Patients born with a submucous cleft palate (SMCP) are recorded in the CRANE Database.
Children born with a submucous cleft palate may have classic signs such as a bifid uvula, a blue line along the palate (also known as ‘zona pellucida’ which occurs when the muscles of the palate do not cross the midline and the palate in the middle is a thin layer made of mucosa only) and/or a notch in the hard palate. Children may also have an occult SMCP, a condition where there are no overt clinical signs (no bifidity to the uvula, no blue line / zona pellucida in the palatal midline and/or no hard palate notch) but still have symptoms of nasal regurgitation or altered speech.
So that we can accurately record the number – of these patients, we ask that you please tick the box that says SMCP in the cleft details section of the database (as per Data Dictionary).
This means that CRANE can include them in registry information, so that we can accurately report the number of these cases. This is helpful in future service planning and commissioning. Currently, children with SMCP are excluded from indicator reporting –for example, the timing of diagnosis – and outcome indicator reporting in Annual Reports and SSQ Dashboards as the presentation is highly variable and as such not appropriate for auditing with children affected by overt clefting (such exclusion has Cleft Development Group approval). However as more data is collected on this cohort of children this decision may be revisited, though any future audit would be stratified (separate) for SMCP.
For children with a bifid uvula, the guidance depends on whether the bifid uvula occurs as part of a possible diagnosis of submucous cleft palate or if this has occurred in isolation.
Some children can have a bifid uvula without having any problems with their speech or evidence of nasal regurgitation. These children are likely to be discharged from cleft services once a speech assessment has taken place and there are no concerns regarding cleft type articulation or resonance. If these children are added to the database because the diagnosis is unclear, and a decision is made subsequently to discharged the patient from your service following confirmation of ‘normal’ speech / absence of non-cleft speech errors, a request for them to be removed from the database can be made. For patients with a bifid uvula and symptoms/signs to suggest a submucous cleft palate, please record these by ticking the SMCP box in the cleft details section of the database. This is important for CRANE to maintain an accurate record of registrations.
For further updates relating to children born with a SMCP please click here.