Please visit the IIH PSP page and take part in the survey. Your responses to the PSP survey will help shape future IIH research. Please click here to find out more!
Invitation to participate
Recent studies have shown that weight loss is an effective treatment to reduce papilloedema and headaches for many Idiopathic Intracranial Hypertension sufferers; however we are interested in the barriers that people face that can make weight loss difficult with this condition.
Therefore, you are invited to take part in this brief survey, which is a preliminary investigation into the barriers to weight loss and exercise among individuals with IIH. Participating in this study is entirely voluntary and will involve completing a short questionnaire, which should take no more than 10 minutes.
Please Help Complete This Survey
Krystal Hemmings and James Elander at the University of Derby would like to invite you to take part in a research study, which is investigating pain killer use in individuals with Idiopathic Intracranial Hypertension (IIH). Taking part will involve answering an online questionnaire which will take no more than 20 - 25 minutes of your time. Painkiller use is an important issue in any chronic headache condition, which has the potential to impact on your physical, psychological and social functioning. Your participation will be valuable in helping to improve understanding of headache patterns and painkiller use in individuals with IIH.
If you would like to take part, please click on the link below which will provide you with more information.
We have been asked by Dr A Chandran, Interventional Neuroradiologist at the Walton Centre, Liverpool with help in promoting a survey.
Study Title: IIH patient perspective questionnaire for VISION Trial
(Venous Intervention versus Shunting for IIH in Optic Nerve Swelling)
Patients presenting with impending visual loss due to failed medical therapy secondary to IIH are usually treated with an operation to divert cerebrospinal fluid (CSF), the clear fluid that circulates around your brain and spinal cord, to the abdomen, using a silicone tube called a shunt. .
Recently venous stenting (opening of narrowed large vein in the brain) has been tried as an alternative to shunts. This newer treatment on a small scale has had good success with few side effects and is considered a good alternative to shunts. However this treatment is not widely available as there is not enough evidence to suggest that the treatment is beneficial to large groups of patients.
Both surgical shunts and venous stenting offer a variable degree of relief from headache, visual disturbance and tinnitus (whooshing sound in ears). However there is not enough data to identify the best treatment for IIH symptoms.
The Walton Centre NHS Foundation Trust and other neurosurgery centers in the UK are proposing a randomised trial where half the patients would be treated with a shunt and half would be treated with a stent. This is important to help doctors understand which is the best treatment for IIH patients with impending visual loss.
Please answer the following questions regarding your IIH and treatment by clicking the following link.
2015 Survey of Diagnostic Lumbar Puncture for IIH Patients.
LPs are typically an inevitable investigation in diagnosing IIH. IIH UK wanted to ascertain the opinions of patients undergoing this procedure to see:
- What was the patient experience?
- How it could be improved?
- Many patients do not have a positive experience surrounding their diagnostic LP, what aspects of it are performed well?
IIH UK designed a survey and Dr Thomas Walters from the University of Birmingham analysed and interpreted the data that was supplied by IIH patients. We collected information on:
- Demographics – height, weight, age
- Circumstances and environment of LP
- Impact of LP on patients
An amazing 502 responded to the survey and 463 replies were analysed for the survey. The average weight was 97.4kg (15st 5lbs) and weights ranged from 44.0kg (6st 13lbs) to 182kg (28st 9lbs). The Body Mass Index (BMI) responses from patients ranged from 17 to 67 and the Mean (average) of the responses was 36.
The results from our survey showed interesting results and were as follows:
In the question about being scared about your diagnostic LP, 117 people had score of 10.
The above slide showed a significant trend in that patients who felt that they were not well informed about the procedure experienced more pain. 72% of patients had emergency LPs and were not conducted by a routine appointment.
85% of patients did not receive pain killers after their LPs.
The results below showed that the grade of doctors who performed the LP had an impact on patients. When patients had an LP performed by a Registrar or Consultant, they were less likely to have a low pressure headache after the procedure.
Dr Thomas Walters concluded from the survey data that LPs are painful experience for patients and pain killers did not affect pain scores. In addition, a higher grade of doctor was linked with having significantly less post LP headache severity.
- Pain scores were significantly lower for those patients who felt better informed
- Most people have had more than 1 LP
- The Average was 4, but some people up to 50+
- 38% patients have had 3 or fewer LPs
The survey identified that there was clear evidence that LP’s are a traumatic part of the IIH patients clinical journey and steps need to be taken to improve this experience.
