Sarah J Wallace1, Linda Worrall1, Tanya Rose1, Guylaine Le Dorze2, Caterina Breitenstein3, Katerina Hilari4, Edna Babbitt5, Arpita Bose6, Marian Brady7, Leora R Cherney5, David Copland1, Madeline Cruice4, Pam Enderby8, Deborah Hersh9, Tami Howe10, Helen Kelly11, Swathi Kiran12, Ann-Charlotte Laska13, Jane Marshall4, Marjorie Nicholas14, Janet Patterson15, Gill Pearl16, Elizabeth Rochon17, Miranda Rose18, Karen Sage1, Steven Small19, Janet Webster20. 1. 1 School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia. 2. 2 School of Speech-Language Pathology and Audiology, University of Montreal, Montreal, Canada. 3. 3 Department of General Neurology with Institute of Translational Neurology, University of Münster, Münster, Germany. 4. 4 School of Health Sciences, City University of London, London, UK. 5. 5 Department of Physical Medicine and Rehabilitation, Feinberg School of Medicine, Northwestern University, Chicago, USA & Shirley Ryan AbilityLab, Chicago, USA. 6. 6 School of Psychology and Clinical Language Sciences, University of Reading, Reading, UK. 7. 7 Nursing, Midwifery and Allied Health Professionals Research Unit, Glasgow Caledonian University, Glasgow, UK. 8. 8 School of Health and Related Research, University of Sheffield, Sheffield, UK. 9. 9 School of Psychology and Social Science, Edith Cowan University, Perth, Australia. 10. 10 School of Audiology and Speech Sciences, University of British Columbia, Vancouver, Canada. 11. 11 School of Clinical Therapies, University College Cork, Cork, Republic of Ireland. 12. 12 Department of Speech, Language, and Hearing Sciences, Boston University, Boston, USA. 13. 13 Karolinska Institutet, Department of Clinical Sciences, Danderyd Hospital, Division of Internal Medicine, Stockholm, Sweden. 14. 14 School of Health and Rehabilitation Sciences, MGH Institute of Health Professions, Boston, USA. 15. 15 California State University East Bay, Hayward, USA. 16. 16 Speakeasy, UK. 17. 17 Department of Speech-Language Pathology, University of Toronto, Toronto, Canada. 18. 18 School of Allied Health, La Trobe University, Bundoora, Australia. 19. 20 Department of Neurology, University of California, Irvine, USA. 20. 21 School of Education, Communication and Language Sciences, Newcastle University, Newcastle Upon Tyne, UK.
Abstract
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 phases 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 wellbeing: 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 patient-reported satisfaction with treatment or impact of treatment (where no measures exist). DISCUSSION: Harmonization 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 phases I-IV aphasia treatment studies. This consensus statement has been endorsed by the Collaboration of Aphasia Trialists, the British Aphasiology Society, the German Society for Aphasia Research and Therapy, and the Royal College of Speech Language Therapists.
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 phases 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 wellbeing: 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 patient-reported satisfaction with treatment or impact of treatment (where no measures exist). DISCUSSION: Harmonization 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 phases I-IV aphasia treatment studies. This consensus statement has been endorsed by the Collaboration of Aphasia Trialists, the British Aphasiology Society, the German Society for Aphasia Research and Therapy, and the Royal College of Speech Language Therapists.
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