Dataset Information

Nodding syndrome: bridging the gap-a scoping review protocol.

ABSTRACT: INTRODUCTION:Nodding syndrome (NS) is an encephalopathy of unknown origin that affects children aged between 3 and 15 years old. Cases have been reported since the 1950 in Tanzania and South Sudan, the most heavily affected population is the Acholi community in Uganda. In response to the high incidence of the disease, the Ugandan Government has developed a management algorithm, but access to such measures in affected communities is limited. There is little funding for research on the disease, consequently, few studies have been conducted to date. Nevertheless, the number of scientific publications on NS has increased since 2013, reporting several aetiological hypotheses, management algorithms and cases of stigmatisation; however, none has obtained conclusive results.This document describes a protocol for a scoping review of NS to date aimed at obtaining a broad overview of the disease. The results will identify gaps in knowledge in order to better guide future research, intervention strategies, health policies in areas at risk and cooperation and development programmes. METHODS AND ANALYSIS:To identify the relevant data, we will conduct a literature search using the electronic databases PubMed/Medline, Embase, Social Science Citation Index Scopus, Scientific Electronic Library Online (SciELO), Literatura Latinoamericana y del Caribe en Ciencias de la Salud (LILACS), Social Science Citation Index Expanded and The Cochrane Library. We will also include grey literature. The search strategy will be designed by a librarian.Two members of the team will work independently to identify studies for inclusion and perform data extraction. The search results will be assessed by two independent reviewers and data from the included studies will be charted and summarised in duplicate. The data will be summarised in tables and figures to present the research landscape and describe and map gaps. ETHICS AND DISSEMINATION:Ethical approval is not required. The scoping review will adhere to the Preferred Reporting Items for Systematic Reviews andMeta-Analyses-ScR guidelines. The results will be disseminated at scientific congresses and meetings.

SUBMITTER: De Castro AC

PROVIDER: S-EPMC7577026 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature

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Nodding syndrome: bridging the gap-a scoping review protocol.

De Castro Ana Cristina AC Ortega-Deballon Ivan I

BMJ open 20201020 10

<h4>Introduction</h4>Nodding syndrome (<i>NS</i>) is an encephalopathy of unknown origin that affects children aged between 3 and 15 years old. Cases have been reported since the 1950 in Tanzania and South Sudan, the most heavily affected population is the Acholi community in Uganda. In response to the high incidence of the disease, the Ugandan Government has developed a management algorithm, but access to such measures in affected communities is limited. There is little funding for research on ...[more]

PMID: 33082177

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Project description:BackgroundCancer-related fatigue (CRF) is one of the most common and distressing symptoms in people with cancer. Although efficacy of interventions for CRF have been extensively investigated, less has been done to ensure successful translation into routine clinical practice. The aim of this systematic scoping review was to synthesise knowledge surrounding the implementation of CRF interventions, summarise the processes and outcomes of implementation strategies used, and identify opportunities for further research.MethodsPubMed, Cochrane CENTRAL, EMBASE and CINAHL databases were searched (up to December 2020). The Cochrane Effective Practice and Organisation of Care (EPOC) Group taxonomy and the RE-AIM Framework were used to guide the evaluation of implementation strategies and outcomes, respectively.ResultsSix studies were included. Three used an implementation framework (PARIHS, KTA, Cullens & Adams' Implementation Guide) to guide implementation. Overall, the implementation strategies used across all studies were reported to have directly resulted in immediate changes at the clinician level (e.g., increased clinician behaviours, self-efficacy, attitudes, knowledge of CRF management). No clear relationship was found between the use of implementation models and the number or type of implementation strategies used. For outcomes, Effectiveness and Implementation were the most highly reported RE-AIM measures followed by Reach then Maintenance. Adoption was the least reported.ConclusionsDespite the high prevalence of CRF and evidence-based interventions for managing CRF, there is limited evidence informing the sustainable implementation of these interventions. This systematic scoping review emphasises the lack of quality CRF implementation studies presently available in the literature leading to a disconnect between effective CRF interventions, routine clinical care, and cancer survivors at present. This review highlights the need for robust study designs guided by established frameworks to methodically design and evaluate the implementation of CRF management interventions in the future.

