Background The success of behavioral interventions and policies designed to reduce the impact of the COVID-19 pandemic depends on how well individuals are informed about both the consequences of infection and the steps that should be taken to reduce the impact of the disease. Objective The aim of this study was to investigate associations between public knowledge about COVID-19, adherence to social distancing, and public trust in government information sources (eg, the US Centers for Disease Control and Prevention), private sources (eg, FOX and CNN), and social networks (eg, Facebook and Twitter) to inform future policies related to critical information distribution. Methods We conducted a cross-sectional survey (N=1243) between April 10 and 14, 2020. Data collection was stratified by US region and other demographics to ensure representativeness of the sample. Results Government information sources were the most trusted among the public. However, we observed trends in the data that suggested variations in trust by age and gender. White and older populations generally expressed higher trust in government sources, while non-White and younger populations expressed higher trust in private sources (eg, CNN) and social networks (eg, Twitter). Trust in government sources was positively associated with accurate knowledge about COVID-19 and adherence to social distancing. However, trust in private sources (eg, FOX and CNN) was negatively associated with knowledge about COVID-19. Similarly, trust in social networks (eg, Facebook and Twitter) was negatively associated with both knowledge and adherence to social distancing. Conclusions During pandemics such as the COVID-19 outbreak, policy makers should carefully consider the quality of information disseminated through private sources and social networks. Furthermore, when disseminating urgent health information, a variety of information sources should be used to ensure that diverse populations have timely access to critical knowledge.

Background Localized scleroderma (LS) is an autoimmune condition of the skin and underlying tissue. Active or recurring disease can lead to cumulative tissue damage, especially in paediatric-onset disease. Objectives To highlight the rate of relapse of LS activity in a cohort of paediatric patients and to evaluate for potential clinical and laboratory predictors of disease relapse.Methods Clinical and laboratory data were gathered prospectively. Patients were categorized as experiencing relapse or not, and clinical and laboratory parameters were compared. A logistic regression was fit to predict odds of relapse while controlling for multiple predictors. A subgroup of patients was also evaluated to determine the average time from treatment completion to relapse. Results Seventy-seven patients were followed for the identified study duration of > 2 years and had achieved disease remission, with 35 (45%) experiencing LS relapse. Patients who were older at disease onset, antinuclear antibody (ANA) positive and without an extracutaneous manifestation (ECM) were more likely to relapse. All three variables remained significant in the multivariable logistic regression model. Results of the subgroup mirrored the larger sample. The average time between treatment completion and relapse was 21 months. Conclusions Assessment of patients with LS experiencing a relapse of disease activity has shown older age of initial LS onset and ANA positivity to be potential markers for risk of relapse. Patients meeting these parameters may require greater clinical vigilance. The presence of one or more ECM may be protective. Clinicians treating patients with LS should provide significant long-term follow-up to monitor for relapse.

Objective Localized scleroderma (LS) can negatively affect children’s quality of life (QoL), but predictors of impact are not well described. We sought to identify predictors of QoL impact in pediatric LS patients. Methods We analyzed longitudinal data from a single-center cohort of pediatric LS patients, using hierarchical generalized linear modeling (HGLM) to identify predictors of QoL impact. HGLM is useful for nested data and allows for evaluation of both time-variant and time-invariant predictors. Results The number of extracutaneous manifestations (ECMs) (e.g. joint contracture, hemifacial atrophy) and female gender predicted negative QoL impact, defined as Children’s Dermatology Life Quality Index (CDLQI) score > 1 (p = 0.019, p = 0.002 respectively). As time from initial visit increased, the odds of reporting negative QoL impact decreased (p < 0.001). Conclusion Our results suggest that ECMs, gender, and time from initial visit are more predictive of QoL impact in LS than cutaneous features. Further study is required to determine which ECMs have the most impact on QoL, which factors underlie gender differences in QoL in LS, and why increasing time from initial visit appears to be protective. Improved understanding of predictors of QoL impact may allow for identification of patients at risk of poorer outcomes and tailoring of treatment and psychosocial support.

Advanced ACCREDITATION: The Association of Academic Physiatrists is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.The Association of Academic Physiatrists designates this Journal-based CME activity for a maximum of 1.0 AMA PRA Category 1 Credit(s)™. Physicians should only claim credit commensurate with the extent of their participation in the activity.

