Scientific title:
Developing an evidence-based patient-reported outcome measure (PROM) of post-stroke communication impairments
University College London
Principal investigator:
Kate Ledingham
Grant value:
Research ID:
SA PGF 23\100011
Research area:
Start date:
Monday 4 September 2023
End date:
Friday 28 August 2026
3 years
Year awarded:

Why is this research needed?

Clinicians working with people who have aphasia often measure their speech and language skills using a set of standardised tasks.  A common example of an assessment like this is the Comprehensive Aphasia Test (CAT).

One of the tasks involves being shown a picture of an everyday object like a table and saying what it is called. If you have trouble with this task, that could be for many different reasons, some of which have nothing to do with language. For example:

  • You don’t know what it’s called
  • You know what it’s called but can’t say the word
  • You know what it’s called but say the wrong word
  • You can’t see the picture clearly
  • You forgot the question

While the Comprehensive Aphasia Test is good at measuring how much difficulty someone is having with a speech and language task, it is not able to tell us what part of the task is causing the difficulty. To provide the right kind of support, it’s important to ask people with aphasia about the kind of difficulties they are experiencing when using language.

Kate says, “As a speech and language therapy assistant I saw the tremendous and sudden impact of being unable to communicate effectively and the massive emotional journey that patients and their families went on. I was also fascinated by what was happening in the brain, why some patients’ symptoms were so different from others, and how to best help these patients when the evidence-base for many speech and language therapy interventions seemed uncertain.”

Kate is a member of PLORAS, a team of people who research language recovery after stroke. The PLORAS team use a patient-reported outcome measure (PROM) to assess people’s own experience of their aphasia. But it has some limitations. For example, the PROM doesn’t record whether someone is having difficulty finding the right word to say, or with pronouncing it in a way that other people can understand.

Working with a small group of people with aphasia and SLTs, Kate created a new version of the PROM, which addresses the limitations of the existing version.

Kate now wants to test this new version to understand whether it is usable by and useful for people with different experiences of aphasia, and how scores on the PROM relate to scores on traditional task-based assessments.

What are the aims of this research?

During her PhD, Kate hopes to build an evidence base for the new PROM that will lead to it being used not just by her own team, but in clinics around the UK. To do this, she will work with both people with aphasia and speech and language therapists.

First, she’ll ask 100 people with aphasia to do the new PROM, the Comprehensive Aphasia test, and a feedback questionnaire to understand if the new PROM is working well for the people who trial it. She’ll also ask speech and language therapists to use the PROM to understand how easy-to-use and useful they find it.

Next, she’ll look at whether there’s a good relationship between what people share about their experiences in the PROM and how they do on different parts of the Comprehensive Aphasia Test. She hopes to use what people report in the PROM to understand what might be helpful for speech and language therapists to include when giving someone a summary of their results on the Comprehensive Aphasia Test. She will also look at which people do and do not find the new PROM useful, depending on when and where in the brain their stroke happened, what their aphasia is like, and other factors like whether they’re experiencing fatigue or memory difficulties.

Lastly, Kate will use what she’s learned in the earlier stages to create a new PROM that is designed to make it easier for people to share their experiences of aphasia. She’ll then test it with focus groups to iron out problems with content, style and structure.

What is the benefit of this research?

Kate’s Postgraduate Fellowship will build the evidence base for the new PROM. If she’s successful in developing a version that works for different groups of people with aphasia, and follow-up trials go well, the PROM will empower people with aphasia to share their experiences with clinicians. Kate’s work will also provide clinicians with a better understanding of how to convey the results of the Comprehensive Aphasia Test in a way that’s meaningful to the person they’re working with, and provide a framework for clinicians and patients to set language recovery goals together.

Kate says, “Accurate assessment is vital, both for clinicians and to improve the evidence base for therapeutic interventions. I hope that the new PROM will enable speech and language therapists and researchers to incorporate stroke survivors’ understanding of their own language abilities into their work.”

What PSP priorities does this research link to?

From 2019 to 2021, we worked with the James Lind Alliance on the Stroke Priority Setting Partnership (PSP). During the PSP process, we collaborated with people with lived experience of stroke and stroke professionals to find out what they thought were the top priorities in stroke research. From this, we identified the top ten priorities in two areas: prevention, diagnosis and short-term care, and rehabilitation and long-term care.

Now, when researchers apply to us for funding, we require that their work addresses at least one of these priorities, or a priority from the Childhood Neurological Disabilities PSP Top 10 as it relates to childhood stroke.

Kate’s project addresses the following priorities from the Stroke PSP:

  • Rehabilitation and long-term care 1: Mental and emotional (psychological) difficulties
  • Rehabilitation and long-term care 3: Communication difficulties

Meet the researcher

Kate’s background is in psychology and communication science. She worked as a speech and language therapy assistant for five years before going into research. Since 2016, she’s been a research assistant in the PLORAS team. Her PhD supervisors are Professor Cathy Price, the Chief Investigator of the PLORAS team, and Dr Suzanne Beeke, both at University College London.

After her PhD, Kate plans to continue in stroke research, working with stroke survivors to identify new ways to help with the communication difficulties they are facing.