PracticeUpdate Conference Series_WORLDSymposium 2019

from pediatric to adult care teams in different hos- pital departments or at different sites. Challenges included the attachment to pediatri- cians and the unwillingness to attend appointments with unfamiliar healthcare professionals. Limited knowledge of MPS in adult-care teams also con- cerned patients and parents. Challenges were resolved by preparing for transfer at an early stage, regularly communicating with and reassuring the patient and family, coordinating the process with MPS experts, and including multidisci- plinary input from MPS experts in adult care. Dr. Hendriksz explained that mucopolysacchari- doses are rare disorders associated with enzyme deficiencies, resulting in glycosaminoglycan accu- mulation in multiple organ systems. Improvements in diagnosis and therapy for MPS have allowed patients to survive to adulthood. A smooth transi- tion to adult care is essential. Dr. Hendriksz concluded that the cases highlight strategies needed to manage the transfer from pediatric to adult care in patients with MPS.

Transition plans should be comprehensive but exible to accommodate individual patient needs. Sufficient time should be provided to allow patients to understand the process and how the adult care system differs from the pediatric setting. Effective communication between adult and pediatric teams, as well as between patients and caregivers, is key to ensuring a smooth transition. “We need to start early,” Dr. Hendriksz added, “to reinforce that this change is an extension of their medical team, and that as they get older, their gen- eral medical needs become larger, which is why this transition is essential.” “We used this case study format to show both successes and failures, to enable others to learn and adapt. Our patients are diverse, as are our healthcare systems. We hope to learn from each other with the goal of developing digital tools and programs to facilitate that collaboration. Some excellent platforms could help toward this effort and empower our patients as well.”

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WORLDSymposium 2019 • PRACTICEUPDATE CONFERENCE SERIES 15