About a third of people who have had a stroke have aphasia, making it difficult to speak, understand, read and write.
There is evidence that people can continue to improve their language ability for several years. However, it is difficult to provide continued treatment with the intensity required to support improvement because of limited speech and language therapy resources. Computer software may offer the opportunity for individuals with speech and language difficulties to continue independent language practice. Several small studies that have been conducted suggest independent use of computer software for word finding improvement can be beneficial. However, their effectiveness has yet to be demonstrated through larger and more rigorous research designs. Additionally, there has been no investigation into the costs of providing long term word finding therapy using a self managed computer therapy model.
The purpose of the CACTUS study was to:
- Pilot the feasibility of conducting a full randomised controlled trial of the cost effectiveness of self managed computer therapy in the long term post stroke.
- Evaluate the feasibility of delivering long term intervention using a model of self managed computer therapy.
- Investigate the potential effect of self managed computer therapy on word finding ability.
- Investigate the potential cost effectiveness of the treatment and requirements for conducting cost effectiveness analysis.
- Evaluate the acceptability of this model of speech and language therapy to participants and their carers’.
New model of intervention piloted
The treatment group received 5 months of self managed word finding therapy with the Step by Step computer program. The Step-by-Step model of delivering therapy was followed (Steps Consulting Ltd). This includes:
- Light touch input from a Speech and Language Therapist to tailor computer therapy exercises from the Step-by-Step program appropriately.
- Self managed practice of therapy exercises using the Step by Step computer program
- Support from a volunteer for computer use and carryover of new words into everyday functional situations
(Palmer & Mortley, 2011)
The control group continued to participate in any usual language stimulation activities such as communication support groups, and daily reading, writing, speaking and listening activities.
Both groups were assessed on clinical outcomes when they were recruited, after 5 months and after 8 months. The primary outcome measure was the number of words the participants were able to name correctly. Other language domains were also measured for change. The resources used (e.g. GP appointments, prescriptions) were recorded in diaries and the EQ5D (a tool which identifies a person’s views about their quality of life) was performed at each time point for both groups. Treated participants and their carers’ were interviewed about their experiences of this treatment model.
People with aphasia and their carer's have demonstrated benefit from the applied research project itself. The quantitative results of the pilot study shows the difference in percentage change from baseline at 5 months between groups for treated words was 19.8% (95%CI: 4.4 to 35.2; p=0.014) in favour of the treatment group. This equates to 8 individuals having learned to say more as a result of the treatment. The qualitative impact for the patients is best described using their own quotes from interview conducted with them following the treatment:
Being able to say more
'he were beginning to be able to say each one as picture come up. He could say it. He could really do it.'
'She's had her stroke 30 years and she's never strung a sentence together. It was quite nice when she said 'what have you been doing?'
'her confidence is more and she can say things without being frightened of saying the wrong thing'
Providing a joint activity
'it just gave us something to do to sit down together and we could laugh at things if he was stumbling on words we used to have a giggle and say how well he'd done'
Freeing up carer time
'a lot of the time P would sit and do it himself and I didn't have to be stood by him. You know I could get on with something else'
Involvement in the PPI activity also had an impact on the members:
'we do have a group which we have affectionately called the A team, the aphasia team… we do meet regularly [the group members started to meet independently in between research meetings] because it does assist in the development of the sufferers because they can speak to one another, they can converse with one another while the carers can talk about other things…and that helps very much in the broad aspect of the condition'
'definitely get involved…I mean it has been so beneficial for us to meet up with other people who're…in a similar situation and the benefits that gives as well as helping other people in the future…it's been great'
Most recently updated January 2013
From the cost effectiveness data collected in the pilot study we would expect this approach to self managed aphasia therapy with a computer and volunteer support to offer good value for money. This data provide early indications of cost effectiveness, which need to be confirmed in a fully powered RCT.
Changes in practice and organisational impact
Through work with the voluntary organisations the project has had an impact on the organisations and a change in their practice by increasing the numbers of volunteers with experience in helping people with communication difficulties that they have access to, increasing their capacity.
Through a recent event held to feedback the results of the applied research project to all participants and collaborators, leaders of the voluntary organisation 'Speakability' attended to learn about the approach we used in our project and the impact it had on the participants in the project. This has led to a meeting of the organisation leaders, volunteers and the chief investigator of the research project in January 2012 to discuss sustainable methods of implementing the service evaluated for their members with aphasia.
The next steps for the project in years 4 and 5 include working with local voluntary organisations and local speech therapy departments to identify and overcome barriers to implementing this self managed service long term and developing workable models of NHS services and voluntary organisations working in partnership to continue supporting the long term self managed approach to long term aphasia treatment. Central to this work will be to enable the voluntary organisations to support the volunteers we trained in this project to assist people using the computer treatment. The first step will be working with the local voluntary organisations and the volunteers to provide continued support to those who used the computer treatment during the project and wish to continue.
Clinical implications and further research
This pilot study indicates that independent practice with a computer and volunteer support has potential to be a feasible, clinically and cost effective method of providing word finding therapy for individuals with aphasia in the long term post stroke. A full randomised controlled trial now needs to be conducted to provide robust evidence of this effect.