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The ‘Better Conversations with Primary Progressive Aphasia (BCPPA)’ program for people with PPA (Primary Progressive Aphasia): Protocol for a randomised controlled pilot study

Volkmer, ALP; Spector, A; Warren, J; Beeke, S; (2018) The ‘Better Conversations with Primary Progressive Aphasia (BCPPA)’ program for people with PPA (Primary Progressive Aphasia): Protocol for a randomised controlled pilot study. Pilot and Feasibility Studies , 4 , Article 158. 10.1186/s40814-018-0349-6. Green open access

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Abstract

Background: Primary progressive aphasia is a language-led dementia, often associated with frontotemporal dementia. It presents as insidious deterioration of language skills (e.g. naming objects and understanding complex sentences), with relative sparing of cognitive skills initially. There is little research examining the effectiveness of communication skills training for primary progressive aphasia, yet speech and language therapists (SLTs) report regularly using this in clinical practice. ‘Better Conversations with Primary Progressive Aphasia’ has potential to reduce barriers and increase facilitators to conversation and consequently improve confidence in communication and quality of life for people living with primary progressive aphasia and their conversation partners. The aim of this pilot study is to examine the feasibility of running a trial of the ‘Better Conversations with Primary Progressive Aphasia’ intervention. Methods: A single blind, randomised controlled pilot study will recruit 42 participants with primary progressive aphasia and their conversation partners across seven UK National Health Service Trusts. Participants will be randomised on a 1:1 basis, stratified by site, to receive either the ‘Better Conversations with Primary Progressive Aphasia’ intervention (21 couples) or no speech and language therapy treatment (21 couples). Participants are recruited by SLTs who will conduct pre-intervention assessment (week 1) and deliver the intervention (weeks 2 to 5). Junior researchers, who are blinded to allocation, will complete post-intervention measures (week 6). SLTs complete 9 h of training to prepare them to deliver the intervention. The primary objective of the study is to establish for a phase III effectiveness study whether the program can be delivered as intended in a UK National Health Service setting. Specifically, it will establish (1) the acceptability of randomisation, (2) an assessment of treatment fidelity to determine necessary levels of SLT training, (3) the most appropriate primary outcome measure, (4) sample size requirements, (5) predicted patient recruitment and retention rates and (6) refined inclusion criteria. Discussion: Insights from this study will be of relevance to guide development of future research and in particular, trials of therapeutic interventions in PPA, as well as for clinical care for this population. Trial registration: Retrospectively registered 28/02/2018 ISRCTN10148247.

Type: Article
Title: The ‘Better Conversations with Primary Progressive Aphasia (BCPPA)’ program for people with PPA (Primary Progressive Aphasia): Protocol for a randomised controlled pilot study
Open access status: An open access version is available from UCL Discovery
DOI: 10.1186/s40814-018-0349-6
Publisher version: https://doi.org/10.1186/s40814-018-0349-6
Language: English
Additional information: Copyright © The Author(s) 2018. Open Access. This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/ publicdomain/ zero/ 1.0/) applies to the data made available in this article, unless otherwise stated.
Keywords: Primary progressive aphasia, Conversation, Dementia, Speech and language therapy, Communication skills training
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Clinical, Edu and Hlth Psychology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Language and Cognition
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Neurodegenerative Diseases
URI: https://discovery.ucl.ac.uk/id/eprint/10057017
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