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

Research output: Contribution to journalArticle

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 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

Original languageEnglish (US)
Pages (from-to)1371-1378
Number of pages8
JournalPediatric Nephrology
Volume24
Issue number7
DOIs
StatePublished - 2009

Keywords

  • Cystinosis
  • Intellectual performance
  • Motor performance
  • Psychosocial adjustment
  • Quality of life

ASJC Scopus subject areas

  • Nephrology
  • Pediatrics, Perinatology, and Child Health

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    Ulmer, F. F., Landolt, M. A., Ha Vinh, R., Huisman, T. A. G. M., Neuhaus, T. J., Latal, B., & Laube, G. F. (2009). Intellectual and motor performance, quality of life and psychosocial adjustment in children with cystinosis. Pediatric Nephrology, 24(7), 1371-1378. https://doi.org/10.1007/s00467-009-1149-2