and how were people with aphasia involved?
The AIQ-21 began life as the Disability Questionnaire; the final section of the Comprehensive Aphasia Test (Swinburn, Porter & Howard, 2004). The Disability Questionnaire is a tool designed to gain the perspective of the person with aphasia, to be used alongside the impairment sections of the Comprehensive Aphasia Test (language and cognitive screening). It was developed as part of a research project exploring the value of psychometric assessments in predicting aphasia recovery. The Disability Questionnaire was introduced to the study early in the aphasia recovery project, when a need was identified, to balance the professional perspective of aphasia with the lived experience of aphasia. Due to logistical time constraints of the research project, the Disability Questionnaire had to be written and incorporated into the project quickly, with no time available to gather input from people with aphasia.
Following the conclusion of the aphasia recovery project, a decision was taken to start afresh, and from the perspective of people with aphasia. Group interviews with people with aphasia and Speech and Language Therapists also took place to explore their views on the Disability Questionnaire. Critically 27 people with aphasia were seen for one-off in-depth qualitative interviews. There was an open agenda during these interviews to gain each person’s experience of acquiring and living with aphasia. The constructs that all these interviews generated were mapped and merged with the constructs that existing within the Disability Questionnaire. An advisory group of people with aphasia was convened to examine the constructs and co-produce an accessible and acceptable tool for assessing life with aphasia. An artist, experienced in producing aphasia-friendly images (Caroline Firenza), was engaged. And throughout the next year and a half, ideas, items, edits and iterations flowed backwards and forwards between Caroline and the advisory group. The result was the Communication Disability Profile (Swinburn with Byng, 2006); a Patient Reported Outcome Measure with a broader conceptual base than the Disability Questionnaire and underpinned by the social model of disability. It explored and rated communication, participation, barriers and facilitators, and emotional consequences of life with aphasia. The Communication Disability Profile (the CDP) has been used as an outcome measure in clinical research (Best, et al 2008) and by clinicians to measure quality of life of PWA (Hilari et al., 2015).
Although the CDP is in use in both research and clinical practice, it is lengthy; and this can be a barrier to use in everyday clinical environments. Therefore, the CDP underwent an iterative process of modifications to shorten it, resulting in the Aphasia Impact Questionnaire. The methodology employed was similar to the co-production methodology of the CDP. This AIQ-prototype was a briefer assessment, designed for clinical and research use. The AIQ-prototype went through two stages of psychometric testing to create the AIQ-21, the current available version.
What is the AIQ-21 ?
Friendly Accessible meaningful measurement
The AIQ is a subjective, pictorial, self-report questionnaire.
It is used with people who have aphasia, to enable them to express how they experience life.
It has three sections:
well- being/emotional state.
An administrator supports the person with aphasia to answer questions using a pictorial rating scale.
The person with aphasia chooses a scale they most closely identify with in relation to gender and ethnicity.
A conversational script can be used.
The design of the questions (including pictorial response options) is deliberately repetitive and maximally accessible.
The range of scores for each question is 0 to 4.
The scores from each item are entered onto a summary score sheet and summed to give a domain total and an AIQ-21 total.
Psychometric testing shows the AIQ-21 has good internal consistency and concurrent validity when compared with the Burden Of Stroke Scale (Doyle et al 2002).
Is the AIQ-21 free?
Yes but ...
... the development of the AIQ-21 has taken a lot of work. And to secure the copyright/intellectual property rights and to maintain the website costs. To ensure that the AIQ-21 continues to be available free to everyone, donations of £20 when downloading the AIQ-21 would be welcome. THANK YOU.
My vision for the AIQ-21 to be an interactive online tool. I have exciting plans ... watch this space!