Medically complex care: The newest competency for primary care

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Nola is a complicated 22-month (19-mo corrected) former 34-week premature girl who presents to your practice in the company of her foster caretaker, a maternal aunt. The history you have comes mostly through the lens of her aunt's recall of a variety of clinical encounters and emergency room visits that have taken place at 2 of the region's tertiary care centers, including a prolonged recent hospitalization for failure to thrive. Regrettably, you have no discharge summary on hand from the outside institution.Fortunately, Nola's aunt has come prepared. From her notes, you learn that Nola has a history of feeding difficulties and "global developmental delay." The details of Nola's prenatal and neonatal intensive care unit admission are scant. Nola has been described as having "unusual facial features, such as smallish eyes, low tone, some vision problems." A physical examination demonstrates significant delays in all streams of development. Nola's aunt recalls that she may need a gastrostomy tube pending her weight gain in the next few months.At present, Nola's aunt/foster caretaker is caring for her at home and expresses her concern about 4 major areas: coordinating multiple appointments at various sites, keeping track of involved medical information, getting all of the "paperwork" done to get needed upgrades for a feeding chair, and buying expensive special formula with her own money. Nola's aunt is intelligent and motivated, but she has limited help at home and is overwhelmed with all the aspects of the care. The aunt acknowledges the importance of multiple appointments-feeding support, developmental evaluations, vision, and neurologic assessments. When you inquire who Nola's aunt identifies as her niece's primary care provider, she reports that she has seen different doctors due to the vagaries of her schedule.You conclude that Nola's situation is not likely to improve without a dramatic intervention. As you try to pull together a plan, you wonder what the most effective approach is for the busy clinician. Who should take the lead on a child's care? Can a primary care pediatric clinician partner with other specialists and programs and use other members of a care team effectively? And, does care coordination provide better more cost-effective care?