Awareness of bone health risks in people with epilepsy and intellectual disability

Accessible Summary There are worries about the impact of epilepsy and antiepilepsy drugs (AEDs) on bone health and the increased risk of fractures. It is now considered important that people with epilepsy should be told about the long-term effects of AEDs particularly risk of fractures. People with intellectual disability are more prone to have seizures which do not respond fully to AEDs, on multiple AEDs and thus higher risk of fractures. This is a small study to see whether people with intellectual disability and/or their carers are informed of the risks of AEDs and fractures including how to reduce them. The study found that there is little evidence of people with intellectual disability and epilepsy and/or their carers being informed in spite of their increased risks. Background People with epilepsy (PWE) have a higher fracture risk than nonepilepsy populations. Antiepileptic drugs (AEDs) cause bone loss. Limited physical activity and poor dietary intake increase fracture risk in PWE. People with an intellectual disability have higher prevalence of epilepsy, likely to be on multiple AEDs, with poorer response, thus at a higher risk of sustaining fractures compared to general population. Ignorance of these issues can add to the risk. The study ascertains bone health knowledge in people with epilepsy and their carers. Materials and Methods A literature search on intellectual disability, epilepsy, bone health and patient knowledge informed a codesign survey with a service user group. An easy read survey version was created. It was disseminated via NHS Trust clinicians to all service users and their carers receiving services from a specialist learning disability team (catchment population-1,000,000). Results Thirty-four carers and 23 service users of total 148 eligible (response rate 38.5%) responded to the questionnaires disseminated by clinicians. Approximately 50% of carers and 25% of people with epilepsy had awareness of the increased fracture risk. Less than 25% of the respondents associated AEDs to bone loss. Less than a third were aware of protective strategies to reduce fracture risk. Conclusions The survey showed significant knowledge shortcomings of both service user and carer groups of relationship between intellectual disability, epilepsy, its medications, fracture risk, and available risk reduction strategies. Clinicians need to be proactive in providing service users and carers with information around bone health and epilepsy.