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A Closer Look at Delayed Primary Cleft Surgery and Unrepaired Cleft Lip and/or Palate in 5 UK Cleft Centers
Sophie Butterworth1, Clare Rivers2, Marnie Fullarton3
15983Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, Northern Ireland, United Kingdom.
Insights
This study examined delays in primary cleft lip and palate repair across five UK centers. Delays were common, with some children intentionally left unrepaired due to medical complexities.
Area of Science:
- Craniofacial Surgery
- Pediatric Surgery
- Public Health
Background:
- Variations in primary cleft surgery timing exist.
- Reasons for delayed cleft lip and palate repair require investigation.
- Unrepaired clefts and their underlying causes need identification.
Purpose of the Study:
- To investigate the age of children undergoing primary cleft lip or palate repair in UK cleft centers.
- To identify reasons for delayed primary cleft lip repair (beyond 6 months) and palate repair (beyond 13 months).
- To identify unrepaired cleft lip and/or palate (CL±P) cases and reasons for non-repair.
Main Methods:
- Retrospective, multicenter review of patients with CL±P.
- Data collected from 5 UK cleft centers between December 2012 and December 2016.
- Analysis of patient records to determine repair timing and reasons for delay or non-repair.
Main Results:
- 1826 patients with CL±P were identified.
- 120 patients experienced delayed lip repair (>183 days) and 178 had delayed palate repair (>396 days).
- Twenty patients (1%) had unrepaired cleft palates, primarily due to medical comorbidities or syndromic diagnoses.
Conclusions:
- Significant variations in cleft surgery timing exist between centers.
- Medical comorbidities, underweight status, and prematurity are key reasons for delayed surgery.
- The role of cleft specialist nurses and pediatricians in the multidisciplinary team is crucial for timely intervention.
Background:
There may be many reasons for delays to primary cleft surgery. Our aim was to investigate the age of children undergoing primary cleft lip or primary cleft palate repair in 5 cleft centers within the United Kingdom. Identify the reasons for delayed primary cleft lip repair (beyond 6 months) and delayed primary palate repair (beyond 13 months). Identify children who had a cleft lip and/or palate (CL±P) that was intentionally unrepaired and the reasons for this.
Methods:
A retrospective, multicenter review of patients born with a CL±P between December 1, 2012, and December 31, 2016. Three regional cleft centers, comprising of 5 cleft administrative units in the United Kingdom participated.
Results:
In all, 1826 patients with CL±P were identified. Of them, 120 patients had delayed lip repair, outside the expected standard of 183 days. And, 178 patients in total had delayed palate repair, outside the expected standard of 396 days. Twenty (1%) patients had an unrepaired cleft palate.
Conclusions:
This large retrospective review highlights variations between centers regarding the timing of lip and palate surgery and details the reasons stated for delayed primary surgery. A small number of patients with an unrepaired cleft palate were identified. All had complex medical problems or comorbidities listed as a reason for the decision not to operate and 50% had a syndromic diagnosis. The number of patients receiving delayed surgery due to comorbidities, being underweight or prematurity, highlights the importance of the cleft specialist nurse and pediatrician within the cleft multidisciplinary team.
