A new study has outlined the measures that people with epilepsy and their carers consider most important when carrying out clinical trials of epilepsy.For this research, led by the University of Liverpool, 352 people with epilepsy and 263 of their ‘informal carers’ (usually a parent/spouse) were presented with ten outcome areas and asked to rate their importance. They were also asked to state any additional outcome measures they considered to be important.Clinical trials play a key role in assessing new therapies against different criteria. Health professionals have identified domains of importance via the International League Against Epilepsy’s Commission on Outcome Measurement (COME); however, the views of patients and carers are less well-documented.The results from this study, published in the medical journal Epilepsy & Behavior, showed that patients and carers identified similar outcome priorities, including seizure severity and frequency, quality of life, cognitive function, adverse events and independence, or the need for support.Carers also identified three further domains as critically important – namely, the effects of the treatment on patients’ depression, anxiety and independence.The researchers concluded: “Our results could inform a core outcome set for epilepsy that represents the domains that should be reported as a minimum by all trials. This could promote trials which produce meaningful results and consistency in measurement and reporting.”Click here to read more stories about living with epilepsy.
April 29th, 2016|