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Article ; Online: Changing the face of epilepsy in Africa.

Amos, Action

2020 Volume 106, Page(s) 107017

Language	English
Publishing date	2020-03-20
Publishing country	United States
Document type	Editorial
ZDB-ID	2010587-3
ISSN	1525-5069 ; 1525-5050
ISSN (online)	1525-5069
ISSN	1525-5050
DOI	10.1016/j.yebeh.2020.107017
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Article ; Online: Exploring ethical practice in NGOS on mental health research in Malawi.

Amos, Action / Guerra, Cristobal / Reid, Corinne / Toro, Edgardo / Calia, Clara

PLOS global public health

2024 Volume 4, Issue 4, Page(s) e0003001

Abstract: In recent years, an increasing trend in mental health research has been to collaborate with non-governmental organizations [NGOs] and their constituents. However, ethical difficulties can arise as a result of such partnerships. Understanding the ethics- ... ...

Abstract	In recent years, an increasing trend in mental health research has been to collaborate with non-governmental organizations [NGOs] and their constituents. However, ethical difficulties can arise as a result of such partnerships. Understanding the ethics-related practices of NGOs engaged in mental health research is therefore critical. This study addressed these questions in a Malawian context. The goal of this study was to investigate NGO's ethical practices in relation to mental health research by identifying characteristics that influence ethical practices and investigating staff conceptualization of ethics and mental health. Twenty individuals who work for different local NGOs took part in one-on-one interviews or a workshop about their engagement in diverse research initiatives. They pinpointed the areas that needed improvement, as well as the challenges and chances to create partnerships and increase research capability. The diversity in conceptualizing mental health was a key influence on research practices, with heterogeneity in definitions reflected in the use of cultural, spiritual, behavioural, or medical terms. Notably, there was also a greater emphasis on procedural ethics than ethics-in-practice. Collaboration dynamics and limited staffing capacity were cited as major ethical practice considerations. Each of these elements have an impact on NGOs' ethical behaviour when conducting mental health research. Participants in the study saw engagement with notions of both ethics and mental health as lacking or rudimentary in their institutions and felt that they needed to be improved through capacity building and stronger research involvement.
Language	English
Publishing date	2024-04-11
Publishing country	United States
Document type	Journal Article
ISSN	2767-3375
ISSN (online)	2767-3375
DOI	10.1371/journal.pgph.0003001
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Article ; Online: The WHO intersectoral global action plan and epilepsy cascade target: Towards a roadmap for implementation.

Winter, Sebastian F / Walsh, Donna / Amos, Action / Secco, Mary / Sofia, Francesca / Baker, Gus A

Seizure

2022 Volume 103, Page(s) 148–150

MeSH term(s)	Humans ; World Health Organization
Language	English
Publishing date	2022-11-25
Publishing country	England
Document type	Editorial
ZDB-ID	1137610-7
ISSN	1532-2688 ; 1059-1311
ISSN (online)	1532-2688
ISSN	1059-1311
DOI	10.1016/j.seizure.2022.09.022
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Zs.A 3573: Show issues

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Article ; Online: A research agenda for mental health in sub-Saharan Africa.

Sodi, Tholene / Abas, Melanie / Abdulaziz, Mohammed / Amos, Action / Burgess, Rochelle A / Hanlon, Charlotte / Kakunze, Adelard / Kpobi, Lily / Lund, Crick / Mwangi, Kibachio J / Mutiso, Victoria / Sunkel, Charlene / Yaro, Peter / Arseneault, Louise

Nature medicine

2024 Volume 30, Issue 3, Page(s) 616–617

MeSH term(s)	Mental Health ; Africa South of the Sahara/epidemiology ; Risk Factors
Language	English
Publishing date	2024-02-15
Publishing country	United States
Document type	Letter
ZDB-ID	1220066-9
ISSN	1546-170X ; 1078-8956
ISSN (online)	1546-170X
ISSN	1078-8956
DOI	10.1038/s41591-023-02779-6
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Article ; Online: Correction: Characteristics of people with epilepsy and Neurocysticercosis in three eastern African countries-A pooled analysis.

