Patients prioritize Down syndrome care in Western Australia

A recent study has discovered the most important care and research priorities for children with Down syndrome. This research was a collaboration between The University of Western Australia, Perth Children's Hospital, The Kids Research Institute Australia, and Down Syndrome WA. It is published in the Archives of Disease in Childhood and coincides with World Down Syndrome Day. The study included input from 215 patients and caregivers and 191 clinicians. They identified the top 10 priorities for clinical care and research from an initial list of 565 ideas. The lead author, Professor Britta Regli-von Ungern-Sternberg, noted that the highest priority is creating a standard care model that includes necessary health checks. Improving sleep quality is the second priority, which includes addressing issues like obstructive sleep apnea. Other priorities focus on managing health issues, including infections and chronic respiratory conditions. The study highlighted differences in priorities between families, who want more training for medical staff, and clinicians, who focus more on specific medical challenges. Dr. Ellen Taylor, a medical director at Perth Children's Hospital, emphasized that the study gives patients and caregivers a voice in determining care priorities. With about 13,500 Australians living with Down syndrome, many of whom are children, this research aims to improve care coordination and support for patients. Associate Professor Helen Wilcox pointed out the need for continuous care from childhood to adulthood. The findings can help shape future research strategies for children with Down syndrome and guide better healthcare practices.