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Research survey for parents/carers of children with hydrocephalus

5th July 2021


Parents/carers of children with hydrocephalus – help support neurosurgeon-scientists at Great Ormond Street to understand which outcomes do you consider most important for children with hydrocephalus. This is particularly with regards to hydrocephalus following bleeding, which is commonly seen in premature babies. The results of the survey, and optional follow up focus group discussion, will allow future research into treatments with a focus on improving the outcomes that are most important to you and your child. Although the research will specifically focus on post-haemorrhagic hydrocephalus the researchers are keen to hear from parents of children with any kind of hydrocephalus (excluding hydrocephalus associated with spina bifida).

You can complete the short survey straight away and/or read more information from the researchers below.

Every year over 55,000 babies in the UK are born prematurely. Bleeding in the brain is common with prematurity; in England around 450 premature babies experience severe bleeds every year. This is the most important cause of cognitive disability in premature children. The bleeding occurs in the fluid spaces (ventricles) of the brain, usually in the first week of life.  At this time the brain is developing rapidly and is vulnerable to injury.  The blood and its breakdown products in the brain fluid (cerebrospinal fluid or CSF) cause two problems. First, both are toxic to the developing brain. Second, they cause scarring around the surface of the brain, blocking the flow and absorption of CSF in the head. In about half these babies, this causes build-up of fluid in the ventricles, known as post-haemorrhagic ventricular dilatation (PHVD). The dilatation can be monitored easily using ultrasound.

Current treatment of PHVD only involves draining CSF to reduce pressure inside the brain. As the babies are so small, often <1kg in weight, a temporary draining device is first inserted in a short surgical procedure. In most of these babies the temporary device eventually needs to be replaced by a permanent one called a ventricular-peritoneal (VP) shunt. This consists of a tube in the ventricles, connected to a valve that regulates flow, and another tube implanted in the abdomen, from where fluid is absorbed.  Although VP shunts work well, they can get blocked or infected, requiring operations to replace or fix them.

Current treatment does not reduce the toxicity of the blood and its breakdown products. A recent study has provided strong evidence that early washout of the blood and its breakdown products from the CSF reduces the brain injury. Babies who had this treatment, when examined two years and again ten years later, showed better cognition than those who only had drainage of CSF without washout. The difference was equivalent to two years’ developmental delay. However, this washout technique is complex. These babies have two tubes in the head, with fluid flowing in and out, in sterile conditions, for about 5 days. This technique is difficult to practice, disseminate and teach and is therefore not being used routinely in the NHS.

An alternative way to wash the blood involves the use of a small telescopic camera called an endoscope. Through the endoscope, the blood-stained CSF and blood clots can be seen under direct vision. The aim is to remove as much of the clot and blood-stained CSF as possible in one procedure. This is a relatively straightforward operation and many paediatric neurosurgeons already have the skills to perform it. However, this procedure has not been evaluated in a randomized study. One small study has shown that some of the babies treated in this way had good outcomes at two years.

We have been using endoscopic washout in a small pilot trial at Great Ormond Street Hospital. To date, 15 babies have been randomized. Having shown that this technique is safe even in these extremely small babies, a larger randomized trial is required to show whether it is effective and suitable for adoption in the NHS. We aim to recruit 110 patients from up to 7 paediatric neurosurgical centres around the UK. Babies will be randomly allocated to insertion of a temporary drainage device with or without endoscopic washout. The primary outcome is the children’s score on a cognitive assessment at two years, which has been shown to be a very important outcome measure for both the parents and the doctors looking after premature babies. We will also examine other outcomes to confirm that the procedure is safe and assess whether it has an impact on other aspects such as the need for a VP shunt and whether these children develop cerebral palsy and epilepsy. We are also keen to hear from parents about which outcomes are most important which is why we first want to conduct a survey to find out, and later, a more detailed virtual/remote discussion with any willing participants.

Complete the survey here if you haven’t already done so. There will be an opportunity at the end of the survey to give your contact details to take part in a follow-up discussion, but this is completely optional.

Shine and the neurosurgeons at Great Ormond Street Hospital are very grateful for your input.

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