PracticeUpdate Conference Series_WORLDSymposium 2019

Transition From Pediatric to Adult Care in Patients With MPS Needs to Be Flexible and Comprehensive Patients need to be given sufficient time to learn how the systems differ.

C omprehensive strategies are needed when transferring patients with mucopolysaccha- ridosis (MPS) from pediatric to adult care, concludes a case review. Christian J. Hendriksz, MD, MBChB, MSc, of the University of Pretoria in South Africa, and col- leagues reviewed challenges in transitioning patients with MPS from pediatric to adult care. They used case studies to highlight challenges that have emerged in such transitions. They shared best practice strategies to optimize the transition. “We were keen,” Dr. Hendriksz told Elsevier’s PracticeUpdate , “to take real life cases and illus- trate why transition in this group of patients can be more challenging than in patients with more common disorders.”

Dr. Christian J. Hendriksz

He continued, “The real issues for these patients are that most are diagnosed after a prolonged diagnostic odyssey. By the time they are diag- nosed, their trust in the medical system is low. Then suddenly they fnd an expert who understands their disorder and they get very attached. They then become experts in their disorder. They often need to educate their clinician to get appropriate care.” " 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. "

“This need to inform their physician reinforces their mistrust in the medical profession. Then, suddenly, they are told they need to move to a new team due to their age. Many struggle with this transition. Few physicians who treat adults care for patients with mucopolysaccharidosis, so their struggles start again. Their new clinician, however, will better manage their common adult healthcare problems. We need to prepare them for this change in their care and establish systems in which our adult care colleagues can learn from us.” Six cases were provided by four leading European metabolic disease centers, including patients with MPS I, II, IIIC, and VI, age 15–18 years at first transi- tion visit (age 16–19 years at transfer to adult care). Transition processes were based on national guide- lines and institutional regulations. Strategies varied in the duration of transition periods, healthcare providers involved, and methods used to support patients and monitor their readiness for transfer to adult care. At one center, adult care was coordinated in a pedi- atric setting. At others, patient care was transferred

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