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Murta, Fabiola R., Waxman, Jacob, Skilton, Andi, Wickwar, Sadie 
ORCID: https://orcid.org/0000-0001-9307-4532, 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 and Ezra, Daniel G.
(2020)
The first UK national blepharospasm patient and public involvement day; identifying priorities.
Orbit, 39 (4).
pp. 233-240.
ISSN 0167-6830
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.
| Item Type: | Article |
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| Additional Information: | Funding Information: This study had the financial support of the Department of Health through the award made by the National Institute for Health Research to Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology. The views expressed in this publication are those of the authors and not necessarily those of the Department of Health. 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. Publisher Copyright: © 2019 Taylor & Francis Group, LLC. |
| Uncontrolled Keywords: | blepharospasm,patient and public involvement,research priorities,ophthalmology ,/dk/atira/pure/subjectarea/asjc/2700/2731 |
| Faculty \ School: | Faculty of Medicine and Health Sciences > Norwich Medical School |
| Related URLs: | |
| Depositing User: | LivePure Connector |
| Date Deposited: | 04 Sep 2024 13:36 |
| Last Modified: | 25 Sep 2024 18:06 |
| URI: | https://ueaeprints.uea.ac.uk/id/eprint/96556 |
| DOI: | 10.1080/01676830.2019.1657469 |
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