Use of valproate: Implications for women with intellectual disabilities and the wider interdisciplinary healthcare team

Accessible summaryA medicine called valproate is sometimes prescribed for epilepsy and problems with mental health and mood. Valproate is also known as Epilim, Depakote, Convulex, Episenta, Epival, Kentlim, Orlept, Syonell and Valpal. Women with epilepsy and/ or mood problems should not take this medicine when they are pregnant unless, in the case of epilepsy, there is no suitable alternative treatment. Women who have only mood problems should not be given this medicine at all when they are pregnant. If a woman is prescribed valproate, she must use highly effective contraception, so she does not get pregnant. Some woman with intellectual disabilities and epilepsy and/ or mood problems who take this medicine may need help in understanding that they must use contraception. Doctors, nurses and other health and social care workers all need to know about this so that they can advise women with intellectual disabilities of the dangers.Abstract Background It is well established that valproate, and its valproic acid, sodium valproate, and valproate semisodium forms is a highly teratogenic drug and evidence suggests that use in pregnancy leads to physical birth defects in 10% of children born compared with a background rate of 2% to 3%. Congenital malformations associated with valproate are predominantly neural tube defects, clefting abnormalities, cardiovascular defects, genitourinary defects in males, and musculoskeletal defects. There is also increased risk of developmental delays and this includes delays in walking, talking, poor language skills, memory problems, and low intellectual ability in approximately 30 to 40% children born to mothers taking valproate. Furthermore, developing foetuses, if exposed to valproate in‐utero, are at increased risk of autistic spectrum disorder (approximately three‐fold), and also more likely to develop symptoms of attention‐deficit/hyperactivity disorder. Subsequently valproate preparations prescribed to treat epilepsy are now contraindicated in pregnancy unless there is no suitable alternative treatment. In addition, valproate preparations prescribed for bipolar disorder have an absolute contraindication in pregnancy. Implications for practice In order for valproate containing medicines to be prescribed for women of child bearing potential a risk acknowledgment form must be completed annually. For people without capacity to consent the form may be completed by a relative or other appropriate person. However, for people with intellectual disabilities, even with capacity, healthcare professionals need to ensure that the information on the form is accessible in order that they can understand it. They may not choose to give consent for a third party to complete the form on their behalf. Often intellectual disability nurses have a pivotal role, on behalf of the interdisciplinary team (IDT), in identifying women of child bearing potential who are currently prescribed valproate. Notwithstanding the IDT also has a role in engaging with patients during discussions to ensure they understand the conditions of prescribing. It is important that the IDT understand their role in patient engagement to facilitate shared decision making. Therefore, for women with intellectual disabilities with capacity, consent to treatment must be ‘informed’, and all risks will need to be communicated to the woman, exploring alternatives in order to comply with the Montgomery Judgement. Specialist intellectual disability nurses have a pivotal role in discussing appropriate contraceptive advice, and sign‐posting women to local services. Conclusion Valproate preparations prescribed to treat epilepsy are contraindicated in pregnancy unless there is no suitable alternative treatment; in addition, valproate preparations prescribed for bipolar disorder have an absolute contraindication in pregnancy. It is imperative that specialist intellectual disability services are able to advise the wider primary health care team on best practice. Additionally, those with prescribing responsibilities, and particularly specialist intellectual disability epilepsy nurses, along with the wider IDT, must be aware of these new regulations.