An Evidence-Based,Community-Engaged Approach to Develop an Interactive Deliberation Tool for Pediatric Neuromuscular Trials

Duchenne/Becker muscular dystrophy (DBMD) and spinal muscular atrophy (SMA) are rare neuromuscular disorders that present challenges to therapeutic and clinical trial decision making. We developed an interactive, evidence-based online tool designed to encourage thoughtful deliberation of the pros and cons of trial participation and to inform meaningful discussions with healthcare providers. Prior research demonstrates the importance of tool availability at the time each family is considering trial participation, which may be prior to the informed consent process. The tool is intended to be easily modified to other pediatric disease communities. Tool development was informed by prior qualitative research, literature reviews, and stakeholder input. Specific items were derived based on an online exploratory questionnaire of parents whose children participated in a trial for DBMD or SMA to understand motivations for participation. Parent participants in the exploratory survey reported strong impact of altruistic and individual benefit motivations and placed much greater emphasis on anticipated trial benefits than on harms when making participation decisions. We used this data to develop the evidence-based deliberation tool using a community-engaged approach. We initially targeted the tool for DBMD while using SMA survey data to evaluate ease of transition to that population. We conducted two iterative sets of activities to inform development and refinement of the tool: (1) community engagement of key stakeholders and (2) user experience testing. These activities suggest that the tool may increase deliberation and the weighing of benefits and harms. Ongoing evaluation will determine the acceptability and efficacy of this online intervention.     

Creation and Implementation of an Environmental Scan to Assess Cancer Genetics Services at Three Oncology Care Settings

An environmental scan (ES) is an efficient mixed-methods approach to collect and interpret relevant data for strategic planning and project design. To date, the ES has not been used nor evaluated in the clinical cancer genetics setting. We created and implemented an ES to inform the design of a quality improvement (QI) project to increase the rates of adherence to national guidelines for cancer genetic counseling and genetic testing at three unique oncology care settings (OCS). The ES collected qualitative and quantitative data from reviews of internal processes, past QI efforts, the literature, and each OCS. The ES used a data collection form and semi-structured interviews to aid in data collection. The ES was completed within 6 months, and sufficient data were captured to identify opportunities and threats to the QI project’s success, as well as potential barriers to, and facilitators of guideline-based cancer genetics services at each OCS. Previously unreported barriers were identified, including inefficient genetic counseling appointment scheduling processes and the inability to track referrals, genetics appointments, and genetic test results within electronic medical record systems. The ES was a valuable process for QI project planning at three OCS and may be used to evaluate genetics services in other settings.     

Cognitive reappraisal reduces perceived exertion during endurance exercise

Emotion regulation may influence psychological responses to exercise. We examined whether the emotion regulation strategies, cognitive reappraisal and distraction, influenced psychological state and prefrontal cortex oxygenation during endurance exercise. Twenty-four endurance runners ran for 90 min at 75–85% maximum heart rate in three separate sessions with no instruction or with instructions to use cognitive reappraisal or distraction. Participants rated their emotional arousal, emotional valence, and perceived exertion before, every 30 min during, and after exercise. Functional near-infrared spectroscopy quantified changes in prefrontal cortex oxygenation. Participants felt lower emotional arousal and physical exertion when instructed to utilize cognitive reappraisal than when given no emotion regulation instruction. Such responses to distraction did not differ from the other conditions. Emotion regulation strategies did not influence emotional valence or prefrontal cortex oxygenation. Participants’ analytical interpretation of the cognitive reappraisal instruction could contribute to small effect sizes and limited effects. Further research should determine contexts under which emotion regulation strategies most benefit endurance exercise experience.     

CBT intensity and outcome for panic disorder in a primary care setting

A hybrid efficacy-effectiveness design in which participants (n = 91/93) were retained in the study regardless of whether or not they received treatment enabled evaluation of CBT intensity in relation to panic disorder in the primary care setting. CBT intensity was operationalized as number of cognitive-behavioral therapy sessions, number of follow-up booster phone calls, and secondarily, as number of cognitive behavioral coping and exposure strategies. Baseline psychosocial and demographic predictors of CBT intensity were analyzed first. Severity of anxiety sensitivity predicted number of cognitive behavioral sessions, but no baseline variables predicted number of follow-up booster phone calls or number of coping and exposure strategies. Multivariate logistic and linear regressions were used to evaluate the degree to which treatment intensity predicted 3-month and 12-month outcomes (anxiety sensitivity, phobic avoidance, depressive symptoms, disability, and medical and mental health functioning) after controlling for potential confounding baseline variables. Number of cognitive behavioral therapy sessions predicted lower anxiety sensitivity at 3 and 12 months, and number of follow-up booster phone calls predicted lower anxiety sensitivity, less phobic avoidance, and less depression at 12 months. These findings indicate that "dose" of psychotherapy was an important predictor of outcome. The significance of follow-up booster phone contact is discussed as an index of continued self-management of panic and anxiety following acute treatment.     

Autonomy and Nondefensiveness

Three experimental studies tested whether a priming procedure intended to activate an autonomy orientation would lead to nondefensiveness and enhanced performance, whether activated control orientation would lead to higher defense and impaired performance, and whether activated impersonal orientation would lead to the greatest defense and worst performance. Study 1 showed that autonomy-primed participants report lower desire for escape compared to control-primed, and that impersonally-primed showed most desire to escape. In Study 2, autonomy-primed participants showed the least self-serving bias, control-primed were in the middle, and impersonally-primed participants showed the most. In Study 3, rowers autonomy-primed showed the least self-handicapping and best performance, control-primed showed moderate levels, and impersonally-primed showed the most self-handicapping and worst performance. Results are discussed in terms of motivation orientation, defensiveness, and performance.