Clinician Awareness of Stickler Syndromes Among Australian Allied Health Care Professionals

Alexis Ceecee Britten-Jones; Lauren N Ayton; Kelley Graydon; Jessica O Boyce; Ruth Braden; Rosie Dawkins; Kwang Meng Cham; Stickler Syndrome Awareness Study Group

doi:10.2147/JMDH.S454428

Clinician Awareness of Stickler Syndromes Among Australian Allied Health Care Professionals

J Multidiscip Healthc. 2024 Apr 22:17:1755-1768. doi: 10.2147/JMDH.S454428. eCollection 2024.

Authors

Alexis Ceecee Britten-Jones^{1

2

3}, Lauren N Ayton^{1

2

3}, Kelley Graydon⁴, Jessica O Boyce⁴, Ruth Braden⁴, Rosie Dawkins^#^{2

3}, Kwang Meng Cham^#¹; Stickler Syndrome Awareness Study Group

Affiliations

¹ Department of Optometry and Vision Sciences, University of Melbourne, Melbourne, Victoria, Australia.
² Department of Surgery (Ophthalmology), University of Melbourne, Melbourne, Victoria, Australia.
³ Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, Melbourne, Victoria, Australia.
⁴ Department of Audiology and Speech Pathology, University of Melbourne, Melbourne, Victoria, Australia.

^# Contributed equally.

Abstract

Purpose: 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: Stickler Syndrome; cleft palate; clinical education; hearing loss; high myopia; syndromic conditions; vitreous anomalies.

Grants and funding

Perth Eye Foundation Grant (RD). University of Melbourne Postdoctoral Research Fellowship (ACBJ). National Health and Medical Research Council Investigator grant (GNT#1195713) and University of Melbourne Driving Research Momentum Fellowship (LNA). The Centre for Eye Research Australia receives operational infrastructure support from the Victorian State government.