Search

Background We require high-quality information on the current burden, the types of therapy and resources available, methods of delivery, care pathways and long-term outcomes for people with aphasia. Aim To document and inform international delivery of post-stroke aphasia treatment, to optimise recovery and reintegration of people with aphasia. Methods & Procedures Multi-centre, prospective, non-randomised, open study, employing blinded outcome assessment, where appropriate, including people with post-stroke aphasia, able to attend for 30 minutes during the initial language assessment, at first contact with a speech and language therapist for assessment of aphasia at participating sites. There is no study-mandated intervention. Assessments will occur at baseline (first contact with a speech and language therapist for aphasia assessment), discharge from Speech and Language Therapy (SLT), 6 and 12-months post-stroke. Our primary outcome is changed from baseline in the Amsterdam Nijmegen Everyday Language Test (ANELT/Scenario Test for participants with severe verbal impairments) at 12-months post-stroke. Secondary outcomes at 6 and 12 months include the Therapy Outcome Measure (TOMS), Subjective Index of Physical and Social Outcome (SIPSO), Aphasia Severity Rating Scale (ASRS), Western Aphasia Battery Aphasia Quotient (WAB-AQ), stroke and aphasia quality of life scale (SAQoL-39), European Quality of Life Scale (EQ-5D), lesion description, General Health Questionnaire (GHQ-12), resource use, and satisfaction with therapy provision and success. We will collect demography, clinical data, and therapy content. Routine neuroimaging and medication administration records will be accessed where possible; imaging will be pseudonymised and transferred to a central reading centre. Data will be collected in a central registry. We will describe demography, stroke and aphasia profiles and therapies available. International individual participant data (IPD) meta-analyses will examine treatment responder rates based on minimal detectable change & clinically important changes from baseline for primary and secondary outcomes at 6 and 12 months. Multivariable meta-analyses will examine associations between demography, therapy, medication use and outcomes, considering service characteristics. Where feasible, costs associated with treatment will be reported. Where available, we will detail brain lesion size and site, and examine correlations with SLT and language outcome at 12 months. Conclusion International differences in care, resource utilisation and outcomes will highlight avenues for further aphasia research, promote knowledge sharing and optimise aphasia rehabilitation delivery. IPD meta-analyses will enhance and expand understanding, identifying cost-effective and promising approaches to optimise rehabilitation to benefit people with aphasia.

Purpose: “Self-management” empowers individuals to take responsibility for their healthcare through skill-building, personal growth, and self-efficacy related to chronic health condition management. Self-management approaches may benefit people with aphasia (PwA); however, PwA are often excluded from stroke self-management research and there is no published research reporting on aphasia-specific self-management programs. Communication partners (CPs) are involved in the rehabilitation and day-to-day lives of PwA, thus giving them unique insights and knowledge of PwA needs. The present study aimed to investigate CP experiences and perspectives regarding aphasia self-management and to explore CP perceptions of the use of technology in aphasia self-management. Methods: In-depth, semi-structured interviews with 14 CPs living in Australia. Interview data was analysed using qualitative content analysis. Results: Analysis revealed six core themes: (1) aphasia self-management is embedded into everyday life, (2) CPs provide comprehensive self-management support, (3) speech-language pathologists (SLPs) provide tools and support to enable PwA to self-manage, (4) aphasia self-management can be enhanced by technological supports, (5) potential positive outcomes of aphasia self-management, and (6) factors influencing successful aphasia self-management. Conclusions: Aphasia self-management programs should focus on individual needs, functional communication in daily life, and social interaction. PwA and CPs are central to these programs, assisted by SLPs. Technology should be explored to augment aphasia self-management.Implications for Rehabilitation Communication partners suggest that people with aphasia are already engaging in aspects of self-management and that more formal aphasia-specific self-management approaches may be beneficial. Dedicated aphasia self-management programs should be situated in daily life with a focus on functional communication, life participation, confidence, and independence. Communication partners, speech-language pathologists, and technology are key support sources for aphasia self-management. Further input should be sought from communication partners in the development of aphasia self-management programs.

