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Ayer — Mayo 14th 2024Tus fuentes RSS

COS-PPA: protocol to develop a core outcome set for primary progressive aphasia

Por: Volkmer · A. · Copland · D. A. · Henry · M. L. · Warren · J. D. · Varley · R. · Wallace · S. J. · Hardy · C. J.
Introduction

The term primary progressive aphasia (PPA) describes a group of language-led dementias. Disease-modifying treatments that delay, slow or reverse progression of PPA are currently lacking, though a number of interventions to manage the symptoms of PPA have been developed in recent years. Unfortunately, studies exploring the effectiveness of these interventions have used a variety of different outcome measures, limiting comparability. There are more constructs, apart from word retrieval, that are important for people with PPA that have not received much attention in the research literature. Existing core outcome sets (COS) for dementia and non-progressive aphasia do not meet the needs of people with PPA, highlighting a need to develop a specific COS for PPA.

Methods and analysis

This protocol describes a three-stage study to identify a COS for PPA interventions in research and clinical practice. The stage 1 systematic review will identify existing speech, language and communication measures used to examine the effectiveness of interventions for PPA in the research literature. Employing a nominal group technique, stage 2 will identify the most important outcomes for people with PPA and their families. The data collected in stages 1 and 2 will be jointly analysed with the project PPI group and will inform the stage 2 modified Delphi consensus study to identify a core outcome measurement set for PPA among a range of research disciplines undertaking intervention studies for people with PPA.

Ethics and dissemination

Ethical approval for stage 2 of the study has been sought individually in each country at collaborating institutions and is stated in detail in the manuscript. Stage 3 has been granted ethical approval by the Chairs of UCL Language and Cognition Department Ethics, Project ID LCD-2023-06. Work undertaken at stages 1, 2 and 3 will be published in open-access peer-reviewed journal articles and presented at international scientific conferences.

PROSPERO registration number

CRD42022367565.

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Cultural, sociopolitical, environmental and built assets supporting health and well-being in Torres Strait Island communities: protocol for a scoping review

Por: Webb · T. · Meldrum · K. · Kilburn · M. · Wallace · V. · Russell · S. · Quigley · R. · Strivens · E.
Introduction

Risks to an individual’s health should be considered alongside the environmental, sociocultural and sociopolitical context(s) in which they live. Environmental mapping is an approach to identifying enablers and barriers to health within a community. The Indigenous Indicator Classification System (IICS) framework has been used to map the environment in Australian Indigenous communities. The IICS is a four-level nested hierarchical framework with subject groups including culture, sociopolitical and built at the top of the hierarchy and indicators at the bottom. The objective of this scoping review is to map the cultural, sociopolitical, environmental and built assets that support health and well-being that exist in each Torres Strait Island community.

Methods and analysis

This review will be conducted according the Joanna Briggs Institute (JBI) method for scoping reviews. It will include sources that identify cultural, sociopolitical, environmental and built assets that support health and well-being that exist in each Torres Strait Island community. Databases to be searched include: Informit; Scopus; Web of Science; HealthInfoNet, BioOne Complete and Green File. Sources of unpublished and grey literature will be located using Google and Google Scholar. Searches will be limited to the English language and literature published since January 2018 to ensure that the assets mapped reflect current conditions on each island. Data that answers the research question will be extracted from sources and recorded in an adaptation of the IICS. Quantitative analysis of the data will include summing each asset for individual islands and their associated clusters. Data will be presented graphically, diagrammatically, or in tabular form depending on what approach best conveys its meaning.

Ethics and dissemination

The Far North Queensland Human Research Ethics Committee (reference HREC/2022/QCH/88 155-1624) has approved this study. Dissemination of the review’s findings will be led by Torres Strait Islander members of the research team through conferences and peer-reviewed publications.

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