An aphasia research agenda – a consensus statement from the collaboration of aphasia trialists

Figures & data

Table 1. Existing aphasia research priorities

Research Group	Priorities	Focus
Aphasia United (Worrall, 2013)	Build capacity amongst consumer organisations Build consensus about best practice Raise awareness	Global coordination of research and representation efforts.
James Lind Alliance Priority Setting Partnership for Life After Stroke (Pollock et al., 2012)	What are the best ways to help people recover from aphasia? How can stroke survivors and their families be helped to cope with speech problems?	The group aimed to identify research priorities related to life after stroke, two priorities of which related to aphasia.
James Lind Alliance Priority Setting Partnership for Aphasia (Franklin et al., 2018)	(1) Which speech and language therapy treatments work best for aphasia? (2)Speech and language therapy for aphasia: how soon should it begin, how intensive should it be and how long should it continue to be effective? (3) What is the best way to assess, diagnose, and manage depression in people with aphasia and to understand the impact of aphasia on significant relationships? (4) Can trained volunteers and carers impact on communication? (5) Do communication aids and software packages improve communication in patients with aphasia? (6) What are the best ways to manage adverse feelings caused by a communication difficulty? (7) What is the best way to improve understanding after stroke? (8) What stimulation techniques are useful for enhancing the engagement of stroke patients with severe cognition and communication impairments? (9) How can carers and others be helped to communicate with someone with aphasia? (10)What is the best way to help people with aphasia return to driving after stroke?	From the previously identified research priorities related to life after stroke, stakeholders examined and -identified priorities specifically related to aphasia.

