Abstract

<h3>Background</h3> The Down Syndrome Medical Interest Group U.K. &amp; Ireland published Guidelines on thyroid disorders in children and young people with Down syndrome: surveillance and when to initiate treatment in April 2020. The guidelines emphasised the importance of timely surveillance to prevent a negative impact on the cognitive abilities and general health in children with Down syndrome. <h3>Objectives</h3> In 2015 we undertook an audit of the thyroid surveillance offered to all children with Down syndrome. With the publication of the updated guidelines, we re-audited the same population cohort in 2020. <h3>Methods</h3> A retrospective notes review was undertaken of all children with Down syndrome attending the child development centre. The results were compared to an audit undertaken in 2015. The notes were reviewed for documentation if a blood test offer was declined by the parents due to concerns of attending a health centre or non-compliance for other reasons. <h3>Results</h3> Electronic case records of 69 children aged 0–19 were reviewed. There were six infants and 63 children aged 1–19 years. Seventy percent of children were offered a dried blood spot test and 30% a venous blood test. Six children had a known diagnosis of autoimmune hypothyroidism. Two children during the study period had a TSH above the local reference range but below 10 and a normal fT4. The parents declined a repeat blood test within 1–5 days as recommended in updated guidelines. They both have received a repeat serum blood test within four months and the results remain marginally abnormal. No child tested received a new diagnosis of thyroid disorder. There was no documented evidence that parents were offered information on thyroid disorders and how to minimise the stress from blood tests. As per the updated guidance 2/6 infants had their thyroid status checked at 4–6 months. One infant was 3 weeks old at the time of the study. In three infants there was no documentation of the offer, 2/3 infants have not been offered a face a face consultation in the community due to COVID-19. In children above the age of one, 27% did not have their thyroid surveillance within 15 months compared to 3% in 2015. Four parents declined the test due to concerns around attending a health centre during the COVID-19 pandemic. Two young people declined the test due to needle phobia (similar to the cohort in 2015). Anecdotally it was evident that most children had an upward BMI trend, a delayed offer for hearing and vision assessments. <h3>Conclusions</h3> This audit highlights the impact of the COVID-19 pandemic on the thyroid surveillance offer to children and young people with Down syndrome. We must be proactive to support parents in making appropriate health choices by providing the relevant health information and reassurance about attending health centres during a pandemic, in keeping with the government guidance.

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