71523 - 25 years with the Swedish national quality register for cleft lip and palate: -Where are we now?

This is the authors' abstract. We don't add key points for this paper.

Introduction Initiated in 1999 by Sweden's six Cleft Lip and Palate (CLP) centers, the national CLP registry aimed to standardize treatment and improve care through outcome comparisons. Achieving a 100% participation rate, it was designated a national quality registry in 2009, including all Swedish children and adolescents with CLP born in 2009 onwards. In 2023, the registry attained the highest certification level, leveraging registered data for care development and research. Method As of March 20, 2023, the registry documented 4,695 individuals born between 1999 and 2022, with 2,671 cases post-2009. The predominant diagnosis was a cleft of the hard and soft palate, among other variations. Data Quality: The registry boasts a 100% participation and a 94.6% coverage rate, with surgical and dental assessment reporting rates impressively over 90% for various age milestones. Early speech documentation presented challenges but showed improvement in recent cohorts. Result For isolated cleft palate cases, findings include a notable range in surgical interventions, secondary surgeries, and speech and dental outcomes at ages 5 and 10. Parent-reported intelligibility scores reflect high satisfaction, despite significant center-to-center variations in treatment specifics. Discussion CLP treatment in Sweden, marked by long-term engagement and diverse outcomes influenced by cleft severity and other factors, shows consistent success rates in dental occlusion and speech. The treatment for bilateral CLP and children with additional challenges continues to evolve, aiming for personalized care improvements.