In “Practice Patterns and Care Gaps in Lennox-Gastaut Syndrome: A Call for Action,” Datta and Whitney report findings from a web-based survey distributed to neurologists and allied health workers across Canada.
Reference Datta and Whitney1
The 41-item questionnaire focused on issues surrounding Lennox–Gastaut syndrome (LGS), including diagnostic criteria, genetic testing, management and comorbidities. The primary aim was to evaluate the current state of LGS clinical practice in Canada.
The authors collected and analyzed data from 111 healthcare practitioners, approximately ¾ of whom were neurologists. The findings suggest a significant percentage of those involved in LGS care lack some essential knowledge about the condition. For example, 1 in 5 indicated that genetic testing and/or neuroimaging would be needed to diagnose LGS, when this is not the case based on International League Against Epilepsy criteria. Nearly half of those surveyed believed that LGS was both over- and under-diagnosed.
One interesting finding was that healthcare practitioners were relatively reticent to use cannabidiol, even though LGS is one of the approved indications, supported by data from randomized placebo-controlled trials. Despite the evidence supporting its use, only 43% considered cannabidiol for early use (<5 antiseizure medications trialed). Surgical interventions were also explored, with more individuals favoring corpus callosotomy over vagus nerve stimulation and <1% reporting using deep brain stimulation.
This study has several key limitations, so the results should be interpreted with some caution. The population surveyed was heterogeneous, including both neurologists and allied healthcare professionals. There is also likely significant response bias as individuals might be more likely to complete the survey if they had a particular interest in LGS or epilepsy. The authors state that the survey was distributed through the Canadian League Against Epilepsy and the Canadian Neurological Sciences Federation but did not report the total number of individuals contacted, so it is not possible to calculate the response percentage.
Nevertheless, Datta and Whitney’s data highlight the significant room for improvement in management of LGS in Canada. Better education is needed in neurology residency so that graduating neurologists are comfortable diagnosing LGS early, taking an evidence-based approach to medical and surgical management and regularly screening for comorbidities. Neurologists’ continuing medical education should include updates on LGS so that their practice remains current for individuals with this devastating disease. Finally, epilepsy centers should push to develop expertise in surgical techniques such as deep brain stimulation, as these have the potential to dramatically help certain individuals with LGS.
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In “Practice Patterns and Care Gaps in Lennox-Gastaut Syndrome: A Call for Action,” Datta and Whitney report findings from a web-based survey distributed to neurologists and allied health workers across Canada. Reference Datta and Whitney1 The 41-item questionnaire focused on issues surrounding Lennox–Gastaut syndrome (LGS), including diagnostic criteria, genetic testing, management and comorbidities. The primary aim was to evaluate the current state of LGS clinical practice in Canada.
The authors collected and analyzed data from 111 healthcare practitioners, approximately ¾ of whom were neurologists. The findings suggest a significant percentage of those involved in LGS care lack some essential knowledge about the condition. For example, 1 in 5 indicated that genetic testing and/or neuroimaging would be needed to diagnose LGS, when this is not the case based on International League Against Epilepsy criteria. Nearly half of those surveyed believed that LGS was both over- and under-diagnosed.
One interesting finding was that healthcare practitioners were relatively reticent to use cannabidiol, even though LGS is one of the approved indications, supported by data from randomized placebo-controlled trials. Despite the evidence supporting its use, only 43% considered cannabidiol for early use (<5 antiseizure medications trialed). Surgical interventions were also explored, with more individuals favoring corpus callosotomy over vagus nerve stimulation and <1% reporting using deep brain stimulation.
This study has several key limitations, so the results should be interpreted with some caution. The population surveyed was heterogeneous, including both neurologists and allied healthcare professionals. There is also likely significant response bias as individuals might be more likely to complete the survey if they had a particular interest in LGS or epilepsy. The authors state that the survey was distributed through the Canadian League Against Epilepsy and the Canadian Neurological Sciences Federation but did not report the total number of individuals contacted, so it is not possible to calculate the response percentage.
Nevertheless, Datta and Whitney’s data highlight the significant room for improvement in management of LGS in Canada. Better education is needed in neurology residency so that graduating neurologists are comfortable diagnosing LGS early, taking an evidence-based approach to medical and surgical management and regularly screening for comorbidities. Neurologists’ continuing medical education should include updates on LGS so that their practice remains current for individuals with this devastating disease. Finally, epilepsy centers should push to develop expertise in surgical techniques such as deep brain stimulation, as these have the potential to dramatically help certain individuals with LGS.
Competing interests
KAM has served as a paid consultant for Jazz Pharmaceuticals, UCB, and Pendopharm.