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Qualitative evaluation of the outcomes of care and treatment for children and adolescents with nodding syndrome and other epilepsies in Uganda.

ABSTRACT: BACKGROUND:In 2012, the Ugandan Government declared an epidemic of Nodding Syndrome (NS) in the Northern districts of Gulu, Kitgum, Lamwo and Pader. Treatment guidelines were developed and NS treatment centres were established to provide symptomatic control and rehabilitation. However, a wide gap remained between the pre-defined care standards and the quality of routine care provided to those affected. This study is to qualitatively assess adherence to accepted clinical care standards for NS; identify gaps in the care of affected children and offer Clinical Support Supervision (CSS) to Primary Health Care (PHC) staff at the treatment centres; and identify psychosocial challenges faced by affected children and their caregivers. METHODS:This case study was carried out in the districts of Gulu, Kitgum, Lamwo and Pader in Uganda from September to December in 2015. Employing the 5-stage approach of Clinical Audit, data were collected through direct observations and interviews with PHC providers working in public and private-not-for-profit health facilities, as well as with caregivers and political leaders. The qualitative data was analysed using Seidel model of data processing. RESULTS:Clinical Audit and CSS revealed poor adherence to treatment guidelines. Many affected children had sub-optimal NS management resulting in poor seizure control and complications including severe burns. Root causes of these outcomes were frequent antiepileptic drugs stock outs, migration of health workers from their work stations and psychosocial issues. There was hardly any specialized multidisciplinary team (MDT) to provide for the complex rehabilitation needs of the patients and a task shifting model with inadequate support supervision was employed, leading to loss of skills learnt. Reported psychosocial and psychosexual issues associated with NS included early pregnancies, public display of sexual behaviours and child abuse. CONCLUSIONS:Despite involvement of relevant MDT members in the development of multidisciplinary NS guidelines, multidisciplinary care was not implemented in practice. There is urgent need to review the NS clinical guidelines. Quarterly CSS and consistent anticonvulsant medication are needed at health facilities in affected communities. Implementation of the existing policies and programs to deal with the psychosocial and psychosexual issues that affect children with NS and other chronic conditions is needed.

SUBMITTER: Abbo C

PROVIDER: S-EPMC6489326 | biostudies-literature | 2019 Apr

REPOSITORIES: biostudies-literature

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Qualitative evaluation of the outcomes of care and treatment for children and adolescents with nodding syndrome and other epilepsies in Uganda.

Abbo Catherine C Mwaka Amos Deogratius AD Opar Bernard Toliva BT Idro Richard R

Infectious diseases of poverty 20190430 1

<h4>Background</h4>In 2012, the Ugandan Government declared an epidemic of Nodding Syndrome (NS) in the Northern districts of Gulu, Kitgum, Lamwo and Pader. Treatment guidelines were developed and NS treatment centres were established to provide symptomatic control and rehabilitation. However, a wide gap remained between the pre-defined care standards and the quality of routine care provided to those affected. This study is to qualitatively assess adherence to accepted clinical care standards fo ...[more]

PMID: 31036087

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Project description:BackgroundNodding syndrome is a neurological disorder which had affected about 3000 children with over 170 deaths in northern Uganda by 2012. With limited data on health seeking, the study aimed to assess the health seeking behavior and associated factors among caretakers of children with nodding syndrome in Pader district.MethodsA mixed methods cross sectional study was conducted in July 2013 among 249 caretakers of children with nodding syndrome in three sub-counties of Pader. Respondents were consecutively interviewed using semi-structured questionnaires. Eleven key informants were additionally interviewed. We determined the associations of various factors with health care seeking and obtained adjusted odds ratios and 95% confidence intervals using logistic regression model. Quantitative data was analysed using Stata version 12 while qualitative data was analysed manually and quotes reported.ResultsMost caretakers, 78.3% (195/249) sought care first from a health facility, 12.9% (32/249) visited traditional healers and 8.8% (22/249) self-medicated. Of those who sought care from a health facility, 50% sought care after a month. Factors associated with improved care seeking included: Time taken to reach care 1-3 hours; adjusted odds ratio = 6.4 (95% CI = 2.96-14.03), time spent in care above five years; adjusted odds ratio = 12.0 (95% CI: 1.24-117.73) and changed care seeking place; adjusted odds ratio = 17.2 (95% CI: 3.64-81.67).Conclusion/ recommendationCaretakers sought care from multiple places. One in five caretakers still sought care outside a formal health facility. Many respondents who sought care first from health facilities went late, at least one month after symptoms onset. Factors associated with health seeking included distance, duration in treatment and not having changing care provider. There is need for massive sensitization of community to enhance prompt care seeking. More research is needed to elucidate the cause, thus finding the treatment for nodding syndrome, to prevent "wandering in hope".