PurposeA core outcome set (COS; an agreed minimum set of outcomes) was developed to address the heterogeneous measurement of outcomes in poststroke aphasia treatment research. Successful implementation of a COS requires change in individual and collective research behavior. We used the Theoretical Domains Framework (TDF) to understand the factors influencing researchers' use and nonuse of the Research Outcome Measurement in Aphasia (ROMA) COS.MethodAphasia trialists and highly published treatment researchers were identified from the Cochrane review of speech and language therapy for aphasia following stroke and through database searches. Participants completed a theory-informed online survey that explored factors influencing COS use. Data were analyzed using descriptive statistics and qualitative content analysis.ResultsSixty-four aphasia researchers from 13 countries participated. Most participants (81%) were aware of the ROMA COS, and participants identified more facilitators than barriers to its use. The TDF domain with the highest agreement (i.e., facilitator) was “knowledge” (84% agree/strongly agree). Participants had knowledge of the measures included in the ROMA COS, their associated benefits, and the existing recommendations. The TDF domains with the least agreement (i.e., barriers) were “reinforcement” (34% agree/strongly agree); “social influences” (41% agree/strongly agree); “memory, attention, and decision processes” (45% agree/strongly agree); and “behavioral regulation” (49% agree/strongly agree). Hence, participants identified a lack of external incentives, collegial encouragement, and monitoring systems as barriers to using the ROMA COS. The suitability and availability of individual measurement instruments, as well as burden associated with collecting the COS, were also identified as reasons for nonuse.ConclusionsOverall, participants were aware of the benefits of using the ROMA COS and believed that its implementation would improve research quality; however, incentives for routine implementation were reported to be lacking. Findings will guide future revisions of the ROMA COS and the development of theoretically informed implementation strategies.Supplemental Materialhttps://doi.org/10.23641/asha.16528524

For people with post-stroke aphasia, “Will I get better?” is a question often asked, but one that is intellectually and emotionally demanding for speech pathologists to answer. Speech pathologists’ formulation and delivery of aphasia prognoses is varied and there is limited evidence for optimising practice. We aimed to understand speech pathologists’ clinical experiences, reasoning, and support needs in aphasia prognostication. Twenty-five Australian speech pathologists working with people with aphasia participated in individual, semi-structured interviews. Their age, level of experience, work setting, and location were maximally varied. Interview responses were analysed qualitatively using thematic analysis. Five themes were drawn from the interviews: (1) prognostic challenges are shared but not voiced; (2) truth is there’s no quick fix; (3) recovery is more than words; (4) the power of words; and, (5) prognostic competence is implicit. Speech pathologists use implicit competencies to formulate and deliver aphasia prognoses. A patient-centred, holistic contextualisation of aphasia recovery may enable realistic, optimistic, and constructive conversations about prognosis. These conversations may have therapeutic potential if prognostic uncertainty, emotional adjustment, and conditional outcomes are carefully addressed. Future research should seek to understand the perceptions and preferences of people with aphasia and their significant others.Implications for RehabilitationAphasia prognostication in clinical practice is complex and nuanced, thus increased clinical and research focus is warranted to ensure key stakeholder needs are met.Conversations about prognosis may be more meaningful to people with aphasia if recovery is conceptualised as encompassing impairment, activity, and participation outcomes.Given the implicit competencies required for prognostication, a structured approach to reflective practice and experience-based training may be beneficial.Conversations about prognosis may have therapeutic value, but further research is needed to explore this potential. Aphasia prognostication in clinical practice is complex and nuanced, thus increased clinical and research focus is warranted to ensure key stakeholder needs are met. Conversations about prognosis may be more meaningful to people with aphasia if recovery is conceptualised as encompassing impairment, activity, and participation outcomes. Given the implicit competencies required for prognostication, a structured approach to reflective practice and experience-based training may be beneficial. Conversations about prognosis may have therapeutic value, but further research is needed to explore this potential.

In clinical practice and in research, aphasia measurement instruments are used for many reasons: to screen and diagnose, to identify deficits and strengths, and to measure outcomes. A proliferation...

