Craniofacial malformations

afbeelding Jolanda Okkerse

Group head: Jolanda Okkerse

'Psychosocial functioning of children with craniofacial malformations and their families.'

Patients with craniofacial malformations have to cope with several adversities in their life. For example, some craniofacial malformations are associated with an increased risk of (neuro)cognitive and/or behavioral problems. Furthermore, most patients with craniofacial malformations have to undergo multiple operations, from birth until adulthood, and they also have to deal with other forms of medical treatment and procedures. Despite medical treatment, a substantial part of these patients has to learn to live with a facial disfigurement and with reactions to their appearance.
So, having a craniofacial malformation has an impact on the psychosocial functioning of the patients and their families, due to:
- having an increased risk of cognitive and/or behavioral problems;
- medical treatment (reconstructive surgery, other forms of medical treatment)
- living with a facial disfigurement;


Aim of this research line:
To contribute to describing and improving psychosocial functioning of patients with craniofacial malformations and their families.


Research group:
- Joris van der Vlugt, PhD student
- Marianne Maliepaard, PhD student
- Willem Leemreis, PhD student

Collaborations:
- Prof. dr. F.C. Verhulst, Department of  Child- and Adolescent Psychiatry, Erasmus MC Rotterdam
- Prof. dr. S. Hovius, Department of Plastic Surgery, Erasmus MC Rotterdam, The Netherlands
- Prof. dr. I. Matthijssen, Department of Plastic and Reconstructive Surgery, Erasmus MC Rotterdam, The Netherlands
- Dr. J. van der Meulen, Department of Plastic and Reconstructive Surgery, Erasmus MC Rotterdam, The Netherlands
- Dr. L. van Adrichem, Department of Plastic and Reconstructive Surgery, Erasmus MC Rotterdam, The Netherlands
- Drs. E. Ongkosuwito, Department of Orthodontics, ErasmusMC Rotterdam, The Netherlands
- Prof. dr. J. Oosterlaan, Department of Clinical Neuropsychology, VU University Amsterdam, The Netherlands;
- Prof. dr. A. Oranje, Department of Dermatology, Erasmus MC Rotterdam, The Netherlands
- Dr. V. Kraaij, Medical Psychology, Leiden University Medical Center, The Netherlands


This research group has three main objectives:
1. (Neuro)cognitive and behavioral functioning in children with craniosynostosis.
In his researchproject Joris van der Vlugt focuses on the (neuro)cognitive and behavioural functioning in children with trigonocephaly. This researchproject is performed in collaboration with prof. Verhulst, prof. Hovius and dr. J. van der Meulen.
Grant: Fonds NutsOhra
The study of Marianne Maliepaard investigates the (neuro)cognitive and behavioural functioning in children with syndromic or complex craniosynostosis. Both I. Mathijssen and J. Okkerse are supervising this study. Furthermore, prof. Verhulst and prof. dr. J. Oosterlaan are involved in this study.
Grant: Fonds NutsOhra

2. The impact of facial disfigurement.
Willem Leemreis is investigating the impact on parents of children with facial disfigurement.  Prof. dr. A.P. Oranje has initiated this project. Furthermore, prof. Verhulst, dr. V. Kraaij,  dr. L. van Adrichem and drs. E. Ongkosuwito are involved in this study.
Grant: Stichting In Face.
Future project: The impact of facial disfigurement on children, adolescents and young adults will be investigated.

3. The impact of medical treatment.
Future projects will focus on the impact of medical treatment on psychosocial functioning e.g. post-operative functioning in infants with craniosynostosis;