Published: Friday 5 December 2014
Ms Patchick is a research psychologist at the University of Manchester. The Stroke Association is funding her doctoral studies (a PhD) into developing a patient-centred tool for measuring the impact of cognitive problems that can arise after having a stroke.
Cognitive problems are common after stroke and include issues with:
- attention and concentration
- hemispatial neglect
- executive dysfunction - which can be thought of as problems with the high-level cognitive processes that control other cognitive processes
Many stroke survivors describe their difficulty in getting others to understand the nature of their cognitive problems, which may not be readily apparent and remain 'hidden' or 'invisible'.
The research papers cites the National Clinical Guideline for Stroke for England and Wales, which recommends treating cognitive problems comprehensively, but asserts that more research is required to inform best-practice interventions. The paper also cites evidence that stroke survivors, caregivers and health professionals collectively agree that improving cognition is the number one research priority for life after stroke. Having appropriate outcome measures to assess the effectiveness of interventions is a pre-requisite for carrying out high-quality research.
Ms Patchick’s research aims to develop a patient-centred, patient-reported outcome measure (known as a ‘PROM’) for people with cognitive problems after having a stroke. This is desperately needed, as although PROMs exist to measure the impact of symptoms after stroke, there are currently none that comprehensively address cognitive problems, and which should be used in cognitive rehabilitation research trials. Furthermore, patients with cognitive problems are often routinely excluded from the development of PROMs, due to the complexity of their difficulties.
The published research study involved structured interviews with 16 stroke survivors whose symptoms covered a range of cognitive problems. Ms. Patchick and her colleagues used a technique called ‘thematic analysis’ to capture important information provided during these interviews, and sort it in a way that allowed them to see what views were commonly expressed, and a priority to these stroke survivors.
The findings from this study suggest desirable qualities of a patient-centred PROM for use in cognitive rehabilitation, research trials.
- include items relating to the perceived impact of a comprehensive range of cognitive skills rather than limitations in activities. The impact should be measured in terms of the amount of ‘bother’ or ‘frustration’ they cause – the usual approach is to measure how often a problem occurs but a problem could occur rarely but have high impact.
- address the specific impact of a broad range of cognitive problems on mood, self-identity and social participation
- be accessible: including wording and items that respondents endorse and understand
- include items that explore the perceived impact on carers.
Ms Patchick is now leading the development of a PROM that fulfils these criteria and which is undergoing testing for its usefulness and validity. If found appropriate, it is hoped that this tool could be made freely available to researchers, and could have benefit for clinical use as well as within research trials.
We look forward to seeing more exciting developments from her work and will continue to support outstanding candidates like Ms Patchick to further their careers in stroke research through our Postgraduate Fellowships, our Postdoctoral Fellowships, and our new Lectureship Programme to support the stroke leaders of tomorrow.