Stelzle, Dominik / Schmidt, Veronika / Keller, Luise / Ngowi, Bernard J / Matuja, William / Escheu, Gabrielle / Hauke, Peter / Richter, Vivien / Ovuga, Emilio / Pfausler, Bettina / Schmutzhard, Erich / Amos, Action / Harrison, Wendy / Kaducu, Joyce / Winkler, Andrea S

PLoS neglected tropical diseases

2023 Volume 17, Issue 1, Page(s) e0011101

Abstract: This corrects the article DOI: 10.1371/journal.pntd.0010870.]. ...

Abstract	[This corrects the article DOI: 10.1371/journal.pntd.0010870.].
Language	English
Publishing date	2023-01-26
Publishing country	United States
Document type	Published Erratum
ZDB-ID	2429704-5
ISSN	1935-2735 ; 1935-2735
ISSN (online)	1935-2735
ISSN	1935-2735
DOI	10.1371/journal.pntd.0011101
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Article ; Online: Characteristics of people with epilepsy and Neurocysticercosis in three eastern African countries-A pooled analysis.

PLoS neglected tropical diseases

2022 Volume 16, Issue 11, Page(s) e0010870

Abstract: Background: Neurocysticercosis (NCC), a zoonotic disease caused by the pork tapeworm T. solium, represents one of the most common causes of secondary epilepsy but remains often undiagnosed due to lack of awareness and diagnostic facilities.: ... ...

Abstract	Background: Neurocysticercosis (NCC), a zoonotic disease caused by the pork tapeworm T. solium, represents one of the most common causes of secondary epilepsy but remains often undiagnosed due to lack of awareness and diagnostic facilities. Methodology: We pooled data from four cross-sectional studies on epilepsy and NCC in eastern Africa. Study sites were in Uganda, Malawi and in Tanzania (Dar es Salaam and Haydom). The study in Uganda and Malawi were community-based, the two studies in Tanzania were hospital-based. The same questionnaire was used for assessment of clinical characteristics of patients with epilepsy. Computed tomography (CT) scans and serological testing were performed in order to diagnose NCC. Results: Overall, 1,179 people with epilepsy were included in our analysis. Of those, 941 PWE underwent CT scanning and were pooled for NCC analysis. Seventy patients were diagnosed with NCC, but NCC prevalence differed considerably between sites ranging from 2.0% (95%CI 0.4% to 3.6%) in Dar es Salaam to 17.5% (95%CI 12.4% to 22.6%) in Haydom. NCC prevalence did not show any association with sex but increased with age and was higher in rural than urban settings. In addition, being a farmer, non-Muslim, eating pork and living with pigs close by was associated with a higher NCC prevalence. PWE with NCC experienced their first epileptic seizure around 3 years later in life compared to PWE without NCC and their epileptic seizures seemed to be better controlled (p<0.001). There was no difference between focal onset seizures and focal signs on neurological examination in both groups (p = 0.49 and p = 0.92, respectively). The rT24H-EITB had a sensitivity for the detection of NCC of 70% (95% confidence interval [CI] 51 to 84%), the LLGP of 76% (95%CI 58 to 89%) and the antigen ELISA of 36% (95% CI 20 to 55%). Conclusions: NCC is prevalent among PWE in eastern Africa, although it may not be as common as previously stated. Demographic characteristics of PWE with NCC differed from those without NCC, but semiological characteristics and results on neurological examination did not differ compared to PWE without NCC. Interestingly, seizures seemed to be less frequent in PWE with NCC. Being aware of those differences and similarities may help triaging PWE for neuroimaging in order to establish a diagnosis of NCC.
MeSH term(s)	Animals ; Swine ; Neurocysticercosis/complications ; Neurocysticercosis/diagnosis ; Neurocysticercosis/epidemiology ; Cross-Sectional Studies ; Tanzania/epidemiology ; Epilepsy/diagnosis ; Epilepsy/epidemiology ; Epilepsy/etiology ; Taenia solium ; Seizures/epidemiology
Language	English
Publishing date	2022-11-07
Publishing country	United States
Document type	Meta-Analysis ; Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2429704-5
ISSN	1935-2735 ; 1935-2735
ISSN (online)	1935-2735
ISSN	1935-2735
DOI	10.1371/journal.pntd.0010870
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Article ; Online: Community-level prevalence of epilepsy and of neurocysticercosis among people with epilepsy in the Balaka district of Malawi: A cross-sectional study.

