SUMMARY Speech and language therapy has an important role in the management of Huntington’s disease (HD). Swallowing difficulties affect most individuals with HD. Throughout the disease process these difficulties require management with timely and effective therapeutic intervention. Currently there are no European guidelines for the assessment and management of swallowing impairments in HD. The European Huntington’s Disease Network (EHDN) Standards of Care Speech and Language Therapy Working Group has brought together expert speech and language therapists from across Europe to produce guidelines to improve the management of swallowing disorders for individuals with Huntington’s disease. The guidelines were developed with the aim of promoting timely and appropriate assessment of the swallowing process and focused management throughout all stages of the disease. Literature was systematically searched in an attempt to ensure that the recommendations are based on sound evidence. Where evidence was lacking, specific guidance is based on expert consensus. The provision of care varies widely between countries in Europe and the implementation of those guidelines should improve the quality of care delivered to individuals with HD.

Background Progressive ataxias frequently lead to speech disorders and consequently impact on communication participation and psychosocial wellbeing. Whilst recent studies demonstrate the potential for improvements in these areas, these treatments generally require intensive input which can reduce acceptability of the approach. A new model of care—ClearSpeechTogether—is proposed which maximises treatment intensity whilst minimising demands on clinician. This study aimed to establish feasibility and accessibility of this approach and at the same time determine the potential benefits and adverse effects on people with progressive ataxias. Method This feasibility study targeted people with progressive ataxia and mild-moderate speech and gross motor impairment. ClearSpeechTogether consisted of four individual sessions over 2 weeks followed by 20 patient-led group sessions over 4 weeks. All sessions were provided online. Quantitative and qualitative data were collected for evaluation. Results Nine participants completed treatment. Feasibility and acceptability were high and no adverse effects were reported. Statistical tests found significantly reduced vocal strain, improved reading intelligibility and increased participation and confidence. Participant interviews highlighted the value of group support internalisation of speech strategies and psycho-social wellbeing. Discussion ClearSpeechTogether presented a feasible, acceptable intervention for a small cohort of people with progressive ataxia. It matched or exceeded the outcomes previously reported following individual therapy. Particularly notable was the fact that this could be achieved through patient led practice without the presence of a clinician. Pending confirmation of our results by larger, controlled trials, ClearSpeechTogether could represent an effective approach to manage speech problems in ataxia.

BackgroundProgressive ataxias frequently lead to speech disorders and consequently impact on communication participation and psychosocial wellbeing. Whilst recent studies demonstrate the potential for improvements in these areas, these treatments generally require intensive input which can reduce acceptability of the approach.A new model of care – ClearSpeechTogether – is proposed which maximises treatment intensity whilst minimising demands on clinician. This study aimed to establish feasibility and accessibility of this approach and at the same time determine the potential benefits and adverse effects on people with progressive ataxias.MethodThe study targeted people with progressive ataxia and mild-moderate speech and gross motor impairment. ClearSpeechTogether consisted of four individual sessions over two weeks followed by 20 patient-led group sessions over four weeks. All sessions were provided online. Quantitative and qualitative data were collected for evaluation.ResultsNine participants completed treatment. Feasibility and acceptability were high and no adverse effects were reported. Statistical tests found significantly reduced vocal strain, improved intelligibility for reading, and increased participation and confidence. Participant interviews highlighted the value of group support, from psychosocial perspectives and in supporting speech strategy internalisation and generalisation.DiscussionClearSpeechTogether presented an effective intervention in a small group of people with progressive ataxia. It matched or exceeded the outcomes previously reported for intensive, individual therapy while minimising clinician time demands. Furthermore, its unique peer led group intervention design appeared effective in addressing intractable psychosocial issues. ClearSpeechTogether is potentially cost-effective, providing intensive delivery with few clinician sessions, thus maximising the input available from health care providers.