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December 3rd is the International Day of Persons with Disabilities (IDPD).
The IDPD was established as an international day by the United Nations General Assembly in 1992. Its purpose is to promote a better understanding of issues faced by people with disabilities and ensure that they have the right to live a decent life and receive support. Accordingly, the theme for 2023 is “United in action to rescue and achieve the Sustainable Development Goals (SDGs) for, with and by persons with disabilities.”
According to a survey by the Ministry of Health, Labor and Welfare, there are approximately 4.36 million people with physical disabilities, 1.09 million people with intellectual disabilities, and 6.15 million people with mental disabilities in Japan; approximately 9.2% of the population has some kind of disability.
Epilepsy, a mental disorder, is a brain disease that causes repeated seizures with a prevalence of 1 in 100 people, making it a disease that can affect anyone. Childhood epilepsy is associated with several complications; these may be a developmental disorder (ASD or ADHD), severe physical disability, or cognitive dysfunction. Early treatment of status seizures is necessary to prevent complications. In addition, there are many cases where a proper diagnosis is not made and the condition is easily mistaken for another disease (febrile convulsions, syncope, tics, etc.); therefore, the judgment, examination, and diagnosis of a doctor (pediatrician) are important.
On the occasion of the IDPD, CareNet and Macromill CareNet conducted a survey of 100 physicians (47 in pediatrics, 23 in neurology, and 33 in psychiatry) among CareNet members who are involved in the care of pediatric epilepsy patients.
<Survey date>2023/11/3
・Among pediatric epilepsy patients, 81% were receiving drug treatment and 29% were prescribed rescue drugs.
・Physicians’ awareness of the definitions proposed by the International League Against Epilepsy (ILAE), “t1: timing time to initiate (consider) treatment” and “t2: time when neurological sequelae may remain,” was 46%. In addition, only 33% of doctors understood “Rapid epileptic seizure termination (REST)/ First Aid for Seizure Termination (FAST).” This suggests that the concept and timing of early treatment for epileptic seizures are not well understood by pediatric epilepsy practitioners.
・Regarding the prescription rate of each rescue drug prescribed to pediatric epilepsy patients, “Diazepam suppositories (DIAPP suppositories)” were the most common at 61%, followed by “Midazolam oromucosal solution (BUCCOLAM)” at 29%.
・It was observed that the prescription of rescue drugs was limited to some patients and that the concept and timing of early treatment were not fully understood by medical practitioners. To prevent the aftereffects of epileptic seizures, it is necessary to provide information to medical institutions regarding early responses and to communicate and support patients, their families, and educational settings.
The proportion of pediatric epilepsy patients who received drug treatment in the last 12 months was 81%, of whom 36% were prescribed rescue medication. 66% of the patients used the prescribed rescue medication, of which 62% were transported and treated at the facility after using the rescue medication.
[Table1]
When asked “are you aware of the definition proposed by the International League Against Epilepsy (ILAE) in 2015 regarding epileptic superimposed seizures?” “t1: the timing time to initiate (and consider) treatment” and “t2: the time when neurological sequelae can remain” were known by 46% of doctors respectively, while 30% of doctors knew both “t1” and “t2.”
Only 32% of doctors even knew that “t1 and t2 differ depending on the pathological condition,” while 32% did not know either.
Regarding “REST*/FAST**,” 33% of doctors could explain it to others or understood it, 28% knew it only by name, and 39% did not know it. This suggests that the concept and timing of early treatment for epileptic seizures are not well understood by pediatric epilepsy practitioners.
*REST: Rapid epileptic seizure termination
** FAST: First Aid for Seizure Termination
[Table2]
[Table3]
The proportion of each rescue drug prescribed for pediatric patients with epilepsy was highest for Diazepam Suppositories (DIAPP Suppositories) at 61%, followed by Midazolam O romucosal Solution (BUCCOLAM) at 29%. The proportion of doctors using each drug was low, with 89% using Diazepam Suppositories (DIAPP Suppositories) compared to 46% using Midazolam Oromucosal Solution (BUCCOLAM).
[Table4]
When asked “why they prescribe the rescue drugs they prescribe the most and what they expect from them,” the most common reason given by doctors who use Diazepam suppositories (DIAPP Suppositories) was “high efficacy” (78%), followed by “high safety” and “expectation of immediate effect” (41%). Many doctors who use Midazolam Oromucosal Solution (BUCCOLAM) also selected “high efficacy,” “high safety,” and “expectation of immediate effect,” while approximately half of the doctors selected “simplicity of administration and administration method” and “ease of storage and carrying” as other factors.
[Table5]
When asked in an open-ended question about “what guidance they give patients/families regarding the decision criteria for administering rescue medication,” 58% of doctors answered, “when the seizure lasts.” Of these, approximately half answered, “lasting longer than 5 minutes” and a third answered “lasting longer than 10 minutes.” Including the 38% of doctors who stated that they would use rescue medication as soon as a seizure appeared, 73% of doctors instructed the administration of rescue medication based on “within five minutes.” This indicates that they informed the patients/families to respond early. However, considering that the DIAPP Suppositories is difficult to administer during convulsions owing to its suppository form and that the effect is only felt 15–30 minutes after administration, concerns remain as to whether early treatment can be carried out.
In contrast, it has also been observed that the prescription of rescue medication is limited to some patients, and the concept and timing of early treatment are not fully disseminated among medical practitioners. To prevent the sequelae of epileptic seizures due to superimposed seizures, it is necessary to provide information to medical institutions regarding early response, as well as communication and support among patients, their families, and educational institutions.
[Table6]
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