Epilepsy Ireland conducted an online survey on valproate awareness between November and December 2016.
The aim of the survey was to determine the levels of awareness around the restrictions on valproate use; the risks involved for women of child-bearing potential and the level of communication taking place between patients and their medical teams on the issue.
Epilepsy Ireland believes that all patients who could potentially be affected by the serious side-effects of valproate should be informed of the risks by their medical team and that informed decisions should be taken on their future epilepsy treatment.
Similar surveys had been previously conducted in both April and November 2015. People who had taken the earlier survey in November 2015 could still take this survey if they so wished.
The survey was restricted to women with epilepsy taking valproate and parents of children taking valproate. There were 28 valid respondents, a lower number than previous surveys which were completed by 131 respondents (April 2015) and 62 respondents (November 2015).
Key Points
- Almost 1 in 4 have received a letter or phone call from their medical team in the past year about valproate, up from just 4% and 2%.
- Almost half of respondents have had an appointment to review their use of valproate, double the rate from the previous study.
- Over half have had face to face discussions on the issue in the past two years which is a significant increase but still means that in over 40% of relevant cases, no discussions have taken place.
- Almost 8 in 10 people are now aware of the risks associated with valproate, a major improvement from 2015.
- The majority of people state that they became aware either through their HCP team or through Epilepsy Ireland, a finding consistent with previous surveys.
Conclusions
The December 2016 survey relies on a smaller sample size than both the November 2015 and April 2015 surveys. However, the available information clearly shows that there are improvements in both awareness of the risks of valproate and in communication between patients and professionals on the issue.
There is an upward positive trend on all the key measurements we employed and this is to be welcomed.
However, given the serious potential consequences, we believe that more should and can be done to improve awareness and communication further. We want to see further improvement from 56% who state that their HCP discussed valproate risks with them at medical appointments. We believe that every women or parent of a girl on valproate should have had discussions with their team since the EMA rulings on valproate over 2 years ago.
We also believe that every woman or parent of a girl on valproate should know the risks. Epilepsy Ireland continues to highlight the issue, as evidenced by the fact that 60% of respondents both in 2015 and 2016 said they had become aware via Epilepsy Ireland. However more needs to be done to move the 79% awareness are closer to 100%. In 2016, HSE developed excellent new information resources on valproate, which to date have only been posted online. We want to see these resources printed and distributed widely to HCPs and we want to see greater steps taken to proactively increase public awareness through the media and other available channels.