Intellectual and motor performance, quality of life and psychosocial adjustment in children with cystinosis
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ORIGINAL ARTICLE
Intellectual and motor performance, quality of life and psychosocial adjustment in children with cystinosis Francis F. Ulmer & Markus A. Landolt & Russia Ha Vinh & Thierry A. G. M. Huisman & Thomas J. Neuhaus & Bea Latal & Guido F. Laube
Received: 3 October 2008 / Revised: 5 February 2009 / Accepted: 6 February 2009 / Published online: 18 March 2009 # IPNA 2009
Abstract Cystinosis is a rare multisystemic progressive disorder mandating lifelong medical treatment. Knowledge on the intellectual and motor functioning, health-related quality of life and psychosocial adjustment in children with cystinosis is limited. We have investigated nine patients (four after renal transplantation) at a median age of 9.7 years (range 5.3–19.9 years). Intellectual performance (IP) was analysed with the Wechsler Intelligence Scale for Children-III (seven children) and the Kaufman Assessment Battery for Children (two children). Motor performance (MP) was evaluated using the Zurich Neuromotor Assessment Test, and quality of life (QOL) was studied by means
Bea Latal and Guido F. Laube share senior authorship. F. F. Ulmer : T. J. Neuhaus : G. F. Laube (*) Nephrology Unit, University Children’s Hospital Zurich, Steinwiesstrasse 75, 8032 Zurich, Switzerland e-mail: [email protected]
of the Netherlands Organization for Applied Scientific Research Academical Medical Center Child Quality of Life Questionnaire. Psychosocial adjustment was assessed by the Child Behavior Checklist. The overall intelligence quotient (IQ) of our patient cohort (median 92, range 71– 105) was significantly lower than that of the healthy controls (p=0.04), with two patients having an IQ
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