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

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

Trabalho com a linguagem e envelhecimento: uma busca por ressignificações de histórias de vida

Este estudo propõe-se a descrever as vivências de idosos participantes de uma Oficina de Linguagem (OL) que promove discussões orais e a escrita de narrativas autobiográficas. Trata-se de um relato de caso de uma pesquisa qualitativa realizada, por meio de uma entrevista semi-estruturada, com 10 idosos. Todos os sujeitos eram participantes da OL de uma Unidade de Saúde de Curitiba/PR. Os sujeitos relataram que, ao se inscreverem para participarem do grupo, não sabiam exatamente o que era a OL. Entretanto, o convite à escrita de suas histórias de vida os levou a se inscreverem na OL, assim como a necessidade que tinham da convivência em grupo, de compartilhar histórias com outros e incentivo mútuo. A experiência de narrar e escrever suas histórias de vida os fez ressignificar seus posicionamentos em relação ao outro, a eles próprios, bem como aos seus envelhecimentos e a sociedade em que estão inseridos. Por meio da OL, organizaram suas ideias e realizaram o sonho de infância de escrever. Acreditam que o material produzido na OL será lido pelas gerações futuras. Atribuem ao grupo papel fundamental de propiciar tais vivências por meio do apoio que seus membros oferecem uns aos outros. A OL desempenhou uma prática de trabalho de linguagem que proporcionou vivências subjetivas satisfatórias a sujeitos idosos em seus processos de envelhecimentos, promovendo a saúde e a qualidade de vida, no momento da velhice, bem como a realização de sonhos antigos e experiências que dotam a velhice de sentido

Active aging: an intervention-research report

ABSTRACT Purpose: this study aimed to analyze significant effects of language activities on elderly people´s autonomy and social participation. Methods: it is an intervention research report, based on a dialogical discourse perspective, developed in two stages. In the first, a speech-language intervention involving written and oral practices about life stories was carried out with six elderly participants. In the second, a semi-structured interview was applied with these participants based on questions that addressed the aims of the study. Results: the participants were all females, aged between 61 and 90 years old. Their statements indicated that, through dialogical practices, they were able to increase their social participation, autonomy and self-esteem; they were also able to deconstruct stigmatizing social standards imposed to elderly people. Final Considerations: dialogical practices among the elderly can help promote active aging and overcome negative conceptions about elderly people, as proposed by the World Health Organization and the National Health Care Policy for the Elderly, which confirm that elderly people contribute to social development

Who participates in aphasia research? An analysis of the REhabilitation and recovery of peopLE with Aphasia after StrokE (RELEASE) data set

Ali M, Elders A, Godwin J, et al. Who participates in aphasia research? An analysis of the REhabilitation and recovery of peopLE with Aphasia after StrokE (RELEASE) data set. Aphasiology. 2019;32(sup1):2-4

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

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