Keller, Luise / Stelzle, Dominik / Schmidt, Veronika / Carabin, Hélène / Reinhold, Ann-Kristin / Keller, Claudius / Welte, Tamara M / Richter, Vivien / Amos, Action / Boeckman, Lindsay / Harrison, Wendy / Winkler, Andrea S

PLoS neglected tropical diseases

2022 Volume 16, Issue 9, Page(s) e0010675

Abstract: Background: Epilepsy and neurocysticercosis (NCC) prevalence estimates in sub-Saharan Africa are still scarce but show important variation due to the population studied and different screening and diagnosis strategies used. The aims of this study were ... ...

Abstract	Background: Epilepsy and neurocysticercosis (NCC) prevalence estimates in sub-Saharan Africa are still scarce but show important variation due to the population studied and different screening and diagnosis strategies used. The aims of this study were to estimate the prevalence of epileptic seizures and epilepsy in the sampled population, and the proportion of NCC among people with epilepsy (PWE) in a large cross-sectional study in a rural district of southern Malawi. Methods: We conducted a community-based door-to-door screening study for epileptic seizures in Balaka, Malawi between October and December 2012. Past epileptic seizures were reported through a 15-item questionnaire answered by at least one person per household generating five major criteria. People who screened positive were further examined by a neurologist to establish diagnosis. Patients diagnosed with epilepsy were examined and offered Taenia solium cyst antigen and antibody serological tests, and a CT scan for the diagnosis of NCC. Results: In total, screening information on 69,595 individuals was obtained for lifetime occurrence of epileptic seizures. 3,100 (4.5%) participants screened positive, of whom 1,913 (62%) could be followed-up and underwent further assessment. Lifetime prevalence was 3.0% (95% Bayesian credible interval [CI] 2.8 to 3.1%) and 1.2% (95%BCI 0.9 to 1.6%) for epileptic seizures and epilepsy, respectively. NCC prevalence among PWE was estimated to be 4.4% (95%BCI 0.8 to 8.5%). A diagnosis of epilepsy was ultimately reached for 455 participants. Conclusion: The results of this large community-based study contribute to the evaluation and understanding of the burden of epilepsy in the population and of NCC among PWE in sub-Saharan Africa.
MeSH term(s)	Bayes Theorem ; Cross-Sectional Studies ; Epilepsy/complications ; Epilepsy/epidemiology ; Humans ; Malawi/epidemiology ; Neurocysticercosis/complications ; Neurocysticercosis/diagnosis ; Neurocysticercosis/epidemiology ; Prevalence ; Seizures/epidemiology
Language	English
Publishing date	2022-09-15
Publishing country	United States
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2429704-5
ISSN	1935-2735 ; 1935-2735
ISSN (online)	1935-2735
ISSN	1935-2735
DOI	10.1371/journal.pntd.0010675
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Article ; Online: Characteristics of people with epilepsy in three Eastern African countries - a pooled analysis.

Stelzle, Dominik / Kaducu, Joyce / Schmidt, Veronika / Welte, Tamara M / Ngowi, Bernard J / Matuja, William / Escheu, Gabrielle / Hauke, Peter / Richter, Vivien / Ovuga, Emilio / Pfausler, Bettina / Schmutzhard, Erich / Amos, Action / Harrison, Wendy / Keller, Luise / Winkler, Andrea S

BMC neurology

2022 Volume 22, Issue 1, Page(s) 321

Abstract: Background: Epilepsy is one of the most common neurological disorders worldwide. Yet, its treatment gap is large in some areas and especially in sub-Saharan Africa data on clinical, radiological and semiological characteristics, as well as on treatment ... ...

