Title: Communication Partner Training for people with aphasia and their family members: identification of intervention components, expected outcomes and associated outcome measures
Funder: Department of Health and Social Care

Abstract: Aphasia is a communication disorder acquired by a third of stroke survivors. It affects understanding of spoken language, talking, reading and writing leading to breakdown in communication between people with aphasia (PWA) and their family members. Aphasia means couples are less able to understand or emotionally support one another. They experience frustration, isolation, and sadness. Recent research and our patient and public involvement work show that PWA and their family members want therapy to mitigate these consequences. Communication Partner Training (CPT) is a complex intervention to help improve communication between PWA and their communication partners. Systematic reviews highlight a critical mass of small studies which indicate its potential effectiveness. Further research is needed to develop a theoretically underpinned, well-specified, and manualized CPT intervention which can be replicated and implemented in the NHS, and to determine its effectiveness. A future programme grant would include: 1) Experience-based co-design of a manualised CPT intervention for NHS delivery, 2) feasibility study evaluating intervention acceptability and feasibility of conducting a definitive trial, 3) evaluation of clinical and cost-effectiveness through a definitive trial, 4) study of NHS implementation, 5) exploration of CPT from social care perspectives. Previous CPT research has included various components with little specification and justification for their mechanisms of action, and many outcome measures have been used without clear links to desired intervention outcomes. In preparation for a programme grant we aim to: identify components with mechanisms of action to inform a programme theory for an optimal CPT intervention based on evidence, theory, experience and expertise. identify important clinical outcomes of CPT, and map onto existing outcome measures to select the most valid for use in evaluations and calculate the sample size for a trial. In work package 1, CPT intervention components will be identified from existing and updated literature reviews using the TIDieR framework. The Behaviour Change Taxonomy will be used to identify behaviour change techniques (BCTs) associated with each component. These will be mapped to their hypothesised mechanisms of action to form a programme theory. Using consensus methods, PWA and communication partners will rate the most important components via Nominal Group Technique (NGT), and NHS speech and language therapists (SLTs), CPT researchers and social care staff will do similarly via e-Delphi. These activities will contribute to a preliminary logic model. In work package 2, consensus on what PWA and communication partners consider to be important outcomes of CPT and what SLTs and CPT researchers consider important will be gained using NGT and eDelphi methods respectively. The findings will be triangulated to identify common important outcomes which will inform the logic model. Existing measures that include key outcomes will be identified through reviews of CPT literature, outcome measures for stroke, aphasia and carers, and the core outcome set for aphasia. The measures with good content validity will be evaluated using the COSMIN risk of bias checklist to identify the most psychometrically robust outcome measures. Timelines for delivery: 24 months WP1 (M1-11); WP2 (M10-22); Logic model completion (M16); Dissemination and PGfAR planning (M12-24).

Lay abstract: What is the problem? One third of stroke survivors have the communication disorder, aphasia. Aphasia can make it difficult to talk, understand what others are saying, read and write. Patients and family members express how aphasia makes everyday communication difficult: They are less able to understand and support one another and feel frustrated, lonely and sad. What can we do? Communication Partner Training (CPT) is a therapy that aims to improve communication between people with aphasia and their family members/communication partners. Few NHS patients currently receive CPT. The people with aphasia and family members we talked to felt that CPT would help make everyday life easier, more enjoyable and feel more normal. What is the evidence for CPT? There have been several small studies that show CPT might help. However, we don t have enough evidence on how effective it is. Also, the CPT therapy has not been documented in enough detail for speech and language therapists to provide it in practice. What do we propose? In a future programme grant for applied research we propose creating a CPT programme and manual for its delivery in the NHS. We will co-design it with people with aphasia, family members, therapists and researchers. We will then see whether it is acceptable, feasible to deliver in the NHS and whether it is possible to conduct a larger study. A large study would be planned across several NHS speech and language therapy departments in the UK to determine how effective it is and to understand how best to make it available to NHS patients. What do we need to do now? To prepare for the above research we need to understand what the components of CPT need to be. We also need to know what outcomes are most important to people and which assessments we should use to measure these. We will look at the CPT literature and describe components that have been used before. We will offer explanations for how these components help people with aphasia and their communication partners to communicate. People with aphasia, communication partners, NHS speech and language therapists and CPT researchers will be asked to rank the most important components. The same groups of people will also be asked to agree what outcomes of CPT are most important. We will then identify assessments that best measure these outcomes for the future studies. People with aphasia and communication partners will be involved both as participants and as project advisors throughout. Using the results we will: 1) publish the components of CPT and how they are thought to work to lead to the changes people with aphasia and communication partners want, 2) design and apply for funding of the future research programme.

Research activity codes: 5.7 PHYSICAL
Health categories: NEUROLOGICAL;STROKE