We have developed a communication partner training program for people with Primary Progressive Aphasia (PPA) and their conversation partners called Better Conversations with PPA (BCPPA).
This article describes a randomised controlled pilot study (that is currently underway) comparing BCPPA to no treatment.
This is the first randomised controlled UK pilot study of a communication partner training intervention for people with PPA and their families.
The BCPPA program and training materials will ultimately be made available to speech and language therapists (SLTs) via UCL’s public e-learning platform, alongside Better Conversations with Aphasia (BCA) at https://extend.ucl.ac.uk/.
Conversation training interventions (also known as communication partner training) have been widely used by SLTs working with people with PPA across the UK. At present there is little evidence to support their effectiveness, highlighting a gap in the research literature. BCPPA has been developed to meet the needs of people with PPA and their families using data collected from a UK wide survey of SLTs working with people with PPA, a systematic review of the research literature on functional communication focused interventions for people with PPA, advice from expert SLTs who participated in a Nominal Group Consensus exercise to prioritise the content of the program and from focus groups held with people with PPA and their families. This article describes the protocol for a randomised controlled pilot study that is currently underway comparing BCPPA to no treatment. The study aims to recruit 42 couples to participate in the study over 18 months, across 7 NHS sites in England. Participants who meet the inclusion criteria will be recruited by local speech and language therapist from their current caseloads. These SLTs have been trained to complete the pre-intervention measures and deliver the BCPPA intervention. If the potential participants consent they will participate in a series of outcome measures including making video recordings of themselves having conversations and a series of questionnaires on quality of life and the impact of the communication difficulties (both the person with PPA and their partners participate in these), additionally the person with PPA completes a language assessment with their SLT. Once this has been completed the participants are randomly allocated to receive either the 4-week BCPPA treatment (4 one-hour therapy sessions, delivered once per week), or no treatment for the same period. After this junior researchers (blinded to what condition the participants have been randomised to) will be seeing the participants to complete the same battery of measures. This should take a total of seven weeks. The local SLTs delivering the intervention have been asked to video and audio record themselves delivering all the intervention, so that the fidelity of intervention delivery can be evaluated. The local SLTs will also complete an adherence questionnaire, and the participants will be asked to complete an anonymous feedback questionnaire after every BCPPA therapy session. All the data will be collected and analysed to provide information about the most appropriate outcome measures, acceptability of randomisation, recruitment and retention of participants, fidelity of treatment delivery, sample size requirements and inclusion criteria for a future full trial.
Watch this space for our publications on the results of the study! We will be publishing them in peer reviewed journals, but will be sharing them with groups such as the PPA support group (branch of the Rare Dementias Support Group based at UCL; http://www.raredementiasupport.org/) as soon as we can!
And here is the link to the full article:
Volkmer, A., Spector, A., Warren, J. D., & 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(1), 158.