Document Type
Article
Publication Date
10-8-2021
Publication Title
Aphasiology
Keywords
Stroke, aphasia, individual participant data, speech and language therapy, rehabilitation reporting standards
ISSN
0268-7038
Volume
36
Issue/No.
4
First Page
513
Last Page
533
Abstract
Background
Collation of aphasia research data across settings, countries and study designs using big data principles will support analyses across different language modalities, levels of impairment, and therapy interventions in this heterogeneous population. Big data approaches in aphasia research may support vital analyses, which are unachievable within individual trial datasets. However, we lack insight into the requirements for a systematically created database, the feasibility and challenges and potential utility of the type of data collated.
Aim
To report the development, preparation and establishment of an internationally agreed aphasia after stroke research database of individual participant data (IPD) to facilitate planned aphasia research analyses.
Methods
Data were collated by systematically identifying existing, eligible studies in any language (≥10 IPD, data on time since stroke, and language performance) and included sourcing from relevant aphasia research networks. We invited electronic contributions and also extracted IPD from the public domain. Data were assessed for completeness, validity of value-ranges within variables, and described according to pre-defined categories of demographic data, therapy descriptions, and language domain measurements. We cleaned, clarified, imputed and standardised relevant data in collaboration with the original study investigators. We presented participant, language, stroke, and therapy data characteristics of the final database using summary statistics.
Results
From 5256 screened records, 698 datasets were potentially eligible for inclusion; 174 datasets (5928 IPD) from 28 countries were included, 47/174 RCT datasets (1778 IPD) and 91/174 (2834 IPD) included a speech and language therapy (SLT) intervention. Participants’ median age was 63 years (interquartile range [53, 72]), 3407 (61.4%) were male and median recruitment time was 321 days (IQR 30, 1156) after stroke. IPD were available for aphasia severity or ability overall (n = 2699; 80 datasets), naming (n = 2886; 75 datasets), auditory comprehension (n = 2750; 71 datasets), functional communication (n = 1591; 29 datasets), reading (n = 770; 12 datasets) and writing (n = 724; 13 datasets). Information on SLT interventions were described by theoretical approach, therapy target, mode of delivery, setting and provider. Therapy regimen was described according to intensity (1882 IPD; 60 datasets), frequency (2057 IPD; 66 datasets), duration (1960 IPD; 64 datasets) and dosage (1978 IPD; 62 datasets).
Discussion
Our international IPD archive demonstrates the application of big data principles in the context of aphasia research; our rigorous methodology for data acquisition and cleaning can serve as a template for the establishment of similar databases in other research areas.
Additional Comments
RELEASE Collaborators include Jacqueline Hinckley. Please visit publishers site via DOI to see full list of authors.
Creative Commons License
This work is licensed under a Creative Commons Attribution 4.0 International License.
NSUWorks Citation
RELEASE Collaborators and Hinckley, Jackie, "Utilising a systematic review-based approach to create a database of individual participant data for meta- and network meta-analyses: the RELEASE database of aphasia after stroke" (2021). HPD Articles. 216.
https://nsuworks.nova.edu/hpd_facarticles/216
ORCID ID
DOI
10.1080/02687038.2021.1897081
Copyright
© 2021 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
Comments
Open Access funding provided by the Qatar National Library.
This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research [14/04/22], and The Tavistock Trust for Aphasia and will be published in full in the Health Services and Delivery Research Journal. Further information is available at www.journalslibrary.nihr.ac.u/programmes/hsdr/140422#/NMAHPRU. NMAHPRU and MCB is funded by the Chief Scientist Office (CSO), Scottish Government Health and Social Care Directorates. The views expressed are those of the authors and not necessarily those of the funders.