Transition

Transition

In CdLS, the transition from paediatric (child) to adult medical care can bring about substantial challenges and require parental involvement (190). Transitions are usually associated with changes in daytime environment, leaving home and social changes. An individual’s care changes from family-focused to individual-focused. 

Transition of care should be initiated at an early phase, with proper transfer of medical history and knowledge about the personal characteristics of the individual with CdLS. Transitions that are initiated too late can result in a gap in communication and co-ordination between paediatric and adult services. 

Care can be improved by current and future health care providers jointly assessing individuals with CdLS in order to smooth the transition (¹⁰⁹,¹⁹¹,¹⁹²) (R68).

Antonie D. Kline, Joanna F. Moss, […]Raoul C. Hennekam

_{Adapted from: Kline, A. D., Moss, J. F., Selicorni, A., Bisgaard, A., Deardorff, M. A., Gillett, P. M., Ishman, S. L., Kerr, L. M., Levin, A. V., Mulder, P. A., Ramos, F. J., Wierzba, J., Ajmone, P.F., Axtell, D., Blagowidow, N., Cereda, A., Costantino, A., Cormier-Daire, V., FitzPatrick, D., Grados, M., Groves, L., Guthrie, W., Huisman, S., Kaiser, F. J., Koekkoek, G., Levis, M., Mariani, M., McCleery, J. P., Menke, L. A., Metrena, A., O’Connor, J., Oliver, C., Pie, J., Piening, S., Potter, C. J., Quaglio, A. L., Redeker, E., Richman, D., Rigamonti, C., Shi, A., Tümer, Z., Van Balkom, I. D. C. and Hennekam, R. C. (2018).}

Source:

Diagnosis and management in Cornelia de Lange Syndrome: First international consensus statement. Nature Reviews Genetics, 19, 649-666, published on 11 jul. 2018

Sidehistorie

Senest ændret af Gerritjan Koekkoek den 2021/04/22 12:07

Oprettet af Gerritjan Koekkoek den 2019/03/27 15:09