Time for a step change? Improving the efficiency, relevance, reliability, validity and transparency of aphasia rehabilitation research through core outcome measures, a common data set and improved reporting criteria

Brady, Marian; Ali, Myzoon; Fyndanis, Chrysovalantis; Kambanaros, Maria; Grohmann, Kleanthes Κ.; Laska, Ann‐Charlotte; Hernández-Sacristán, Carlos; Varlokosta, Spyridoula

doi:10.1080/02687038.2014.930261

Cited by 27 publications

(15 citation statements)

References 19 publications

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“…Yet, outcome measures should not only capture meaningful or functionally relevant changes, but should also facilitate comparisons to other clinical trials and clinical populations; and inform meta-analyses and other synthesis approaches (Brady et al, 2014). Cross-cultural adaptation of key outcome measures can facilitate these comparisons.…”

Section: Discussionmentioning

confidence: 99%

Measuring quality of life in Dutch people with aphasia: development and psychometric evaluation of the SAQOL-39NL

et al. 2016

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Section: Discussionmentioning

confidence: 99%

Measuring quality of life in Dutch people with aphasia: development and psychometric evaluation of the SAQOL-39NL

et al. 2016

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“…The use of a COS does not preclude the measurement of additional outcomes, but rather represents the minimum outcomes that should be collected and reported (2). A COS for aphasia was developed in response to a trend of heterogeneous outcome measurement in research and the merits of this initiative were debated in a published forum in 2014 (3)(4)(5)(6)(7). The ROMA consensus statement was informed by a four-year program of research in three phases: (1) investigation of stakeholder-important outcomes using consensus processes (8)(9)(10)(11); (2) a scoping review to identify aphasia outcome measurement instruments (OMIs) and their psychometric properties (12); and (3) an international consensus meeting (results reported herein).…”

mentioning

confidence: 99%

A core outcome set for aphasia treatment research: The ROMA consensus statement

Wallace

Worrall

Rose

et al. 2018

International Journal of Stroke

154

100

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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 phase 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 well-being: 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 patientreported satisfaction with treatment or impact of treatment (where no measures exist). Discussion: Harmonisation 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 phase I-IV aphasia treatment studies. This consensus statement has been endorsed by the Collaboration of Aphasia Trialists, the British Aphasiology Society, the ROMA consensus panel

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“…Inadequate descriptions of participants in aphasia research has continued over an extended period of time (Brookshire, 1983;Roberts et al, 2003;Brady et al, 2014). In our more detailed approach to data retrieval, we extracted data from both published papers, unpublished sources of information and directly from the primary researchers.…”

Section: Discussionmentioning

confidence: 99%

“…Over the last three decades, there have been calls for greater consistency in participant descriptions in aphasia research (Brady et al, 2014;Brookshire, 1983;Hallowell, 2008;Roberts et al, 2003). Since 1983 audits of published papers have highlighted participant description inconsistencies across aphasia research reports (Brookshire, 1983).…”

Section: Introductionmentioning

confidence: 99%

Communicating simply, but not too simply: Reporting of participants and speech and language interventions for aphasia after stroke

2020

International Journal of Speech-Language Pathology

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Purpose: Speech and language pathology (SLP) for aphasia is a complex intervention delivered to a heterogeneous population within diverse settings. Simplistic descriptions of participants and interventions in research hinder replication, interpretation of results, guideline and research developments through secondary data analyses. This study aimed to describe the availability of participant and intervention descriptors in existing aphasia research datasets. Method: We systematically identified aphasia research datasets containing !10 participants with information on time since stroke and language ability. We extracted participant and SLP intervention descriptions and considered the availability of data compared to historical and current reporting standards. We developed an extension to the Template for Intervention Description and Replication checklist to support meaningful classification and synthesis of the SLP interventions to support secondary data analysis. Result: Of 11, 314 identified records we screened 1131 full texts and received 75 dataset contributions. We extracted data from 99 additional public domain datasets. Participant age (97.1%) and sex (90.8%) were commonly available. Prior stroke (25.8%), living context (12.1%) and socioeconomic status (2.3%) were rarely available. Therapy impairment target, frequency and duration were most commonly available but predominately described at group level. Home practice (46.3%) and tailoring (functional relevance 46.3%) were inconsistently available. Conclusion: Gaps in the availability of participant and intervention details were significant, hampering clinical implementation of evidence into practice and development of our field of research. Improvements in the quality and consistency of participant and intervention data reported in aphasia research are required to maximise clinical implementation, replication in research and the generation of insights from secondary data analysis. Systematic review registration: PROSPERO CRD42018110947

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Time for a step change? Improving the efficiency, relevance, reliability, validity and transparency of aphasia rehabilitation research through core outcome measures, a common data set and improved reporting criteria

Cited by 27 publications

References 19 publications

Measuring quality of life in Dutch people with aphasia: development and psychometric evaluation of the SAQOL-39NL

Measuring quality of life in Dutch people with aphasia: development and psychometric evaluation of the SAQOL-39NL

A core outcome set for aphasia treatment research: The ROMA consensus statement

Communicating simply, but not too simply: Reporting of participants and speech and language interventions for aphasia after stroke

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