Neurology · Medical Literature
'Better Conversations with Primary Progressive Aphasia and other rare dementias (BCPPA plus)' telehealth communication partner training programme: protocol for an NHS embedded randomised controlled feasibility and implementation study.
Abstract
Language and communication difficulties are common across a range of dementias including primary progressive aphasia (PPA). Better Conversations with PPA (BCPPA) is a co-designed communication partner training intervention that aims to improve the experience of conversations for a person with communication difficulties. An NHS-based pilot study of face-to-face BCPPA demonstrated positive outcomes but also raised questions about when and where this intervention should be delivered (at diagnosis or later; face to face and/or remotely), how to best measure the effectiveness of the intervention in line with participant's priorities and whether BCPPA might be acceptable and useful to people with a range of dementia types. We also had questions about the possible economic implications of BCPPA. In preparation for a future full effectiveness study, the present study will address the following questions: IMPLEMENTATION: What is the optimal schedule and dosage of BCPPA versus treatment as usual? What are the eligibility criteria for the BCPPA intervention? Is remote delivery of BCPPA acceptable to people with PPA and other dementias? Can the BCPPA be delivered remotely as intended? Do planned outcome measures show sensitivity to change pre-/post-/3 months post BCPPA? What are the barriers and facilitators to implementation of BCPPA in an NHS setting? What is the most appropriate perspective of analysis and way of measuring costs and outcomes in a future cost-effectiveness analysis of BCPPA versus usual care? In line with Medical Research Council guidance on development and management of complex interventions, Skivington et al, 2021 this protocol paper describes a phase II mixed-methods process evaluation and health economic study. This protocol for a randomised controlled pilot feasibility study compares the BCPPA communication partner training intervention with a deferred entry group for people with PPA and other rare dementias and their communication partners. Participants will be recruited at diagnosis and review appointments from two NHS trusts. Participants who have completed a repeated baseline measure will be randomised to either the BCPPA intervention or a deferred entry group. The intervention will be delivered remotely, via teletherapy, over 4-6 weeks depending on goal achievement. The deferred entry group will receive the intervention after a 6-week waiting period, and all participants will be assessed immediately post intervention and again at 3 months post intervention. Outcome measures have been selected in line with the current recommendations for a core outcome set for PPA and to address questions of implementation and health economic evaluation. Qualitative and quantitative analysis methods will be used to explore the data. Ethical approval for this study was granted by the Health Research Authority for England and Wales IRAS (Project ID: 341322 REC REF 24-NI-0123). Results from this study will be published in peer-reviewed journal articles and shared with participants and patient and public involvement advisors in accessible formats. ISRCTN16268666.
Clinical relevance
Is a telehealth-delivered communication partner training programme (BCPPA plus) feasible, acceptable, and appropriately implemented for people with primary progressive aphasia and other rare dementias within the NHS, and what implementation and health economic parameters are needed to inform a future full-scale effectiveness trial? __SNAPSHOT__ {"studyDesign":"Randomised controlled feasibility and implementation study (crossover waitlist-controlled design) embedded within the NHS; protocol paper only","setting":"NHS (National Health Service), United Kingdom; multi-site, exact number of sites not specified in abstract","sampleSize":"Target n=36 patient-communication partner dyads (intervention arm: 18 dyads, waitlist control arm: 18 dyads); based on ISRCTN registry entry consistent with this study phase","population":"Adults with a diagnosis of primary progressive aphasia (PPA) or other rare dementias with communication difficulties, who are able to participate online, and who have a willing and consenting communication partner (e.g., spouse, family member, friend)","intervention":"BCPPA plus: telehealth (video conferencing, Zoom)-delivered communication partner training comprising 4–6 weekly 1-hour sessions; includes conversation video-sampling, personalised strategy identification, goal-setting using Goal Attainment Scales, role play, and home practice tasks; adapted from the original face-to-face BCPPA programme and delivered by trained speech and language therapists","comparator":"Waitlist control (treatment as usual, including standard neurology and allied health input); waitlist participants subsequently cross over to receive BCPPA","primaryOutcome":"Feasibility and implementation outcomes including: recruitment and retention rates, eligibility criteria, optimal dosage and scheduling, acceptability of remote delivery, fidelity of telehealth delivery, appropriateness of outcome measures, and health economic parameters; clinical effectiveness is not a primary endpoint of this protocol-phase study","followUp":"Not reported in abstract; intervention duration 4–6 weeks per arm; maintenance follow-up timepoint not specified in available text","fundingSource":"National Institute for Health and Care Research (NIHR) fellowship awarded to lead investigator (Dr Anna Volkmer)"}
Key findings
This is a published protocol paper; no outcome data are reported. The study has not yet reported results on any primary or secondary endpoints. No effect sizes, p-values, confidence intervals, or NNT/NNH are available. The study is designed to answer pre-specified feasibility and implementation questions—including optimal scheduling, eligibility criteria, acceptability of telehealth delivery, fidelity, outcome measure selection, and health economic implications—in preparation for a future definitive effectiveness RCT. The ISRCTN registry entry (ISRCTN16268666) confirms a target enrolment of 36 patient-communication partner dyads, randomly allocated to immediate BCPPA or waitlist control, with assessments pre- and post-intervention. All quantitative findings are pending.
