Sarah J. Wallace

Measuring outcomes in aphasia research: A review of current practice and an agenda for standardisation

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 measurement. Potential benefits of COSs include easier comparison and combination of research outcomes, improved quality of systematic reviews and greater transparency in research reporting. The use of broad stakeholder consultation also supports the development of research outcomes that are meaningful. It is proposed that a COS for aphasia treatment research could be developed in three stages. First, consensus-based techniques would be used to reach international agreement on the outcomes that are most important to stakeholders. Second, a systematic review and meta-analysis of outcome instruments would provide synthesised evidence to support the choice of tools to most effectively capture the effects of aphasia treatments. Third, final agreement on a COS would be sought through an international consensus conference. Conclusions: There is an identified need for standardisation in the way outcomes are selected and measured in aphasia treatment research. COS development may provide an effective, consensus-based solution to this need.

Which outcomes are most important to people with aphasia and their families? an international nominal group technique study framed within the ICF

Abstract 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.

Which treatment outcomes are most important to aphasia clinicians and managers? An international e-Delphi consensus study

ABSTRACT 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. Aims: 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 question, “In your opinion, what are the most important outcomes (results) from aphasia treatment?” Responses were analysed using inductive content analysis. In rounds 2 and 3, 153 and 137 participants respectively rated the importance of each outcome generated in round 1 using a nine-point rating scale. Outcomes reaching predefined consensus criteria were further analysed using the International Classification of Functioning Disability and Health (ICF) coding. Outcomes & Results: Analysis of round 1 participant responses produced 1709 codes, which were condensed into 90 subcategories, 25 categories, and 4 themes. In rounds 2 and 3, a total of 51 outcomes reached consensus. The two outcomes with the highest levels of consensus both related to communication between the person with aphasia and their family/carers/significant others. Outcomes relating to people with aphasia most frequently linked to the ICF activity/participation component (52%), whilst outcomes relating to family/carers/significant others were evenly divided between the ICF activity/participation component (36%) and environmental factors (36%). Conclusions: Consensus was reached on 51 essential aphasia treatment outcomes. Very high levels of consensus (97–99%) between clinicians were achieved for outcomes relating to communication between the person with aphasia and their communication partner/s, suggesting that in the clinical environment improved dyadic communicative interaction is an important indicator of treatment success. The high proportion of outcomes linking to the ICF activity/participation component highlights the importance of measuring outcomes beyond impairment, both in clinical and research settings. These findings will be combined with other stakeholder perspectives and a systematic review of outcome measures to develop a COS for aphasia treatment research.

Core outcomes in aphasia treatment research: an e-Delphi consensus study of international aphasia researchers

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.

A good outcome for aphasia

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. Brady et al. (2014), writing on behalf of the Collaboration of Aphasia Trialists, lend support to our call for standardisation in aphasia research outcome measurement. In doing so, they highlight the importance of a co-ordinated effort which not only seeks to achieve agreement on core outcomes, but also on common data elements and reporting standards. We concur that a harmonised approach to improving aphasia research is essential, both in fostering stronger ties within our research community and in avoiding duplication of effort and wasted resources. Furthermore, we agree that the standardisation of outcome constructs and outcome measures is only one piece of the puzzle. Brady and associates present the NINDS Common Data Element Project as a model for standardising and streamlining research through the identification and recommendation of common data elements. While this model includes recommendations for outcome measures, it also seeks to standardise data elements more broadly in areas such as patient demographics, medical history and assessment/examination and intervention/treatment data. Our project to develop a core outcome set (COS) could therefore be considered to be one component of this broader framework of research data standardisation. Brady and associates also emphasise the need for research reporting standards to reduce the risk of reporting bias and encourage transparency and improved data quality. We wholeheartedly agree that reporting standards are a necessary and logical next step in improving

The World Report on Disability as a blueprint for international, national, and local aphasia services.

Abstract This commentary aims to extend the debate of the lead article authors (60) 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.

Using the International Classification of Functioning, Disability, and Health to identify outcome domains for a core outcome set for aphasia: a comparison of stakeholder perspectives

Abstract Purpose: 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. Materials and methods: 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. Results: 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. Conclusions: 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.

Discourse measurement in aphasia research: have we reached the tipping point? A core outcome set … or greater standardisation of discourse measures?

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 advocates of the need for greater standardisation in research outcome measurement having recently completed a programme of research (known as ROMA: Improving Research Outcome Measurement in Aphasia) to develop a COS for aphasia treatment research (Wallace, Worrall, Le Dorze, & Rose, 2017; Wallace, Worrall, Rose, & Le Dorze, 2014a, 2014b, 2016a, 2016b; Wallace, Worrall, Rose, Le Dorze, & Brandenburg, 2017; Wallace et al., 2016). While we support the principles underlying the proposed endeavour, we question whether another COS is needed or whether efforts are better directed towards standardisation and validation of discourse outcome measures to allow them to be considered for inclusion within the existing ROMA COS.

Aphasia education: speech-language pathologists’ perspectives regarding current and optimal practice

ABSTRACT 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 and participation in healthcare decision-making. Best practice recommendations state that education about aphasia should be tailored, aphasia-friendly, and provided on multiple occasions and in a variety of formats. To date, there has been little research examining the current practices of speech-language pathologists (SLPs) in the provision of education or their perspectives on barriers and facilitators to achieving optimal aphasia education practices. Aims: The aim of this study was to explore current and optimal aphasia education practices from the perspective of Australian SLPs. Methods and Procedures: This study used a cross-sectional survey design, comprising both quantitative and qualitative questions. An online survey was distributed to Australian SLPs via professional networks. Quantitative data were analysed using descriptive statistics and qualitative data using content analysis. Outcomes and Results: This study reports data from 130 Australian SLPs. The majority of SLPs (>70%) reported that they provided information to both PWA and PWA-F about (1) the definition of aphasia, (2) characteristics of aphasia, (3) causes of aphasia, (4) aphasia recovery, (5) strategies to assist communication, and (6) coping strategies. However, the majority of SLPs reported that they did not provide information to friends on any of the presented topics. Many SLPs (>95%) provided both face-to-face and written aphasia information, and approximately half (55%) provided aphasia education that could be accessed via the Internet. All but one SLP reported using pre-prepared written information and less than half (45%) considered those materials to be formatted in an aphasia-friendly way. The majority of SLPs (65%) reported that they did not have a systematic approach to providing aphasia education, they (82%) did not evaluate the effectiveness of aphasia education, and they (92%) did not provide optimal aphasia education. SLPs reported that greater access to aphasia-friendly formatted information (94%) and written information for family members (92%) would assist in optimising aphasia education. Furthermore, 82% of SLPs indicated that they would support an Australia-wide move to use the term aphasia, rather than dysphasia. Conclusions: The majority of SLPs reported providing information to PWA and PWA-F in a variety of formats; however, information provision did not commonly extend to friends. Increased tailoring of information and access to aphasia-friendly information would assist SLPs in meeting best practice recommendations for aphasia education.

Let’s call it “aphasia”: Rationales for eliminating the term “dysphasia”

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.