Better Conversations with Parkinson’s: a speech and language therapy approach supporting people living with Parkinson’s and their family members to have more successful everyday conversations

Communication difficulties affect approximately 80% of people living with Parkinson's (plwP), with significant effects on quality of life, confidence and relationships.

Better Conversations with Parkinson's (BCP) is being developed for SLTs to use to meet the needs of plwP and their communication partners (family members/ friends), who describe wanting to improve day-to-day conversations.

BCP involves the SLT coaching plwP and a communication partner to build long-term skills for more successful conversations. The approach currently exists as BCP-Telehealth, delivered by a researcher via video appointment.

This proposal uses the Medical Research Council's framework, refining the intervention and resolving uncertainties as a step towards a future effectiveness study.

Patient and public involvement (PPI) group members have identified these aims as priorities for research development: 1). To develop an updated set of outcome measures for SLTs to use with BCP and for a future trial 2).

To refine BCP intervention so it is: acceptable to plwP with a range of communication impairments, and their communication partners; and addresses more advanced symptoms including cognitive change. This includes adapting BCP-Telehealth for face-to-face delivery 3).

To establish the feasibility of a multi-centre, randomised controlled trial of BCP These aims will be achieved through three work packages.

Work package 1 (years 1-2): A scoping review of the literature will be used to identify existing outcome measures related to communication changes and their impact on plwP and communication partners.

Consensus methods will be used with plwP, communication partners and expert SLTs to agree on constructs that are most important to achieve when undergoing BCP therapy.

The study PPI group will match these constructs to existing outcome measures identified in the scoping review and select outcome measures for a feasibility study (work package 3).

Work package 2 (years 2-3): A PPI network including plwP, family members and expert SLTs will co-produce a refined BCP intervention, so that it is acceptable for plwP who experience more complex communication and cognitive symptoms, therefore reflecting SLTs' clinical needs and the needs of plwP. PPI members will be purposively recruited to ensure inclusion of under-served groups.

Work package 3 (years 3-4): 40 plwP and a communication partner will be randomly allocated to receive BCP or standard NHS speech and language therapy (defined by a group of expert SLTs) in a feasibility study across four NHS Trusts. Descriptive statistics and reflexive thematic analysis will be used to analyse trial, assessment and interview data.

The aim is to examine the acceptability of the refined BCP intervention, identify outstanding areas of development and test research methods and procedures prior to a future full-scale trial.

The research will be disseminated via conferences, publications and social media to academic and professional audiences, plwP and family members or friends.

A website will host resources and information, with the aim of BCP and corresponding outcome measures being freely available for SLTs to use with plwP in the future.

Future research will evaluate the impact of BCP on communication, quality of life, participation of plwP, carer burden and NHS costs.