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

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

Murta, Fabiola R;Waxman, Jacob;Skilton, Andi;Wickwar, Sadie;Bonstein, Karen;Cable, Richard;Clipston, Jane;Bates, Alan;Matthocks, Rea;Worsfold, Stephen;Lorenzano, Daniele;Jayaprakasam, Anuradha;Hamed Azzam, Shirin;Shafi, Fariha;Kwong, Qiang;Koutroumanaos, Nikolas;Manta, Alexandra;Negretti, Guy;Haridas, Anjana;Ezra, Daniel G;
orbit (amsterdam, netherlands) 2019 pp. 1-8
172
murta2019theorbit

Abstract

: 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.

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27403
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10.1080/01676830.2019.1657469
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