Patients with nodding syndrome in Uganda improve with symptomatic treatment: a cross-sectional study.
OBJECTIVE
Nodding syndrome (NS) is a poorly understood neurological disorder affecting thousands of children in Africa. In March 2012, we introduced a treatment intervention that aimed to provide symptomatic relief. This intervention included sodium valproate for seizures, management of behaviour and emotional difficulties, nutritional therapy and physical rehabilitation. We assessed the clinical and functional outcomes of this intervention after 12 months of implementation.


METHODS
This was a cross-sectional study of a cohort of patients with NS receiving the specified intervention. We abstracted preintervention features from records and compared these with the current clinical status. We performed similar assessments on a cohort of patients with other convulsive epilepsies (OCE) and compared the outcomes of the two groups.


METHODS
Participants were patients with WHO-defined NS and patients with OCE attending the same centres.


METHODS
The primary outcome was the proportion of patients with seizure freedom (≥1 month without seizures). Secondary outcome measures included a reduction in seizure frequency, resolution of behaviour and emotional difficulties, and independence in basic self-care.


RESULTS
Patients with NS had had a longer duration of symptoms (median 5 (IQR 3, 6) years) compared with those with OCE (4 (IQR 2, 6) years), p<0.001. The intervention resulted in marked improvements in both groups; compared to the preintervention state, 121/484 (25%) patients with NS achieved seizure freedom and there was a >70% reduction in seizure frequency; behaviour and emotional difficulties resolved in 194/327 (59%) patients; 193/484 (40%) patients had enrolled in school including 17.7% who had earlier withdrawn due to severe seizures, and over 80% had achieved independence in basic self-care. These improvements were, however, less than that in patients with OCE of whom 243/476 (51.1%) patients were seizure free and in whom the seizure frequency had reduced by 86%.


CONCLUSIONS
Ugandan children with NS show substantial clinical and functional improvements with symptomatic treatments suggesting that NS is probably a reversible encephalopathy.
Department of Paediatrics and Child Health, Mulago Hospital/Makerere University College of Health Sciences, Kampala, Uganda Nuffield Department of Medicine, Centre for Tropical Medicine and Global Health, University of Oxford, Oxford, UK.
Richard
R
Idro
Department of Paediatrics and Child Health, Mulago Hospital/Makerere University College of Health Sciences, Kampala, Uganda.
Hanifa
H
Namusoke
Department of Psychiatry, Mulago Hospital/Makerere University College of Health Sciences, Kampala, Uganda Division of Child and Adolescent Psychiatry, Red Cross War Memorial Children's Hospital, University of Cape Town, South Africa.
Catherine
C
Abbo
Department of Psychiatry, Mulago Hospital/Makerere University College of Health Sciences, Kampala, Uganda Butabika National Referral Hospital, Kampala, Uganda.
Byamah B
BB
Mutamba
Department of Paediatrics and Child Health, Mulago Hospital/Makerere University College of Health Sciences, Kampala, Uganda Astrid Lindgren Children's Hospital, Neuropediatric Research Unit, Karolinska Institutet, Sweden.
Angelina
A
Kakooza-Mwesige
Department of Paediatrics and Child Health, Mulago Hospital/Makerere University College of Health Sciences, Kampala, Uganda.
Robert O
RO
Opoka
Department of Internal Medicine, Mulago Hospital/Makerere University College of Health Sciences, Kampala, Uganda.
Abdu K
AK
Musubire
Department of Internal Medicine, Mulago Hospital/Makerere University College of Health Sciences, Kampala, Uganda.
Amos D
AD
Mwaka
Ministry of Health Headquarters, Kampala, Uganda.
Bernard T
BT
Opar
D000293:Adolescent; D000927:Anticonvulsants / Q000627:therapeutic use; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D064128:Nodding Syndrome / Q000628:therapy*; D044623:Nutrition Therapy / Q000379:methods*; D026741:Physical Therapy Modalities; D012648:Self Care / Q000379:methods; D013997:Time Factors; D016896:Treatment Outcome; D014454:Uganda; D014635:Valproic Acid / Q000627:therapeutic use*
D000927:Anticonvulsants; D014635:Valproic Acid