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Long-term outcomes in patients with West syndrome: an outpatient clinical study
Betül Tekin Güveli1, Özlem Çokar2, Nimet Dörtcan3
1Bakirkoy Research and Training Hospital for Psychiatry, Neurology, Neurosurgery, Department of Neurology, Istanbul, Turkey.
Insights
West syndrome (WS) significantly impacts child development, with many requiring lifelong care. Early diagnosis and treatment are crucial for improving outcomes and quality of life for children with infantile spasms.
Area of Science:
- Pediatric Neurology
- Developmental Neuroscience
- Epileptology
Background:
- West syndrome (WS) affects nearly half of infants with seizures in their first year.
- Prognosis and psychosocial outcomes in children with WS are highly variable.
- Understanding factors influencing WS outcomes is critical for patient management.
Purpose of the Study:
- To investigate factors affecting the long-term prognosis of children with West syndrome.
- To identify clinical, laboratory, and imaging predictors of neurodevelopmental and epilepsy outcomes in WS.
Main Methods:
- A cohort of 109 patients with WS was followed for at least 3 years.
- Clinical, laboratory, and imaging data were systematically collected.
- Neurodevelopmental status, social dependence, and epilepsy control were assessed.
Main Results:
- Symptomatic etiology, pre-existing developmental delay, persistent epilepsy, and male gender negatively impacted outcomes.
- Nearly 30% of patients remained socially dependent, and over 60% required assistance.
- While 8.8% achieved normal development, 45.1% had uncontrollable seizures despite antiepileptic drugs (AEDs).
Conclusions:
- One-third of WS patients experienced severe consequences.
- Two-thirds of patients can achieve an acceptable quality of life with early diagnosis and intervention.
- Prompt therapeutic measures are essential for optimizing long-term outcomes in West syndrome.
Purpose:
Nearly half of all patients with seizure onset in the first year of life suffer from West syndrome (WS). The prognosis of epilepsy and psychosocial outcomes in children with WS are variable. This study was performed to examine the factors influencing the outcome of this patient population.
Methods:
A total of 109 patients with WS followed up regularly for at least 3 years were included in the study. Relevant clinical, laboratory, and imaging data were collected.
Results:
The male/female ratio was 65/44 (59.6%/40.4%). The mean age at onset of infantile spasm (IS) was 6 ± 6 (1-36) months. With regard to neuro-developmental and social conditions during the final evaluation, 29.4% of the patients were socially dependent on caregivers, 61.8% needed assistance, and 8.8% were normal. Among the patients, 5.9% were free of epilepsy and antiepileptic drugs (AED) for at least 2 years, 49.0% had no seizures with AEDs, and 45.1% had uncontrollable seizures. Parameters with significant negative effects on the long-term outcomes included symptomatic etiology, presence of developmental retardation before the onset of IS, persistence of active epilepsy, and male gender.
Conclusion:
In this study, 37 (33.9%) patients had severe consequences as a result of WS. The majority of the rest could cope with daily life with varying degrees of assistance. Eight percent of the patients had a normal development. These results draw attention to the two-thirds of patients with WS who have the chance of an acceptable quality of life (QoL) with early diagnosis and therapeutic measures.
