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

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

KEYWORDS:

• Blepharospasm
• patient and public involvement
• research priorities

View correction statement:

Correction

Acknowledgments

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.

Disclosure statements

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the article.

Author Roles

1. Project: A. conception, B. organization, C. execution

2. Data: A. gathering, B. analysis

3. Manuscript: A. writing of first draft B. Review and Critique

Fabiola R. Murta¹ 1ABC, 2AB, 3AB; Jacob Waxman⁶ 2AB 3AB; Andi Skilton² 1ABC 2AB 3AB; Sadie Wickwar⁴ 1ABC 2AB; Karen Bonstein² 1ABC 2A 3AB; Richard Cable² 1ABC 2AB 3AB; Jane Clipson² 1BC 2A; Alan Bates⁴ 1ABC 3A; Rea Mattocks⁴ 1ABC 3A; Stephen Worsfold⁴ 1ABC 3A; Daniele Lorenzano¹ 1BC 3AB; Anuradha Jayakaprasam¹ 1BC 2AB 3A; Shirin H. Azzam¹ 1BC 2AB 3A; Fariha Shafi¹ 1BC 2AB 3A; Qiang Kwong¹ 1BC 2AB 3A; Nikolas Koutroumanaos¹ 1BC 2AB 3A; Alexandra Manta¹ 1BC 2AB 3A; Guy Negretti¹, 1BC 2AB 3A; Anjana Haridas¹ 1BC 2AB 3A; Daniel G. Ezra^1,2 1ABC, 2AB, 3AB

Additional information

Funding

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.