IIH management - ideas, concerns and expectation
Research type
Research Study
Full title
Ideas, concerns and expectations of patients in diagnosis and management of Idiopathic intracranial hypertension
IRAS ID
260611
Contact name
Benjamin R Wakerley
Contact email
Sponsor organisation
Gloucestershire Hospitals NHS Foundation Trust
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Idiopathic intracranial hypertension (IIH) is a neurological disease associated with raised intracranial pressure in the absence of a structural cause. The exact mechanism of disease pathogenesis remains unknown, although typically patients with IIH are young obese females, and therefore there has been a focus on fat metabolism. It has been postulated that hormones produced by adipose cells might interfere with cerebrospinal fluid absorption and therefore result in raised intracranial pressure. Only a small proportion of young obese patients develop IIH and therefore other factors are likely to be important. Whilst weight loss is beneficial, it can be difficult to initiate and maintain in some patients.
To many women a new diagnosis of IIH is devastating. Knowledge that it only occurs in young obese women, and that it may result in permanent visual loss, is often met with fear, confusion and anxiety. Moreover, very few patients have any knowledge of IIH prior to diagnosis due to its rarity and infrequent family inheritance.
Diagnosis requires measurement of intracranial pressure by lumbar puncture and brain imaging which can also be difficult in obese patients. Treatment also presents problems as commonly used drugs are often poorly tolerated and weight loss is often difficult to achieve in the presence of daily headache. Many patients with IIH display low mood and this may exacerbate their symptoms.
The aim of this study is to learn about the ideas, concerns and expectations of patients in diagnosis and management of IIH.
10 IIH patients will have detailed interviews on:
1) experience of living with IIH 2) experience of being physically active 3) engagement in physical activity 4) experience of care provider/support systems
5-stage thematic analysis will be used to agree common responses.
In the future, we hope to develop a patient centered exercise programme designed to maximize weight loss.
REC name
West Midlands - Edgbaston Research Ethics Committee
REC reference
19/WM/0280
Date of REC Opinion
24 Feb 2020
REC opinion
Further Information Favourable Opinion