Tuberous sclerosis: Clinical clues for early diagnosis

A scan of the brain of a tuberous sclerosis patient.

Tuberous sclerosis is a rare neurological condition characterized by benign tumor growth in various parts of the body. It often affects the brain, eventually causing epilepsy and neurodevelopmental disorders. One challenge has been diagnosing the condition in infants, as they often don’t present with many clinical signs. However, a recent study published in Pediatrics has shed some light on early manifestations of this condition that may help lead to earlier diagnosis — and possibly earlier and more aggressive treatment.

To better understand clinical clues that may be seen in pediatric practice, Notes sat down with principal investigator of the study, Mustafa Sahin, MD, PhD, director of the Translational Neuroscience Center at Boston Children’s Hospital. He and his team in the Tuberous Sclerosis Program at Boston Children’s follow about 300 children with the condition. …Read More

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Leveraging CRM tools to improve patient and family experience

Up close photo of a child with wording "putting patients first"

Many parents have hectic schedules, from shuttling their kids between extracurricular activities to helping construct this year’s science fair project. With so many balls in the air, it’s easy to let commitments slip, whether it’s a PTA meeting or a physician appointment. Simply helping families schedule an appointment isn’t enough. Patients and caregivers deserve prompt, clear messaging and reminders to keep physician appointments top of mind.

To help improve the patient and family experience, Boston Children’s Hospital recently established a digital transformation initiative. Here, Bill Gagnon, senior director of digital marketing, explains how the hospital created a personalized, streamlined digital experience for parents and their providers. …Read More

Preventing ACL injuries in female athletes through neuromuscular training

acl injury prevention notes lead image

Anterior cruciate ligament (ACL) injuries are on the rise, with about 350,000 patients undergoing ACL reconstruction surgery in the U.S. each year — and young athletes being the fastest growing patient population. Despite advances in ACL reconstruction, the risks of re-tear and future osteoarthritis are still major areas of concern. With this in mind, many institutions have increased clinical and research efforts for ACL injury prevention — a significant area of focus for The Micheli Center for Sports Injury Prevention at Boston Children’s Hospital. …Read More

Breaking down language barriers: Strategies for working with LEP families

Doctor sitting down to explain something to a patient with limited English proficiency

Caring for patients with limited English proficiency (LEP) is a complex process that challenges clinicians in any setting. Being able to effectively communicate is crucial to ensuring the patient’s well-being and safety. But when this process is hindered by a patient or family’s language barrier, quality of care and patient outcomes could be compromised. Even with the assistance of an interpreter, how can we ensure that LEP patients and families truly understand their education? How much health knowledge and health literacy do they need in order to effectively synthesize and apply everything they learned during an encounter? There are a number of factors to consider. …Read More