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Healthcare transition in persons with intellectual disabilities: General issues, the Maastricht model, and Prader-Willi syndrome
American journal of medical genetics. Part C, Seminars in medical genetics, 2007-08, Vol.145C (3), p.241-247
Schrander-Stumpel, Constance T.R.M.
Sinnema, Margje
van den Hout, Lieke
Maaskant, Marian A.
van Schrojenstein Lantman-de Valk, Henny M.J.
Wagemans, Annemieke
Schrander, Jaap J.P.
Curfs, Leopold M.G.
2007
Volltextzugriff (PDF)
Details
Autor(en) / Beteiligte
Schrander-Stumpel, Constance T.R.M.
Sinnema, Margje
van den Hout, Lieke
Maaskant, Marian A.
van Schrojenstein Lantman-de Valk, Henny M.J.
Wagemans, Annemieke
Schrander, Jaap J.P.
Curfs, Leopold M.G.
Titel
Healthcare transition in persons with intellectual disabilities: General issues, the Maastricht model, and Prader-Willi syndrome
Ist Teil von
American journal of medical genetics. Part C, Seminars in medical genetics, 2007-08, Vol.145C (3), p.241-247
Ort / Verlag
Hoboken: Wiley Subscription Services, Inc., A Wiley Company
Erscheinungsjahr
2007
Quelle
MEDLINE
Beschreibungen/Notizen
In current healthcare, transitional healthcare is a very important and timely issue. Thanks to the major advances made in medical care and technology, many children with childhood onset diseases and/or genetic syndromes survive to adulthood. These children are at risk of not being provided with adequate healthcare as they reach adulthood. Healthcare transition is an essential part of healthcare provision, referred to as the shift from one type of healthcare to another. In Maastricht, we developed a transition/out clinic led by a medical doctor specialized in persons with intellectual disability (ID), together with a clinical geneticist. We aim to coordinate healthcare issues based on guidelines if available. Also questions concerning living, daily activities, relations, sexuality, and sterilization can be discussed. The aging process of persons with ID has been a topic of interest in recent years. Little is known about the aging process of people with specific syndromes, except for persons with Down syndrome. We present some data of a recent questionnaire study in persons with Prader–Willi syndrome. In only 50% in persons with a clinical diagnosis genetic test results could be reported. The majority of persons were obese. Diabetes mellitus, hypertension, skin problems, sleep apnea, and hormonal problems like osteoporosis and hypothyroidism were common. Psychiatric problems were frequent, especially in the persons with uniparental disomy. Osteoporosis and sleep apnoea seem to be underestimated. Further longitudinal research is necessary for a better understanding of the aging process in PWS. © 2007 Wiley‐Liss, Inc.
Sprache
Englisch
Identifikatoren
ISSN: 1552-4868
eISSN: 1552-4876
DOI: 10.1002/ajmg.c.30136
Titel-ID: cdi_proquest_miscellaneous_68117330
Format
–
Schlagworte
Adult
,
aging
,
Child
,
Child, Preschool
,
health care transition
,
Humans
,
Infant
,
Infant, Newborn
,
intellectual disabilities
,
Maastricht out clinic
,
Male
,
morbidity
,
Netherlands
,
Patient Care Management
,
Prader-Willi syndrome
,
Prader-Willi Syndrome - diagnosis
,
Prader-Willi Syndrome - therapy
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