Medical care

Medical care

Individuals with CdLS require lifelong medical, multidisciplinary and social care. Access to clinical assessments, counselling and follow-up by a multidisciplinary team is likely to improve health care and increase quality of life. Barriers to accessing care have been recognised, and include health or behavioural complications, geographical isolation and financial considerations (85,186,187). Individuals with CdLS are now likely to live into adulthood and old age. This brings about the risk of individuals developing common chronic diseases alongside CdLS-related medical problems. 

Individuals with CdLS are more likely to experience delayed treatment, to be hospitalised and to have more complications and longer admissions than individuals without CdLS. Often, this is due to a lack of knowledge regarding CdLS by healthcare providers, difficulties in obtaining medical history and, possibly, stigmatisation. Healthcare providers and social services should access information about CdLS. Syndrome sensitive, personalised care plans should be offered to every individual with CdLS and their caregivers. Individuals should also receive regular health checks, with planning of admissions and discharges made in advance. Procedure specific information booklets using simple language and photos can be very beneficial for individuals and their families and are recommended (188,189) (R66, R67).

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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).

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Last modified by Gerritjan Koekkoek on 2020/07/01 14:56
Created by Gerritjan Koekkoek on 2020/07/01 14:56



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