Protocol for the development of the international population registry for aphasia after stroke (I-PRAISE)

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Protocol for the development of the international population registry for aphasia after stroke (I-PRAISE)

Ali, M (författare): NMAHP Research Unit, Glasgow Caledonian University, Glasgow, UK

Ben Basat, A Lifshitz (författare): Department of Communication Disorders, Ariel University, Ariel, Israel

Berthier, M (författare): Cognitive Neurology and Aphasia Unit, Centro De Investigaciones Médico-Sanitarias, Instituto De Investigación Biomédica De Málaga (IBIMA), University of Malaga, Malaga, Spain

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Blom Johansson, Monica, 1965- (författare): Uppsala universitet,Blom Johansson: Logopedi,Forskning om funktionshinder och habilitering

Breitenstein, C (författare): Dept. Of Neurology with Institute of Translational Neurology, University of Muenster, Germany

Cadilhac, D A (författare): Department of Medicine, School of Clinical Sciences at Monash Health, Monash University, Australia

Constantinidou, F (författare): Department of Psychology and Center for Applied Neuroscience, University of Cyprus Nicosia, Cyprus

Cruice, M (författare): City, University of London, London, UK

Davila, G (författare): Cognitive Neurology and Aphasia Unit, Centro De Investigaciones Médico-Sanitarias, Instituto De Investigación Biomédica De Málaga (IBIMA), University of Malaga, Malaga, Spain Area of Psychobiology, Faculty of Psychology and Speech Therapy, University of Malaga, Malaga, Spain

Gandolfi, M (författare): Department of Neurosciences, Biomedicine and Movement Sciences, University of Verona, Verona, Italy

Gil, M (författare): Department of Communication Disorders, Loewenstein Rehabilitation Hospital, Israel

Grima, R (författare): Department of Communication Therapy, Faculty of Health Sciences, University of Malta Imsida, Malta

Godecke, E (författare): School of Medical and Health Sciences, Edith Cowan University, Australia; Speech Pathology Department, Sir Charles Gairdner Hospital, Australia & Centre for Research Excellence in Aphasia Recovery and Rehabilitation, Melbourne, Australia

Jesus, L (författare): School of Health Sciences (ESSUA) and Institute of Electronics and Informatics Engineering of Aveiro (IEETA), University of Aveiro, Portugal

Jiminez, L Martinez (författare): Universidad De Talca, Talca, Chile

Kambanaros, M (författare): Allied Health and Human Performance, University of South Australia, Adelaide South, Australia

Kukkonen, T (författare): Department of ENT/Phoniatry, Pirkanmaa Hospital District, Tampere University Hospital, Tampere, Finland

Laska, A (författare): Karolinska Institutet

Mavis, I (författare): Speech and Language Therapy Department, Anadolu University, Eskişehir, Turkey

Mc Menamin, R (författare): Discipline of Speech and Language Therapy, School of Health Sciences, National University of Ireland, Galway, Ireland

Mendez-Orellana, C (författare): Carrera De Fonoaudiología, Departamento Ciencias De La Salud, Facultad De Medicina, Pontificia Universidad Católica De Chile, Santiago- Chile

Obrig, H (författare): Clinic for Cognitive Neurology, University Hospital Leipzig & MPI for Human Cognitive and Brain Sciences, Leipzig, Germany

Ostberg, P (författare): Karolinska Institutet

Robson, H (författare): Psychology and Language Sciences, University College London, London, UK

Sage, K (författare): Department of Nursing, Faculty of Health, Psychology and Social Care, Manchester Metropolitan University UK

Van De Sandt-Koenderman, M (författare): Dept of Rehabilitation Medicine, Rijndam Rehabilitation Centre & Erasmus MC, Rotterdam, The Netherlands

Sprecht, K (författare): Department of Biological and Medical Psychology, Faculty of Psychology, University of Bergen, Bergen Norway

Visch-Brink, E (författare): Department of Neurology and Neurosurgery, Erasmus University Medical Center, Rotterdam, Netherlands

Wehling, E (författare): Department of Physical Medicine and Rehabilitation, Haukeland University Hospital, Bergen, Norway

Wielaert, S (författare): Dept of Rehabilitation Medicine, Rijndam Rehabilitation Centre & Erasmus MC, Rotterdam, The Netherlands

Wallace, S J (författare): Queensland Aphasia Research Centre, School of Health and Rehabilitation Sciences, the University of Queensland, Brisbane, Australia

Williams, L J (författare): Usher Institute, University of Edinburgh, UK

Brady, M C (författare): NMAHP Research Unit, Glasgow Caledonian University, Glasgow, UK

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2021-06-27
2022
Engelska.
Ingår i: Aphasiology. - : Informa UK Limited. - 0268-7038 .- 1464-5041. ; 36:4, s. 534-554

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Background: We require high-quality information on the current burden, the types of therapy and resources available, methods of delivery, care pathways and long-term outcomes for people with aphasia.Aim: To document and inform international delivery of post-stroke aphasia treatment, to optimise recovery and reintegration of people with aphasia.Methods & Procedures: Multi-centre, prospective, non-randomised, open study, employing blinded outcome assessment, where appropriate, including people with post-stroke aphasia, able to attend for 30 minutes during the initial language assessment, at first contact with a speech and language therapist for assessment of aphasia at participating sites. There is no study-mandated intervention. Assessments will occur at baseline (first contact with a speech and language therapist for aphasia assessment), discharge from Speech and Language Therapy (SLT), 6 and 12-months post-stroke. Our primary outcome is changed from baseline in the Amsterdam Nijmegen Everyday Language Test (ANELT/Scenario Test for participants with severe verbal impairments) at 12-months post-stroke. Secondary outcomes at 6 and 12 months include the Therapy Outcome Measure (TOMS), Subjective Index of Physical and Social Outcome (SIPSO), Aphasia Severity Rating Scale (ASRS), Western Aphasia Battery Aphasia Quotient (WAB-AQ), stroke and aphasia quality of life scale (SAQoL-39), European Quality of Life Scale (EQ-5D), lesion description, General Health Questionnaire (GHQ-12), resource use, and satisfaction with therapy provision and success. We will collect demography, clinical data, and therapy content. Routine neuroimaging and medication administration records will be accessed where possible; imaging will be pseudonymised and transferred to a central reading centre. Data will be collected in a central registry. We will describe demography, stroke and aphasia profiles and therapies available. International individual participant data (IPD) meta-analyses will examine treatment responder rates based on minimal detectable change & clinically important changes from baseline for primary and secondary outcomes at 6 and 12 months. Multivariable meta-analyses will examine associations between demography, therapy, medication use and outcomes, considering service characteristics. Where feasible, costs associated with treatment will be reported. Where available, we will detail brain lesion size and site, and examine correlations with SLT and language outcome at 12 months.Conclusion: International differences in care, resource utilisation and outcomes will highlight avenues for further aphasia research, promote knowledge sharing and optimise aphasia rehabilitation delivery. IPD meta-analyses will enhance and expand understanding, identifying cost-effective and promising approaches to optimise rehabilitation to benefit people with aphasia.

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Protocol for the development of the international population registry for aphasia after stroke (I-PRAISE)

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