Prognostication is a complex clinical task that involves forming a prediction about recovery and communicating prognostic information to patients and families. In aphasia, recovery is difficult to predict and evidence-based guidance on prognosis delivery is lacking. Questions about aphasia prognosis commonly arise, but it is unknown how speech pathologists formulate and deliver information about expected recovery. An understanding of current practice in prognostication is needed to develop evidence-based guidelines for this process, and is necessary in order to ensure successful future implementation of recommended practice regarding prognosis delivery.To identify the factors speech pathologists consider important when responding to questions about aphasia prognosis; to examine how they respond in different scenarios; and to evaluate their current attitudes towards aphasia prognostication.A total of 54 speech pathologists participated in an online survey featuring hypothetical aphasia prognosis delivery scenarios, short-response questions and ratings. Open responses were analysed thematically. Multiple-choice responses were analysed using descriptive statistics and non-parametric tests.Speech pathologists regarded factors relating to the nature and severity of post-stroke deficits, an individual's level of motivation and the availability of social support as most important for forming an aphasia prognosis. When delivering prognostic information, considerations of the recipient's emotional well-being, hope and expectations, and comprehension of information were regarded as most important. Speech pathologists' prognosis responses varied in content and manner of communication. The content of the responses included predictions of recovery and information about various attributes and activities contributing to recovery. Prognostic information was most frequently communicated through qualitative probability expressions, general statements and uncertainty-based expressions. A need for more professional support in aphasia prognostication was indicated.There is variation in the way speech pathologists respond to questions about aphasia prognosis, and it is unknown how these conversations affect people with aphasia and their significant others. Further research to understand speech pathologists' clinical reasoning and professional support needs, and the perspectives of people living with aphasia, may help to develop an evidence-based approach to prognostication in aphasia. What this paper adds What is already known on this subject Questions about aphasia prognosis are difficult to answer. Current methods for predicting aphasia recovery are yet to demonstrate the reliability and individual specificity required for clinical application. At present, there is no evidence-based guidance or support for prognosis delivery in aphasia. What this study adds to existing knowledge There is variation in the way speech pathologists predict aphasia recovery, the prognostic information they deliver and the manner in which they communicate prognoses. Current approaches to aphasia prognostication are reliant on experience and professional judgement, and speech pathologists desire more support for undertaking this task. What are the potential or actual clinical implications of this work? Speech pathologists lack a consistent approach to aphasia prognostication and desire more support in this task. The present findings offer insight into clinician attitudes and practice, and provide a direction for future research to establish best-practice guidelines for this complex and demanding area of aphasia management.

Background : Definitions reflect the current state of knowledge about a health condition. An agreed definition of aphasia is central to the progression of the science and clinical practice relevant to aphasia.\ud \ud Aim : To establish consensus on a definition of aphasia.\ud \ud Methods & Procedures : A three-round modified e-Delphi study was conducted with aphasia researchers who were members of the Collaboration of Aphasia Trialists (CATs). In round one, participants were provided with a draft definition developed by the Societal Impact and Reintegration Working Group of CATs. Participants were asked whether they agreed with the definition and were asked to comment on any aspects that they perceived to require amendment. Comments were collated and analysed using inductive content analysis. In round two, participants were presented with the collated and de-identified results of the first round and the participants were asked to vote “yes/no” on two contentious aspects of the definition. In round three, agreement on the revised definition was again sought using closed “yes/no” voting. Consensus was defined a priori as at least 70% agreement by 80% of all CATs members. CATs membership fluctuated across the study period and ranged between 131 and 141 members.\ud \ud Outcomes & Results : The proposed definition was Aphasia is a communication disability due to an acquired impairment of language modalities caused by focal brain damage. Aphasia may affect participation and quality of life of the person with aphasia as well as their family and friends. Aphasia masks competence and affects functioning across relationships, life roles and activities, thereby influencing social inclusion, social connectedness, access to information and services, equal rights, and wellbeing in family, community and culture.\ud \ud Two main categories of proposed amendments to the definition were identified: (1) definition of aphasia as a communication disability versus a language impairment; and (2) definition of aphasia as being the result of a focal and/or diffuse lesion. After three rounds of surveys, consensus was unable to be achieved with an almost even split across participants on both amendment issues.\ud \ud Conclusion : Further debate about the use of the term communication disability to describe aphasia and whether aphasia is a result of focal or diffuse lesions is required before consensus is again attempted.

Background: An important goal of people living with aphasia, aphasia organizations and professionals who work with aphasia is increased awareness of aphasia by the public. However, surveys of the public awareness of aphasia around the world and over time suggest that public knowledge of aphasia is poor. Aims: The aim of this article is to examine the literature on aphasia awareness and aphasia awareness campaigns, and to propose a strategic research agenda to move awareness building forward. Main Contribution: Aphasia awareness campaigns appear to have had minimal impact on knowledge of aphasia by the general public. Potential problems with aphasia awareness building were identified including a lack of a unified and compelling message across awareness campaigns, lack of coordination across organizations and campaigns, tendency to target audiences already familiar with aphasia, failure to base campaigns on theory and research from disciplines such as marketing, health promotion and communication research, failure to involve people with aphasia, their families and health-care professionals in the co-design of campaigns and no evidence that the impact of campaigns has been evaluated. Conclusions: A strategic research agenda is needed in order to increase the effectiveness, co-design, and co-evaluation of aphasia awareness campaigns worldwide. The authors propose an international effort and comprehensive research agenda to address aphasia awareness.

