Redefining Rare Disease Care in the Digital Age: Insights and Key Takeaways from a Digital Health Symposium Focused on Empowering Rare Disease Communities.

At the Stanford-UCB Rare Disease Digital Health Symposium held in Stanford, California, on September 8, 2023, researchers, clinicians, payers, thought leaders, and rare disease caregivers and advocates discussed the current state of care delivery and future perspectives of digitally-enabled care for rare disease patient populations. Digital health aims to improve healthcare delivery through novel ways of providing access to more precise diagnosis, monitoring of disease progression, treatment, prognosis, and care management for rare disease patients. The meeting focused on highlighting challenges and unmet needs, data infrastructure and analytics, the need for targeted and effective personalized therapies, and the importance of digital care transformation. The meeting also covered the social and ethical impact of access to digitally delivered, patient-centered care, as well as views on implementation and patient autonomy and empowerment.

Innovation at a Children's Hospital: Personal Protective Equipment Efforts During the Pandemic.

The COVID-19 pandemic has affected life for everyone, and hospitals, in particular have been hard hit. In this study, we describe our efforts to develop personal protective equipment at a children's hospital early in the pandemic. We convened an innovation working group to organize our efforts and respond to the rapidly changing situation. We describe our work in four areas: (1) plexiglass shields for the emergency department, (2) face shields for clinical providers, (3) breath shields for ophthalmology, and (4) flip-up safety glasses for nurses. The hospital's supply chain is now caught up with addressing many pandemic-related shortages. Nevertheless, through our multidisciplinary approach to reacting to the pandemic's urgent needs, we demonstrated agility to bring stakeholders together to maximize the use of scarce resources and build resiliency. We believe this method can be rapidly replicated as future needs arise.

The Effect of Implementation of Standardized, Evidence-Based Order Sets on Efficiency and Quality Measures for Pediatric Respiratory Illnesses in a Community Hospital.

OBJECTIVE: Standardization of evidence-based care, resource utilization, and cost efficiency are commonly used metrics to measure inpatient clinical care delivery. The aim of our project was to evaluate the effect of pediatric respiratory order sets and an asthma pathway on the efficiency and quality measures of pediatric patients treated with respiratory illnesses in an adult community hospital setting. METHODS: We used a pre-post study to review pediatric patients admitted to the inpatient setting with the primary diagnoses of asthma, bronchiolitis, or pneumonia. Patients with concomitant chronic respiratory illnesses were excluded. After implementation of order sets and asthma pathway, we examined changes in respiratory medication use, hospital utilization cost, length of stay (LOS), and 30-day readmission rate. Statistical significance was measured via 2-tailed t-test and Fisher test. RESULTS: After implementation of evidence-based order sets and asthma pathway, utilization of bronchodilators decreased and the hospital utilization cost of patients with asthma was reduced from $2010 per patient in 2009 to $1174 per patient in 2011 (P < .05). Asthma LOS decreased from 1.90 days to 1.45 days (P < .05), bronchiolitis LOS decreased from 2.37 days to 2.04 days (P < .05), and pneumonia LOS decreased from 2.3 days to 2.1 days (P = .083). Readmission rates were unchanged. CONCLUSION: The use of order sets and an asthma pathway was associated with a reduction in respiratory treatment use as well as hospitalization utilization costs. Statistically significant decrease in LOS was achieved within the asthma and bronchiolitis populations but not in the pneumonia population. No statistically significant effect was found on the 30-day readmission rates.

Posterior spinal cord infarction due to fibrocartilaginous embolization in a 16-year-old athlete.

Spinal cord infarction is extremely rare in children, and, similar to cerebrovascular infarcts, the pathogenesis is different from adults. Spinal cord infarcts are most commonly reported in adults in the context of aortic surgery; in children, the etiology is frequently unknown. Fibrocartilaginous embolization is a potential cause of spinal cord infarct in both populations. It is a process that occurs when spinal injury has resulted in disc disease, and subsequently disc fragments embolize to the cord, resulting in ischemia and/or infarction. In this report, we present a 16-year-old athlete who presented with symptoms of acute myelopathy after a period of intense exercise. Our original concern was for an inflammatory process of the spinal cord; however, given her history of competitive tumbling and degenerative disc changes on her initial spine magnetic resonance imaging scan, diffusion-weighted imaging was performed, which demonstrated acute spinal cord infarction. Unlike many cases of spinal cord infarction, our patient was fortunate to make a near-complete recovery. This case highlights the importance of recognizing rare causes of spinal cord pathology and considering infarction in the differential diagnosis of acute myelopathy because management and prognosis varies.