1369 Preliminary report of healthcare status in a cohort of young children aged 1–5 years with down syndrome

BackgroundIreland is thought to have amongst the highest incidence of Down syndrome (DS) in the world. Children with DS have many healthcare needs and associated conditions. DS medical management guidelines have been developed to optimise the health of children with DS. A national Register was established in 2015 to define the incidence of DS in the Irish population and undertake prospective monitoring of health issues and healthcare utilisation.ObjectivesThe purpose of this study is to explore the health issues faced by young children with DS, both resolving and emergent.MethodsParents of children with DS aged between 1 to 5 years who were enrolled on the national DS Register were invited to complete a questionnaire. The questionnaire was self-administered, distributed to families by post between September 17th 2020 and January 28th 2021 and returned by post or email. It contained 15 questions including questions about new diagnoses (medical or surgical), resolved diagnoses, feeding issues, annual screening and hospital admissions in the preceding 12-month period and current parental perception of their child’s health. Ethical approval was obtained for this study.ResultsA total of 62 questionnaires have been distributed and 28 have been returned to date. Response rate was 45%. Mean age was 4 years (range 1–5 years) with female being 16/28 (57%). The majority of parents who replied rated their child’s health as excellent or very good (18/28 or 64%). In the preceding 12 months: at least one admission to hospital was required by 43%;a new condition was diagnosed in 12/27 (44%);a pre-existing condition had resolved in 11/23 (48%) such as improved hearing due to grommets or hearing aids and reduced aspiration due to peg insertion and improvement in respiratory issues possibly due to reduced social contact. Some of the reasons for admission were respiratory problems such as croup, bronchiolitis, aspiration pneumonia and also ear infections. Feeding issues were reported in 11/28 (39%) among them difficulty with solids, food aversions, sensory issues choking/aspiration and only one stated that their child had a Videofluroscopy in the last 12 months. Annual blood monitoring was undertaken in 27 out of the 28 patients and thyroid monitoring identified as being taken in 22/28 (78%) and coeliac as 14/28 (50%). The majority expressed concerns 21/28 (75%) regarding health issues, long term outcomes and service access. Services were self-funded by 12/28 (43%) of parents due to long waiting time for public services or due to low frequency of appointments.ConclusionThis study demonstrated high levels of parental satisfaction with the health of their children with DS. Despite the SARS- CoV-2 pandemic a large number required hospitalisation. Almost half of the parents self-funded certain services although this may have been influenced by the international pandemic with restricted access to healthcare. These data will help inform healthcare service development and service provision for children with DS. Monitoring these issues over time will enhance our understanding of any underlying problems and improve the care we provide for children with Down syndrome and their families.