A concise patient reported outcome measure for people with aphasia: the aphasia impact questionnaire 21

Abstract

Background: There are many validated and widely used assessments within aphasiology. Few, however, describe language and life with aphasia from the perspective of the person with aphasia. Across healthcare, patient experience and user involvement are increasingly acknowledged as fundamental to person-centred care. As part of this movement, Patient Reported Outcome Measures (PROMs) are being used in service evaluation and planning. Aims: This paper reports the quantitative aspects of a mixed methods study that developed and validated a concise PROM, the Aphasia Impact Questionnaire (AIQ), co-produced with People with Aphasia (PWA). Methods & Procedures: The AIQ was developed within the social model of disability and all stages of the development of the AIQ were performed in partnership with PWA. It was adapted from a pre-existing and lengthier PROM for PWA, the Communication Disability Profile. The first iterations of the AIQ focused on domains of communication, participation and well-being/emotional state. Subsequently the AIQ was extended to include additional items relating to reading and writing (AIQ-21). The research design was iterative. Initially concurrent validity, internal consistency, and sensitivity of the AIQ-prototype were obtained. The AIQ-prototype was modified to become the AIQ-21. Statistical testing with a new group of PWA was performed, investigating internal consistency and concurrent validity of the AIQ-21.Outcomes & Results: Results for both the AIQ-prototype and AIQ-21 showed statistically significant concurrent validity and good internal consistency. Repeated measurement using the AIQ-prototype demonstrated statistically significant change after PWA accessed a community intervention. Conclusions: The AIQ-21 is a PROM that has great potential to be one of the core set of aphasia tests for clinical and research use. Results can be used alongside language assessment to enable person-centred goal setting and partnership working for people with aphasia.

Are People with Aphasia (PWA) Involved in the Creation of Quality of Life and Aphasia Impact-Related Questionnaires? A Scoping Review

“…All tools included in the selected studies are considered PRO (patient-reported outcome) or PROMs (patient-reported outcome measures). PRO or PROMs are scales or measurements of the health status of the patients, provided directly by the patient, without the interpretation or involvement of a physician or any other rehabilitation or health specialist [ 26 ]. The involvement of PWA in QoL and AIR tools was analyzed and presented as reported in the selected published studies.…”

“…From the 10 selected studies reporting on the development of AIR-Q, only four involved PWA in their creation. These tools were (1) the ALA—Assessment for Living with Aphasia in the study of Simmons-Mackie et al [ 44 ], (2) the ACOM—Aphasia Communication Outcome Measure of Hula et al [ 45 ], (3) the MOSE—Measurement of Stroke Environment in the study of Babulal and Connor [ 8 ], and (4) the AIQ—Aphasia Impact Questionnaire of Swinburn et al [ 26 ]. All four AIR-Qs were based on a conceptual framework: The ALA, ACOM, and the MOSE (75%) were constructed on the ICF framework, [ 6 ] whereas the AIQ followed the Social Model of Disability [ 47 ].…”

“…The PWA that were involved in the four studies as research partners were all adults in the chronic stage post stroke (SPS) (at least 6 months post onset). Sample size ranged from n = 329 PWA for the study by Hula et al [ 45 ] on the ACOM, to n = 90 PWA for the AIQ [ 26 ]. For the MOSES, Babulal and Connor [ 8 ] recruited n = 43 stroke survivors from which n = 21 were PWA, whereas for the ALA of Simmons-Mackie et al [ 44 ], n = 101 PWA.…”

“…For the AIQ [ 26 ], PWA were involved in the preparatory and execution phases [ 11 ] of the research through co-production methodology. The AIQ prototype was developed with the Disability Questionnaire (DQ) within the Comprehensive Aphasia Test (CAT) [ 63 ] but without the direct involvement of PWA.…”

Measures of functional, real-world communication for aphasia: a critical review

“…Observational profiles that aim to measure functional communication in aphasia include the Communicative Effectiveness Index (CETI; Lomas et al, 1989), the Assessment of Communicative Effectiveness in Severe Aphasia (ACESA; Cunningham et al, 1995), the Functional Outcome Questionnaire for Aphasia (FOQ-A; Ketterson et al, 2008), the Communicative Activity Log (CAL; Pulvermüller & Berthier, 2008), the Communication Outcome after Stroke, client and carer version (COAST and carer COAST; Long, Hesketh, & Bowen, 2009), and the Aphasia Communication Outcome Measure (ACOM; Hula et al, 2015). Measures such as the COAST have expanded their definition of functional communication outcome to include measures of the impact of the communication impairment on the client's life (similar examples are the Aphasia Impact Questionnaire-21, Swinburn et al, 2018;Swinburn & Byng, 2006). The criticism for observational profiles as discussed in the previous section also applies here: they are considered to be subjective and indirect measures of functional communication (Blomert et al, 1987;van der Meulen et al, 2010), including the fact that for these profiles, communication is judged on the basis of indirect observation (i.e., memory of multiple conversations that have previously been observed).…”