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Objective Elicit stakeholder perspectives on the anticipated benefits and challenges of sharing hospital physicians’ admission and daily progress notes with parents at the bedside during their child's hospitalization and identify strategies to aid implementation of inpatient note sharing. Methods Five semistructured focus groups were conducted with 34 stakeholders (8 parents, 8 nurses, 5 residents, 7 hospitalists, 6 administrators) at a tertiary children's hospital from October to November 2018 to identify anticipated benefits, challenges, and implementation strategies prior to sharing inpatient physicians’ notes. A facilitator guide elicited participants’ perspectives about the idea of sharing notes with parents during their child's hospitalization. Three researchers used content analysis to analyze qualitative data inductively. Results Anticipated benefits of sharing inpatient notes included: Reinforcement of information, improved parental knowledge and empowerment, enhanced parent communication and partnership with providers, and increased provider accountability and documentation quality. Expected challenges included: Increased provider workload, heightened parental confusion, distress or anxiety, impaired parent relationship with providers, and compromised note quality and purpose. Suggested implementation strategies included: Setting staff and parent expectations upfront, providing tools to support parent education, and limiting shared note content and family eligibility. Conclusions Stakeholders anticipated multiple benefits and drawbacks of sharing notes with parents during their child's hospital stay and made practical suggestions for ways to implement inpatient note sharing to promote these benefits and mitigate challenges. Findings will inform the design and implementation of an intervention to share notes using an inpatient portal and evaluation of its effect on child, parent, and healthcare team outcomes.

OBJECTIVES:Evaluate provider experiences with a bedside tablet inpatient portal application given to hospitalized patients and families across a children’s hospital.METHODS:In this cross-sectional study, English-speaking parents of children RESULTS:Of 1892 admissions given a tablet over 5 months, 1502 (79.4%) logged in to view their inpatient health record at least once during their hospital stay. No tablets were lost or stolen. Of 101 providers, 96 completed the survey (a response rate of 95%). They reported that patients and/or parents asked them questions about information they found, including laboratory results (45% of respondents), medications (13%), diagnoses (13%), and errors and/or mistakes in care (3%). Few perceived spending more time answering questions related to portal use (8%) or that it increased their workload (11%). In all, 92% of providers wanted patients and parents to continue to be able to use the portal.CONCLUSIONS:Almost 80% of hospitalized patients and parents given a tablet accessed real-time information from the inpatient health record. The portal facilitated communication about test results, diagnoses, and medications and providers overwhelmingly supported its ongoing use.

BACKGROUND: Enteral tubes are prevalent among children with medical complexity (CMC), and complications can lead to costly health care use. Our objective was to design and test the usability of a mobile application (app) to support family-delivered enteral tube care. METHODS: Human-centered design methods (affinity diagramming, persona development, and software development) were applied with family caregivers of CMC to develop a prototype. During 3 waves of usability testing with design refinement between waves, screen capture software collected user-app interactions and inductive content analysis of narrative feedback identified areas for design improvement. The National Aeronautics and Space Administration Task Load Index and the System Usability Scale quantified mental workload and ease of use. RESULTS: Design participants identified core app functions, including displaying care routines, reminders, tracking inventory and health data, caregiver communication, and troubleshooting. Usability testing participants were 80% non-Hispanic white, 28% lived in rural settings, and 20% had not completed high school. Median years providing enteral care was 2 (range 1–14). Design iterations improved app function, simplification, and user experience. The mean System Usability Scale score was 76, indicating above-average usability. National Aeronautics and Space Administration Task Load Index revealed low mental demand, frustration, and effort. All 14 participants reported that they would recommend the app, and that the app would help with organization, communication, and caregiver transitions. CONCLUSIONS: Using a human-centered codesign process, we created a highly usable mobile application to support enteral tube caregiving at home. Future work involves evaluating the feasibility of longitudinal use and effectiveness in improving self-efficacy and reduce device complications.

Background: Neuropathic pain (NP) is a debilitating condition that may result from spinal cord injury (SCI). Nearly 75% of all SCIs result in NP affecting 17,000 new individuals in the United States every year, and an estimated 7-10% of people worldwide. It is caused by damaged or dysfunctional nerve fibers sending aberrant signals to pain centers in the central nervous system causing severe pain that affects daily life and routine. The mechanisms underlying NP are not fully understood, making treatment difficult. Identification of specific molecular pathways that are involved in pain syndromes and finding effective treatments has become a major priority in current SCI research. Yoga has therapeutic applications that may prove beneficial in treating subjects suffering chronically from SCI-induced NP, chronic back and associated pain if necessary experimental data are generated. Summary: This review aims to discuss the implications of various mechanistic approaches of yoga which can be tested by new study designs around various nociceptive molecules including matrix metalloproteinases, cation-dependent chloride transporter (NKCC1), etc. in SCI-induced NP patients. Key Messages: Yogic practices could be used in managing SCI-induced NP pain by regulating the action of various mechanisms and its associated molecules. Modern prescriptive treatment strategies combined with alternative approaches like yoga should be used in rehabilitation centers and clinics in order to ameliorate chronic NP. We recommend practical considerations of careful yoga practice as part of an integrative medicine approach for NP associated with SCI.

