Quarterbacking the Interprofessional Team: Optimizing Collaboration and Communication To Enhance Patient Outcome

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Dr. Percy:
Hello, I'm Alan Percy. I'm a Child Neurologist at the University of Alabama at Birmingham. Today, we're going to talk about Quarterbacking the Interprofessional Team.

Rett Syndrome has a number of comorbidities that require interaction with a variety of subspecialists. These include cognitive impairment, growth failure, epilepsy, self-abuse, and breathing abnormalities. Later on, scoliosis becomes a significant problem. So the interdisciplinary team becomes quite broad. There are a number of other problems that are less common, but still are difficult for the families in many cases to understand. And in addition, there are less common but rare issues of cardiac, endocrine, or bone health that may require attention.

The consensus guidelines involve primary care providers and many other health professionals. And it's important that these health professionals all are engaged in the care of this individual. We need to promote integration of care across these specialties and offer age-based guides.

The consensus guidelines who we regard the primary care provider, that is pediatrician or the general physician, or an internist indeed, as a quarterback of this, there must be annual visits and attention for acute assessments. And the general assessments require a strong review of the general health, medication allergies, and important to check growth, as growth is an issue in girls with Rett syndrome. It's therefore important to very much so to measure height, weight, and head circumference at each visit, at least up through the 10th year of age. It's also important to evaluate Tanner stage, as there may be precocious puberty in some percentage of girls with Rett syndrome. And the laboratory tests on a consistent or at least annual basis need to be checked, blood count, a metabolic profile, vitamin D levels to maintain bone health, and an ECG for the potential for a prolonged QTC complex.

So, it's important to engage a variety of subspecialists as they are needed across the age of these individuals. Neurology, gastroenterology, dietitian, orthopedist, pulmonary, PT, OT, and speech, and cardiology. These are essential in order to deal with the seizures, with movement disorders, gastroesophageal reflux and constipation, issues with feeding route and nutritional goals, and the progression of scoliosis, which may occur over time up through the age of menstruation.

The other issue is that of the attention to the IEP in school to make certain that the educational plan is appropriate for the child. And as the child ages into maturity and becomes independent, it's essential that the parents obtain a guardianship or conservatorship to have control over their child's needs after they reach independence. This care can be aided by the existing Centers of Excellence which are multiple and across the country. And one should then therefore be aware of them. And in which case, you can ask questions of these centers and perhaps even have an evaluation there if it is deemed appropriate.

Age-based recommendations really are what we've gone through. Early on, it’s attention to growth and nutrition; later childhood, seizures, breathing issues, perhaps even bruxism or teeth grinding which can be very annoying; and then as we move on, scoliosis, puberty; and then later on, bone health and motor issues because these girls often slow down in adulthood. All throughout life, it's important to assess physical, occupational, and speech and language therapy, including augmentative communication. At time - at some point in time, the parents may have reached a point where they can no longer provide adequate care at home and, in the absence of a sibling who can assume the care potential for group home, must then be assessed.

I thank you very much for your attention.

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