IntroductionAphasia is an impairment of language that occurs in 30%–40% of stroke survivors. This often chronic condition results in poor outcomes for the individual with aphasia and their family. Long-term aphasia management is limited, with few people receiving sufficient services by 6–12 months postonset. We present a protocol for the development of coproduced aphasia service elements. We will use experience-based codesign (EBCD), an approach that enables service users and providers to collaboratively develop services and care pathways. Drawing on the experiences of people with aphasia, their families and clinicians we will establish priorities for the development of new services and later work together to codesign them.Methods and analysisThis research will be coproduced with people with aphasia (n=30–60), their families (n=30–60) and speech pathologists (n=30–60) in Queensland, Australia, using EBCD. A consumer advisory committee will provide oversight and advice throughout the research. In phase 1, we will use semistructured interviews and the nominal group technique to explore experiences and unmet needs in aphasia rehabilitation. Data will be analysed using thematic analysis and the resulting themes will be prioritised in multistakeholder focus groups. Outcomes of phase 1 will inform future research (phase 2) to codesign services. Financial costs and participant experiences of EBCD will be measured.Ethics and disseminationHuman Research Ethics Committee approval for phase 1 has been obtained (HREC/2020/QRBW/61368). Results will be reported in peer-reviewed journal articles, presented at relevant conferences and, following EBCD suggested best practice, fed back to participants and community members at a celebratory event at completion of the project. The inclusion of service users in all stages of research will facilitate an integrated approach to knowledge translation. A summary of research findings will be made available to participating sites.

PURPOSE Self-management can lead to increased self-efficacy and improved quality of life for individuals with chronic conditions; however, there is little research exploring how self-management approaches can be used for chronic communication disorders, such as aphasia. Modifications to self-management approaches would be required to accommodate for aphasia; therefore, the input of people with aphasia (PwA) should be sought. The aims of the present study were: (1) To investigate and document the experiences and perspectives of PwA regarding self-management; (2) To explore how technology can be used to support aphasia self-management. MATERIALS AND METHODS In-depth, semi-structured interviews were conducted with 26 PwA living in Australia. Qualitative content analysis was used to analyse interview data. RESULTS Analysis resulted in six themes: (1) In self-management, PwA take control of life with aphasia and assume responsibility for engaging in opportunities to improve overall communication; (2) Community aphasia groups are important enablers of self-management because they facilitate peer support; (3) Communication partners (CPs) provide multifaceted support in aphasia self-management; (4) SLPs provide integrated support and coordination in aphasia self-management; (5) Technology supports PwA to self-manage speech therapy and communication in daily life; (6) Psychological and physical health issues and societal factors may impact aphasia self-management abilities. CONCLUSION From the perspective of PwA, aphasia self-management involves enhancing skills enabling communication and life participation. PwA are central to aphasia self-management, with support provided by CPs, peers, and SLPs. Technology has a range of applications in aphasia self-management. PwA identified potential personal and contextual barriers that may impact self-management.IMPLICATIONS FOR REHABILITATIONFor people with aphasia, engaging in conversation and social interaction are primary means of managing/improving communicative life participation; therefore, this should be a key focus of aphasia self-management programs.Aphasia self-management approaches should maximise the use of available support and provide tailored information, education, and training in the area of self-management to key stakeholders (people with aphasia, communication partners, and speech-language pathologists).People with aphasia should be supported to use technology for aphasia self-management, encompassing communication specific and daily life use.People with aphasia should be heavily involved in the development of structured aphasia self-management approaches.

Coordination of international aphasia research would minimise duplication of effort, support synergistic international activities across languages and multidisciplinary perspectives, and promote high-quality conduct and reporting of aphasia research, thereby increasing the relevance, transparency, and implementation of findings. The Collaboration of Aphasia Trialists (CATs) sought to develop an aphasia research agenda to direct future research activities, based on priorities shared by people with aphasia, family members, and healthcare professionals. Our established international research network spanning 33 countries contributed to this activity. Research literature reporting the priorities of stakeholders was reviewed and synthesized (phase 1). Representatives from Working Groups on Aphasia Assessment & Outcomes, Prognosis & Predictors of Recovery, Effectiveness of Interventions, and Societal Impact & Reintegration participated in a two-day research agenda-setting meeting. The CATs expert panel refined research objectives and identified constituent components of research and methodological developments required to address these research components. The objectives and research components were grouped into overarching themes (phase 2). The resultant list was then circulated to more than 180 CATs members for review, revision, and approval. Consensus on the final aphasia research agenda and roadmap was reached by CATs executive committee (phase 3). The expert panel identified five overarching research themes: (i) evidence-based interventions for people with aphasia, (ii) effective interventions to support those communicating with people with aphasia, (iii) cross-linguistic assessment and core outcomes for aphasia research, (iv) predictors of language recovery, and (v) clinical implementation of research findings. Within these broad themes, 30 research objectives and 91 individual aphasia research components were identified and sequentially ordered. This agenda builds on research priorities identified by people with aphasia and their families, and includes priorities of healthcare professionals and researchers, and will support the rehabilitation and recovery of people with aphasia. Our internationally relevant research agenda promotes rigor in methodology, considers international applicability, synergistic activities, and sharing of resources and expertise. publishedVersion

