Published on in Trisomy 21 Update
Children with Down syndrome have complex healthcare needs. Most individuals are followed by multiple subspecialists as they grow and develop — many by five or six, some by 10 or more. That adds up to many hours in the car, in waiting rooms, and clinic rooms (not to mention the time on the phone making all those appointments).
At Children’s Hospital of Philadelphia (CHOP), we have resources available to help you organize your child's care and navigate the process as you figure out the best way to put it all together in a way that works best for your child and family.
For patients with Down syndrome, care is coordinated with help from the Trisomy 21 Program, the Compass Care Program, and the complex scheduling team. When families use these resources, medical staff can create customized treatment plans — saving time and producing better outcomes for patients.
Trisomy 21 Program
Pediatricians from the Trisomy 21 Program will review your child’s medical needs, explain why care coordination is important and help you prioritize what needs to be done first. We will also likely add to your “to do” list with recommended screening evaluations and address any issues that come up during your child’s assessment. When referrals need to be made urgently, our nursing and medical staff will help to expedite scheduling these appointments as soon as possible.
Compass Care Program
The Compass Care Program serves both inpatients and outpatients who are followed by multiple specialists at CHOP, have complex, chronic conditions affecting multiple body systems, and experience several inpatient admissions each year at CHOP.
The program’s goals include improving overall coordination of your child’s care, and enhancing your family’s experience with the healthcare providers by keeping track of the many different factors impacting your child’s health. This allows all of your child’s providers to have an up-to-date account of your child’s conditions. Compass Care staff also help coordinate care when your child is admitted to the hospital, prepare for the transition from hospital to home, and coordinate and schedule outpatient visits.
The complex scheduling team helps families coordinate appointments when a child needs to see several specialists or undergo multiple tests to ensure the care they receive at CHOP is comprehensive and as convenient as possible for the family.
This service is intended for families who need to schedule three or more appointments, and who have been referred to the program by a doctor or nurse. The referral is necessary so complex scheduling staff can schedule your child for the right services with the right providers in the right order.
When you are referred to complex scheduling, you will be contacted by a staff member from the Complex Scheduling Resource (CSR). The CSR and a nurse will then start to plan your child’s visit. Because some schedules are complicated, it may take up to two weeks to set up your child’s multi-specialist visit. If you or your child’s doctor has any questions about CSR, you can call 267-426-7115.
Some of our patients require exams and procedures under anesthesia. When possible, your subspecialty teams will try to coordinate doing multiple procedures at once. In these cases, you need to make sure your child’s medical providers know who the outside providers are, what procedures are needed, and be sure the anesthesia team is aware of all procedures being performed.
Never hesitate to ask questions — your entire team is here to help.