Clinician Awareness of Stickler Syndromes Among Australian Allied Health Care Professionals

Figures & data

Table 1 Participant Demographics

Characteristic	Participant Demographics, n (%), from n=180
Age (years)
18–24	8 (4%)
25–34	96 (53%)
35–44	45 (25%)
45–54	20 (11%)
Over 55	11 (6%)
Gender
Female	142 (79%)
Male	35 (19%)
Other	2 (1%)
Prefer not to say	1 (1%)
Profession
Audiologists	45 (25%)
Optometrists	69 (38%)
Orthoptists	28 (16%)
Physiotherapists	6 (3%)
Speech pathologists	31 (17%)
Years of clinical experience
Less than 3	36 (20%)
4–10	66 (37%)
10–20	45 (25%)
Over 20	33 (18%)
Main practice location
Metro	163 (91%)
Regional	17 (9%)
Rural	0 (0%)
Type of patient care
Paediatrics only	26 (14%)
Adults only	35 (19%)
Both	119 (66%)

Figure 1 Frequency of responses from participants within each discipline who correctly identified (A) signs associated with Stickler Syndromes and (B) management options for Stickler Syndromes. Responses from n=6 physiotherapists were excluded from descriptive summaries. Abbreviations: CLs, contact lenses.

Figure 2 Frequency of participant responses on whether they would consider Stickler Syndromes as a differential diagnosis for individuals presenting with associated clinical features (from n=173 respondents).

Figure 3 Clinicians’ self-reported level of confidence in managing patients with Stickler Syndromes and participating in multidisciplinary care (from n=160 respondents). Responses from n=6 physiotherapists were excluded from the descriptive summaries.

Figure 4 Frequency of participant responses on health professionals who would be involved in the primary management of Stickler Syndromes (from n=172 respondents).

Table 2 Suggestions for Improving the Multidisciplinary Management of Stickler Syndrome Based on Open Text Responses

Source of Education	Potential Strategies
Continuing professional development (CPD, with a focus on multidisciplinary care)	Multidisciplinary CPD sessions (eg, seminars, webinars) jointly hosted by different professional bodies to promote cross-disciplinary information exchange and learning. Interprofessional conferences and workshops, or joint observational sessions, to facilitate interdisciplinary networking.
Improving accessible clinical resources	Resources for both clinicians and patients that can be easily accessed in clinical settings; for example, patient support or professional organization websites, in-clinic pamphlets, and chairside references. Open access to latest diagnostic criteria and guidelines for discipline specific management. Guidelines to assist with interdisciplinary referrals, including information to support co-management. Access to research articles and case studies and their dissemination in professional publications.
Promoting advocacy and public awareness	Public awareness initiatives, social media engagement (eg, podcasts), marketing campaigns, awareness days on Stickler Syndrome and other rare diseases, with additional resources directing people to websites containing the relevant information. Increased advocacy of Stickler Syndrome and other rare diseases by national and international professional bodies. Posters or information about Stickler Syndrome in community and private clinics. Dissemination of research findings, such as surveys, case reports, and research studies in professional articles or magazines for practicing health practitioners.
Integrating into tertiary training, including enhancing clinical exposure and patient experience	Introduction of rare syndromes like Stickler Syndrome in tertiary education and during university clinical training, with practical examples. Student placements in multidisciplinary clinics to facilitate knowledge exposure and direct experience working with patients with Stickler Syndrome in practice. Interprofessional education and networking as a part of university clinical education to enhance knowledge and integrated care. Case-based learning in rare and complex syndromes. Consumer engagement panels and activities that incorporate patient perspectives into clinician education programs.

Abbreviation: CPD, Continuing professional development.