Decision making

Decision making

The involvement of individuals with CdLS and their care providers in health-care decisions is essential. Intellectual disability and executive functioning impairments in individuals with CdLS can reduce an individual’s ability to make decisions. In these instances, care providers and health-care professionals have to decide what is best and document an individual’s values, preferences and quality of life (¹⁹³).

Knowledge about CdLS is essential to manage expectations, and health-care providers and social services need to be aware of the needs and problems that may be expected. Family support groups and social media have proved to be extremely helpful for awareness of the needs and problems that individuals with CdLS can face (¹⁹⁴,¹⁹⁵). Guardianship rules vary among countries, and it is essential for guardianship to be determined and assigned before adulthood.

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 lug 2018

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Ultima modifica di Gerritjan Koekkoek il 2022/09/29 16:10

Creato da Gerritjan Koekkoek il 2019/03/27 15:09