22q Deletion Syndrome: Why Team Care is the Best Care

Children with 22q11.2 deletion syndrome (22q) and related disorders, such as 22q11.2 duplication syndrome, have unique medical, developmental, and behavioral health needs that must be addressed by a variety of specialists beyond the traditional medical care model. Each person is affected by different features of the syndrome and needs to have personalized care. Because each child is unique and because this diagnosis can affect so many body systems, care is best provided by a team of specialists who are familiar with 22q.

Coordinated care provided by an interdisciplinary center can facilitate ease of scheduling appointments and enhance provider communication, increase support and access to resources for families, enhance standardization of care, as well as improve outcomes and family satisfaction.

The Importance of Team Care

A team approach to management of 22q aims to bring together specialists with experience and expertise at a single medical center to treat the whole child, from birth to adulthood. In order to provide truly coordinated high quality care, the center should have a centralized intake and care coordination process with dedicated staff to help families navigate their child’s care journey and follow up needs. In some settings, this may be a nurse, genetic counselor, or other designated healthcare professional. Team care can offer the following benefits:

• Expert coordinated care across specialties where patients are seen by multiple specialists on the same day or within the same week, and the providers meet face-to-face to discuss care coordination and follow-up needs
• Syndrome-specific care including guidance on routine bloodwork, screening exams and medical/developmental monitoring for children and adults
• Coordination of referrals
• Communication with the patient’s primary care doctor follow-up recommendations
• Education and coordination of care with local primary care providers, therapists, school personnel, and other local programs about the unique needs of persons with 22q
• Easier appointment scheduling for families wanting to see numerous specialists in one trip and assistance with insurance needs
• Assistance with transition care for individuals and their families as they approach adulthood – to identify appropriate medical and mental health specialists, primary care providers, insurance/financial assistance, and psychosocial resources
• Linking families to educational events, social activities and family support programs

The Nationwide Children's Hospital Team The nationally-recognized 22q Center at NCH provides all of the above benefits and includes 30 team members from over 20 different specialties dedicated to caring for individuals with 22q. The NCH 22q Center works with each family to individualize a visit plan based on each patient’s needs and concerns. Following a team visit, we work with families to guide them on the treatment plan with the overall goal of ensuring best outcomes for all children and adults with 22q. 

To find out more about the NCH 22q Center or request a team visit click here.

_{Fung et al. (2015) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4526275/ Bassett et al. (2011) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3197829/}