Establishing Quality Indicators and Implementation Priorities for Post-Stroke Aphasia Services Through End-User Involvement.

BACKGROUND: Currently, there are no agreed quality standards for post-stroke aphasia services. Therefore, it is unknown if care reflects best practices or meets the expectations of people living with aphasia. We aimed to (1) shortlist, (2) operationalise and (3) prioritise best practice recommendations for post-stroke aphasia care. METHODS: Three phases of research were conducted. In Phase 1, recommendations with strong evidence and/or known to be important to people with lived experience of aphasia were identified. People with lived experience and health professionals rated the importance of each recommendation through a two-round e-Delphi exercise. Recommendations were then ranked for importance and feasibility and analysed using a graph theory-based voting system. In Phase 2, shortlisted recommendations from Phase 1 were converted into quality indicators for appraisal and voting in consensus meetings. In Phase 3, priorities for implementation were established by people with lived experience and health professionals following discussion and anonymous voting. FINDINGS: In Phase 1, 23 best practice recommendations were identified and rated by people with lived experience (n = 26) and health professionals (n = 81). Ten recommendations were shortlisted. In Phase 2, people with lived experience (n = 4) and health professionals (n = 17) reached a consensus on 11 quality indicators, relating to assessment (n = 2), information provision (n = 3), communication partner training (n = 3), goal setting (n = 1), person and family-centred care (n = 1) and provision of treatment (n = 1). In Phase 3, people with lived experience (n = 5) and health professionals (n = 7) identified three implementation priorities: assessment of aphasia, provision of aphasia-friendly information and provision of therapy. INTERPRETATION: Our 11 quality indicators and 3 implementation priorities are the first step to enabling systematic, efficient and person-centred measurement and quality improvement in post-stroke aphasia services. Quality indicators will be embedded in routine data collection systems, and strategies will be developed to address implementation priorities. PATIENT AND PUBLIC CONTRIBUTION: Protocol development was informed by our previous research, which explored the perspectives of 23 people living with aphasia about best practice aphasia services. Individuals with lived experience of aphasia participated as expert panel members in our three consensus meetings. We received support from consumer advisory networks associated with the Centre for Research Excellence in Aphasia Rehabilitation and Recovery and the Queensland Aphasia Research Centre.

'A Meaningful Difference, but Not Ultimately the Difference I Would Want': A Mixed-Methods Approach to Explore and Benchmark Clinically Meaningful Changes in Aphasia Recovery.

INTRODUCTION: Outcome measurement instruments (OMIs) are used to gauge the effects of treatment. In post-stroke aphasia rehabilitation, benchmarks for meaningful change are needed to support the interpretation of patient outcomes. This study is part of a research programme to establish minimal important change (MIC) values (the smallest change above which patients perceive themselves as importantly changed) for core OMIs. As a first step in this process, the views of people with aphasia and clinicians were explored, and consensus was sought on a threshold for clinically meaningful change. METHODS: Sequential mixed-methods design was employed. Participants included people with post-stroke aphasia and speech pathologists. People with aphasia were purposively sampled based on time post-stroke, age and gender, whereas speech pathologists were sampled according to their work setting (hospital or community). Each participant attended a focus group followed by a consensus workshop with a survey component. Within the focus groups, experiences and methods for measuring meaningful change during aphasia recovery were explored. Qualitative data were transcribed and analysed using reflexive thematic analysis. In the consensus workshop, participants voted on thresholds for meaningful change in core outcome constructs of language, communication, emotional well-being and quality of life, using a six-point rating scale (much worse, slightly worse, no change, slightly improved, much improved and completely recovered). Consensus was defined a priori as 70% agreement. Voting results were reported using descriptive statistics. RESULTS: Five people with aphasia (n = 4, > 6 months after stroke; n = 5, < 65 years; n = 3, males) and eight speech pathologists (n = 4, hospital setting; n = 4, community setting) participated in one of four focus groups (duration: 92-112 min). Four themes were identified describing meaningful change as follows: (1) different for every single person; (2) small continuous improvements; (3) measured by progress towards personally relevant goals; and (4) influenced by personal factors. 'Slightly improved' was agreed as the threshold of MIC on the anchor-rating scale (75%-92%) within 6 months of stroke, whereas after 6 months there was a trend towards supporting 'much improved' (36%-66%). CONCLUSION: Our mixed-methods research with people with aphasia and speech pathologists provides novel evidence to inform the definition of MIC in aphasia rehabilitation. Future research will aim to establish MIC values for core OMIs. PATIENT OR PUBLIC CONTRIBUTION: This work is the result of engagement between people with lived experience of post-stroke aphasia, including people with aphasia, family members, clinicians and researchers. Engagement across the research cycle was sought to ensure that the research tasks were acceptable and easily understood by participants and that the outcomes of the study were relevant to the aphasia community. This engagement included the co-development of a plain English summary of the results. Advisors were remunerated in accordance with Health Consumers Queensland guidelines. Interview guides for clinicians were piloted by speech pathologists working in aphasia rehabilitation.