Project description:ObjectivesNodding 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.DesignThis 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.ParticipantsParticipants were patients with WHO-defined NS and patients with OCE attending the same centres.Outcome measuresThe 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.ResultsPatients 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%.ConclusionsUgandan children with NS show substantial clinical and functional improvements with symptomatic treatments suggesting that NS is probably a reversible encephalopathy.

Project description:BackgroundEvidence for the effectiveness of psychological treatments in low- and middle-income countries is increasing. However, there is a lack of systematic approaches to guide implementation in government health systems. The objective of this study was to address this gap by employing the Replicating Effective Programs (REP) framework to guide contextualization of a psychological treatment in the Uganda public health system for caregivers of children affected by nodding syndrome, a neuropsychiatric disorder endemic to Sub-Saharan Africa associated with high morbidity and disability.MethodsTo contextualize a psychological treatment, we followed the four components of the REP framework: pre-conditions, pre-implementation, implementation, and maintenance and evolution. A three-step process involved reviewing health services available for nodding syndrome-affected families and current evidence for psychological treatments, qualitative formative research, and analysis and documentation of implementation activities. Stakeholders included members of affected communities, health care workers, therapists, local government leaders, and Ministry of Health officials. Detailed written, audio, and video documentation of the implementation activities was used for content analysis.ResultsDuring the pre-condition component of REP, we selected group interpersonal therapy (IPT-G) because of its feasibility, acceptability, effectiveness in the local setting, and availability of locally developed training materials. During the pre-implementation component, we adapted the training, logistics, and technical assistance strategies in conjunction with government and stakeholder working groups. Adaptations included content modification based on qualitative research with caregivers of children with nodding syndrome. During the implementation component, training was shortened for feasibility with government health workers. Peer-to-peer supervision was selected as a sustainable quality assurance method. IPT-G delivered by community health workers was evaluated for fidelity, patient outcomes, and other process-level variables. More than 90% of beneficiaries completed the treatment program, which was effective in reducing caregiver and child mental health problems. With the Ministry of Health, we conducted preparatory activities for the maintenance and evolution component for scale-up throughout the country.ConclusionsThe REP framework provides a systematic approach to guide contextualization of psychological treatments for delivery in low-resource public health systems. Specific recommendations are provided for REP's application in global mental health.Trial registrationISRCTN11382067 ; 08/06/2016; retrospectively registered.

Project description:ObjectiveNodding syndrome is a poorly understood epileptic encephalopathy characterized by a unique seizure type-head nodding-and associated with Onchocerca volvulus infection. We hypothesized that altered immune activation in the cerebrospinal fluid (CSF) and plasma of children with nodding syndrome may yield insights into the pathophysiology and progression of this seizure disorder.MethodWe conducted a case-control study of 154 children (8 years or older) with long-standing nodding syndrome and 154 healthy age-matched community controls in 3 districts of northern Uganda affected by nodding syndrome. Control CSF samples were obtained from Ugandan children in remission from hematological malignancy during routine follow-up. Markers of immune activation and inflammation (cytokines and chemokines) and complement activation (C5a) were measured in plasma and CSF using ELISA or Multiplex Luminex assays. O volvulus infection was assessed by serology for anti-OV-16 IgG levels.ResultsThe mean (SD) age of the population was 15.1 (SD: 1.9) years, and the mean duration of nodding syndrome from diagnosis to enrollment was 8.3 (SD: 2.7) years. The majority with nodding syndrome had been exposed to O volvulus (147/154 (95.4%)) compared with community children (86/154 (55.8%)), with an OR of 17.04 (95% CI: 7.33, 45.58), P < .001. C5a was elevated in CSF of children with nodding syndrome compared to controls (P < .0001). The levels of other CSF markers tested were comparable between cases and controls after adjusting for multiple comparisons. Children with nodding syndrome had lower plasma levels of IL-10, APRIL, CCL5 (RANTES), CCL2, CXCL13, and MMP-9 compared with community controls (P < .05 for all; multiple comparisons). Plasma CRP was elevated in children with nodding syndrome compared to community children and correlated with disease severity.SignificanceNodding syndrome is associated with exposure to O. volvulus. Compared to controls, children with long-standing symptoms of nodding syndrome show evidence of complement activation in CSF and altered immune activation in plasma.

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Qualitative evaluation of the outcomes of care and treatment for children and adolescents with nodding syndrome and other epilepsies in Uganda.

Publications

Qualitative evaluation of the outcomes of care and treatment for children and adolescents with nodding syndrome and other epilepsies in Uganda.

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