Involving people with Parkinson’s Disease in the co-design a trial investigating the effect of Galvanic Vestibular Stimulation on balance

Purpose

Parkinson's disease is the second most common neurodegenerative disease, and the most common neurodegenerative movement disorder worldwide. Symptoms commonly impact on individual’s balance, increasing the likelihood of falling. It is thought that Galvanic Vestibular Stimulation (GVS) may improve balance and postural responses in PD however there has been limited work exploring the optimal frequency of intervention. PPI was completed with patients/carers regarding project design, and feedback on proposed study documentation. This ensured that the project/documentation were designed appropriately before applying for ethical approval and committing funding.

Approach

This event took place at Canterbury on 09/12/2019, led by a Physiotherapist within the research team. Times and locations were decided in conjunction with participants who were recruited through a Parkinson’s UK affiliated exercise group and contact with PDUK Canterbury Branch. Verbal and written feedback were obtained during the course of the session. The research proposal was discussed, before Q&A about the proposal/purpose of the study. Feedback and suggestions to help develop the protocol and supporting documentation were invited. The perception of people with PD were explored in relation to;

· Delivery of a GVS intervention including acceptability, worries or concerns, and views on how these may be overcome.

· Practicalities of recruiting participants to a study investigating the effects of GVS including participant information and acceptable burden.

· Relevance of outcome measures to the person with PD.

· Engagement in this and future research.

Following the visit, a written account of the session was sent to participants within the group via email, with the opportunity for further discussion.

Outcomes

Results: This session was attended by 8 individuals (5 individuals with PD, and 3 relatives/friends/carers).

· 100% of participants supported further research in this area.

· All participants felt that GVS would be an acceptable treatment methodology.

· Participants main worries/concerns centered around any potential side effects of stimulation.

· The primary factors that may deter individuals from taking part in this study were reported as travel distance to the University (including accessibility of the laboratory environment), and flexibility of any potential involvement around pre-booked travel plans.

· On request, adaptations were made to the proposed participant information sheet to include a picture of the GVS device, further information on specific outcome measures used, and further information on how group allocation would take place.

· Participants unanimously felt that the 6.5h proposed time commitment was acceptable to them.

· The majority of participants in this PPI session requested to be kept up to date with the progression of the study.

Conclusion(s): Individuals with PD (and their carers) are supportive of further work in this field, and were actively engaged in the project design to investigate GVS as a potential treatment modality. Further work is required to carry out the project as planned.

Cost and savings

No further information. 

Implications

This PPI work has helped to inform the design of a future study, ensuring that it is focused towards the priorities of individuals most affected by PD. It is hoped that future PPI will involve participants in the dissemination of results, and to generate an advisory group to influence the development of future studies.

Top three learning points

No further information. 

Funding acknowledgements

PPI funded by grant of £400 by South East Research Design Service Public Involvement Fund. Funding was obtained in order to run a 3h event with individuals diagnosed with PD and their carers. Funds were used to reimburse participants for their time, fund travel expenses, and provide refreshments.