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

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