Table 2. Aphasia research agenda

Theme 1: Interventions for people with aphasia
Research Infrastructure Priorities
Objective		Research Component
Optimising Goal setting		How effective is goal setting for people with aphasia? What components need to be worked on in order to reach those goals? (theoretical underpinnings)
Enhancing Treatment design		Does the order of delivering different aphasia interventions impact on language outcomes? What are the long-term unmet needs for people with aphasia, and how can studies be designed to address these needs?
Exploring Executive Function		Are therapy interventions that simultaneously target executive tasks and verbal behaviour more effective (in long-term improvement of daily conversation) than usual language rehabilitation approaches for people with aphasia? Do executive functions improve as a consequence of (intensive) language interventions?
Exploring Asset-based approaches		What is the added value of asset-based approaches to traditional rehabilitation and third sector (charity) recovery services? What is the clinical and cost effectiveness of asset-based approaches for people with aphasia following stroke?
Investigating multilingual interventions		What are the effective approaches to management (assessment & treatment) of patients from varied cultural and linguistic backgrounds? How does recovery and rehabilitation compare cross-linguistically and cross-culturally?
Maintaining language/therapy/rehabilitation gains		Are language benefits maintained over time? What are the long-term gains of aphasia interventions? How can we effectively support maintenance of gains made? Is one approach more beneficial for maintenance than another?
Determining access to non-SLTinterventions		Do people with aphasia experience differential access to other rehabilitation interventions compared to stroke peers without language impairment? Do people with aphasia experience differential access to medications? Do concomitant non-SLT interventions have a beneficial (additive) or detrimental effect on the outcome of language interventions?
Optimising mental health and wellbeingin aphasia		What are the best practices for the neuropsychological management of people with aphasia? What is the feasibility of a modified cognitive behavioural therapy (CBT) to manage mental health in aphasia? What is the effectiveness of levels 1 and 2 stepped care for mental health in aphasia provided by the multidisciplinary team?
Investigating aphasia and languagerehabilitation interventions		What is the relevance of the frequency of specific item repetitions to language recovery and long-term maintenance? What is the optimum duration of aphasia therapy in order to elicit lasting effects? How much spontaneous recovery takes place, and when? What is the optimum selection and order of treatment methods, and how does this depend on patient characteristics, on specific linguistic and/or neuropsychological impairments or on more general factors (motivation, workload capacity, etc.)? Which treatment is effective for which patient? What patient selection criteria should be applied for the different interventions? What factors affect which patients can participate in which intervention components? (single therapies OR integrated therapy package – which achieves the goal/outcome more efficiently and effectively)? What are the alternative approaches to the provision and augmentation of therapy intervention regimens and how effective are they? What are the effective interventions for recovery of reading and writing following aphasia? How does augmentation of intensity and dosage, using prescribed home practice tasks, impact on outcomes? What is the best intervention for recovery of auditory comprehension? Is intensity (measured in hours per week) or dosage (total hours spent in therapy) critical for effectiveness and/or maintenance of intervention? How effective is an outpatient therapy setting compared to an inpatient setting? How effective are SLT-adjuvant interventions like non-invasive brain stimulation or pharmacological strategies? What treatment is most effective in improving natural conversation and participation in life situations for people with aphasia? Which intervention components facilitate the generalisation of impairment-based gains to functional contexts? What is the feasibility of a peer-led aphasia group program, and what is the comparative efficacy of peer-led or professional led community aphasia programs? What are the comparative language outcomes when delivering Language Impairment and Functioning Therapy (LIFT) in-home via telerehabilitation (LIFT-HOME) against the standard in-clinic delivery of LIFT. What is the impact of patient profile in response to distributed or intensive aphasia interventions? What is the impact of patient profile in response to varying doses of aphasia interventions?
Theme 2: Interventions to support those communicating with people with aphasia
Objective		Research Component
Establishing spouse’s/ families of peoplewith aphasia’s unmet needs?		What are the unmet needs of family/carers of people with aphasia at different time points? How do we improve family members/carers’ life situation, health & quality of life? Which interventions would respond to those needs?
Establishing the core elementsof Communication Partner Training (CPT)?		Do these core elements differ for different communication partners? How do these differ depending on target
Determining effectiveness of CPT		Are CPT methods for training family member, carer, volunteer, health professions, or other health located staff to support communication, increase participation and social inclusion clinically and cost effective in terms of: theoretical approaches components regimen (duration, frequency, intensity, dose, etc.) delivery model (computer based, volunteers, etc.) provider (volunteer, healthcare professional, third sector, self-help)
Maintaining long-termCommunication Partner Training gains		What are the long-term outcomes of CPT? How long term are the effects of CPT, i.e., how well maintained are they? Does trained CP maintain taught/learned behaviours effectively? How can we optimise knowledge, understanding, and implementation of learned behaviours?
Describing treatment effectiveness acrossthe continuum of care		What are the effectiveness, feasibility, and sustainability of an enhanced communication environmental implementation package during hospital stays? What are the effects on healthcare communication of using the Aphasia App, compared to standard (no App) care? What is the effectiveness of an eHealth CPT program in helping professionals communicate in real-life aphasia settings?
Theme 3: Cross-linguistic assessment and core outcomes for aphasia research
Objective		Research Component
Establishing relationships betweenaphasia and global stroke severitymeasures		What is the relationship between aphasia outcome measures identified for collection in aphasia core outcome sets and global measures of post-stroke disability?
