Connective Issues Fall 2024

Navigating Pediatric to Adult Care WITH MARFAN SYNDROME

Transitioning from pediatric to adult care for chronic conditions like Marfan syndrome can be a critically important yet challenging step for young adults and their loved ones, including caregivers. The transition of care often coincides withsigni fi cant personal, educational, and social changes, requiring young adults to navigate new healthcare systems, providers, and responsibilities at a time when it may feel like everything they could previously count on is in fl ux. As the Director of Genetics at Mount Sinai Medical Center, Dr. Irman Forghani helps patients with Marfan syndrome and related conditions and understands the

physical and emotional challenges the period of young adulthood can present. “The need for careful planning and coordination is essential,” said Dr. Forghani. “E ff ective transition plans help prevent gaps in care, reduce the risk of complications, and promote adherence to treatment regimens. The health system and medical providers play a key role in facilitating a smooth transition that fosters autonomy and empowers young adults to take an active role in managing their condition[s], ultimately improving long-term outcomes and quality of life.”

★ Continuity of Care: Marfan syndrome is a complex, multisystemic condition that requires ongoing, specialized medical attention throughout an individual’s life. Ensuring a smooth transition helps maintain the continuity of care, preventing lapses in treatment that could lead to complications. ★ Specialized Knowledge: Pediatric and adult care providers may have di ff erent expertise and approaches to managing [connective tissue conditions]. Proper coordination ensures that young adults continue to receive care from providers who are knowledgeable about the condition and its long-term management. ★ Preventive Measures and Monitoring: Regular monitoring and preventive measures are crucial for managing the cardiovascular, skeletal, ocular, and other potential complications associated with genetic aortic and vascular conditions. A well-coordinated transition ensures that these measures are consistently applied, reducing the risk of severe complications. ★ Psychosocial Support: Young adults with Loeys-Dietz, Marfan, VEDS or related conditions may face psychosocial issues as they transition to adulthood. Coordinated care helps address these needs comprehensively, including support for educational and vocational planning, mental health, and independence. ★ Patient Empowerment: Transitioning to adult care involves educating young adults about their condition and empowering them to take an active role in managing their health. This process helps them develop the skills and con fi dence needed to navigate the health care system e ff ectively as adults. ★ Family Involvement: Involving families in the transition process can provide additional support and ensure that young adults have a strong network to assist them in managing their conditions. ★ Timely Preparation of the Patient and Family: Introducing the concept of transition to a new health system in a timely fashion is important to allow education and preparation. Ideally, this preparation should start a few years ahead by providing counseling to help patients develop self-management skills and understand the importance of lifelong monitoring and treatment adherence. According to Forghani, the Multidisciplinary Connective Tissue and Aortic Disease Clinic team at Mount Sinai Medical Center uses these core elements to develop strategies to overcome the challenges when transitioning care. These strategies include a dedicated transition coordinator, comprehensive evaluations, multidisciplinary care, lifelong monitoring, and psychosocial support. Dr. Forghani shared core elements to consider when entering adult care:

“By implementing these strategies, we minimize disruptions and ensure young adults with genetic aortic and vascular conditions receive continuous, high

quality care as they transition from pediatric to adult services.”

Needto fi nd a coordinated clinic or want to know how to set up a care team? Download our clinic directory, comprised of institutions around the country that treat Marfan, Loeys-Dietz, VEDS, and related conditions. We can also help with what questions to ask when evaluating potential medical centers. Visit Marfan.org/using-the-institution-directory .

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Fall 2024