New guidelines aim to improve diagnosis and treatment for condition that can leave young women blind

Dr Susan Mollan and Professor Alexandra Sinclair

Clinicians from founding member University Hospitals Birmingham NHS Foundation Trust (UHB) have led the production of the world’s first treatment guidelines for a rare condition that can leave young women blind and suffering daily painful headaches.

Idiopathic Intracranial Hypertension (IIH) mainly affects obese women in their 20s and 30s and incidences are on the rise, in line with the global rise in obesity numbers. Those with the condition generally have a BMI of over 30 and often first present with severe headaches and declining vision. Without urgent treatment, 25% of women with the condition risk permanent sight loss.

Neurology consultant, Dr Alexandra Sinclair, chair of the guidelines, together with, Ophthalmology consultant, Susan Mollan, were the senior and primary authors of the international guidelines which were reviewed and approved by a range of professional bodies, including the Association of British Neurologists (ABN), the Society of British Neurological Surgeons (SBNS), the Royal College of Ophthalmologists (RCOphth) and the British Association for the Study of Headache (BASH).

Dr Alex Sinclair, who also works with the University of Birmingham’s Institute of Metabolism and Systems Research, said: “These guidelines will a have significant impact on patient care internationally and are a vital move towards standardising and ensuring safe, high quality care for all patients.”

Susan Mollan added: “The guidelines have highlighted multiple areas of uncertainty in the management of IIH. They represent key areas for future research and as further research emerges, the guidelines will be updated.”

Shelly Williamson, Chair of charity IIH UK, welcomed the guidelines saying:: “As a patients’ charity we hear on a daily basis the suffering that people with IIH go through, IIH can impact on every aspect of their life. We are hopeful that these consensus guidelines will revolutionise the treatment of IIH.”

The paper outlining the guidelines has become the most read article in the Journal of Neurology, Neurosurgery and Psychiatry this year, which the journal has now followed up with a podcast recorded with Alex Sinclair.

Extensive research was carried out to put the guidelines together, including a survey of consultants who investigate and manage IIH regularly, as well as a comprehensive and systemic literature review. Experts from multiple specialties were involves including neurologists, ophthalmologist, neurosurgeons, radiologists and nurse with wider input from international key opinion leaders. Sufferers of the condition were also consulted about their experiences and involved in the research process.