Improvements in the function, quality of life, and longevity of patients with Duchenne muscular dystrophy (DMD) have been achieved through a multidisciplinary approach to management across a range of health-care specialties. In part 3 of this update of the DMD care considerations, we focus on primary care, emergency management, psychosocial care, and transitions of care across the lifespan. Many primary care and emergency medicine clinicians are inexperienced at managing the complications of DMD. We provide a guide to the acute and chronic medical conditions that these first-line providers are likely to encounter. With prolonged survival, individuals with DMD face a unique set of challenges related to psychosocial issues and transitions of care. We discuss assessments and interventions that are designed to improve mental health and independence, functionality, and quality of life in critical domains of living, including health care, education, employment, interpersonal relationships, and intimacy.
Reducing HIV-related stigma may enhance the quality of HIV prevention and care services and is a national prevention goal. The objective of this systematic review was to identify studies of HIV-related stigma among healthcare providers. For studies published between 2010 and 2017, we: (1) searched databases using our keywords, (2) excluded nonpeer reviewed studies, (3) limited the findings to the provider perspective and studies conducted in the United States, (4) extracted and summarized the data, and (5) conducted a contextual review to identify common themes. Of 619 studies retrieved, 6 were included, with 3 themes identified: (1) attitudes, beliefs, and behaviors (n = 6), (2) quality of patient care (n = 3), and (3) education and training (n = 2). Factors associated with HIV-related stigma varied by gender, race, provider category, and clinical setting. Providers with limited recent HIV-stigma training were more likely to exhibit stigmatizing behaviors toward patients. Developing provider-centered stigma-reduction interventions may help advance national HIV prevention and care goals.
Purpose
Care of children with spina bifida has significantly advanced in the last half century, resulting in gains in longevity and quality of life for affected children and caregivers. Bladder dysfunction is the norm in patients with spina bifida and may result in infection, renal scarring and chronic kidney disease. However, the optimal urological management for spina bifida related bladder dysfunction is unknown.
Materials and Methods
In 2012 the Centers for Disease Control and Prevention convened a working group composed of pediatric urologists, nephrologists, epidemiologists, methodologists, community advocates and Centers for Disease Control and Prevention personnel to develop a protocol to optimize urological care of children with spina bifida from the newborn period through age 5 years.
Results
An iterative quality improvement protocol was selected. In this model participating institutions agree to prospectively treat all newborns with spina bifida using a single consensus based protocol. During the 5-year study period outcomes will be routinely assessed and the protocol adjusted as needed to optimize patient and process outcomes. Primary study outcomes include urinary tract infections, renal scarring, renal function and bladder characteristics. The protocol specifies the timing and use of testing (eg ultrasonography, urodynamics) and interventions (eg intermittent catheterization, prophylactic antibiotics, antimuscarinic medications). Starting in 2014 the Centers for Disease Control and Prevention began funding 9 study sites to implement and evaluate the protocol.
Conclusions
The Centers for Disease Control and Prevention Urologic and Renal Protocol for the Newborn and Young Child with Spina Bifida began accruing patients in 2015. Assessment in the first 5 years will focus on urinary tract infections, renal function, renal scarring and clinical process improvements.
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