OBJECTIVES:Physicians increasingly share ambulatory visit notes with patients to meet new federal requirements, and evidence suggests patient experiences improve without overburdening physicians. Whether sharing inpatient notes with parents of hospitalized children yields similar outcomes is unknown. In this pilot study, we evaluated parent and physician perceptions of sharing notes with parents during hospitalization.METHODS:Parents of children aged RESULTS:In all, 25 parents and their children’s discharging attending and intern physicians participated. Parents agreed that the information in notes was useful and helped them remember their child’s care plan (100%), prepare for rounds (96%), and feel in control (91%). Although many physicians (34%) expressed concern that notes would confuse parents, no parent reported that notes were confusing. Some physicians perceived that they spent more time writing and/or editing notes (28%) or that their job was more difficult (15%). Satisfaction with sharing was highest among parents (100%), followed by attendings (81%) and interns (35%).CONCLUSIONS:Parents all valued having access to physicians’ notes during their child’s hospital stay; however, some physicians remained concerned about the potential negative consequences of sharing. Comparative effectiveness studies are needed to evaluate the effect of note sharing on outcomes for hospitalized children, families, and staff.

To evaluate the associations between parent confidence in avoiding hospitalization and subsequent hospitalization in children with medical complexity (CMC); and feasibility/acceptability of a texting platform, Assessing Confidence at Times of Increased Vulnerability (ACTIV), to collect repeated measures of parent confidence.This prospective cohort study purposively sampled parent-child dyads (n = 75) in 1 of 3 complex care programs for demographic diversity to pilot test ACTIV for 3 months. At random days/times every 2 weeks, parents received text messages asking them to rate confidence in their child avoiding hospitalization in the next month, from 1 (not confident) to 10 (fully confident). Unadjusted and adjusted generalized estimating equations with repeated measures evaluated associations between confidence and hospitalization in the next 14 days. Post-study questionnaires and focus groups assessed ACTIV's feasibility/acceptability.Parents were 77.3% mothers and 20% Spanish-speaking. Texting response rate was 95.6%. Eighteen hospitalizations occurred within 14 days after texting, median (IQR) 8 (2-10) days. When confidence was5 vs ≥5, adjusted odds (95% CI) of hospitalization within 2 weeks were 4.02 (1.20-13.51) times greater. Almost all (96.8%) reported no burden texting, one-third desired more frequent texts, and 93.7% were very likely to continue texting. Focus groups explored the meaning of responses and suggested ACTIV improvements.In this demographically diverse multicenter pilot, low parent confidence predicted impending CMC hospitalization. Text messaging was feasible and acceptable. Future work will test efficacy of real-time interventions triggered by parent-reported low confidence.

Background: The molecular underpinnings of spinal cord injury (SCI) associated with neuropathic pain (NP) are unknown. Recent studies have demonstrated that matrix metalloproteinases (MMPs) such as MMP2 play a critical role in inducing NP following SCI. Promoter methylation of MMPs is known to suppress their transcription and reduce NP. In this context, it has been shown in rodents that folic acid (FA), an FDA approved dietary supplement and key methyl donor in the central nervous system (CNS), increases axonal regeneration and repair of injured CNS in part via methylation. Purpose: Based on above observations, in this study, we test whether FA could decrease MMP2 expression and thereby decrease SCI-induced NP. Methods: Sprague-Dawley male rats weighing 250-270 g received contusion spinal cord injuries (cSCIs) with a custom spinal cord impactor device that drops a 10 g weight from a height of 12.5 mm. The injured rats received either i.p. injections of FA (80 µg/kg) or water (control) 3 days prior and 17 days post-cSCI (mid phase) or for 3 days pre-cSCI and 14 days post-cSCI ending on the 42nd day of cSCI (late phase). The functional neurological deficits due to cSCI were then assessed by Basso, Beattie, and Bresnahan (BBB) scores either on post-impaction days 0 through 18 post-cSCI (mid phase) or on days 0, 2, 7, 14, 21, 28, 35, and 42 (late phase). Baseline measurements were taken the day before starting treatments. Thermal hyperalgesia (TH) testing for pain was performed on 4 days pre-cSCI (baseline data) and on days 18, 21, 28, 35, and 42 post-cSCI. Following TH testing, animals were euthanized and spinal cords harvested for MMP-2 expression analysis. Result: The FA-treated groups showed higher BBB scores during mid phase (day 18) and in late phase (day 42) of injury compared to controls, suggesting enhanced functional recovery. There is a transient decline in TH in animals from the FA-treated group compared to controls when tested on days 18, 21, 28, and 35, indicative of a decrease in NP. However, when tested 25 days after stopping FA administration on day 42 of cSCI, no significant difference in TH was observed between FA-treated and control animals. Western blot analysis of the injured spinal cord from FA-treated animals showed significant decline in MMP2 expression compared to spinal cord samples from water-treated controls. Conclusion: Together, these data suggest that FA could alleviate NP and improve functional recovery post-SCI, possibly by reducing the expression of MMP2. Further studies will open up a novel and easy natural therapy, ideal for clinical translation with minimal side effects, for managing SCI-induced NP. Such studies might also throw light on a possible epigenetic mechanism in FA-induced recovery after SCI.