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Patient reported outcome measurement in aphasia

 

Research TeamKate Swinburn (and at different stages)
Sally McVicker - Connect
Madeline Cruice - City Uni
Lesley Smith - Oxford Brookes
Suzanne Beeke - UCL
Wendy Best - UCL
Joanna Sweeney - UCL MSc student
Kate Gander - UCL MSc student
Cathy Price - Wellcome Trust Centre for NeuroImaging
FunderThe Tavistock Trust for Aphasia
Summary

The aim of this project is develop, and validate a short tool that could capture the consequence and significance of acquiring and living with aphasia from the perspective of the person with aphasia. Having developed a validated tool, the secondary aim is to use it to set up studies to i. explore the relationship between the professional and patient perspectives of aphasia ii. support the exploration of the nature of 'recovery'; what does it mean to people with aphasia? what contributes to it in relation to the locus of intervention or neuroanatomical considerations.

A tool has been developed (the Aphasia Impact Questionnaire – the AIQ). It has been psychometrically tested. The tool was used with over 170 people with aphasia; 30 used the AIQ and the BOSS-CD, 140 used the AIQ once and 90 used it before and after intervention from Connect - a community based voluntary sector organisation. 10 people were sampled and took part in semi structured qualitative interviews to establish the acceptability and accessibility of the AIQ (including in comparison to the BOSS-CD).

The statistical tests showed it was valid, measuring what it claimed to measure in terms of the domains within it and in comparison with a gold standard aphasia assessment. (So the AIQ demonstrated good concurrent validity in all 3 domains in relation to the BOSS-CD, the tool showed statistically significant internal consistency -Cronbach's α btw 0.79-0.92 and was sensitive to changes seen between the before and after measurements taken. Qualitative interviewing indicated that people with aphasia really liked the assessment and actually saw the process of administration as a supportive conversation rather than an assessment. Work is progressing to further validate the AIQ. Funding is being sought to compare AIQ data with impairment data (through administration of the Comprehensive Aphasia Test), information relating to conversation and neuroanatomical lesion site information.

Key publications

Swinburn K. (2013). The Aphasia Impact Questionnaire Connect Press.

Cruice, M., & Swinburn, K. (2012). Exploring change: Perspectives of individuals accessing and contributing to peer-led services. Poster presented at the 15th International Aphasia Rehabilitation Conference, 8-10 October 2012, Melbourne, Australia.

Swinburn, K., McVicker S., Cruice M. (2012). Measuring outcomes in community services: patient reported outcome measurement for people with aphasia. International Journal of Stroke Research. Vol 7 (Supplement 2) Dec 2012 1-79.