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Background: Cleft lip and palate is a common developmental defect, however limited up to date information is available on the costs of treatment. This is important for national distribution of funds, developing cost effective patient pathways, and informing patients and their families of potential financial implications. Methods: A questionnaire was developed and sent to experts in cleft lip and palate treatment via the European Cleft Gateway and to those who responded positively to a preliminary survey as part of the Global Epidemiology, Aetiology and Prevention Task Force. This questionnaire aimed to ascertain direct costs for pre-surgical orthopaedics, surgical repair, Speech and Language Therapy (SLT), orthodontics, and orthognathic surgery in different cleft centres. Respondents were also asked to advise on sources of funding and the percentage of patients who receive SLT, orthodontics and orthognathic surgery. Indirect costs were out of the scope of this research. Results: Limited knowledge was evident from the twenty responses received, with the majority relating to European centres. However, from the information received, a direct cost of cleft treatment was estimated as $10,000-13,000 in European countries (where state/state health insurance is the most common source of funding) and $3,000-5,000 in India (where patient and charity organisations fund treatment). Conclusion: Further work is required to gain homogenous data on the cost of cleft treatment internationally to allow cleft pathways to become more cost effective and to inform patients on costs where treatment is not funded by the state or private health insurance.

International Knowledge of Direct Costs of Cleft Lip and Palate Treatment