Region Jnkpings ln Odontologiska Institutionen

Oral hygiene care programme for patients with Apert syndrome

Norderyd J*, Bergendal B

National Oral Disability Centre, The Institute for Postgraduate Dental Education, Jönköping, Sweden.


The aim of this investigation was to assess the level of oral hygiene in children and adults with Apert syndrome and to propose an oral hygiene care programme to serve as a check-list for patients, parents, and professionals.


Apert syndrome is one of the craniosynostosis syndromes. All affected individuals undergo advanced craniofacial and hand surgery. In Sweden craniofacial surgery and treatment planning for orthodontic and dentofacial orthopaedic measures are centralised. Orthodontic treatment is performed at specialist clinics in the local counties. Some of the disabilities associated with the syndrome are severe jaw anomalies with crowding of teeth, impaired hand function, and mild to severe mental retardation or developmental delay. All these impairments severely affect the performance of daily oral hygiene measures.

Materials and methods

Ten individuals with Apert syndrome (four children, three teenagers, and three adults) were clinically examined. Dental plaque scores were registered. The participants were interviewed using a structured protocol to assess how oral hygiene was performed and where and at what intervals the respondents received regular dental care.


Mean plaque scores (PLI) were 70%–85%. The teeth of all the children were or had been severely crowded, which in combination with impaired hand function severely compromised their ability to hold a toothbrush and perform daily oral hygiene measures. Six individuals regularly visited a dental hygienist. Only one child had been referred to a specialist dental clinic for "regular" dental care. To stress the importance of special supervision of oral health, an oral hygiene care programme was proposed and has been adopted by the Swedish Apert Association.


Individuals with Apert syndrome have considerable difficulties to maintain their oral health because of several aggravating circumstances and need special attention in dental care. To improve the quality of care and relieve the strain on the parents, a co-ordinator for all dental and medical care of children with multifactorial disabilities is recommended.

Uppdaterad: 2013-04-03
Anna Thofelt, Avdelningen för odontologisk radiologi Jönköping, Folktandvården