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Cleft lip and palate: Care configuration, national registration, and research strategies
Jonathan Sandy1, Amy Davies1, Kerry Humphries1
1The Cleft Collective, University of Bristol, Bristol, United Kingdom.
Insights
Centralizing cleft lip and palate care improves patient outcomes and facilitates research. This approach enables specialized teams to enhance treatment quality and establish national registries for better health management.
Area of Science:
- Craniofacial anomalies
- Public health
- Health services research
Background:
- Cleft lip and palate affects millions globally, requiring extensive, long-term medical intervention.
- Current care models vary, necessitating optimization for improved patient outcomes.
- Long-term care impacts morbidity, mortality, and educational attainment.
Purpose of the Study:
- To advocate for centralized care models for cleft lip and palate.
- To highlight the benefits of centralized care, including improved outcomes and research opportunities.
- To emphasize the role of specialized cleft teams and national registries.
Main Methods:
- Review of existing cleft care models.
- Analysis of benefits of centralized care services.
- Discussion of population genetics and research platforms.
- Highlighting the role of orthodontists in cleft care teams.
Main Results:
- Centralized care models can improve patient outcomes.
- Centralization facilitates the establishment of national registries.
- Opportunities exist for building robust research platforms.
- Specialized teams with sufficient patient volume enhance proficiency and quality measurement.
Conclusions:
- Centralized cleft care is the recommended model for optimizing patient outcomes.
- National registries and research platforms are crucial for advancing cleft care.
- Multidisciplinary cleft teams, including orthodontists, are essential for comprehensive management.
Abstract:
A child born with a cleft lip and palate will face 20 years or more of hospital care and surgery. This is a global problem with approximately 10 million people affected worldwide. Various models of care exist around the condition, and the best configurations of services within an economy need to be optimized. We provide examples of how centralized care can improve outcomes and provide an opportunity to establish national registries, and then emphasize the opportunities for building research platforms of relevance. The default of any cleft service should be to centralize care and enable cleft teams with a sufficient volume of patients to develop proficiency and measure the quality of outcomes. The latter needs to be benchmarked against the better centers in Europe. Two areas of concern for those with cleft are morbidity/mortality and educational attainment. These two issues are placed in context within the literature and wider approaches using population genetics. Orthodontists have always played a key role in developing these initiatives and are core members of cleft teams with major responsibilities for these children and their families.
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