Objective: To investigate the awareness and knowledge of speech and language therapists (SLTs) on Huntington’s disease (HD) worldwide, and to explore the clinical practice and related concerns of professionals, working with this rare movement disorder.

Background: HD is a devastating disease with a multi-organ involvement. Referral to SLT for the treatment of speech and swallowing disturbances is recommended since the early stage of HD.

Method: An online survey has been distributed to SLTs from 34 different countries. The survey was composed by 3 main parts. The first section was designed to collect information about the country, the education, and the area of working experience. The second section investigated the knowledge of SLTs on HD. The last section was intended to SLTs who treated HD patients, and aimed to collect the numbers of patients encountered, the disease stage and the collaborations within the multidisciplinary team.

Results: 858 SLTs responded to the survey. The mean working experience was 10.87 years (SD=9.82; range 0.4-50). 639 SLTs (74.5%) had previous experience with treating neurological diseases. 815 respondents (95%) have heard about HD and were aware mainly of the swallowing and speech difficulties occurring in the disease. The 43.3% of the sample (353 SLTs) has treated HD patients during own working experience, of which 230 SLTs have treated at least 1-5 patients, 52 SLTs have treated 6-10 patients, 25 SLTs have treated 11-19 patients, and 44 SLTs >20 patients. The SLT referral was mainly for dysphagia (91.7%), communication difficulties (55%), and for dysarthria (50.7%). The HD population treated was mostly in the early-middle stage (59%) and middle-late stage (75%). The majority of SLTs working with HD patients (91%) collaborated within a multidisciplinary team. The lack of evidence and professional knowledge were the main concerns in treating this disease. The need of specialized centers and interdisciplinary collaboration have been also highlighted in order to maintain the QoL of this population.

Conclusion: HD is mainly treated by a multidisciplinary team, in which dysphagia is the main concern for treatment by SLT. Educational activities on HD should be conducted to the team members in order to increase the knowledge on this rare disease.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/a-global-survey-on-speech-language-therapists-awareness-to-huntingtons-disease/