© 2019, © 2019 Informa UK Limited, trading as Taylor & Francis Group. Background: Speech-language pathologists (SLPs) measure outcomes to gauge the impact of their interventions and to inform best care for clients. Previous research has explored outcome measurement practices in aphasia rehabilitation, however the factors driving clinician behaviour have not been examined. Aim: To explore current clinical practice and perceived barriers and facilitators to aphasia outcome measurement. Methods and Procedures: Australian SLPs who worked clinically with people with aphasia completed a cross-sectional online survey. Current practice was explored using a combination of multiple-choice questions (with open-text response options) and Likert rating scales. Barriers and facilitators to outcome measurement were explored through ratings of statements aligned with the Theoretical Domains Framework. Data were analysed using descriptive statistics and cross-tabulations. Outcome and Results: Data from 74 Australian SLPs were included. All SLPs reported measuring outcomes and these most frequently related to communication and language. SLPs reported using a diverse range of outcome measures across construct areas and stage-post stroke of service provision, with more than 80 unique instruments/approaches identified. The most frequently used outcome measurement instruments/approaches were: The Western Aphasia Battery–Revised (WAB-R) for language; the Therapy Outcome Measures/Australia Therapy Outcome Measures (TOMs/AusTOMS) for communication, participation, and quality of life; and Goal Attainment Scaling for psychological and carer/significant other outcomes. Overall, SLPs identified more facilitators than barriers to outcome measurement. The main barriers related to the theoretical domains “behavioural regulation” (managing or changing actions) and “memory, attention and decision-making processes” (ability to retain information, focus selectively and choose between alternatives). The main facilitators related to the theoretical domains “beliefs about consequences” (acceptance of the truth, reality, or validity about outcomes of a behaviour) and “social/professional role and identity” (a coherent set of behaviours and displayed personal qualities in a social or work setting). Conclusions: All SLPs reported measuring outcomes with clients with aphasia and these primarily related to language and communication. The outcome measurement instruments/approaches used were heterogeneous within construct areas. SLPs see outcome measurement as part of their role and believe it to be an important activity, however report a need for training and workplace systems and strategies to support optimal practices. The results of this study may inform the development of theoretically informed implementation interventions which seek to improve SLP outcome measurement practice in aphasia rehabilitation.

Purpose: This study aimed to explore family members’ experiences and preferences for receiving aphasia information during the early phases of post-stroke care.Method: Sixty-five family members comp...

Purpose This article aims to explore current knowledge about factors influencing successful use of high-technology augmentative and alternative communication (AAC) in poststroke aphasia through a l...

Background: Self-management approaches are routinely used in chronic conditions to enable patients to take responsibility for their own care. A self-management approach may be appropriate for indiv...

To systematically review the evidence for effectiveness of rehabilitation interventions in people who are visually impaired, living in low- and middle-income countries. Fifteen databases and the grey literature were searched up until February 2020; papers were identified according to eligibility criteria, and assessed for risk of bias. Eligible studies were controlled trials (randomised or non-randomised) of rehabilitation interventions for blind or visually impaired adults or children from low- and middle-income countries. Possible outcomes included visual acuity, activities of daily living, safety, quality of life and psychological status. Fifteen eligible studies were identified from India, Turkey, Nigeria, Croatia and Iran. Six studies were randomised, seven were non-randomised trials, and in two the method of allocation was not clear. Participants were adults, children and both adults and children. Seven studies were small (n ≤ 65) and examined the effect of training programmes. Remaining studies compared the effect of low vision aids, economic rehabilitation, goalball, rehabilitation compliance and service delivery methods, including one large four-arm randomised trial (n = 436). Studies measured a variety of outcomes, and mostly showed a positive effect of interventions for pre- and post-intervention assessment, although between intervention group comparisons were often inconclusive. Overall, only four studies had a low risk of bias. A lack of high-quality evidence for rehabilitation interventions is a barrier to provision of low vision services in low- and middle-income countries. Future research should focus on establishing effectiveness and cost-effectiveness of devices and models of vision rehabilitation appropriate for low-resource settings.IMPLICATIONS FOR REHABILITATIONThe systematic review found a lack of high-quality evidence for rehabilitation interventions is a barrier to provision of low vision services in low- and middle-income countries.Consider how visual rehabilitation interventions which have been shown to be effective can be delivered by non-specialists.Ensure that service providers for people who are visually impaired are trained in recognising depression and anxiety and have pathways for referral to mental health services, as appropriate. The systematic review found a lack of high-quality evidence for rehabilitation interventions is a barrier to provision of low vision services in low- and middle-income countries. Consider how visual rehabilitation interventions which have been shown to be effective can be delivered by non-specialists. Ensure that service providers for people who are visually impaired are trained in recognising depression and anxiety and have pathways for referral to mental health services, as appropriate.

