The first UK national blepharospasm patient and public involvement day; identifying priorities. (3rd July 2020)

• Record Type: Journal Article
• Authors: Murta, Fabiola R.; Waxman, Jacob; Skilton, Andi; Wickwar, Sadie; Bonstein, Karen; Cable, Richard; Clipston, Jane; Bates, Alan; Mattocks, Rea; Shelley, Jane; McCullough, Patricia; Surry, Marc; Matthews, Josie; Worsfold, Stephen; Lorenzano, Daniele; Jayaprakasam, Anuradha; Hamed Azzam, Shirin; Shafi, Fariha; Kwong, Qiang; Koutroumanaos, Nikolas; Manta, Alexandra; Negretti, Guy; Haridas, Anjana; Ezra, Daniel G.
• Is Part Of: Orbit. Volume 39:Number 4(2020)
• Page Start: 233
• Page End: 240
• Publication Date: 2020-07-03
• Subjects: Blepharospasm -- patient and public involvement -- research priorities; Eye-sockets -- Surgery -- Periodicals; Eye-sockets -- Diseases -- Periodicals; Orbit -- surgery -- Periodicals; Orbital Diseases -- Periodicals; 617.7
• DOI: 10.1080/01676830.2019.1657469
• Languages: English
• ISSNs: 0167-6830

Abstract

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