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WP5 Deliverable D5.1: Report on education achievements and needs of children born with a congenital anomaly in selected European countries with predictions of the number of children with special education needs

Authors: Judith Rankin, Svetlana Glinianaia, Theophile Bigirumuramei, Annarita Armaroli, Anna Pierini, Maria Loane, Joachim Tan, Joan Morris, Sue Jordan, Mika Gissler, Stine Kjaer Urhoj

Contributing participants and partners (in Beneficiary numerical order): Joachim Tan, Joan Morris, Jo Brigden, Hannah Evans (SGUL), Jenny Kurinczuk (CAROBB), Diana Wellesley (WANDA), Elizabeth Draper (EMSYCAR), Maria Loane, Joanne Given (UU), Ester Garne, Stine Kjaer Urhoj (RSD), Svetlana Glinianaia, Judith Rankin (UNEW), Nicola Miller (NorCAS), Amanda Neville, Gianni Astolfi, Aurora Puccini, Annarita Armaroli (UNIFE), Anna Pierini, Lorena Mezzasalma (CNR-IFC), David Tucker, Anna Rawlings, Daniel Thayer, Ieuan Scanlon, Sue Jordan (PHW NHS, SU), Mika Gissler, Anna Heino, Sonja Kiuru-Kuhlefelt, Tuuli Puroharju (THL)

Lay Summary:

This part of the EUROlinkCAT project analysed the education achievements of school age children (at age 11 and 16 years) with a range of different congenital anomalies (also known as birth defects) compared to children of the same age from the general population in England, Wales and Finland. This study also investigated the allocation of special educational support among these children and predicted this need to 2030 in England, Wales and Denmark.

Participating European registries of congenital anomalies from Denmark, Finland, Wales and four English regions successfully linked their data on children born with congenital anomalies to their education data and compared them to children of the same age from the general population or reference children of the same age and from the same geographic area.

We found that many children with congenital anomalies achieved the expected academic levels. However, they were more likely to do less well than children without congenital anomalies and a greater proportion of children needed special education support. This was also true for children with only “isolated” anomalies such as specific congenital heart defects or cleft lip. This report shows that children with congenital anomalies have additional educational needs and it is important to address and plan for these.

Click here for a PDF of the report