Background: People with aphasia (PWA) and their families (PWA-F) have conveyed that the receipt of information and education is a key component of rehabilitation which supports access to services a...

In their lead article, Dietz and Boyle (This issue) consider the evolution of discourse outcome measurement in aphasia rehabilitation, positing an urgent need for standardisation. We are undeniable...

Access to aphasia rehabilitation diminishes over time due to limited resources within the health care system. This results in many people with chronic aphasia being unable to access ongoing rehabil...

Background: Clinicians have expressed frustration at the lack of strong evidence for aphasia treatments. Inconsistent outcome measurement practices across treatment trials have negatively impacted the quality and strength of evidence for aphasia interventions. Core outcome sets (COSs; minimum sets of outcomes/outcome measures) are increasingly being used to maximise the quality, relevancy, transparency, and efficiency of health treatment research. The current study is the third in a trilogy of stakeholder perspectives to inform the development of a COS for aphasia treatment research.Aim: To identify essential aphasia treatment outcomes from the perspective of an international sample of clinicians and managers working in aphasia rehabilitation.Methods & Procedures: A three-round e-Delphi exercise was conducted with aphasia clinicians and managers. In total, 265 clinicians and 53 managers (n = 318) from 25 countries participated in round 1. In round 1, participants responded to the open-ended questi...

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 phases 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 wellbeing: 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 patient-reported satisfaction with treatment or impact of treatment (where no measures exist). Discussion Harmonization 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 phases I–IV aphasia treatment studies. This consensus statement has been endorsed by the Collaboration of Aphasia Trialists, the British Aphasiology Society, the German Society for Aphasia Research and Therapy, and the Royal College of Speech Language Therapists.

This study synthesised the findings of three separate consensus processes exploring the perspectives of key stakeholder groups about important aphasia treatment outcomes. This process was conducted to generate recommendations for outcome domains to be included in a core outcome set for aphasia treatment trials.International Classification of Functioning, Disability, and Health codes were examined to identify where the groups of: (1) people with aphasia, (2) family members, (3) aphasia researchers, and (4) aphasia clinicians/managers, demonstrated congruence in their perspectives regarding important treatment outcomes. Codes were contextualized using qualitative data.Congruence across three or more stakeholder groups was evident for ICF chapters: Mental functions; Communication; and Services, systems, and policies. Quality of life was explicitly identified by clinicians/managers and researchers, while people with aphasia and their families identified outcomes known to be determinants of quality of life.Core aphasia outcomes include: language, emotional wellbeing, communication, patient-reported satisfaction with treatment and impact of treatment, and quality of life. International Classification of Functioning, Disability, and Health coding can be used to compare stakeholder perspectives and identify domains for core outcome sets. Pairing coding with qualitative data may ensure important nuances of meaning are retained. Implications for rehabilitation The outcomes measured in treatment research should be relevant to stakeholders and support health care decision making. Core outcome sets (agreed, minimum set of outcomes, and outcome measures) are increasingly being used to ensure the relevancy and consistency of the outcomes measured in treatment studies. Important aphasia treatment outcomes span all components of the International Classification of Functioning, Disability, and Health. Stakeholders demonstrated congruence in the identification of important outcomes which related Mental functions; Communication; Services, systems, and policies; and Quality of life. A core outcome set for aphasia treatment research should include measures relating to: language, emotional wellbeing, communication, patient-reported satisfaction with treatment and impact of treatment, and quality of life. Coding using the International Classification of Functioning, Disability, and Health, presents a novel methodology for the comparison of stakeholder perspectives to inform recommendations for outcome constructs to be included in a core outcome set. Coding can be paired with qualitative data to ensure nuances of meaning are retained.

Outcome measurement was a major focus of Carol Frattali's work. This article describes three aphasia research initiatives that have followed from her early publications. The first is the application of the World Health Organization (WHO) International Classification of Functioning, Disability and Health (ICF) to aphasia. The Living with Aphasia: A Framework for Outcome Measurement (A-FROM) is a reinterpretation of the ICF specifically as it applies to aphasia. The Assessment for Living with Aphasia (ALA) is an assessment that is derived from the A-FROM. The second initiative is the program of research that has described aphasia and aphasia rehabilitation from the patient perspective. Using qualitative methodologies, this research has highlighted the need for relationship-centred care in aphasia services. Finally, a current project is described that seeks to gain international consensus on a core outcome set for aphasia treatment research. This will help researchers combine data in effectiveness studies. To achieve the best outcomes for people with aphasia, there is a need to realize Carol Frattali's vision and ensure the continued use of unifying frameworks, relationship-centered practice, consumer-focused research, and consistent outcome measurement practices.

