Patient and public involvement: how service user engagement has informed research into falls intervention in people with Charcot-Marie-Tooth disease

Patient and Public Involvement (PPI) is now a requirement of many funders for clinical research. The INVOLVE organisation defines PPI in research as ‟research being carried out 'with‘ or 'by‘ members of the public rather than 'to‘, 'about‘ or 'for‘ them”. One aspect is consultation to understand issues and identify research topics. Here we present the method and results of a focused PPI activity and how it has informed a research program for people with Charcot-Marie-Tooth disease. This work aimed to consult people with CMT on strategies they use to address the problem of poor balance and falls. Two methods were used to collate responses from people with CMT: (1) Workshops were held as part of the CMT United Kingdom annual general meeting. Attendees were asked to discuss and answer two questions: 1-What have you found improves your balance? 2-What do you do or use to prevent falls? (2) The CMT United Kingdom has a strong social media presence. They gave permission for the two questions to be posted on their Facebook page. Responses from both sourceswere collated. Data was coded and thematic analysis was used to identify the emergent topics. In total, 76 suggested strategies were obtained for question 1 and 74 for question 2. For question 1, the four most common strategies usedwere: use of orthoses (22.4%); walking aids (21.1%); good footwear (19.7%); regular exercise (17.1%). For question 2, the four most common strategies used were: paying attention and planning ahead (37.8%); using walking aids and support (28.4%); regular exercise (9.5%); use of orthoses (6.8%). These results have now been incorporated into a funded pilot home based falls management/exercise intervention, and a PhD studentship exploring the use of walking aids and the effect of orthoses on balance.