Epilepsy patients and families ‘should be involved in treatment decisions’

Posted Aug 8 2014 in Living with epilepsy

A new study has shed light on the ways in which epilepsy patients and their families could be more closely involved in key decisions pertaining to the way their condition is treated and managed.

Carried out by Flinders University in Australia and the Epilepsy Foundation, the study aimed to explore the extent to which people with epilepsy and their families were given choice and control over the management of their epilepsy.

To carry out the research, an online survey was provided to 118 adults with epilepsy and 171 family members of children and adults with epilepsy. This allowed the scientists to collate demographic and diagnostic data, as well as details of epilepsy management plans.

Specifically, they were asked questions on whether they were involved in writing their own care plans, and the extent to which the treatment strategy took into account their views on how they wanted to be supported.

Results published in the medical journal Epilepsy & Behavior indicated that just over half of all respondents had an epilepsy management plan, with 83 per cent having seen them revised within the past 12 months.

Although the vast majority – 87 per cent – of respondents were directly involved in writing their plan, only 66 per cent felt this plan properly encompassed their views on how they wanted their treatment to proceed.

Moreover, open-ended comments from 111 respondents indicated a desire to be actively involved in the overall process, as either collaborative members of a team, or as the people in charge.

The researchers concluded: “In spite of a move towards person-centered approaches and greater choice and control, further emphasis must be placed on actively involving the person with epilepsy and their family in writing and incorporating their views on support within their epilepsy management plans.”

Epilepsy affects more than 500,000 people in the UK. Since it usually begins during childhood, many patients and their families will need to plan the best treatment strategies for a period of many years, or even decades, making it important that they are involved in decision-making processes.

Posted by Anne Brown

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