How much information do patients taking anti-epileptic drugs feel they receive about the side-effects of this medication?
Epilepsy Action Membership Survey – July 2003
Summary of Findings
Studies suggest that osteoporosis (brittle bone disease) and osteomalacia (softening of the bones) are potential side-effects of certain anti-epileptic medication. This is due to the reduction in the body's vitamin D, caused by these drugs, which in turn may lead to possible loss of bone mass.
The purpose of this pilot study was to provide a snapshot of the extent to which patients felt they were sufficiently informed of the side-effects of anti-epileptic drugs (AEDs).
In particular, the research sought to determine if people taking AEDs, where osteoporosis and osteomalacia were possible side-effects of long term use (over 5 years), were given information about this condition. In addition, the study looked at what supervision, treatment and preventative measures are offered to patients most at risk of this condition.
1000 questionnaires were sent out to a random sample of Epilepsy Action's members. 241 responses (24 per cent) were received. The findings of this research were analysed in relation to two issues, firstly the long-term use of any AED, and secondly the long-term use of AEDs that have the possible side effect of osteoporosis and osteomalacia.
38 per cent of respondents had been taking AEDs for 5 years or more, of which 68 per cent were long-term users of AEDs which had the possible side effect of osteoporosis and osteomalacia.
The findings indicate that 75 per cent of people taking AEDs felt they were not informed of the side-effects of these drugs. This figure applied no matter which AEDs the respondent was taking.
Several respondents expressed their concern about this situation. Comments suggest that this situation was possibly linked to a lack of communication between patient and doctor.
The findings further indicate that only 15 per cent of respondents taking AEDs with the possible side effect of osteoporosis and osteomalacia were offered a bone density test or advised about preventative treatment.
The long term use of AEDs appears to be a risk factor for bone loss and fractures. Vitamin D deficiency is also cited as a cause of bone loss in patients who have seizures. Based on the findings a number of recommendations are made:
- Doctors, pharmacists and health professionals should inform the patient of the possible side-effects of AEDs.
- Patients should be made aware that osteoporosis and osteomalacia are possible side effect of taking some AEDs.
- The level of risk of osteoporosis and osteomalacia should be discussed with individual patients.
- Doctors should consider what preventative measures could be taken to reduce the risk of patients taking some AEDs developing osteoporosis and osteomalacia.
- A bone density test should be considered for people prescribed AEDs that may have osteoporosis and osteomalacia as a side effect.
- Vitamin D or Calcium supplements could be considered when taking these AEDs.
This study highlights the need for further in-depth research into the issue of side-effects and anti-epileptic drugs.
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Comments
30yrs on phenytoin, very intermittant testing, docs decided to test me for folate deficiency 3 months after hospital admission for infected kidneys and found I had macrocytic anaemia, Dr only tested for folate [folic] I had to do the research and find the other vitamin deficiencies caused by phenytoin and then push to be tested to find I had calcium/Vit D deficiency even though I was diagnosed with osteopaenia 5yrs ago and not informed it could be phenytoin - they blamed depo nor had another bone density scan. Saw Dr about overgrowth of gums, they said see my dentist, did not mention that it was due to phenytoin toxicity of which I have other side effects - peripheral neuropathy, ataxi, nstygmus etc etc. The only side effect I was aware of was excess hair growth and when my Dr asked me if I'd like to see a neurologist I said I could live with the hair growth and happy to stay pn phenytoin as I was seizure free. When I finally got to see the neurologist they thought I was a new patient - they cannot find my records for the last 30 yrs. There are more what I class as mistakes during after pregnany - levels not tested = not enough during pregnancy and overdosing while being encouraged to breast feed. What on earth is happening with our Gp's ? Now this afternoon I discoved there is also a possibility of Vit K deficiency - when does it end ? Why are the Gp's not upto date and/or not informed and why are people with this disability being treated so badly ?
Hi TJ
It sounds like you have had to do lots of research about your epilepsy and phenytoin side-effects. It’s really difficult to know how to keep GPs up to date with all the effects of epilepsy medicines – although we do try. An example of this is the six different fact sheets we have recently written for GP’s to use with their patients with epilepsy. One of those is about planning a baby, which I’m sure would have helped your GP to help you when you were pregnant, if it had been available at that time.
I hope that your new neurologist is helping you with your epilepsy medicines. But if you would like to discuss any aspect of your treatment, please contact us again, either on the Epilepsy Helpline freephone 0808 800 5050, or by email at helpline@epilepsy.org.uk.
Kathy
Advice and Information Team