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. Prioritized outcomes for both participant groups linked to all ICF components; primary activity/participation (39%) and body functions (36%) for people with aphasia, and activity/participation (49%) and environmental factors (28%) for family members. Outcomes prioritized 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 family-centred approach to rehabilitation. These results will be combined with other stakeholder perspectives to establish a core outcome set for aphasia treatment research.Implications for Rehabilitation• Important outcomes for people with aphasia and their families span all components of the ICF.• The relevancy and translation of research findings may be increased by measuring and reporting research outcomes which are important to people living with aphasia.• The results of this study indicate that important treatment outcomes for people living with aphasia most frequently link to the activity/participation and body function components of the ICF.• The outcomes identified in this study suggest a broad role for clinicians working in aphasia rehabilitation. The categories of identified outcomes may be used clinically as a starting point in goal-setting discussions with clients and their families. 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. Prioritized outcomes for both participant groups linked to all ICF components; primary activity/participation (39%) and body functions (36%) for people with aphasia, and activity/participation (49%) and environmental factors (28%) for family members. Outcomes prioritized 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 family-centred approach to rehabilitation. These results will be combined with other stakeholder perspectives to establish a core outcome set for aphasia treatment research.Implications for Rehabilitation• Important outcomes for people with aphasia and their families span all components of the ICF.• The relevancy and translation of research findings may be increased by measuring and reporting research outcomes which are important to people living with aphasia.• The results of this study indicate that important treatment outcomes for people living with aphasia most frequently link to the activity/participation and body function components of the ICF.• The outcomes identified in this study suggest a broad role for clinicians working in aphasia rehabilitation. The categories of identified outcomes may be used clinically as a starting point in goal-setting discussions with clients and their families.

Aphasia treatment research lacks a consistent approach to outcome measurement. There is heterogeneity in the outcome measures used across treatment trials and a lack of research evidence exploring the outcome constructs which are most important to key stakeholders. The efficiency, relevancy, transparency, and overall quality of aphasia treatment research could be increased through the development of a core outcome set (COS)—an agreed standardised set of outcomes for use in treatment trials. The overarching aim of this research was to generate evidence-based recommendations for outcome constructs and outcome measures for a COS for aphasia treatment research. The thesis is comprised of a review of the literature (chapter 2) and two phases of research: (1) a trilogy of stakeholder consensus studies and a synthesis of the results; and (2) a scoping systematic review of studies reporting the measurement properties of standardised outcome instruments validated with people with aphasia. The World Health Organization International Classification of Functioning Disability and Health (ICF) was used across all studies to provide a common framework for the analysis of results. Study 1 aimed to gain consensus on important aphasia treatment outcomes from the perspective of people with aphasia and their families. A total of 39 people with aphasia and 29 family members participated in one of 16 nominal groups across seven countries. Qualitative content analysis revealed six themes describing: (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 services (people with aphasia) and Improved health and support services (family members). 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%). Study 2 aimed to gain consensus on important aphasia treatment outcomes from the perspective of aphasia treatment researchers. Purposively sampled researchers were invited to participate in a three-round e-Delphi exercise. Eighty researchers commenced round 1, with 72 completing the entire survey. High response rates (≥85%) were achieved in subsequent rounds. Researchers reached consensus that it is essential to measure language function and specific patient-reported outcomes (impact of treatment; communication-related quality of life; satisfaction with intervention; satisfaction with ability to communicate; and satisfaction with participation) in all aphasia treatment research. Outcomes reaching consensus linked to all ICF components. Study 3 aimed to gain consensus on important treatment outcomes from the perspective of aphasia clinicians and managers, again using a three-round e-Delphi exercise. In total, 265 clinicians and 53 managers (n=318) from 25 countries participated in round 1. A total of 51 outcomes reached consensus after the third round. The two outcomes with the highest levels of consensus both related to communication in the dyad. Outcomes relating to people with aphasia most frequently linked to the ICF Activity/Participation component (52%), whilst outcomes relating to significant others were evenly divided between the Activity/Participation component (36%) and Environmental Factors (36%). The results of studies 1-3 were synthesised through a comparison of ICF coding (study 4). Results revealed that important outcomes from aphasia treatment occur at all levels of the ICF. Within these components, congruence across three or more stakeholder groups was evident for outcomes which related to Mental functions (Emotional functions, Mental functions of language, Energy and drive functions); Communication (Communicating by language, signs and symbols, receiving and producing messages, conversations, and using communication devices and techniques); Services, systems, and policies (Health services, systems and policies), and quality of life. Study 5 was a scoping systematic review of studies reporting the measurement properties of standardised outcome instruments which have been validated with people with aphasia. In total, 184 references for 79 outcomes instruments were included in the review. The vast majority of outcome instruments related to Body Functions (n=49). No outcome instruments were reported to primarily measure constructs relating to Environmental Factors. A number of outcome instruments measured constructs which did not fall within the ICF, these included measures of quality of life (n=7), life satisfaction (n=1), and knowledge about aphasia and stroke (n=1). This program of research identified that important aphasia treatment outcomes span the ICF and also go beyond – encompassing quality of life. Stakeholders reported outcomes relating to: language; emotional wellbeing; communication; health services; and quality of life should be measured routinely. This research has highlighted the large number of outcome instruments available for use with people with aphasia, which predominately measure Body Functions. Targeted development of appropriate instruments is required in some construct areas. Outcome constructs identified in phase 1 of this research were paired with outcome instruments identified in phase 2, to provide recommendations for an international COS consensus meeting.

