Making quality of life part of the aphasia discussion • City, University of London

The researchers:

Professor Katerina Hilari (Principal Investigator)
Professor Jane Marshall (Co-Investigator)

This is Impact: Improving the Outcomes of Patients with Aphasia

In summary

Imagine waking up in hospital and finding that you can no longer talk. You also struggle to understand what others are saying, and reading and writing are difficult. These problems are faced by about 30,000 people in the UK each year who get aphasia following a stroke. Aphasia has a huge impact on a person’s quality of life. Friendships suffer, work may become impossible, and many of those affected feel lonely and depressed. Indeed one study found the effects of aphasia were more devastating than in 59 other medical conditions, including cancer and Alzheimer’s Disease.

Researchers at City, University of London have been investigating aphasia for over 20 years. This case study describes some of their work. It describes how Professor Hilari is making it possible to address quality of life in aphasia rehabilitation and how Professor Marshall is using digital technology to support the recovery of language and communication.

What did we explore and how?

Over 300,000 people in the UK are living with aphasia and we can expect this number to grow as our population ages. This language disorder can occur after any form of brain damage, but the most common cause is stroke. Despite their problems, people with aphasia are often excluded from studies of the general stroke population, meaning their problems are not fully understood. We are also not sure about which forms of therapy can help.

Professor Hilari and her team have explored the impact of aphasia on people’s lives. They showed what factors affect quality of life and need to be addressed in rehabilitation. Professor Hilari also developed a new questionnaire called the Stroke and Aphasia Quality of Life scale (SAQOL-39g). This uses simple language and a clear format, so it is easy for people with aphasia to use. Her research showed the measure gives reliable scores. It is sensitive to the problems of aphasia and shows if these change over time.

Professor Marshall’s research has focused on rehabilitation. She worked with City’s Centre for Human-Computer Interaction Design to develop new technologies for people with aphasia and to re-purpose old ones. Together they created EVA Park. This is a virtual reality island, where people with aphasia can meet online to receive therapy or social support. The team also ran the CommuniCATE project. This used familiar technologies, such as text-to-speech conversion and Skype, to augment therapies for reading, writing and conversation.

Aphasia is devastating. One day you’re fine. Then everything changes. You can’t speak or remember language. You can’t express yourself. It affects your work, it affects your relationships. And it often comes with other disabilities.

– Professor Marshall

Benefits and influence of this research

SAQOL-39g has made it easier to measure quality of life in people with aphasia. EVA Park and CommuniCATE have helped people get back some of the life they lost.

SAQOL-39g has become the most commonly used tool across the world for measuring quality of life in aphasia. It has helped to ensure that quality of life is now typically assessed, both in research and clinical practice. For example, a 2005 survey found that only 2% of aphasia therapists in the USA assessed quality of life. Whereas, ten years later, in a comparable international survey this had jumped to 66%, with SAQOL-39g being the most widely used measure. SAQOL-39g has been translated into 18 languages and has been recommended for use in all aphasia rehabilitation studies.

EVA Park has been used in three City studies of aphasia therapy. People with aphasia were overwhelmingly positive about the experience of using EVA Park, and there were some significant changes on measures of communication and language. So far, we have shared EVA Park with 30 stroke and aphasia services across the UK, so they can use it as part of their treatments.

CommuniCATE therapies brought about big shifts in peoples’ reading, writing and speaking abilities. A stand-out example comes from one user who said it helped them to read a book for the first time since their stroke. We have trained over 500 practitioners and students in the CommuniCATE therapies, and they have been replicated in UK NHS trusts and overseas.

City research has made quality of life a vital part of the aphasia discussion and our therapy technologies help people with aphasia regain some of the losses from this devastating condition.