A collaborative study between The University of Western Australia, Perth Children’s Hospital, The Kids Research Institute Australia and advocacy and support group Down Syndrome WA, has identified the top priorities, according to patients and carers, for clinical care and research for children with the genetic condition.
Published in Archives of Childhood Disease and released just in time for World Down Syndrome Day on Friday 21 March, the research highlights the importance of patient and family voices in determining healthcare priorities.
The study gathered input from 215 patients and carers, as well as 191 clinicians, through online surveys and an in-person consensus meeting to identify the top 10 priorities for clinical care and research from an initial 565 ideas.
Lead author Professor Britta Regli-von Ungern-Sternberg, Chair of Paediatric Anaesthesia and Director of the Institute for Paediatric Perioperative Excellence at UWA and PCH, said the highest-ranked priority was to develop a gold standard model of care including screening health checks across all levels of care.
“The second was around improving sleep quality, addressing issues such as obstructive sleep apnoea, snoring, breathing problems and circadian rhythm,” Professor Regli-von Ungern-Sternberg said. She also co-leads the Perioperative Care Program and Perioperative Medicine Team at The Kids Research Institute Australia.