Abstract	Background: Epilepsy is one of the most common neurological disorders worldwide. Yet, its treatment gap is large in some areas and especially in sub-Saharan Africa data on clinical, radiological and semiological characteristics, as well as on treatment of persons with epilepsy (PWE) are still scarce. Methods: We pooled data from four cross-sectional studies on epilepsy in eastern Africa. Two studies from Malawi and Uganda were community-based; two studies in Tanzania (urban Dar es Salaam and rural Haydom) were hospital-based. Clinical characteristics of PWE were assessed by the same questionnaire. Additionally, data on treatment were collected and computed tomography (CT) scans were performed. Results: Overall, 1179 PWE were included in our analysis (581 (49.3%) female, median age 22 years (IQR 15-32 years)). Up to 25% of the patients had focal onset seizures. Those showed a higher rate of remarkable CT scan findings, with especially post-ischaemic and neurocysticercosis-associated lesions, compared to PWE with generalized onset seizures (35.1% vs. 20%). The majority of the patients experienced tonic-clonic seizures (70-85%). Only 67-78% of PWE received anti-seizure medication (ASM) treatment in the community-based studies, mostly monotherapy with phenobarbital, phenytoin or carbamazepine. Yet, underdosage was frequent and a large proportion of PWE received alternative non-ASM treatment consisting of herbal treatment (up to 83%) and/or scarification (up to 20%). Conclusions: Epilepsy is common in sub-Saharan Africa, often caused by neurocysticercosis or ischaemic strokes. PWE suffer from high seizure rates and subsequent injuries, as well as from socio-economic consequences due to insufficient ASM treatment. This pooled analysis illustrates the need for structural programmes for adequate identification, education, assessment and treatment of PWE in sub-Saharan Africa.
MeSH term(s)	Adult ; Anticonvulsants ; Carbamazepine ; Cross-Sectional Studies ; Epilepsy ; Female ; Humans ; Male ; Neurocysticercosis ; Seizures ; Tanzania ; Young Adult
Chemical Substances	Anticonvulsants ; Carbamazepine (33CM23913M)
Language	English
Publishing date	2022-08-26
Publishing country	England
Document type	Journal Article ; Meta-Analysis
ZDB-ID	2041347-6
ISSN	1471-2377 ; 1471-2377
ISSN (online)	1471-2377
ISSN	1471-2377
DOI	10.1186/s12883-022-02813-z
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Article ; Online: Psychosis Recovery Orientation in Malawi by Improving Services and Engagement (PROMISE) protocol.

Lawrie, Stephen / Hanlon, Charlotte / Manda-Taylor, Lucinda / Knapp, Martin / Pickersgill, Martyn / Stewart, Robert C / Ahrens, Jen / Allardyce, Judith / Amos, Action / Bauer, Annette / Breuer, Erica / Chasweka, Dennis / Chidzalo, Kate / Gondwe, Saulos / Jain, Sumeet / Kokota, Demoubly / Kulisewa, Kazione / Liwimbi, Olive / MacBeth, Angus /

Mkandawire, Thandiwe / Sefasi, Anthony / Sibande, Wakumanya / Udedi, Michael / Umar, Eric

PloS one

2023 Volume 18, Issue 11, Page(s) e0293370

Abstract: Malawi has a population of around 20 million people and is one of the world's most economically deprived nations. Severe mental illness (largely comprising psychoses and severe mood disorders) is managed by a very small number of staff in four tertiary ... ...