Optimising evaluators’ ratings		What are the factors that contribute to differences in subjective measurement of outcomes – for example, does this differ across assessors’ backgrounds, experiences, and countries?
Optimising multilingual cognitive tests		How can multilingual cognitive tests (linguistic and non-linguistic test for clinical and research purposes) that are suitable for people with aphasia be developed, validated, and implemented?
Developing/adapting participation andactivity measures in multiple languages		How can multilingual versions of suitable tool(s) measuring participation and activity of people with aphasia be developed for use in different language populations?
Optimisation of outcome assessment:examination of psychometrics andvalidation of assessments across countries		How can the feasibility of assessment tool use be optimised for international studies? Does assessment of the same aphasia outcome measure vary across different countries/languages? How can we improve psychometric properties of outcomes? How can we standardise reporting on psychometric properties (e.g., inter-rater reliability) for aphasia assessment tools? How can we develop best practices for consistent methodology in studies and reporting on studies? What strategies/criteria can be employed to optimise inter-rater reliability? What is the clinical significance of numerical changes in aphasia outcome measures? How can we identify and validate health economic outcome measures for people with aphasia?
Describing functional communicationoutcome measures and linguisticoutcome measures		What is the relationship between functional communication outcome measures and linguistic measures? How does this relate to the intervention?
Theme 4: Predictors of recovery
Objective		Research Component
Establishing neurobiological predictorsof recovery		What are the neurobiological predictors of aphasia recovery? What is the role of FOXP2 and other genes in post-stroke aphasia recovery? What is the role of behavioural and neurolinguistics behavioural testing in prediction of aphasia recovery? Are neurological markers of aphasia severity and aphasia recovery related and how? How can MRI, DTI (NODDI/HARDI), fMRI, and rs-fMRI be used to optimize prediction of aphasia recovery? What is the influence of structural brain damage and structural and functional connectivity on language and communication recovery following language and communication therapy? What is interaction between structural brain damage/structural and functional connectivity and patient psychosocial factors on language and communication recovery?
Establishing psychosocial predictorsof recovery		What are the available support resources at the individual, family, and social levels?
Theme 5: Implementation
Objective		Research Component
Establish the worldwide impact and costsof aphasia		What is the global burden of aphasia (disease) following post-stroke aphasia, including resource use, direct & indirect costs, and loss of income? What proportion of the overall stroke burden does this account for? How do health utilities differ in matched populations with and without post-stroke aphasia?
Explore increased representation ofpeople with aphasia in research		What are the best approaches to ensure inclusion of people with aphasia in stroke clinical research across the spectrum of chronicity and for different types of rehabilitation interventions?
Explore representation of spouses/familyof people with aphasia in research?		When and how should spouses/family members be included in design of new research and interventions?
International contexts		What impact does aphasia have internationally on: uptake of stroke services/rehabilitation (including but not limited to SLT)? Adherence and dose] rehabilitation services (SLT, physio, OT, and nursing) compared to peers with stroke in the community?/dose] rehabilitation services (SLT, physio, OT, and nursing) compared to peers with stroke in the community?
Access to and uptake of strokerehabilitation services		What impact does aphasia AND socioeconomic status have internationally on: access to rehabilitation adherence to intervention compared to peers with stroke in the community?
Healthcare-related communication withpeople with aphasia		How can aphasia awareness be improved: In the general population Within health care professionals What is best practice for communicating complex health information to people with aphasia?
Technology		How can new technology-based assessment tools be used for people with aphasia? How can new technology-based intervention tools be used for people with aphasia? How can technology be used to enhance effective resource utilisation, cost-effectiveness, and implementation of interventions in the aphasia population? Should transcranial magnetic stimulation (TMS) or transcranial direct current stimulation (tDCS) be used in post-stroke aphasia rehabilitation? How should TMS/ tDCS be implemented in terms of: protocols duration intensity and in combination with other therapies?
Multinational, multiculturalapproaches		What are SLTs’ education, assessments used, treatment possibilities, and treatment methods in different countries? How do service delivery models compare across countries? What are the practices of SLTs for assessment and treatment of multilingual people with aphasia?
Additional Areas of Need
Methodology		More aphasia research is needed from non-English-speaking countries. Recruitment of non-English-speaking participants would enhance the representativeness of the aphasia research population. Synthesis and use of big data on aphasia is beneficial in order to answer core research questions and eventually address new.
2. Infrastructure		An internationally coordinated post-graduate research programme would benefit knowledge exchange, improve research and clinical practice, and progress the field.

Figure 1. Study overview

Figure 2. Relationships between research themes

Figure 3. Research roadmap

Worrall, L., (2013) A united Voice for Aphasia http://aphasiology.pitt.edu/2439/1/Aphasia_United_-_A_Unified_Voice_for_Aphasia.pdf

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Pollock, A., St George, B., Fenton, M., & Firkins, L. (2012). Top 10 research priorities relating to life after stroke - consensus from stroke survivors, caregivers, and health professionals. International Journal of Stroke : Official Journal of the International Stroke Society, 9(3), 313–20. https://doi.org/https://doi.org/10.1111/j.1747-4949.2012.00942.x]

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Franklin, S., Harhen, D., Hayes, M., McManus, S., & Pollock, A. (2018). Top 10 research priorities relating to aphasia following stroke. Aphasiology, 32(11), 1388–1395. https://doi.org/https://doi.org/10.1080/02687038.2017.1417539

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