UsherKids Australia, together with leading researchers from the University of Melbourne, has recently published research investigating how aware relevant allied healthcare professionals are of the cause, common symptoms, and professionals who play a key role in the care of Usher syndrome. This research will help us provide further, targeted professional development to relevant healthcare workers so as to improve the care our families receive.

Please read below for a summary of the research findings:

Usher syndrome is a rare genetic condition that causes deaf-blindness, affecting approximately 1 in 6,000 people worldwide. To ensure the best care for those affected, a team of different healthcare professionals is needed. In this study, we aimed to find out how much healthcare clinicians, like audiologists, optometrists, and orthoptists, know about Usher syndrome.

To do this, we conducted an online survey targeting clinicians working in Australian university-affiliated clinics. The survey asked questions about what they knew about Usher syndrome, its symptoms, and which healthcare professionals were essential for managing the condition. Participants included 27 audiologists, 40 optometrists, and 7 orthoptists, with an average age of 37 and around 13 years of clinical experience.

We found that most of the clinicians knew that Usher syndrome was a genetic condition (86%) and that it affected hearing and vision (97%). However, their awareness of the balance problems sometimes associated with Usher syndrome was not as good. They also didn’t fully recognize the importance of certain healthcare professionals in managing the condition. For example, many didn’t realise the critical roles of speech pathologists, geneticists, and genetic counsellors. Furthermore, they were not entirely aware of specific care aspects related to their own discipline.

This highlights that healthcare clinicians need more education about Usher syndrome to provide better care. Improving their understanding of the balance issues and vision loss experienced by those with Usher syndrome is crucial. It is also essential to help them recognize the valuable roles of different healthcare professionals in multidisciplinary care. By increasing awareness and knowledge, healthcare clinicians can support individuals with Usher syndrome and their families more effectively. Future research should focus on developing effective educational tools to enhance awareness among healthcare professionals and improve the quality of care for those living with Usher syndrome.

To read the full publication, visit Awareness of Usher Syndrome and the Need for Multidisciplinary Care: A Cross-Occupational Survey of Allied Health Clinicians

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