Counting what counts: A framework for capturing real‐life outcomes of aphasia intervention

Abstract

Background: The initial motivation was our inability to capture the important but often elusive outcomes of interventions that focus on making a difference to the everyday experience of individuals with aphasia and their families. In addition, a review of the literature and input from stakeholder focus groups revealed the lack of an integrated approach to outcome evaluation across diverse approaches to aphasia intervention. Input from focus groups also indicated that existing classifications and models offering potential solutions are not always easily accessible and user friendly. This research has been generously funded by a grant from the Ontario Ministry of Health and Long Term Care. The views expressed here do not necessarily reflect those of the Ministry. The authors thank staff at the Aphasia Institute and members of the Ontario Aphasia Centres Interest Group for their participation in the project, Drs Audrey Holland and Roberta Elman for useful feedback on earlier drafts of this article, Laura Dickey for administrative support, and Carmela Simone and Meghan Roberts for development of pictographs. Aims: We aimed to create a user‐friendly conceptual framework for outcome measurement in aphasia that included a focus on real‐life outcomes of intervention and could be easily accessed by clinicians, researchers, policy makers, funders, and those living with aphasia. We wanted to build on existing work, e.g., that of the World Health Organisation, simplify presentation for accessibility, and make specific adaptations relevant to aphasia. By providing a common context for a broad range of outcome tools or measures, we hoped to enable more efficient and effective communication between and among all stakeholders. Main contribution: Living with Aphasia: Framework for Outcome Measurement (A‐FROM) is a conceptual guide to outcome assessment in aphasia that is situated within current thinking about health and disability. This simple platform can be used to frame and broaden thinking concerning outcome measurement for aphasia clinicians and researchers while enhancing the potential for meaningful communication between the clinical community, policy makers, and funders. By integrating Quality of Life and including domains related to environment, participation, and personal identity in the same framework as impairment, the importance of outcomes in all these areas is acknowledged for aphasia in particular and disability in general. A‐FROM has the potential to be used as an advocacy tool. Conclusions: This article is the first presentation of A‐FROM as an alternate guide to outcome measurement in aphasia. Initial ideas regarding applications are discussed. Further development and applications await input from our community of practice.