Cleft lip and palate (CLP) deformity has become a major public health problem affecting one in every 700 – 1000 births worldwide1. CLP is considered one of the most common birth defects that possess significant medical, psychological, social, and financial implications on the affected individuals and families2. Previous reviews suggest that clefts are due to multifactorial aetiology involving many genes and environmental factors such as smoking, alcohol consumption, and-anti convulsion drugs3,4. In addition to the aesthetic disfigurement, a child with CLP suffers substantial functional morbidity such as restricted maxillofacial growth, speech anomalies, swallowing and feeding difficulties, hearing loss and/or recurrent ear infections. Although not generally life-threatening, living with a cleft elicits a significant health burden5,6. In Malaysia, results of The National Oral Health Surveys (NOHS) indicated an increased incidence of CLP, with varying occurrences from one in 1006 to one in 941 live birth7,8. In a study carried out in 1990, Boo and Arshad reported the incidence to be 1.24 in 1000 live births. The Chinese had the highest incidence of 1.9 per 1000 births, while the Malays had the lowest incidence of 0.98 per 1000 births and the most common type was reported to be the unilateral cleft of the hard and soft palate4.
The management of child born with CLP starts from the first day of life. The treatment needs of children with CLP are numerous, complex, requiring specialized and coordinated care of a multidisciplinary team (MDT). A substantial number of children undergo surgery after birth and treatment continues up to the age of 18 – 20 years old, which is undoubtedly lengthy and significant financial burden for families. Treatment aims are to restore as normal anatomy (face and dentition) and normal function (speech, feeding and hearing) and to encourage normal physical and psychological development9. Therefore, it is difficult for a clinician to deal with all its aspects and make all the best decisions for the patient. For this reason, a team approach is highly recommended. The interaction and consultation between various disciplines provides care for the cleft patients that can be systematically and comprehensively planned as well as enhances understanding of the possibilities and limitations of various treatment approaches10.
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The team approach treatment of children with cleft is not new. It was developed in the 1930’s in response to the 1933 Social Security Act in the Western countries11,12. Controversy abounds with regard to the most appropriate methods of organisation and management for cleft patients and large volume of literature continues to be produced by teams and individuals who advocate particular management regimes 13. It is also evident that wide range of surgical techniques exist to correct this anomaly but with no clear-cut guidelines for optimal timing or method14. The presented management of the CLP is not accepted exactly by all cleft centers and there is a striking diversity of clinical practice in the area15. An interdisciplinary care allows for the best possible treatment outcome with each member of the team involved in a coordinated treatment protocol for the cleft patient16.
At the beginning of the 20th century, and in common with most of Europe, CLP treatment in the United Kingdom (UK) was provided in an uncoordinated manner by isolated general surgeons, speech therapist and occasionally dentist. The study by Show et al17 was regarding the intercenter comparison of outcomes by six European groups in 1987. The result showed that the two UK centers who participated in the study were weakest on almost every aspect of care including organization and outcomes of CLP treatment. This was supported by another study, Williams et al18 that confirm a large number of cleft team existed were poorly organized. Mindful of this, the UK Health Ministers set up the Clinical Standards Advisory Group (CSAG) commissioned as an independent source of expert advice to the UK Health Ministers on a standard of clinical care for CLP patient. In 1998, the CSAG UK study results were confirming poor outcomes of surgery for children born with CLP and the CSAG committee made few recommendations to the UK government19. Recent study by Scott et al20 represent data on the current provision of CLP services in the UK and the result reported CSAG 1998 recommendations have been broadly implemented in all centralized cleft service in UK.
A multidisciplinary approach to the CLP treatment is widely accepted all over the world. The specialties involved essentially should include the Oral and Maxillofacial Surgeon (OMFS), Orthodontist, Plastic Surgeon, Otorhinolaryngologist and Speech Pathologist21,22. Others such as Audiologist, Paediatric Surgeon, social worker and Genetic Counselor or Psychologist have been mentioned in the literature but their services are not universal17.
It has been established that cleft cases require a proper Cleft Management Protocol. A key element of this protocol is the availability of a Combined Cleft Clinic (CCC) to provide multi-disciplinary care to cleft patients. A multi-disciplinary approach is critical as a cleft case (depending on severity) undergo various stages of interventions/corrective procedures through a patient’s life cycle through adolescent. Specific to Malaysia, CCCs are available only in a very small number of urban centers and treatment of cleft patients is done in main hospitals with only a few disciplines involved with no standardized protocol and recall appointments for further follow-up. Hence, a number of patients are left untreated or partially treated until adulthood10. To date, there are limited or almost no research has been conducted to investigate the standard of care for CLP patient among the CCC in Malaysia. Therefore, the purpose of this study is to evaluate the standards of care provided by the multidisciplinary cleft teams’ hospital universities in Malaysia. Specifically, this study will investigate the structure of the CCC (which is including team composition, clinical sessions, record keeping system and infrastructure), to identify the clinical audit practice, to determine method of decision making and record keeping, to identify range of treatment provided for CLP patient from various centres and to compare the collected data with the recommendations made by CSAG UK 1998. In the end, it is hoped that this project will provide proposals for the existing CCCs to be made more effective, provide the guidelines for the setting up of CCCs in more hospitals across Malaysia and the establishment of Cleft Registry in Malaysia.