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Review
. 2018 Sep;178(3):355-364.
doi: 10.1002/ajmg.c.31653. Epub 2018 Sep 25.

Healthcare transition from childhood to adulthood in Tuberous Sclerosis Complex

Angela Peron  1   2 , Maria Paola Canevini  1 , Filippo Ghelma  3 , Fabiano Di Marco  4 , Aglaia Vignoli  1
Affiliations
Review

Healthcare transition from childhood to adulthood in Tuberous Sclerosis Complex

Angela Peron et al. Am J Med Genet C Semin Med Genet. 2018 Sep.

Abstract

Healthcare transition from childhood to adulthood is required to ensure continuity of care of an increasing number of individuals with chronic conditions surviving into adulthood. The transition for patients with tuberous sclerosis complex (TSC) is complicated by the multisystemic nature of this condition, age-dependent manifestations, and high clinical variability and by the presence of intellectual disability in at least half of the individuals. In this article, we address the medical needs regarding each TSC-related manifestation in adulthood, and the services and support required. We review existing models of transition in different chronic conditions, discuss our experience in transitioning from the pediatric to the adult TSC Clinic at our Institution, and propose general rules to follow when establishing a transition program for TSC. Although a generalizable transition model for TSC is likely not feasible for all Institutions, a multidisciplinary TSC clinic is probably the best model, developed in accordance with the resources available and country-specific healthcare systems. Coordination of care and education of the adult team should be always sought regardless of the transition model.

Keywords: TSC; adult care; adult manifestations; healthcare needs; pediatric care; transition; transitional program; tuberous sclerosis complex.

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Conflict of interest statement

None.

Figures

Figure 1
Figure 1
Schematic overview illustrating the healthcare transition process from childhood to adulthood at the pediatric and adult TSC clinic of San Paolo University Hospital in Milan, Italy. DAMA, disabled advanced medical assistance; PCP, primary care physician
Figure 2
Figure 2
The four W's: Proposed list containing points to consider and basic tips when establishing a transition process for TSC. *the clinical summary should preferably include: cognitive status; molecular diagnosis; presence of clinical manifestations related to TSC, with date of the last examination performed for each; medicines and dosages; allergies; social status and concerns
See this image and copyright information in PMC

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