions in feedback situations and the appraisals associated with such emotions. The purpose of this study was to examine emotion appraisals of constructive criticism, negative, and positive feedback, to aid us in determining whether these appraisals differed by feedback type. In a task asking them to provide open-ended responses as they imagined receiving feedback on a writing task, undergraduates (N?=?270) gave reasons for why they might experience unpleasant emotions from positive feedback and pleasant emotions from negative feedback along with reasons for both pleasant and unpleasant emotions emanating from constructive feedback. Open coding of responses yielded categories for each emotion-feedback pairing that, across all emotions, were collapsed into five appraisal categories: feedback suggests ways to improve, a mismatch between feedback and task exists, feedback targets the self or one’s ability, feedback says something about the relationship between feedback giver and receiver, and the task is judged for its value. Distributions of appraisal categories distinguished constructive feedback from positive and negative feedback. Implications are drawn for control-value theory and for classroom feedback practices.     

Dreams of Life and Death

This article examines the personal and archetypal aspects of images from six dreams that occurred during the illness and after the death of the dreamer's sister. It connects the dream images to the unresolved issues in the relationship between siblings and to the dreamer's own reflections on typology. It also explores the larger questions concerning the psychological process of grief, the common occurrence of synchronistic events related to death and loss, and includes Jung's comments on life and death. Finally, the article suggests solutions to our very human fears of death and encourages the development of our capacity to discover a personal mythology, a working sacred story, of “the beyond” or “life” after death.