Abstract	Malawi has a population of around 20 million people and is one of the world's most economically deprived nations. Severe mental illness (largely comprising psychoses and severe mood disorders) is managed by a very small number of staff in four tertiary facilities, aided by clinical officers and nurses in general hospitals and clinics. Given these constraints, psychosis is largely undetected and untreated, with a median duration of untreated psychosis (DUP) of around six years. Our aim is to work with people with lived experience (PWLE), caregivers, local communities and health leaders to develop acceptable and sustainable psychosis detection and management systems to increase psychosis awareness, reduce DUP, and to improve the health and lives of people with psychosis in Malawi. We will use the UK Medical Research Council guidance for developing and evaluating complex interventions, including qualitative work to explore diverse perspectives around psychosis detection, management, and outcomes, augmented by co-design with PWLE, and underpinned by a Theory of Change. Planned deliverables include a readily usable management blueprint encompassing education and community supports, with an integrated care pathway that includes Primary Health Centre clinics and District Mental Health Teams. PWLE and caregivers will be closely involved throughout to ensure that the interventions are shaped by the communities concerned. The effect of the interventions will be assessed with a quasi-experimental sequential implementation in three regions, in terms of DUP reduction, symptom remission, functional recovery and PWLE / caregiver impact, with quality of life as the primary outcome. As the study team is focused on long-term impact, we recognise the importance of having embedded, robust evaluation of the programme as a whole. We will therefore evaluate implementation processes and outcomes, and cost-effectiveness, to demonstrate the value of this approach to the Ministry of Health, and to encourage longer-term adoption across Malawi.
MeSH term(s)	Humans ; Quality of Life ; Malawi ; Psychotic Disorders/therapy ; Psychotic Disorders/drug therapy ; Mood Disorders ; Critical Pathways
Language	English
Publishing date	2023-11-30
Publishing country	United States
Document type	Journal Article
ZDB-ID	2267670-3
ISSN	1932-6203 ; 1932-6203
ISSN (online)	1932-6203
ISSN	1932-6203
DOI	10.1371/journal.pone.0293370
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Article ; Online: National plans and awareness campaigns as priorities for achieving global brain health.

Winter, Sebastian F / Walsh, Donna / Catsman-Berrevoets, Coriene / Feigin, Valery / Destrebecq, Frédéric / Dickson, Suzanne L / Leonardi, Matilde / Hoemberg, Volker / Tassorelli, Cristina / Ferretti, Maria Teresa / Dé, Anna / Chadha, Antonella Santuccione / Lynch, Chris / Bakhtadze, Sophia / Saylor, Deanna / Hwang, Soonmyung / Rostasy, Kevin / Kluger, Benzi M / Wright, Claire /

Zee, Phyllis C / Dodick, David W / Jaarsma, Joke / Owolabi, Mayowa O / Zaletel, Jelka / Albreht, Tit / Dhamija, Rajinder K / Helme, Anne / Laurson-Doube, Joanna / Amos, Action / Baingana, Florence K / Baker, Gus A / Sofia, Francesca / Galvin, Orla / Hawrot, Tadeusz

The Lancet. Global health

2024 Volume 12, Issue 4, Page(s) e697–e706

Abstract: Neurological conditions are the leading cause of death and disability combined. This public health crisis has become a global priority with the introduction of WHO's Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders 2022-2031 ( ...

Abstract	Neurological conditions are the leading cause of death and disability combined. This public health crisis has become a global priority with the introduction of WHO's Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders 2022-2031 (IGAP). 18 months after this plan was adopted, global neurology stakeholders, including representatives of the OneNeurology Partnership (a consortium uniting global neurology organisations), take stock and advocate for urgent acceleration of IGAP implementation. Drawing on lessons from relevant global health contexts, this Health Policy identifies two priority IGAP targets to expedite national delivery of the entire 10-year plan: namely, to update national policies and plans, and to create awareness campaigns and advocacy programmes for neurological conditions and brain health. To ensure rapid attainment of the identified priority targets, six strategic drivers are proposed: universal community awareness, integrated neurology approaches, intersectoral governance, regionally coordinated IGAP domestication, lived experience-informed policy making, and neurological mainstreaming (advocating to embed brain health into broader policy agendas). Contextualised with globally emerging IGAP-directed efforts and key considerations for intersectoral policy design, this novel framework provides actionable recommendations for policy makers and IGAP implementation partners. Timely, synergistic pursuit of the six drivers might aid WHO member states in cultivating public awareness and policy structures required for successful intersectoral roll-out of IGAP by 2031, paving the way towards brain health for all.
MeSH term(s)	Humans ; Global Health ; Health Policy ; Policy Making ; Public Health ; Brain
Language	English
Publishing date	2024-03-13
Publishing country	England
Document type	Journal Article ; Review
ZDB-ID	2723488-5
ISSN	2214-109X ; 2214-109X
ISSN (online)	2214-109X
ISSN	2214-109X
DOI	10.1016/S2214-109X(23)00598-3
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