We would like to thank the aphasia researchers who have contributed commentary to this forum. Their considered responses encourage debate and provide confirmation of the timeliness and importance of finding collaborative solutions to issues in outcome measurement...

Background: Aphasia treatment research lacks a uniform approach to outcome measurement. A wide range of outcome instruments are used across trials and there is a lack of research evidence exploring the outcomes most important to stakeholders. This lack of standardisation produces research outcomes that are difficult to compare and combine, limiting the potential to strengthen treatment evidence through meta-analysis and data pooling. The current heterogeneity in aphasia treatment research outcome measurement may be addressed through the development of a core outcome set (COS)—an agreed standardised set of outcomes for use in treatment trials.Aims: This article aims to provide a rationale and agenda for the development of a COS for aphasia treatment research.Main Contribution: A review of the literature reveals heterogeneity in the way outcome measurement is performed in aphasia treatment research. COSs have been developed in a wide range of health fields to introduce standardisation to research outcome me...

Purpose The purpose of this article is to identify outcome constructs that aphasia researchers consider essential to measure in all aphasia treatment research. Method Purposively sampled researchers were invited to participate in a 3-round e-Delphi exercise. In Round 1, an open-ended question was used to elicit important outcome constructs; responses were analyzed using inductive content analysis. In Rounds 2 and 3, participants rated the importance of each outcome using a 9-point rating scale. Outcomes reaching predefined consensus criteria were further analyzed using International Classification of Functioning, Disability and Health coding. Results Eighty researchers commenced Round 1, with 72 completing the entire survey. High response rates (≥ 85%) were achieved in subsequent rounds. Consensus was reached on 6 outcomes: (a) language functioning in modalities relevant to study aims, (b) impact of treatment from the perspective of the person with aphasia (PWA), (c) communication-related quality of life, (d) satisfaction with intervention from the perspective of the PWA, (e) satisfaction with ability to communicate from the perspective of the PWA, and (f) satisfaction with participation in activities from the perspective of the PWA. Conclusions Consensus was reached that it is essential to measure language function and specific patient-reported outcomes in all aphasia treatment research. These results will contribute to the development of a core outcome set.

(2018). Report from ROMA: an update on the development of a core outcome set for aphasia research. Aphasiology: Vol. 32, International Aphasia Rehabilitation Conference (IARC) September 2018, pp. 241-242.

Health professionals, researchers, and policy makers often consider the two terms aphasia and dysphasia to be synonymous. The aim of this article is to argue the merits of the exclusive use of the term aphasia and present a strategy for creating change through institutions such as the WHO-ICD. Our contention is that one term avoids confusion, speech-language pathologists prefer aphasia, scholarly publications indicate a preference for the term aphasia, stroke clinical guidelines indicate a preference for the term aphasia, consumer organizations use the title aphasia in their name and on their websites, and languages other than English use a term similar to aphasia. The use of the term dysphasia in the broader medical community may stem from the two terms being used interchangeably in the ICD10. Aphasia United http://www.shrs.uq.edu.au/aphasiaunited , an international movement for uniting the voice of all stakeholders in aphasia within an international context, will seek to eliminate the use of the term dysphasia.

This commentary aims to extend the debate of the lead article authors (Wylie, McAllister, Davidson, and Marshall, 2013) by translating the nine recommendations of the World Report on Disability into a plan of action for the aphasia community. Solutions for the advancement of aphasia science and services are presented at international (macro), national (meso), and local (micro) levels. Implications for speech-language pathologists and aphasia service delivery are discussed. An overarching call to action is the need for speech-language pathologists to support a strong and vibrant aphasia community at all levels, so that the voices of people with aphasia can be heard.