The Pediatric Complex Care Program (PCCP) at Tufts Children's Hospital works closely with you and your family to offer excellent care in a coordinated and family-centered approach. Our skilled team of pediatricians, nurse practitioners, nurse care managers, and social workers serve as a consistent point of access and a reliable resource through your child's health care journey.
Please refer to our frequently asked questions below, and call us at 617-636-9501 for further information.
Frequently asked questions
1. I am interested in having my child be a part of the Pediatric Complex Care Program at Tufts Children's. How do I proceed?
The Pediatric Complex Care Program (PCCP) has specific criteria for enrollment in the program. These are meant to be guidelines, and we do not want to require families to decide if a child meets these criteria. If you feel your family and child may benefit from support of the program, you should discuss this with your primary care provider or specialty provider. All referrals to the program must come from a provider to be considered for enrollment.
2. Why is my child being referred to the PCCP?
The PCCP works closely with families and their providers to offer comprehensive and coordinated care for children of all ages (up to age 21) with complex medical conditions and diagnoses. You can refer to the program’s list of services for further information. We are aware that most children with medically complex diagnoses live at home and in their community, and our program takes a multidisciplinary approach to supporting families and patients in all settings.
3. Who are the members of the PCCP?
The team is comprised of pediatricians, nurse practitioners, nurse care managers, and social workers. Meet the team here.
4. If my child is enrolled in the PCCP, do I have to change my primary care provider?
No. The model of the PCCP is to have patients maintain their own primary care providers, either in the community or already at Tufts Children's. If your child is seen here at Tufts Children's for primary care, the program is an extension of your primary care medical home. If you have an outside primary care provider (PCP), the team will support needs identified in collaboration with your PCP and home care team.
5. My child has medical technology needs. Will the PCCP manage this?
The PCCP will continue to work collaboratively with your child’s specialists who currently manage these needs. All management and prescribing of these needs will still fall under the responsibility of your child’s specialists.
6. If my child is enrolled in the PCCP, will I need to schedule extra visits in addition to specialists at Tufts Children's?
At the current time, the PCCP does not have a specific complex care clinic designated for families and patients. It is our goal that the team will be a consistence presence when you and your child are in for specialty visits, seeing you when issues arise, updating care management plans at least every 6 months, summarizing all specialists’ plans, and being available by phone weekdays when there are requests to be addressed. On enrollment into the program, the nurse care manager and social worker will arrange a time to meet with you and your child in person or schedule a time by phone to ensure that the team has all the information needed about your child and family to optimize support for you, quality of life for your child, and to review our family enrollment agreement.
7. If my child is hospitalized, will we see the PCCP team?
If your child is admitted to Tufts Children's Hospital or has an emergency room visit, the inpatient or emergency room team will be the primary team managing your child and updating/supporting you. The PCCP will however maintain a presence during those times to continue additional support, participating in family/team meetings, and engaged in discussions related to transition to home or an acute care rehabilitation facility. The team will be ready to facilitate any questions or concerns that may arise after discharge or evaluation.
8. Is the PCCP available 24 hours/day?
The PCCP is available Monday-Friday 8 am-5 pm. If you have concerns about your child when we are not available, you should call your primary care provider. The program has been developed to allow families to continue to follow with their primary care providers for both preventative care, as well as any urgent medical needs.
9. Will the PCCP assist me in coordinating specialist appointments?
Yes. If your child sees multiple specialists at Tufts Children's, the team will work with you to schedule appointments that work for your schedule, as well as aim to have as many as possible together in clusters of days to avoid having you come in on separate days.
10. Will I need to keep track of other things related to my child’s health is we are part of the PCCP?
The PCCP team will be calling families involved with the program every 6 months to ask several questions related to your child’s daily living, as well as ask you to track your missed work days you may have related to your child’s health needs, and any missed school days your child may have due to health related needs. We will ask your permission upon enrollment into the program to allow us to share and discuss information about your child’s health with your child’s PCP.
11. Can the PCCP assist me with my family’s other non-medical needs (housing, transportation, etc)?
The PCCP team recognizes that addressing seemingly “non-medical” needs are crucial in optimizing care for your child. Our team is happy to help identify resources in your community that can assist you and your family in accessing available services.