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Child's Nervous System

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Open Access 01-06-2012 | Original Paper

Health-related problems and quality of life in patients with syndromic and complex craniosynostosis

Authors: Tim de Jong, Marianne Maliepaard, Natalja Bannink, Hein Raat, Irene M. J. Mathijssen

Published in: Child's Nervous System | Issue 6/2012

Abstract

Purpose

We conducted this study to gauge the health-related problems, quality of life and the performance of the Health Utility Index Mark 3 (HUI-3) in patients with syndromic and complex craniosynostosis. Patients with syndromic and complex craniosynostosis have various physical and mental problems. More insight on these problems, per syndrome, could provide guidance to improve patient treatment and follow-up.

Methods

A cross-sectional, comparative study on 131 patients and their parents was performed. Health-related quality of life was measured with the HUI-3 and the Visual Analogue Scale (VAS). All data were compared to a normative Dutch population. Vision, hearing and intelligence were objectively measured.

Results

The HUI-3 and the VAS were significant lower compared to the normative Dutch population. All syndromes have a high prevalence of vision and speech problems. Cognitive problems were mainly reported in patients with Apert, Crouzon and Muenke syndrome. Ambulation and dexterity problems were seen in Apert, Crouzon, Saethre–Chotzen and complex craniosynostosis. Only patients with Apert syndrome scored significantly worse on pain. The HUI-3 had a medium to strong correlation with the objectively measured outcomes.

Conclusions

The overall quality of life is lower in patients with syndromic and complex craniosynostosis. To improve quality of life, more attention is needed for problems with vision and speech.

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Title: Health-related problems and quality of life in patients with syndromic and complex craniosynostosis
Authors: Tim de Jong
Marianne Maliepaard
Natalja Bannink
Hein Raat
Irene M. J. Mathijssen
Publication date: 01-06-2012
Publisher: Springer-Verlag
Published in: Child's Nervous System / Issue 6/2012
Print ISSN: 0256-7040
Electronic ISSN: 1433-0350
DOI: https://doi.org/10.1007/s00381-012-1681-4

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Health-related problems and quality of life in patients with syndromic and complex craniosynostosis

Abstract

Purpose

Methods

Results

Conclusions

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Purpose

Methods

Results

Conclusions

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