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Patients with Nodding Syndrome in Uganda Improve with Symptomatic Treatment: a Cross-Sectional Study

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Patients with Nodding Syndrome in Uganda Improve with Symptomatic Treatment: a Cross-Sectional Study Open Access Research BMJ Open: first published as 10.1136/bmjopen-2014-006476 on 14 November 2014. Downloaded from Patients with nodding syndrome in Uganda improve with symptomatic treatment: a cross-sectional study Richard Idro,1,2 Hanifa Namusoke,1 Catherine Abbo,3,4 Byamah B Mutamba,3,5 Angelina Kakooza-Mwesige,1,6 Robert O Opoka,1 Abdu K Musubire,7 Amos D Mwaka,7 Bernard T Opar8 To cite: Idro R, Namusoke H, ABSTRACT et al Strengths and limitations of this study Abbo C, . Patients with Objectives: Nodding syndrome (NS) is a poorly nodding syndrome in Uganda understood neurological disorder affecting thousands ▪ improve with symptomatic This is the largest cohort of patients with of children in Africa. In March 2012, we introduced a treatment: a cross-sectional nodding syndrome ever reported on to date. The study. BMJ Open 2014;4: treatment intervention that aimed to provide report examines preintervention clinical and e006476. doi:10.1136/ symptomatic relief. This intervention included sodium functional features before a well-designed treat- bmjopen-2014-006476 valproate for seizures, management of behaviour and ment intervention was implemented and how emotional difficulties, nutritional therapy and physical these improved over the course of the ensuing rehabilitation. We assessed the clinical and functional ▸ Prepublication history for year. The improvements in patients with nodding this paper is available online. outcomes of this intervention after 12 months of syndrome were also compared with those of a To view these files please implementation. similar cohort with other epilepsies. visit the journal online Design: This was a cross-sectional study of a cohort ▪ However, we did not conduct a prospective (http://dx.doi.org/10.1136/ of patients with NS receiving the specified intervention. study but rather before and after cross-sectional bmjopen-2014-006476). We abstracted preintervention features from records studies, meaning that we cannot comment on and compared these with the current clinical status. We the incidence of death or loss to follow. We also Received 28 August 2014 performed similar assessments on a cohort of patients relied on patient records for the preintervention Revised 1 October 2014 with other convulsive epilepsies (OCE) and compared Accepted 17 October 2014 features. the outcomes of the two groups. ▪ Other than head nodding, seizures in nodding Participants: Participants were patients with WHO- syndrome are similar to seizures in other convul- defined NS and patients with OCE attending the same sive epilepsies and over time, head nodding may http://bmjopen.bmj.com/ centres. cease in some patients with nodding syndrome, Outcome measures: The primary outcome was the increasing the risk of misclassification. proportion of patients with seizure freedom (≥1 month ▪ In addition, we did not determine compliance with without seizures). Secondary outcome measures antiepileptic drugs or have reports of the adverse included a reduction in seizure frequency, resolution of effects patients experienced while on treatment behaviour and emotional difficulties, and independence and did not have a detailed documentation of the in basic self-care. nutritional and cognitive stimulatory treatments Results: Patients with NS had had a longer duration of each child received. We, however, limited the symptoms (median 5 (IQR 3, 6) years) compared with effectsofsuchbiasbychoosingonlyafew on September 28, 2021 by guest. Protected copyright. those with OCE (4 (IQR 2, 6) years), p<0.001. The outcome measures that are not easily confused. 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; BACKGROUND behaviour and emotional difficulties resolved in 194/327 Nodding syndrome is a poorly understood (59%) patients; 193/484 (40%) patients had enrolled in devastating neurological disorder affecting school including 17.7% who had earlier withdrawn due several thousand children in the sub-Saharan – to severe seizures, and over 80% had achieved African countries of South Sudan,1 3 – – independence in basic self-care. These improvements Uganda4 6 and Tanzania.7 9 The syndrome is were, however, less than that in patients with OCE of characterised by the almost daily atonic sei- whom 243/476 (51.1%) patients were seizure free and 4 For numbered affiliations see zures manifesting as clusters of head nods in whom the seizure frequency had reduced by 86%. and complicated by tonic clonic, focal, myo- end of article. Conclusions: Ugandan children with NS show clonic and/or atypical absence seizures, cog- substantial clinical and