The first UK national blepharospasm patient and public involvement day; identifying priorities

• Published in: Orbit (Amsterdam) 2020-07, Vol.39 (4), p.233-240
• Main 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.
• Format: Article
• Language: English
• Subjects: Attitude to Health; Biomedical Research - statistics & numerical data; Blepharospasm; Community Participation - methods; Disability Evaluation; Health Priorities - statistics & numerical data; Health Services Needs and Demand; Humans; patient and public involvement; Primary Health Care - statistics & numerical data; research priorities; United Kingdom
• ISSN: 0167-6830; 1744-5108
• DOI: 10.1080/01676830.2019.1657469

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. 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. 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. 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. 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. 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