Vision in Idiopathic Intracranial Hypertension (IIH)
Research type
Research Study
Full title
Vision in Idiopathic Intracranial Hypertension (IIH) – patient perspectives of vision loss and vision care
IRAS ID
339226
Contact name
Elizabeth Lomas
Contact email
Sponsor organisation
Royal Stoke University Hospital
Duration of Study in the UK
0 years, 6 months, 1 days
Research summary
Idiopathic intracranial hypertension (IIH) is a condition when the pressure of the fluid that surrounds the brain is raised with unknown cause. The increased pressure often leads to severe and frequent headaches and can affect vision if the pressure causes the optic nerves to swell. These symptoms can have a big impact on a person’s wellbeing, psychological health and activities of daily living such as work. It is important to explore patient understanding and experience in this condition as it may have an impact on how patients approach their treatment.
These ideas will be explored through focus groups with IIH patients, allowing them to discuss their experiences in detail. These will then be examined and summarised by transcribing them (creating a word for word written record of the conversations) and determining common themes.
These themes will be used to inform the development of gold standard patient centred national guidance, recommendations and services and could inform the drafting of specialist written or E-Learning patient information.
This research is being funded by the British and Irish Orthoptic Society. The Orthoptists role in the care of IIH patients is an innovative developing area of practice. Insights gained from this research into the impact of this role will be fundamental in shaping its further development.
This research has been sponsored by the University Hospital of North Midlands, this is where participants will be recruited from; specifically, those attending Neurology or Orthoptic appointments to monitor or treat their IIH. Any person with IIH who has had at least one Orthoptic monitoring appointment will be eligible to participate.REC name
East Midlands - Leicester South Research Ethics Committee
REC reference
24/EM/0092
Date of REC Opinion
24 May 2024
REC opinion
Further Information Favourable Opinion