Last year I put my name down to be involved in a participation study organised by Strathclyde University. It was looking specifically at the effectiveness of Lee Silverman Voice Technique (LSVT) in improving communication in people with Friedreich’s Ataxia.
Unfortunately, I was overwhelmed with work for the #SaveWILG campaign and had to pull out of my proposed involvement. I was delighted to receive an update on this research from Professor Anja Lowit who provided me with a summary of her findings. It makes for interesting reading, especially at a time when I am hyper aware of the progressive limitations of life with Friedreich’s Ataxia.
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A little background information to begin with:
LSVT was originally developed for people with Parkinson’s Disease, but there is some suggestion that it might also be beneficial for those with ataxia as well. We are trying to establish whether this is true by investigating whether the communication of people with Friedreich’s Ataxia improves from this treatment. In addition, we also want to look at their experiences of the treatment, e.g. whether it was too intensive or tiring.
Who is carrying out the research?
The research is being carried out by Mariam Mahmood, who is a qualified speech and language therapist and LSVT Practitioner. Mariam is also registered as an MPhil student at the University of Strathclyde. In addition, Prof Anja Lowit, who is Mariam’s supervisor, will be involved in some aspects of the research. Dr Anja Kuschmann, the second supervisor, will also have access to the research data and provide advice on the project.
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End of study report – lay summary
We performed a feasibility study of speech therapy for people with hereditary ataxia. The aim of the project was to evaluate whether therapy would result in improved communication, whether it had any negative side effects, and how people felt about treatment being delivered remotely with Skype.
The therapy consisted of 16 sessions (45-60 min duration), which were provided over Skype twice a week. Participants were asked to practice another 4 or 5 times a week in addition to these. The sessions focused on establishing a strong voice, first on long /a/ sounds, then in speech (short phrases building up to longer passages). We recorded participants twice before treatment, and twice afterwards, i.e. immediately at the end of therapy, and about 2 months later.
The outcomes of our study were very positive. We managed to recruit sufficient people in the timeframe we set ourselves, and nobody dropped out because of problems caused by the treatment. Therapy also did not negatively affect participants’ fatigue levels. All participants felt that treatment via Skype worked well, it reduced fatigue from travelling to clinic, and allowed those still in employment to participate more easily.
Our measures indicate that after therapy, participants’ voices sounded better and less strained, and they had more breath available to speak. Their intelligibility did not change much across the assessment sessions when unfamiliar judges listened to the recordings, but 13 of the 19 participants thought they sounded clearer or had to repeat themselves less often after treatment. In 7 cases, this was also commented on by friends or family. In addition, half of the participants reported that they had increased confidence or reduced anxiety when communicating. This had significant impact for some who were initially worried about continuing in their employment, or who had become socially isolated due to their communication problems, and who had those worries removed after treatment.
Our project is the largest study ever to be conducted on speech therapy for people with hereditary ataxia. It has demonstrated the value of treatment for this patient group, in particular the potential to improve their communication as well as quality of life. However, further research will be necessary to fine-tune the treatment approach to achieve better results for intelligibility.
