Duchenne muscular dystrophy is a devastating neuromuscular disorder characterized by the loss of dystrophin, inevitably leading to cardiomyopathy. Despite publications on prophylaxis and treatment with cardiac medications to mitigate cardiomyopathy progression, gaps remain in the specifics of medication initiation and optimization.

This document is an expert opinion statement, addressing a critical gap in cardiac care for Duchenne muscular dystrophy. It provides thorough recommendations for the initiation and titration of cardiac medications based on disease progression and patient response. Recommendations are derived from the expertise of the Advance Cardiac Therapies Improving Outcomes Network and are informed by established guidelines from the American Heart Association, American College of Cardiology, and Duchenne Muscular Dystrophy Care Considerations. These expert-derived recommendations aim to navigate the complexities of Duchenne muscular dystrophy-related cardiac care.

Comprehensive recommendations for initiation, titration, and optimization of critical cardiac medications are provided to address Duchenne muscular dystrophy-associated cardiomyopathy.

The management of Duchenne muscular dystrophy requires a multidisciplinary approach. However, the diversity of healthcare providers involved in Duchenne muscular dystrophy can result in variations in cardiac care, complicating treatment standardization and patient outcomes. The aim of this report is to provide a roadmap for managing Duchenne muscular dystrophy-associated cardiomyopathy, by elucidating timing and dosage nuances crucial for optimal therapeutic efficacy, ultimately improving cardiac outcomes, and improving the quality of life for individuals with Duchenne muscular dystrophy.

This document seeks to establish a standardized framework for cardiac care in Duchenne muscular dystrophy, aiming to improve cardiac prognosis.

Early during COVID-19, British Columbia coordinated collaboration between academic researchers, public healthcare systems, and private sector partners to focus research resources on knowledge gaps in a timely manner, avoid duplication, and identify overlooked aspects. At a collaboration symposium, it became evident that BC’s volunteer search & rescue (SAR) cadre was overlooked.

Our exploratory project studied volunteer SAR’s operational readiness; use and perceived value of information sources; consistency in infection prevention measures among volunteer stations, and with their professional counterparts for comparable first aid medical interventions throughout the pandemic.

We partnered with the 2 organizations that govern BC’s volunteer SAR stations. Local station leaders completed a short confidential survey. Guidance documents issued by associations governing voluntary and professional first responders were compared.

Survey responses were received from 33 of 109 local stations, spanning all regions of BC. Most remained operationally ready throughout the entire pandemic (12.1% had to stand down at times). Except for 21% lacking eye protection, all had personal protective equipment commensurate with that of healthcare professionals; however, few used this PPE in a manner consistent with professional counterparts. Usage and perceived usefulness of various information sources differed. There was no communication link between the province’s infection control experts and 2 volunteer SAR organizations.

Search & rescue capability was maintained despite pandemic impacts. Results reveal strengths and opportunities for improvement in the ways volunteers are informed and protected. Infection control experts providing advice for emergency health services professional responders should remember to include their volunteer counterparts.

To evaluate the National Health Safety Network (NHSN) hospital-onset Clostridioides difficile infection (HO-CDI) standardized infection ratio (SIR) risk adjustment for general acute-care hospitals with large numbers of intensive care unit (ICU), oncology unit, and hematopoietic cell transplant (HCT) patients.

Retrospective cohort study.

Eight tertiary-care referral general hospitals in California.

We used FY 2016 data and the published 2015 rebaseline NHSN HO-CDI SIR. We compared facility-wide inpatient HO-CDI events and SIRs, with and without ICU data, oncology and/or HCT unit data, and ICU bed adjustment.

For these hospitals, the median unmodified HO-CDI SIR was 1.24 (interquartile range [IQR], 1.15–1.34); 7 hospitals qualified for the highest ICU bed adjustment; 1 hospital received the second highest ICU bed adjustment; and all had oncology-HCT units with no additional adjustment per the NHSN. Removal of ICU data and the ICU bed adjustment decreased HO-CDI events (median, −25%; IQR, −20% to −29%) but increased the SIR at all hospitals (median, 104%; IQR, 90%–105%). Removal of oncology-HCT unit data decreased HO-CDI events (median, −15%; IQR, −14% to −21%) and decreased the SIR at all hospitals (median, −8%; IQR, −4% to −11%).

For tertiary-care referral hospitals with specialized ICUs and a large number of ICU beds, the ICU bed adjustor functions as a global adjustment in the SIR calculation, accounting for the increased complexity of patients in ICUs and non-ICUs at these facilities. However, the SIR decrease with removal of oncology and HCT unit data, even with the ICU bed adjustment, suggests that an additional adjustment should be considered for oncology and HCT units within general hospitals, perhaps similar to what is done for ICU beds in the current SIR.

The standardized infection ratio (SIR) is an indirectly standardized morbidity ratio that has been used to compare the infection rate in a hospital with an expected number of infections from a national standard and is being increasingly promoted as a metric for the public reporting of healthcare-associated infections (HAIs).

To identify potential discrepancies between SIR and other measures of risk.

Hypothetical and real data were compared using relative risk, a directly standardized morbidity ratio, and SIR values across a range of varying hospital population compositions.

In real and hypothetical data, other summary statistics were consistent with each other and with underlying HAI incidence density rates. However, use of the SIR frequently led to conclusions inconsistent with these other inherently unbiased estimators.

Because of a recognized type of distortion inherent in the calculation of indirectly standardized ratios, use of the SIR can lead to conclusions that differ from those reached when using other traditional measures of risk and to incorrect assessments of conclusions about the performance of hospitals or states. In addition, the tendency to inappropriately arrange SIR values in rank order for comparison makes SIR unsuitable as a statewide metric for monitoring HAIs.