functional improvements with Correspondence to nitive and motor decline, malnutrition, symptomatic treatments suggesting that NS is probably fi 67 Dr Richard Idro; ridro1@ a reversible encephalopathy. behavioural and emotional dif culties. gmail.com The aetiology is unknown, although the Idro R, et al. BMJ Open 2014;4:e006476. doi:10.1136/bmjopen-2014-006476 1 Open Access BMJ Open: first published as 10.1136/bmjopen-2014-006476 on 14 November 2014. Downloaded from syndrome has been associated with infestation with community is quite limited, and in many cases categor- Onchocerca volvulus.157Studies of Tanzanian and isation into specific clinical groups is not possible. We Ugandan patients have concluded that nodding syn- therefore only included those with convulsive epilepsies. drome is probably symptomatic generalised epilepsy.467 Participants with onset of symptoms outside of the ages In Uganda, a multidisciplinary team developed man- 3–18 years were excluded to allow comparability with agement guidelines for care.10 The objective was to patients with nodding syndrome. relieve symptoms, as well as to offer primary and second- ary prevention of disability, and rehabilitation to The intervention improve function. The most important clinical needs The nodding syndrome treatment centres in Lamwo, were identified as seizure control, relief of behavioural Kitgum and Pader were opened in March 2012 followed and emotional difficulties, nutritional therapy, physical by those in Amuru, Gulu, Lira and Oyam in June 2012. and cognitive rehabilitation. The first group of patients Prior to this, clinicians and nurses at each centre under- were enrolled in March 2012. We evaluated clinical out- went a 5-day training on the management of nodding comes of this intervention after a minimum of syndrome using the specified guideline.14 The training, 12 months. We hypothesised that if treated with appro- which also included general principles of epilepsy treat- priate anticonvulsants, patients with nodding syndrome ment, was provided through didactic lectures, role play, would achieve similar seizure control like patients with bedside clinical teachings and demonstrations by the other convulsive epilepsies. We therefore, in addition, same team that developed the guidelines. At the end of compared outcomes of patients with nodding syndrome the 5 days, each team returned to their centre and with those in patients with other convulsive epilepsies. worked with the trainers to initiate provision of care. Other than the centre in Kitgum, which is a district hos- pital (a level V health centre), all the others were health METHODS centre III. At each centre, clinical service was led by a Design and setting medical or psychiatric clinical officer (individuals with a This was a cross-sectional survey of a cohort of patients diploma in clinical medicine or psychiatry after 3 years with nodding syndrome that evaluated the clinical and of training), general and psychiatric nurses, laboratory functional outcomes of patients receiving the Ugandan technicians and either a physiotherapist or occupational Ministry of Health treatment intervention at least therapist. In Kitgum hospital, the team was led by a 12 months after initiation of therapy. We performed a medical officer (MBChB). These teams were supported similar evaluation on a cohort of patients with other con- by local lay volunteers—village health workers—who vulsive epilepsies that attended the same centres and coordinated follow-up and ambulatory care in homes. In compared improvements in the two groups. The study each district, supervisory oversight was provided by a dis- was conducted in northern Uganda, the region most trict nodding syndrome focal person, the District Health http://bmjopen.bmj.com/ affected by nodding syndrome in the country. The popu- Officer and the district nodding syndrome committee, lation prevalence of probable nodding syndrome among while nationally there was a national nodding syndrome children of the affected age group in the study area has coordinator who brought everyone together. Over the 11 been estimated as 6.8 (95% CI 5.9 to 7.7) per 1000. next 12 months, each centre received support supervi- This region also suffered a protracted armed rebellion sion visits on at least two occasions to maintain skills and 12 that lasted over 20 years resulting in massive internal attend to issues arising. – displacement. It is only in the past 6 7 years that peace Details of the treatment are described elsewhere.10 In prevailed and the population returned to their homes. summary, inpatient emergency care was offered to patients on September 28, 2021 by guest. Protected copyright. with life-threatening comorbidities. Ambulatory and com- Participants munity care was offered to patients without comorbidities Participants were
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