Many people with epilepsy want to know more: a qualitative study

Abstract

To explore why, at the turn of the 21st century, many people with epilepsy still want more information. Qualitative study with a maximum variation sample in the UK. We interviewed 38 men and women, 35 with epilepsy and three carers of people with epilepsy, recruited through GPs, neurologists, support groups and charities. People with epilepsy obtained information via health professionals, epilepsy organisations, leaflets, books, and the Internet. Many people wanted much more information about treatment options. People wanted to discuss the advantages and disadvantages of different drugs with their consultants, who were sometimes too busy. People also wanted to know more about the causes of epilepsy, partly because they feared the stigma associated with it, and other matters, such as Sudden Unexpected Death in Epilepsy [SUDEP]. The UK government plans to provide better services for those with epilepsy but, without enough money to employ more specialists, the information needs of patients may not be met. For concordance to work effectively doctors need to be aware of what patients think about their drugs, and patients need more information about treatment options. They also need more time to discuss the causes of epilepsy in order to reduce stigma and fear. Since time in consultations is short, clinicians should inform patients about epilepsy organisations, and direct them to websites such as the DIPEx (Personal Experiences of Health and Illness) epilepsy website (www.dipex.org/epilepsy), which focuses on patients' experiences of epilepsy and provides reliable information about medicines, other treatments, and resources.