Patient experience of living with BEB?

• Research type

  Research Study

• Full title

  Patient experience of living with benign essential blepharospasm?

• IRAS ID

  235014

• Contact name

  Nicola Dunlop

• Contact email

  nicola.dunlop@moorfields.nhs.uk

• Sponsor organisation

  Moorfields Eye Hospital

• Duration of Study in the UK

  1 years, 6 months, 0 days

• Research summary

  Title: Patient Experience of Living with Benign Essential Blepharospasm
  The aim is to explore the impact of benign essential blepharospasm (BEB), outpatient treatment and care on the lives of patients
  Patients with BEB often report the sudden devastating symptoms of excessive blinking and closure of the eye to the extent that they are often left functionally blind. Personal observation and patient feedback suggest that the service we provide fails to meet their individual needs at the time of acute relapse.
  Nationally chronic diseases are a target of both policy and research initiatives. However, national policies have failed to make an impact on local care. The Health and Social Care Act [DH, 2012] called for quality Improvement and local innovation. This research proposal seeks to address the gap between policy, theory, and practice and response to the need to give patients a greater voice in their own care. The findings of this study will inform redesign of services and create understanding of personal perspective on the impact of the condition and untimely care.

  Primary Research Question

  What is the patient experience of living with BEB during an acute episode of the condition?

  Secondary Research Questions/Objectives:

  How does an acute episode of BEB affect the quality of patient’s life?
  How does access to outpatient services during an acute episode of the condition impact on the patient experience?
  What needs to change to ensure that outpatient services for patients with BEB are responsive to expressed needs?

  A purposive sample of 8-12 patients with the lived experience of BEB who attends the outpatient department at Moorfields Eye Hospital will be invited to participate in interviews and a focus group study. This study will last for a period of total of 18 months.

• REC name

  North West - Greater Manchester South Research Ethics Committee

• REC reference

  18/NW/0388

• Date of REC Opinion

  6 Jun 2018

• REC opinion

  Favourable Opinion