Abstracts

Rationale: To assess practices associated with use of inpatient ACTH for infantile spasms (IS) among members of the child neurology society, specifically; admission duration, reasons for admission and maximal acceptable time lag from diagnosis of spasms until initiation of ACTH. Methods: E-mail survey of members of the Child Neurology Society (CNS) using REDCap. Responders were asked to answer questions about percentage of patients treated with ACTH, reasons to use (or not) ACTH, percentage of patients admitted for ACTH, perceived cost , participation in hospital vial program, investigations during inpatient admission, duration of admission, and the ideal time to start ACTH. Results: 258 people responded and 257 agreed to take the survey.212(82%) used ACTH for the treatment of IS, of which 203 practiced in the United States and were further analyzed. Of US participants, 49/54 (91%) pediatric epileptologists, 124/154 (81%) non-epileptologist child neurologists, 11/12 (92%) advanced practice nurses, 5/9 (56%) child neurology nurses and 14/17 (82%) trainees reported using ACTH. Pediatric epileptologists were more likely to use ACTH than child neurologists (p=0.08). Reasons for nonuse did not differ between epileptologists and child neurologists, although there was a trend for child neurologists to report high cost as a factor [2/54 (4%) epileptologists vs 20/154 (13%) child neurologists (p=0.06)]. There was no difference between the proportion of epileptologists and child neurologists who always admit patients for ACTH delivery [36/48 (75%) epileptologists versus 94/122 (77%) child neurologists (p=0.93)]. More than 50% of the responders (111/203) felt that ACTH should be started within 3 days of diagnosis while 63/203(3%) felt that a delay of up to 7 days was acceptable. 54% of the responders knew that they were participants in the hospital vial program with no difference between epileptologists (34/49, 69%) and child neurologists (74/124, 60%). Education of parents (182/203); EEG confirmation (138/203), blood pressure monitoring (126/203) and obtaining MRI (109 /203) were the commonest reasons to admit. Overall, reasons for admission were similar for epileptologists and child neurologists with the exception of child neurologists being more likely to report blood pressure monitoring as a reason [84/124 (68%) vs 23/49 (47%), p=0.011]. Mean length of admission was similar between epileptologists 1.67days, SD 0.77 and child neurologists 1.72 days, SD 0.85, P=0.39. 160/203 (79%) responders estimated the cost of ACTH. Two thirds substantially underestimated the cost: by >10,000 USD (66%) and by >20,000 USD (22%).Only 6% estimated the cost within 5000 US dollars of the actual cost of ACTH (34,162 USD at the primary author's institution). Conclusions: Consistent with US guidelines, ACTH is used preferentially by most practitioners to treat infantile spasms. The majority of practitioners prefer to admit patients to the hospital for ACTH administration for EEG confirmation, parental education ,MRI and blood pressure monitoring. Very few users are aware of the actual cost of ACTH.