Background Paediatric localized scleroderma (LS) can negatively impact healthrelated quality of life (HRQoL) by causing skin fibrosis, abnormal limb development, disfigurement, and side-effects from immunosuppressive treatment. Studies to date have rarely included qualitative data gathered directly from paediatric patients with LS. Objectives To assess the impact of LS on HRQoL among affected youth and their caregivers using qualitative description. Methods Youth with all subtypes of LS and their caregivers were purposively sampled to participate in age-appropriate focus groups (younger children, early adolescents, adolescents). Each group started with a drawing exercise followed by in-depth discussion of topics including skin symptoms (e.g. itch, pain, tightness), functional impairment, physical appearance, family and peer relationships, and treatment burden. Focus groups were transcribed verbatim and co-coded, with adjudication of differentially applied codes. The study findings were triangulated via comparison with adult reports and published literature. Results Eleven youth aged 9-16 years and 16 caregivers participated in three focus groups each. Major identified areas of impact included uncomfortable skin symptoms, physical functioning limitations, extracutaneous manifestations, body image, bullying and teasing, unwanted questioning from others, and treatment side-effects and burden. Conclusions This is the first qualitative study of HRQoL in LS to include all major LS subtypes. We identified domains of HRQoL impacted by LS, some of which replicate earlier findings and some of which were novel. As impact also changed with developmental stage, our findings support the need for ongoing, formal evaluation of HRQoL in children and adolescents with LS. What is already known about this topic? • Paediatric localized scleroderma (LS) negatively impacts health-related quality of life (HRQoL) via skin fibrosis, musculoskeletal and other extracutaneous manifestations from the disease process, and side-effects of systemic immunosuppression. • The full impact of LS and its treatment on HRQoL is incompletely understood, with only one published qualitative study of youth with LS, which was limited to facial involvement. • There are no qualitative studies of HRQoL in other LS subtypes to date.

Proper transfer technique is associated with improved biomechanics and decreased pain and pathology. However, many users do not use proper technique, and appropriate assessment and training are needed to address these deficits. The transfer assessment instrument (TAI) 4.0 was designed to meet those needs and improve on past versions by removing the need for clinician training, shortening administration time, and simplifying question content. Evaluate the psychometric properties of the TAI 4.0. A convenience sample of full-time wheelchair users was scored on multiple transfers by four raters to assess interrater, intrarater, and test-retest reliability and concurrent validity of the TAI 4.0. Each user also was scored using a visual analog scale (VAS). For 44 participants, the mean TAI 4.0 and VAS across all transfers were 7.58 ± 1.12 and 7.44 ± 1.78, respectively, and scores were significantly correlated ( = 0.52-0.7). VAS scores were more strongly influenced by the flight/landing and body setup phases of the transfer. There were no significant associations between TAI 4.0 score and demographics. Intraclass correlation coefficients (ICC) ranged from 0.80 to 0.85 for interrater reliability, 0.60 to 0.76 for intrarater reliability, and 0.55 to 0.76 for test-retest reliability. The minimum detectable change (MDC) for the total score ranged from 1.02 to 1.30. The TAI 4.0 provides reliable and valid quantitative assessment of an individual's transfer without the need for comprehensive training, as is the case with the TAI 3.0. The tool can be completed in 3 minutes (average) in a clinical setting with only a ruler and goniometer.

Objective We identified challenges and solutions to using electronic health record (EHR) systems for the design and conduct of pragmatic research. Materials and Methods Since 2012, the Health Care Systems Research Collaboratory has served as the resource coordinating center for 21 pragmatic clinical trial demonstration projects. The EHR Core working group invited these demonstration projects to complete a written semistructured survey and used an inductive approach to review responses and identify EHR-related challenges and suggested EHR enhancements. Results We received survey responses from 20 projects and identified 21 challenges that fell into 6 broad themes: (1) inadequate collection of patient-reported outcome data, (2) lack of structured data collection, (3) data standardization, (4) resources to support customization of EHRs, (5) difficulties aggregating data across sites, and (6) accessing EHR data. Discussion Based on these findings, we formulated 6 prerequisites for PCTs that would enable the conduct of pragmatic research: (1) integrate the collection of patient-centered data into EHR systems, (2) facilitate structured research data collection by leveraging standard EHR functions, usable interfaces, and standard workflows, (3) support the creation of high-quality research data by using standards, (4) ensure adequate IT staff to support embedded research, (5) create aggregate, multidata type resources for multisite trials, and (6) create re-usable and automated queries. Conclusion We are hopeful our collection of specific EHR challenges and research needs will drive health system leaders, policymakers, and EHR designers to support these suggestions to improve our national capacity for generating real-world evidence.

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