Epilepsy surgery patients could benefit from more targeted information and support, to help them manage the difficulties they can sometimes face before and after their procedures.
This is according to a new study led by the University of Gothenburg in Sweden, which explored 80 individuals’ expectations prior to surgery, and their short- and long-term experiences after surgery.
The participants, who had been carefully assessed and were awaiting epilepsy surgery, were asked a number of questions about their perceptions and expectations of their upcoming treatment. They were then questioned about their actual experiences two years after surgery (short-term follow-up) and at a long-term follow-up point (an average of 13 years after surgery).
According to results published in the medical journal Epilepsia, people generally believed that surgery would help them to live a more “normal” life, and many had hopes for a reduction in seizures and a decreased reliance on antiepileptic drugs (AEDs). It was also widely expected that social lives would be richer and self-confidence greater following treatment.
In general these positive expectations were realised, with subjects showing increased independence at both follow-up points, along with reduced symptoms, relief from their worries and fears, and a feeling that they had a new lease of life.
However, the study also revealed a number of negative trends that need to be addressed through better support. For example, some people experienced anxiety about the unknown, and expressed fears about the operation, or the prospect of continued seizures and/or complications.
Certain individuals were shown to experience psychological or neurologic adverse effects following surgery, which impacted their quality of life in spite of any seizure reductions. It is clear that people in these situations need to be offered additional, targeted assistance to help them cope.
The research concludes: ‘Positive experiences of epilepsy surgery dominated, both in the short and long term. However, attention must be paid to negative expectations before and negative experiences after surgery in order to provide individual support and information.
This should increase the possibility for patients to have realistic hopes before surgery, and to find coping strategies in the new life situation after surgery.’
Posted by Bob Jones
Edited by Epilepsy Research UK
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