Project description:IntroductionClinical research broadly aims to influence decision-making in order to promote appropriate healthcare. Funding agencies should prioritise research projects according to needed research topics, methodological and cost-effectiveness considerations, and expected social value. In Chile, there is no local diagnosis regarding recent clinical research that might inform prioritisation for future research funding. This research aims to comprehensively identify and classify Chilean health research studies, elaborating evidence gap maps for the most burdensome local conditions.Methods and analysisWe will search in electronic databases (MEDLINE, Embase, PsycINFO, CINAHL, LILACS and WoS) and perform hand searches to retrieve, identify and classify health research studies conducted in Chile or by authors whose affiliations are based in Chile, from 2000 onwards. We will elaborate evidence matrices for the 20 conditions with the highest burden in Chile (according to the Global Burden of Disease 2019) selected from those defined under the General Regime of the Health Guarantees Act. To elaborate the evidence gap maps, we will consider prioritised interventions and core outcome sets. To identify knowledge gaps and estimate redundant research, we will contrast these gap maps with the available international evidence of high or moderate certainty of evidence, for each specific clinical question. For this purpose, we will search systematic reviews using the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) approach.Ethics and disseminationNo ethical approval is required to conduct this project. We will submit our results in both peer-reviewed journals and scientific conferences. We will aim to disseminate our findings through different academic platforms, social media, local press, among others. The final results will be communicated to local funding agencies and government stakeholders.DiscussionWe aim to provide an accurate and up-to-date picture of the research gaps-to be filled by new future findings-and the identification of redundant research, which will constitute relevant information for local decision-makers.

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Project description:ObjectivesAssess whether impactibility modelling is being used to refine risk stratification for preventive health interventions.DesignSystematic review.SettingPrimary and secondary healthcare populations.PapersArticles published from 2010 to 2020 on the use or implementation of impactibility modelling in population health management, reported with the terms 'intervenability', 'amenability', and 'propensity to succeed' (PTS) and associated with the themes 'care sensitivity', 'characteristic responders', 'needs gap', 'case finding', 'patient selection' and 'risk stratification'.InterventionsQualitative synthesis to identify themes for approaches to impactibility modelling.ResultsOf 1244 records identified, 20 were eligible for inclusion. Identified themes were 'health conditions amenable to care' (n=6), 'PTS modelling' (n=8) and 'comparison or combination with clinical judgement' (n=6). For the theme 'health conditions amenable to care', changes in practice did not reduce admissions, particularly for ambulatory care sensitive conditions, and sometimes increased them, with implementation noted as a possible issue. For 'PTS modelling', high costs and needs did not necessarily equate to high impactibility and targeting a larger number of individuals with disorders associated with lower costs had more potential. PTS modelling seemed to improve accuracy in care planning, estimation of cost savings, engagement and/or care quality. The 'comparison or combination with clinical judgement' theme suggested that models can reach reasonable to good discriminatory power to detect impactable patients. For instance, a model used to identify patients appropriate for proactive multimorbid care management showed good concordance with physicians (c-statistic 0.75). Another model employing electronic health record scores reached 65% concordance with nurse and physician decisions when referring elderly hospitalised patients to a readmission prevention programme. However, healthcare professionals consider much wider information that might improve or impede the likelihood of treatment impact, suggesting that complementary use of models might be optimum.ConclusionsThe efficiency and equity of targeted preventive care guided by risk stratification could be augmented and personalised by impactibility modelling.

Project description:Abstract Nodding syndrome is an uncommon disorder of childhood onset and unknown cause, presenting with nodding seizures, and which appears to occur exclusively in clusters in sub-Saharan Africa. An endemic pattern of disease was initially described in Tanzania and in Liberia; epidemic occurrences were later reported in South Sudan and northern Uganda. Not the least significant of the many questions remaining about nodding syndrome concerns the common presence or otherwise of neurological features other than seizures—clearly relevant to the core issue of whether this is a focal, primary epileptic disease, or a multi-system CNS disorder, with, in turn implications for its aetiology. We had the opportunity to interview and clinically to examine 57 affected individuals in rural northern Uganda some 10 years after onset. In this observational cross-sectional study, nodding onset was invariably between the ages of 5 and 14, presenting with food-triggered nodding attacks in over 75% of cases; 86% went on to develop other seizure types. In 53 of 57 nodding syndrome individuals (93%), there was a definite history of the child and his or her family having resided in or been fed from an internally displaced person camp for some time prior to the onset of nodding. A half of nodding syndrome sufferers (28/57) had focal neurological abnormalities—mainly pyramidal signs (92%), often asymmetric, some with extrapyramidal abnormalities. Many individuals (28/57) were severely functionally disabled, ranging from ‘sometimes can dig’ to ‘can do nothing at home’ or ‘cannot even feed herself’. Such sufferers tended more frequently to have significant burns, and clear cognitive impairment. We conclude that nodding syndrome is a unique multisystem CNS disorder of childhood onset and then slow progression over several years often followed by spontaneous stabilisation, consistent with an underlying self-limiting neurodegenerative process. We discuss the possibility that this might be triggered by food-related mycotoxins, within a fixed window of CNS vulnerability during childhood. Nodding syndrome is a poorly understood, predominantly epileptic disorder identified almost exclusively in rural East Africa. Focal neurological signs have not been studied. Scolding et al. examined 57 individuals with chronic nodding syndrome in rural settings in northern Uganda and found pyramidal and/or extrapyramidal signs in almost half. Graphical Abstract Graphical Abstract

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Nodding syndrome: bridging the gap-a scoping review protocol.

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Nodding syndrome: bridging the gap-a scoping review protocol.

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