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People with aphasia need communicatively accessible written health information. Healthcare providers require knowledge of how to develop printed education materials (PEMs) in formats that people with aphasia prefer and can read. This study aimed to explore formatting characteristics considered to be barriers and facilitators to reading PEMs. Semi-structured in-depth interviews were conducted with 40 adults with aphasia who were selected using maximum variation sampling across aphasia severity, reading ability, and time post-stroke. Participants were shown stroke and aphasia PEMs obtained from the recruiting stroke services, asked to rank them from most liked to least liked, and comment on factors that made the PEMs easier and harder to read. The majority of participants ranked the aphasia friendly stroke (56.4%, n = 22) and aphasia (87.2%, n = 34) PEMs as most liked. Forty-five facilitator and 46 barrier codes were identified using qualitative content analysis and grouped into two categories; (1) content characteristics and (2) design characteristics. Findings support many of the recommendations found within the literature for developing best practice PEMs and accessible information for other patient groups. Routine consideration of the facilitators and barriers identified will contribute to making written information more accessible to people with aphasia.

Background: A core outcome set (COS; an agreed, minimum set of outcomes) was needed to address the heterogeneous measurement of outcomes in aphasia treatment research and to facilitate the production of transparent, meaningful and efficient outcome data. Objective: The Research Outcome Measurement in Aphasia (ROMA) consensus statement provides evidence-based recommendations for the measurement of outcomes for adults with post-stroke aphasia within phase I-IV aphasia treatment studies. Methods: This statement was informed by a four-year program of research which comprised investigation of stakeholder-important outcomes using consensus processes, a scoping review of aphasia outcome measurement instruments, and an international consensus meeting. This paper provides an overview of this process and presents the results and recommendations arising from the international consensus meeting. Results: Five essential outcome constructs were identified: Language, communication, patient-reported satisfaction with treatment and impact of treatment, emotional wellbeing, and quality of life. Consensus was reached for the following measurement instruments: Language: The Western Aphasia Battery Revised (WAB-R) (74% consensus); emotional well-being: General Health Questionnaire (GHQ)-12 (83% consensus); quality of life: Stroke and Aphasia Quality of Life Scale (SAQOL-39) (96% consensus). Consensus was unable to be reached for measures of communication (where multiple measures exist) or patientreported satisfaction with treatment or impact of treatment (where no measures exist). Discussion: Harmonisation of the ROMA COS with other core outcome initiatives in stroke rehabilitation is discussed. Ongoing research and consensus processes are outlined. Conclusion: The WAB-R, GHQ-12, and SAQOL-39 are recommended to be routinely included within phase I-IV aphasia treatment studies. This consensus statement has been endorsed by the Collaboration of Aphasia Trialists, the British Aphasiology Society, the ROMA consensus panel

This is the accepted version of the paper.This version of the publication may differ from the final published version. Permanent repository link:http://openaccess.city.ac.uk/15003/ Link to published version: http://dx.doi.org/10. 1080/09638288.2016.1194899 Copyright and reuse: City Research Online aims to make research outputs of City, University of London available to a wider audience. Copyright and Moral Rights remain with the author(s) and/or copyright holders. URLs from City Research Online may be freely distributed and linked to. City Research Online: http://openaccess.city.ac.uk/ publications@city.ac.uk City Research OnlineAbstract Purpose: To identify important treatment outcomes from the perspective of people with aphasia and their families using the ICF as a frame of reference. Methods:The nominal group technique was used with people with aphasia and their family members in seven countries to identify and rank important treatment outcomes from aphasia rehabilitation. People with aphasia identified outcomes for themselves; and family members identified outcomes for themselves and for the person with aphasia. Outcomes were analysed using qualitative content analysis and ICF linking.Results: A total of 39 people with aphasia and 29 family members participated in one of 16 nominal groups. Inductive qualitative content analysis revealed the following six themes: (1) Improved communication; (2) Increased life participation; (3) Changed attitudes through increased awareness and education about aphasia; (4) Recovered normality; (5) Improved physical and emotional well-being; and (6) Improved health (and support) services.Prioritised outcomes for both participant groups linked to all ICF components; primarily Activity/Participation (39%) and Body Functions (36%) for people with aphasia, and Activity/Participation (49%) and Environmental Factors (28%) for family members.Outcomes prioritised by family members relating to the person with aphasia, primarily linked to Body Functions (60%). Conclusions:People with aphasia and their families identified treatment outcomes which span all components of the ICF. This has implications for research outcome measurement and clinical service provision which currently focuses on the measurement of Body Function outcomes. The wide range of desired outcomes generated by both people with aphasia and their family members, highlights the importance of collaborative goal setting within a familycentred approach to rehabilitation. These results will be combined with other stakeholder perspectives to establish a core outcome set for aphasia treatment research. Achieving outcomes that are important to consumers is a key factor in maximising the value of healthcare (Porter & Lee, 2013). This conceptualisation of value reflects a broader shift in health care towards person-centred services which seek to meet individual needs in holistic ways (World Health Organization., 2007). In aphasia rehabilitation, the value of measuring consumer-important outcomes has steadily gained momentum in ...

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