Comprehensive quality assessment for aphasia rehabilitation after stroke: protocol for a multicentre, mixed-methods study.

INTRODUCTION: People with aphasia following stroke experience disproportionally poor outcomes, yet there is no comprehensive approach to measuring the quality of aphasia services. The Meaningful Evaluation of Aphasia SeRvicES (MEASuRES) minimum dataset was developed in partnership with people with lived experience of aphasia, clinicians and researchers to address this gap. It comprises sociodemographic characteristics, quality indicators, treatment descriptors and outcome measurement instruments. We present a protocol to pilot the MEASuRES minimum dataset in clinical practice, describe the factors that hinder or support implementation and determine meaningful thresholds of clinical change for core outcome measurement instruments. METHODS AND ANALYSIS: This research aims to deliver a comprehensive quality assessment toolkit for poststroke aphasia services in four studies. A multicentre pilot study (study 1) will test the administration of the MEASuRES minimum dataset within five Australian health services. An embedded mixed-methods process evaluation (study 2) will evaluate the performance of the minimum dataset and explore its clinical applicability. A consensus study (study 3) will establish consumer-informed thresholds of meaningful change on core aphasia outcome constructs, which will then be used to establish minimal important change values for corresponding core outcome measurement instruments (study 4). ETHICS AND DISSEMINATION: Studies 1 and 2 have been registered with the Australian and New Zealand Clinical Trial Registry (ACTRN12623001313628). Ethics approval has been obtained from the Royal Brisbane and Women's Hospital (HREC/2023/MNHB/95293) and The University of Queensland (2022/HE001946 and 2023/HE001175). Study findings will be disseminated through peer-reviewed publications, conference presentations and engagement with relevant stakeholders including healthcare providers, policy-makers, stroke and rehabilitation audit and clinical quality registry custodians, consumer support organisations, and individuals with aphasia and their families.

Acute post-stroke aphasia management: An implementation science study protocol using a behavioural approach to support practice change.

BACKGROUND: Evidence should guide decisions in aphasia practice across the continuum of stroke care; however, evidence-practice gaps persist. This is particularly pertinent in the acute setting where 30% of people with stroke will have aphasia, and speech pathologists experience many challenges implementing evidence-based practice. This has important consequences for people with aphasia and their close others, as well as speech pathologists working in acute settings. AIMS: This study protocol details how we will target practice change using a behavioural approach, with the aim of promoting the uptake of synthesized evidence in aphasia management post-stroke in the acute hospital setting. METHODS & PROCEDURES: We will conduct a mixed-methods before-and-after study following the Knowledge-to-Action (KTA) framework. Researchers, speech pathologists and people with lived experience of aphasia will collaborate to identify and prioritize practice gaps, and develop and implement changes to clinical practice based on the Theoretical Domains Framework and Behaviour Change Wheel. DISCUSSION: This study may provide a template for acute stroke services in how to use an implementation science approach to promote the application of synthesized evidence into routine clinical practice to ensure people with aphasia receive high-quality services. Collaboration among researchers, healthcare providers, people with aphasia and their close others ensures that the identification and targeting of practice gaps are driven by theory, lived experience and the local context. WHAT THIS PAPER ADDS: What is already known on this subject Synthesized evidence, such as clinical guidelines and consensus statements, provides the highest level of evidence to inform clinical practice, yet discrepancies between delivered care and evidence remain. This discrepancy is of note in the acute setting where clinicians report many challenges implementing the best available evidence, combined with a high proportion of people with stroke who will have aphasia (30%). There are many reasons why evidence is not put into practice, and efforts to change clinical practice need to consider these barriers when developing interventions. What this paper adds to existing knowledge This study protocol details an implementation science approach to affect clinical practice change, informed by a collaboration of key stakeholders (researchers, speech pathologists, and people with aphasia and their close others). Protocol papers that focus on bridging the gap between evidence and practice are uncommon in communication disorders; moreover, explicit prioritization of practice gaps is a critical but often overlooked aspect of promoting evidence-based practice. What are the potential or actual clinical implications of this work? This protocol provides insights into how one study site identified and prioritized evidence-practice gaps using a participatory approach. We provide insights into how clinical practice change may occur by describing how we plan to identify priority evidence-practice gaps and develop an intervention to improve the use of aphasia evidence in routine practice. This protocol aims to share an implementation science approach to service improvement that may be replicated across other services.