Factors associated with treatment lag in infantile spasms

the aim of this study was to evaluate the conditions in which infantile spasms are diagnosed and their possible impact on the course of the disease.

we carried out a retrospective study of the reasons for delayed treatment of infantile spasms (treatment lag) in western France over the period 1990-2003. A total of 156 infants, 87 male (55%) and 69 female (45%), with infantile spasms were identified, in 45 (29%) of whom the spasms were symptomatic. They were aged 1 week to 24 months (median 20wks, mean 22.4, SD 13.3) at first symptoms. To be included in the study, participants had to exhibit a combination of clusters of spasms, altered psychomotor development, and paroxysmal electroencephalographic (EEG) activity, as defined by the International League Against Epilepsy. We did not restrict onset to the first year of life as infantile spasms may begin after the age of 1 year.

the mean time from appearance of first symptom to first visit to a medical practitioner was 4 weeks. In 14% of cases, the reason for the visit was non-neurological, the parents having noticed no neurological symptoms before the visit. The diagnosis was missed at first visit in 38% of the cases examined, with the incorrect diagnosis mostly commonly being gastro-oesophageal reflux or no abnormality. This increased to 74% after a second visit, in all cases based on an abnormal EEG. However, in 5% the time between first presentation and diagnosis was over 2 months and up to 10 visits were required. The time lag between first presentation and diagnosis was significantly longer for individuals presenting to general practitioners than to paediatricians (p=0.03). Response to treatment was poorer in those in whom diagnosis was delayed.

various steps could be taken to reduce treatment lag such as training general practitioners, informing the parents of individuals at risk about the possibility of infantile spasms, and recommending that EEG is performed before brain imaging in children with unexplained psychomotor delay.