Aims The increased risk of developmental delay in children with cardiac pathology is well documented, with an average prevalence of 75%. Studies have demonstrated that only 25% of these children will enter school with a delay diagnosed, resulting in negative impacts for the undiagnosed child alongside missed opportunity for early intervention.
Our aim is to evaluate whether these patients are appropriately followed up within the community for assessment and monitoring of developmental status.
Methods A retrospective service evaluation of eighty-three patients with both syndrome diagnoses and isolated cardiac defects using guidelines developed from NHS literature from other UK trusts.
Children were identified by diagnosis from hospital records using Cardiobase and followed up with the community software PARIS.
Data on time scale, outcome and quality of referral was collected.
Results Of the eighty-three patients studied, a total of forty-two were found to be directly referred for community follow up. This accounted for 57.1% and 43.5% of syndromic and isolated patients respectively. The mean age of referral was 36.8 months for syndromic patients and 31.7 months for patients with isolated defects. A mean delay of 18 months between diagnosis and referral for syndromic patients and 27.8 months in those patients with isolated defects was found.
The referrals that were made were detailed and well documented. Patients were appropriately followed up or discharged once they had become known to community paediatrics.
Additionally, nearly one fifth of children did not attend their community appointments. This finding was likely to be linked with poor parental understanding of the need for developmental review, highlighting a shortcoming in the information provided within correspondence to parents.
Conclusion Many cardiac patients are not referred to community follow up for developmental review. Patients who are referred often face a significant delay.
New guidelines have been developed to support cardiology teams in the process of referring a cardiac patient for developmental assessment when they are not already known to community paediatrics. Children should not be left to routine surveillance services, as the collated data has demonstrated this results in missed referrals for a host of reasons.
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