It’s a busy day here at the 12th International Congress on Cleft Lip/Palate and Related Craniofacial Anomalies. Here’s what our partners & staff are up to today!
CRCs in Peru
Esteban Lasso,Executive Director of Transforming Faces, will present during Session #57 – Global Strategies. In 2011, TF carried out a study to familiarize ourselves with the needs of children with cleft, as well as to see the resources currently available in Lima, in order to determine the viability of creating Community Rehabilitation Centres (CRCs). View the outcomes of the study.
CRCs were set up as a result and here are some initial results:
medical assessments in co-ordination with a pediatrician and monthly clinical meetings
300 families advised about necessary treatments, 150 families advised about nutrition, and 30 mothers given feeding advice.
160 parents and children attended an oral hygiene workshop
150 language therapy assessments, 20,000 individual language therapy sessions and 120 group language therapy sessions were carried out
psychological assessments for children conducted over 50 domestic visits, 30 school visits and 80 workshops for parents
Laura Lewis-Watts, Project Manager at Transforming Faces, will present during Session #47 – Global Perspectives. Despite a large number of international cleft lip and palate organizations currently active worldwide, there remains much untapped potential for cooperation between agencies. This presentation will highlight several collaborative projects along with a review of early achievements, shortcomings and challenges. The discussion will illustrate how organizations with different areas of expertise and priorities can build a common platform and remain responsive to the needs of shared partners.
Esteban will also present during Session #47 – Global Perspectives. Among international treatment organizations, the provision of multidisciplinary rehabilitation has become a growing area of focus. However, in many developing countries patient follow up and retention rates have remained low, even where multidisciplinary services exist.
A recent survey of two multidisciplinary centres in Argentina and Peru indicate that the percentage of patients continuing with post-surgery treatment is in the range of 20-30%. For international treatment organizations, this raises the question of how to more effectively support sustained long-term patient follow up in resource-challenged environments, especially in countries where there is no registry of children born with cleft lip and palate and statistical data is minimal.
This presentation will explore various methods piloted to improve long-term patient follow up, including decentralized cleft care centres in urban areas, community-based rehabilitation initiatives, and attempts to establish cleft registries in developing countries.
Also during Session #47 – Global Perspectives, a presentation will outline the development of continental training centers in Africa. Partners in Africa Cleft Training (PACT) aims to develop three training centers in sub-Saharan Africa that can serve as models of interdisciplinary team cleft care and education for future African providers and new teams.
Also taking place today:
During Session #56 – Craniofacial Surgery – Non Syndrome, Bowornsilp Chowchuen from Thailand will present the experience of the Tawanchai Craniofacial Center of long-term management and adolescent outcomes of patients with fronto-ethmoidal meningoencephalocele (FEEM). Interdisciplinary management was necessary to provide proper, early and longitudinal care and to achieve optimum outcomes for patients with FEEM.
Representatives from Khon Kaen University will also present during Session #63 – Health Care / Epidemiology II. Cleft lip and palate is a critical health problem in Thailand, with an incidence rate of 2.49/1000 live births. To insure the best outcomes, surgery should be performed near the age of three months. However, from 1993 to 2007, only 39.7% of children with a cleft lip and palate underwent an operation by the age of 3-4 months and only 58.18% by the age of 9-12 months.
A pilot cleft birth registry, developed by the Tawanchai Cleft Center, was made available to 28 hospitals in Khon Kaen, Thailand. During three months of active use, a total of twenty-four newborns with a cleft lip and palate were registered into this cleft birth registry. Subsequent examination showed that all registered cases received proper management at tertiary healthcare settings. Results suggest that a cleft birth registry has the potential to facilitate timely care delivery.
During Session #59 – Otolaryngology and Audiology, Benjamas Prathanee from Thailand will present. Hearing impairment is one of the associated problems seen particularly in children with cleft lip and palate rather than cleft lip alone. The reports of the incidence of hearing loss of the cleft palate population vary widely, ranging from 30% to 93%. The study found a high prevalence of hearing impairment in patients with cleft lip and palate and this suggests that routine audiological assessment should be performed as soon as possible, especially in children.
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