There is a need for future research to evaluate the best techniques to use with needle type and using image guidance.
There is also a need to evaluate if better Dr training improves the experience and after effects.
To look if producing an LP leaflet containing patient information would be helpful.
In January 2013, after conversations with members of the IIH UK charity and IIH sufferers who had contacted us through our Forum and support groups, the Charity decided to undertake its very first survey. The Trustees found it a challenge and a big learning curve! The data that we captured was very interesting and was shared with our medical team at the Sarah Hibberd Conference in February 2013. Encouraged by the replies, we have decided to undertake further surveys as our members have so much information that they wish to share. IIH UK is able to gather this information and present the results to the medical team, vitally important to help drive better treatment and care for all IIH sufferers.
IIH UK 2013 Survey Result Highlights
We received 173 electronic and postal replies replies - 152 adults and 21 children.
- The average age of the adult replies was 34.6. 147 were female and 5 male
- The average age that symptoms started was 28.2.
- The results show that on average people suffered for an average of 4 years before being diagnosed with IIH.
90.07% of adults presented with papilloedema at diagnosis. However,the remaining 9.03% of adults,58.33% of them developed it at a later date.
For those that visited their GPs with the onset of symptoms which were subsequently shown to be IIH, we asked whether their GP had initially identified IIH as the cause; only 3.2% had. Once IIH had been diagnosed, we were informed that GPs appeared to be more aware of the condition, however, respondents advised us that 53% of GPs admitted not knowing anything about IIH to their patients. IIH UK is keen to educate GPs further as they are often the first point of contact for patients presenting with IIH symptoms (usually headaches).
Whilst 40 of the respondents took no medication, Acetazolamide was the most commonly prescribed for the 62 people that took one medication a day. The average dose of Acetazolamide that adults took was 772mg but dosage varied from 250mg to 3000mg. 56% of respondents stated that medication had made them feel better.
43.6% of respondents stated that the treatment that they had received had made no difference to their IIH. We asked respondents to rate their NHS experience for diagnosis/treatment. We asked them to rate from 1 being very poor to 10 being excellent. There were some very low scores, but the average was 5.67.
29.6% of Adult Respondents have Shunts. 57.7% of those having a shunt did not know anything about the make or model of their shunt. . IIH UK have been advised that leaflets are provided for patients by shunt manufacturers, but it appears that they are not being passed onto patients.
55.26% of IIH sufferers felt worse during stormy weather.
62.42% have never applied for benefits.
96.05% have not been diagnosed with Type 2 Diabetes. As Type 2 Diabetes can be brought on by weight gain and because the average BMI of our responses was higher
than considered normal, the Trustees highlighted this figure with one of the medical advisors at the Sarah Hibberd Conference. Dr. Alexandra Sinclair stated that in her experience and research, there was every probability many of these people would have the markers to develop Type 2 Diabetes at a later date.
We had replies from or on behalf of 21 children; 16 female and 5 male. The average age was 12.1 and the average age that symptoms were noticed was 9.26.
- The average BMI was 22 which we noted was within the normal BMI range.
- Acetazolamide was taken by 11 of the children and we also noted that the average dosage was 1052mg (a higher average dosage than respondent adults).
- 19.04% of GPs diagnosed IIH as a cause when the child presented with the onset of IIH symptoms (a higher result than adults).
- Papilloedema was present in 52.38% of children when diagnosed.
- 23.80% of children have never developed papilloedema.
- 52.38% of children stated that the treatment that they had received had made no difference to their IIH. Slightly higher than the adult replies.
- 23.80% of children have shunts and of those only 1 respondent knew what make/model the shunt was.
- We asked child respondents to rate their NHS experience for diagnosis/treatment. We asked them to rate from 1 being very poor to 10 being excellent. The average was 5.24 (slightly lower than adult replies).
Only 27% of children felt worse during stormy weather, a lower percentage than Adult responses.
61% of parents had never applied for benefits for or on behalf of their children, which was a similar figure to Adult responses.
Only 22% of children were considered overweight before being diagnosed with IIH. This figure more than doubled to 50% after being diagnosed. Whilst further information would have to be obtained to ascertain exactly why, it may be that due to pain and hospitalization for some children, being unable to exercise and play might be a contributory factor.