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

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 i...

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Main Authors: Anna Volkmer, Aimee Spector, Jason D Warren, Suzanne Beeke
Format: Article
Language:English
Published: BMC 2018-10-01
Series:Pilot and Feasibility Studies
Subjects:
Online Access:http://link.springer.com/article/10.1186/s40814-018-0349-6
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spelling doaj-89cb7b5c229e4b37ab7568f394bdbee12020-11-25T01:50:29ZengBMCPilot and Feasibility Studies2055-57842018-10-014111010.1186/s40814-018-0349-6The ‘Better Conversations with Primary Progressive Aphasia (BCPPA)’ program for people with PPA (Primary Progressive Aphasia): protocol for a randomised controlled pilot studyAnna Volkmer0Aimee Spector1Jason D Warren2Suzanne Beeke3Division of Psychology and Language Sciences, Language and Cognition, University College LondonDivision of Psychology and Language Sciences, Department of Clinical, Educational and Health Psychology, UCLDepartment of Neurodegenerative Disease, Dementia Research Centre, UCL Institute of NeurologyDivision of Psychology and Language Sciences, Language and Cognition, University College LondonAbstract 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 ISRCTN10148247http://link.springer.com/article/10.1186/s40814-018-0349-6Primary progressive aphasiaConversationDementiaSpeech and language therapyCommunication skills training
collection DOAJ
language English
format Article
sources DOAJ
author Anna Volkmer
Aimee Spector
Jason D Warren
Suzanne Beeke
spellingShingle Anna Volkmer
Aimee Spector
Jason D Warren
Suzanne Beeke
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
Primary progressive aphasia
Conversation
Dementia
Speech and language therapy
Communication skills training
author_facet Anna Volkmer
Aimee Spector
Jason D Warren
Suzanne Beeke
author_sort Anna Volkmer
title The ‘Better Conversations with Primary Progressive Aphasia (BCPPA)’ program for people with PPA (Primary Progressive Aphasia): protocol for a randomised controlled pilot study
title_short The ‘Better Conversations with Primary Progressive Aphasia (BCPPA)’ program for people with PPA (Primary Progressive Aphasia): protocol for a randomised controlled pilot study
title_full The ‘Better Conversations with Primary Progressive Aphasia (BCPPA)’ program for people with PPA (Primary Progressive Aphasia): protocol for a randomised controlled pilot study
title_fullStr The ‘Better Conversations with Primary Progressive Aphasia (BCPPA)’ program for people with PPA (Primary Progressive Aphasia): protocol for a randomised controlled pilot study
title_full_unstemmed The ‘Better Conversations with Primary Progressive Aphasia (BCPPA)’ program for people with PPA (Primary Progressive Aphasia): protocol for a randomised controlled pilot study
title_sort ‘better conversations with primary progressive aphasia (bcppa)’ program for people with ppa (primary progressive aphasia): protocol for a randomised controlled pilot study
publisher BMC
series Pilot and Feasibility Studies
issn 2055-5784
publishDate 2018-10-01
description 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
topic Primary progressive aphasia
Conversation
Dementia
Speech and language therapy
Communication skills training
url http://link.springer.com/article/10.1186/s40814-018-0349-6
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