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Alexis Ceecee Britten-Jones,1– 3 Lauren N Ayton,1– 3 Kelley Graydon,4 Jessica O Boyce,4 Ruth Braden,4 Rosie Dawkins,2,3,* Kwang Meng Cham1,* On behalf of The Stickler Syndrome Awareness Study Group1Department of Optometry and Vision Sciences, University of Melbourne, Melbourne, Victoria, Australia; 2Department of Surgery (Ophthalmology), University of Melbourne, Melbourne, Victoria, Australia; 3Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, Melbourne, Victoria, Australia; 4Department of Audiology and Speech Pathology, University of Melbourne, Melbourne, Victoria, Australia*These authors contributed equally to this workCorrespondence: Alexis Ceecee Britten-Jones, Department of Optometry and Vision Sciences, Faculty of Medicine, Dentistry & Health Sciences, the University of Melbourne, Parkville, Victoria, 3010, Australia, Tel +61 3 8344 5980, Email ac.brittenjones@unimelb.edu.auPurpose: Stickler Syndromes are multisystem collagenopathies affecting 1 in 7500– 9000 individuals and are associated with craniofacial, ocular, auditory, and musculoskeletal complications. Prophylactic retinopexy treatment reduces the risk of retinal detachment, emphasising the need for early detection and multidisciplinary referral. This study evaluated knowledge and awareness of Stickler Syndromes among allied health professionals and their perceived needs for targeted education to improve multidisciplinary care.Methods: A cross-sectional survey was undertaken among audiologists, speech pathologists, optometrists, orthoptists, and physiotherapists in Australia. Survey questions included practitioner demographics, awareness and knowledge of Stickler Syndromes, confidence managing Stickler Syndromes, and perception of multidisciplinary care needs for Stickler Syndromes.Results: Of 180 healthcare professions who participated (79% female; 78% aged between 25 and 44 years), 55% indicated that they had heard of Stickler Syndrome, and 14% had directly worked with patients known to have Stickler Syndromes. Practitioners who had were either optometrists, orthoptists, or audiologists. The most recognised clinical sign of Stickler Syndromes was retinal detachment (selected by 66% of optometrists and orthoptists and 16% of other professions), but only 41% of optometrists and orthoptists (27% all respondents) selected cryopexy as a potential management strategy. Vitreous anomaly was recognised as a clinical feature by 20% of all respondents. Overall, 69% of allied health professionals did not feel confident managing Stickler Syndromes, and a similar number of practitioners (69%) indicated that they were willing to attend professional development courses for complex conditions such as Stickler Syndromes.Conclusion: This study provides meaningful insights on awareness and knowledge of Stickler Syndromes among allied healthcare professionals. Targeted clinician education, enhanced communication between healthcare entities, and multidisciplinary care programs can significantly improve the integrated care of Stickler Syndromes leading to better patient outcomes.Keywords: high myopia, vitreous anomalies, cleft palate, hearing loss, syndromic conditions, clinical education, Stickler Syndrome |
