Patients prioritize standardized care for Down Syndrome

A new study has highlighted the priorities for clinical care and research for children with Down Syndrome, based on input from patients and families. The research involved collaborations between several institutions in Australia, including The University of Western Australia and Perth Children’s Hospital. It aimed to capture the voices of those directly impacted by the condition. The study's findings were published in the Archives of Childhood Disease, coinciding with World Down Syndrome Day on March 21. Researchers collected feedback from 215 patients and their caregivers, along with insights from 191 clinicians. They started with 565 ideas and narrowed them down to the top 10 priorities for care and research. Professor Britta Regli-von Ungern-Sternberg, the lead author, stated that the highest priority is to create a standard model of care for health screenings. The second priority focuses on improving sleep quality, addressing problems like sleep apnea and breathing issues. Other important areas include managing respiratory health and ensuring safer anesthesia for those with Down Syndrome. The study revealed differing priorities between families and clinicians. Families emphasized the need for better training for medical staff, while clinicians were more focused on specific clinical challenges. Dr. Ellen Taylor from Perth Children's Hospital noted the importance of having patients and families involved in setting these priorities for care and research. With about 13,500 Australians living with Down Syndrome, many of whom are under 20, the study advocates for a coordinated approach to care that prioritizes children's needs. Associate Professor Helen Wilcox pointed out the importance of integrated care models, which support individuals from childhood into adulthood. The results can also guide future research strategies for Down Syndrome.