Practice implications
This paper reports a study protocol, not results, and therefore no clinical conclusions regarding the effectiveness or safety of BCPPA plus can yet be drawn. The rationale for this study is well-grounded: the preceding NHS pilot RCT of face-to-face BCPPA (Volkmer et al., 2023) demonstrated acceptability and high treatment fidelity (87.2%) in 18 PPA dyads, with 29 of 30 intervention goals achieved or over-achieved, and identified the Aphasia Impact Questionnaire as a candidate primary outcome measure. However, that pilot was not powered for efficacy and left unresolved questions about remote delivery, optimal timing (early vs. later in disease course), extension to non-PPA dementias, and health economic implications—all of which BCPPA plus is designed to address. Findings from this feasibility study will apply specifically to people with PPA and other rare dementias who have an identified and willing communication partner and can access videoconferencing technology. People with advanced dementia, those without available communication partners, those without digital access, and those from minority ethnic or lower socioeconomic groups may be underrepresented. Practice should not change based on this protocol alone. This study is a necessary intermediate step before a definitive trial. Note: only the abstract (truncated) was available for review; this summary is supplemented by the ISRCTN registry entry and related published literature from the same programme of research. __LIMITATIONS__ Protocol paper only: no outcome data available; all clinical inferences are premature,Feasibility study: not powered to detect clinical effectiveness; sample size of 36 dyads is insufficient to draw efficacy conclusions,Waitlist crossover design precludes a true no-treatment control group and may contaminate longer-term follow-up comparisons,Single-country NHS setting limits generalisability to other healthcare systems with different SLT workforce capacity and digital infrastructure,Potential selection bias: inclusion requires both a willing communication partner and the technical ability to participate via videoconferencing, excluding a potentially large and vulnerable subgroup of patients,Extension to 'other rare dementias' beyond PPA introduces diagnostic heterogeneity that may confound implementation and outcome data,Blinding of assessors may be difficult to maintain in a telehealth-delivered behavioural intervention trial,Outcome measure selection remains an open question (a feasibility objective), meaning primary endpoint for the future definitive RCT has not yet been confirmed,Health economic data collection at this feasibility stage will generate estimates only, not definitive cost-effectiveness conclusions,NIHR fellowship funding by a government body does not introduce commercial conflict of interest, but investigator-initiated studies may carry allegiance effects __BOTTOM_LINE_CATEGORY__ promising_but_preliminary __BOTTOM_LINE__ BCPPA plus is a theoretically grounded, co-designed, NHS-embedded telehealth communication partner training programme for people with PPA and other rare dementias, now entering a randomised feasibility and implementation study phase. No efficacy data are yet available, and this protocol paper should be understood as a roadmap for the evidence-generating process rather than evidence of clinical benefit. Clinicians working in dementia and SLT services should monitor this programme of research, as it addresses a genuine unmet need in a population with very limited evidence-based communication interventions.