Better Conversations with Primary Progressive Aphasia (BCPPA)
Research type
Research Study
Full title
Better Conversations with Primary Progressive Aphasia (BCPPA): Communication training to keep families together.
IRAS ID
202353
Contact name
SUZANNE BEEKE
Contact email
Sponsor organisation
UCL
Clinicaltrials.gov Identifier
Z6364106/2016/11/04 social research, Data Protection Registration
Duration of Study in the UK
2 years, 7 months, 1 days
Research summary
Certain variants of early-onset dementia, called primary progressive aphasia (PPA), initially present only as language difficulties. Speech and language therapists (SLTs) in the UK report using a variety of communication training approaches to support people with PPA.
This project consists of three stages: 1. A survey of current speech and language therapy practices and review of the literature; 2. Intervention refinement and manualisation; and 3. A controlled pilot study. The BCPPA program aims to improve communication strategies, self-efficacy, well-being and quality of life. The intervention currently comprises four sessions where the SLT supports the dyad to identify facilitators and barriers to conversation through the use of video feedback. Together the SLT and the dyad (person with PPA and their conversation partner-CP)practice strategies to improve communication.
This application describes stages 2 and 3 (stage 1 did not require ethical approval):
Stage 2: A series of video-recorded focus groups will be conducted, with people with PPA and their CPs, to gather information on what they feel should be included in the Better Conversations with PPA (BCPPA) program. The information collected from the focus groups will contribute to the further refinement of the program for people with PPA.
Stage 3: The BCPPA program will be piloted with 42 dyads, across the participating NHS sites. Having given consent to being video recorded participants will be randomly allocated to receive either BCPPA or no treatment. In line with the Medical Research Council Complex Interventions Guidance, the pilot study will define delivery and intervention (length and fidelity), gather information on recruitment and retention issues and the outcome measures for a main trial. Language, communication and quality of life measures will be completed with participants’ pre- and post- intervention. Pre-intervention these will be completed by the local collaborator (SLT) delivering the intervention. Post-intervention these will be completed by an assessor, blind to the groups.
The research protocol has been developed under supervision from Dr Suzanne Beeke and Dr Aimee Spector. It has been reviewed by the NIHR Doctoral Research Fellowship assessor panel.
REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
17/LO/0357
Date of REC Opinion
26 Apr 2017
REC opinion
Further Information Favourable Opinion