ResultsIn the first 6 months of the 22q11DS Clinic 17 children were assessed. This attendance rate was 94% and 29% of this group had their appointment co-ordinated with another specialist on the same day. Overall, 46 children have been seen to date. Following their first assessment, in accordance to the guidelines and clinical need, overall 82% required surveillance investigations, including: blood testing (66% of children), renal ultrasound (30%) and X-Ray spine (9%). Specialist referrals were needed in 73% of children, to a variety of services, most commonly to mental health (48%), dental (20%), cardiology (18%), immunology (14%), cleft team (14%), ophthalmology (14%), audiology (9%), endocrine (7%) and orthopaedics (7%). Conclusion We have identified multiple areas of unmet need with reference to best practice guidance in this dedicated clinic. It is hoped that we can improve care co-ordination further by engaging other specialists to run clinics on the same day, appoint a nurse specialist and adopt a clear care pathway, tailored to the Irish healthcare system using a life course approach to ensure the regular monitoring and anticipation of issues and early intervention that helps in maintaining health, well-being and quality of life.
Before or during birth, a small number of infants experience reduced oxygen or blood supply. After birth, some of these infants will show abnormal neurological behaviour, diagnosed as hypoxic-ischemic encephalopathy (HIE). The consequences of HIE for the infant, their family and the wider society are considerable. Therapeutic hypothermia (TH) is a therapy which involves cooling an infant to a targeted temperature below an infants' normal core body temperature and is now the standard treatment for term infants (babies born after 36 completed weeks of gestation) with moderate to severe HIE. Research has demonstrated TH reduces the rate of death, severe disability and lifelong cerebral palsy for infants born with HIE.A standardised dataset was developed to collect detailed clinical data on the maternal, infant and clinical characteristics associated with TH. In Ireland, TH is administered in the four tertiary maternity hospitals, whereby infants born in other hospitals requiring this treatment are transferred to one of these four tertiary hospitals. Anonymised data were collected on site in the 19 maternity units/hospitals and neonatal intensive care units or special care baby units (NICU/SCBU) in the Republic of Ireland on all infants requiring TH between 1 January 2016 and 31 December 2017.Over the two year period, 140 infants required TH which suggests that one in 900 infants born in Ireland during 2016/ 2017 required TH. Nulliparous women accounted for 60% of the TH cohort (n=84). Of the women whose infants underwent TH, 18.6% (n=26) experienced maternal pyrexia during labour and 10% of women had a prolonged rupture of membranes (n=14). Less than 2% of mothers had an elective caesarean section. At one minute after birth 79.7%; of infants had an Apgar score between zero and three (n=110). Almost all infants required resuscitation at birth (95%; n=133 of 140), with 59.3% of infants needing intubation (n=83). Over the two year period, 60% (n=84) were born in a tertiary hospital with 40% (n=56) of infants requiring transfer from a regional or local hospital. The survival rate for the TH cohort was 88%, as 17 of the 140 infants died.The findings of this audit illustrate the logistical challenges faced with the delivery of a high acuity, uncommon treatment that has to be delivered on short notice. These findings also highlighted that there was an overrepresentation of complications preceding and during the delivery of the infants requiring TH.
Methodology There was a retrospective review of all patients reviewed in clinic in the last 3 months with Cerebral Palsy less than 18 years old. The radiology system 'NiMIS' was used to check for evidence of imaging and clinic letter was reviewed for evidence of clinical examination. The patients were classified according to their GMFCS group and results documented as 'Yes' 'No' if compliant to one or both guidelines and 'Don't know' if the images were not available on NIMIS.Results 12 patients were included in this re-audit with the overall compliance being 90%. GMFCS 1 included 3 patients all meeting the surveillance guidelines. GMFCS 2 included 3 patients with 100% compliance. GMFCS 3 included 2 patients with 50% compliance. GMFCS 4 had no patients. GMFCS 5 included 4 patients with 100% compliance and Hemiplegic Gait Group included 1 patient with 100% compliance. Conclusion We are now above the standard set for compliance to these guidelines. The re-audit was over a shorter time with fewer patients, however it does suggest an initial positive change. The plan will be to re-audit again in six months and a years' time to ensure that this level of compliance is maintained.
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