ABSTRACT
Purpose
We describe the planning and outcomes of the first ‘Blepharospasm Day’ in the UK. Blepharospasm is a distressing condition for patients and carers. Our ‘patient and public involvement’ event aimed to: cultivate a more informed patient group via active dialogue, help clinicians more effectively prioritise research and to facilitate peer-to-peer support for affected patients and public.
Design
A national one-day event was organised by the oculoplastics department at Moorfields Eye Hospital. The event was divided into informative lectures delivered by professionals and a patient panel, during which patients shared their experiences and expectations.
Methods
Data were collected from a variety of sources including: an interactive voting “LiveWall” poster, a pre-event questionnaire; “living with Blepharospasm”, transcripts from patient panel discussions; and a feedback questionnaire.
Results
The event was well-received with 100% of respondents rating it good or excellent. Four research themes were identified: “aetiology”, “alternative treatments”, “faster, more accurate diagnosis”, and “symptom control”. Delegates’ self-reported knowledge of blepharospasm increased significantly after the event. Limitations of the BdSI severity-assessment tool were noted with 22% of respondents failing to utilise it appropriately.
Conclusion
Through our innovative “Blepharospasm Day”, patient’s priorities for research were identified, delegates understanding of blepharospasm increased and an independent blepharospasm patients-representatives’ group was established; a first in the UK. Furthermore, short-fallings identified in the BdSI tool highlight the need for better severity-assessment tools. We demonstrate the benefits of the ‘patient and public involvement’ approach in the management of complex conditions such as blepharospasm.
Abbreviations
PPI: Patient and public involvement; SLV-PSP: sight loss and vision sector – priority setting partnership; BRC: Biomedical Research Centre; NIHR: National Institute for Health Research; BsDI: Blepharospasm Disability Index
Acknowledgments
Many thanks to the delegates: patients, caregivers and members of public, for sharing their experiences and expressing their needs. Their insight has made a vital contribution to this study. Special thanks for patients who participated in the patients’ panel: Christine Clarke, Alan Bates, Jane Hewertson and Patricia Mccullough. Thanks also to Rea Mattocks (Director, Birdshot Uveitis Society) who worked facilitating the patients’ panel session. We also thank the medical students from Barts and the London School of Medicine and Dentistry Rohan Sussain, Tomothy Wong, Anna Anthonypillai, Sean Zhou, Amy Kang and Cally Kilduff. Thanks also go to the supporting charities Fight for Sight and the Dystonia Society and to all staff at the NIHR Biomedical Research Centre at Moorfields Eye Hospital.
Disclosure statements
The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the article.
Author Roles
Project: A. conception, B. organization, C. execution
Data: A. gathering, B. analysis
Manuscript: A. writing of first draft B. Review and Critique
Fabiola R. Murta1 1ABC, 2AB, 3AB; Jacob Waxman6 2AB 3AB; Andi Skilton2 1ABC 2AB 3AB; Sadie Wickwar4 1ABC 2AB; Karen Bonstein2 1ABC 2A 3AB; Richard Cable2 1ABC 2AB 3AB; Jane Clipson2 1BC 2A; Alan Bates4 1ABC 3A; Rea Mattocks4 1ABC 3A; Stephen Worsfold4 1ABC 3A; Daniele Lorenzano1 1BC 3AB; Anuradha Jayakaprasam1 1BC 2AB 3A; Shirin H. Azzam1 1BC 2AB 3A; Fariha Shafi1 1BC 2AB 3A; Qiang Kwong1 1BC 2AB 3A; Nikolas Koutroumanaos1 1BC 2AB 3A; Alexandra Manta1 1BC 2AB 3A; Guy Negretti1, 1BC 2AB 3A; Anjana Haridas1 1BC 2AB 3A; Daniel G. Ezra1,2 1ABC, 2AB, 3AB