“Old people problems”, uncertainty and legitimacy: Challenges with diagnosing Parkinson\u27s disease in Kenya

Very little is known about the experience of people living with Parkinson\u27s disease (PD) in low- and middle-income countries, such as those in sub-Saharan Africa. The number of specialists in the region is low and awareness is limited among the population and healthcare professionals. Drawing on ten months of ethnographic fieldwork in urban and rural Kenya with 55 people living with PD (PwP), 23 family members and 22 healthcare professionals from public and private clinics, we set out to understand the experience of diagnosis among PwP in Kenya. The diagnostic journeys of our study participants were typically long, convoluted and confusing. Lack of relevant information, combined with comorbidities and expectations about ‘normal’ ageing, often conspired to delay interactions with health services for many. There often followed an extended period of diagnostic uncertainty, misdiagnosis and even ‘undiagnosis’, where a diagnostic decision was reversed. Following diagnosis, patients continued to lack information about their condition and prognosis, making it difficult for friends, family members and others to understand what was happening to them. We suggest that awareness of PD and its symptoms needs to improve among the general population and healthcare professionals. However, diagnosis is only the first step, and needs to be accompanied by better access to information, affordable treatment and support

“Old people problems”, uncertainty and legitimacy: Challenges with diagnosing Parkinson's disease in Kenya

Very little is known about the experience of people living with Parkinson's disease (PD) in low- and middle-income countries, such as those in sub-Saharan Africa. The number of specialists in the region is low and awareness is limited among the population and healthcare professionals. Drawing on ten months of ethnographic fieldwork in urban and rural Kenya with 55 people living with PD (PwP), 23 family members and 22 healthcare professionals from public and private clinics, we set out to understand the experience of diagnosis among PwP in Kenya. The diagnostic journeys of our study participants were typically long, convoluted and confusing. Lack of relevant information, combined with comorbidities and expectations about ‘normal’ ageing, often conspired to delay interactions with health services for many. There often followed an extended period of diagnostic uncertainty, misdiagnosis and even ‘undiagnosis’, where a diagnostic decision was reversed. Following diagnosis, patients continued to lack information about their condition and prognosis, making it difficult for friends, family members and others to understand what was happening to them. We suggest that awareness of PD and its symptoms needs to improve among the general population and healthcare professionals. However, diagnosis is only the first step, and needs to be accompanied by better access to information, affordable treatment and support

Multiple sclerosis in Kenya: Demographic and clinical characteristics of a registry cohort

Background: Multiple Sclerosis (MS) is the leading cause of non-traumatic neurological disability in young adults. There is limited literature regarding the burden of MS in sub-Saharan Africa (SSA). Objective: To describe the demographic and clinical characteristics of patients with MS (PwMS) presenting to a tertiary referral hospital in Nairobi. Methods: We conducted a retrospective descriptive study for PwMS presenting to Aga Khan University Hospital, Nairobi from 2008–2018. Results: 99 cases met the diagnostic criteria for MS with a male to female ratio of 1:4. Majority (68.7%) of PwMS were indigenous Africans with a mean age of onset of 30.7 years. Mean duration from symptom onset to first neuro-imaging was 5.04 years. Only 33% of patients had sensory symptoms at onset whereas 54.5% had vitamin D deficiency/insufficiency. Majority (79.5%) had relapsing remitting MS (RRMS) and 56.6% were initiated on disease modifying therapy (DMT). Only 21.2% of patients on DMT were non-compliant. Patients with RRMS were more likely to be initiated on DMT at our hospital (p \u3c 0.001). Conclusion: Clinical characteristics of these patients largely resemble those of other SSA cohorts and African American patients. There was a delay between symptom onset and neuroimaging. There were also issues with DMT compliance

Cases of neuromyelitis optica spectrum disorder from the East Africa region, highlighting challenges in diagnostics and healthcare access

Background: Neuromyelitis optica spectrum disorder (NMOSD) is an auto-immune disease of the central nervous system (CNS) associated with the IgG-antibody against aquaporin-4 (AQP4-IgG). There is little published epidemiology of NMOSD from sub-Saharan Africa (SSA). Methods: We retrospectively collated NMOSD cases admitted to our tertiary regional neurology centre. Results: We identified 11 cases (10 female, average age 30 years). 64% (7/11) were seropositive for AQP4-IgG, measured using indirect immunofluorescence. The remaining cases could either not afford tests, or had patho-gnomonic radiological features. 57% (4/7) of seropositive cases had concurrent/recent CNS infection. All pa-tients were treated with high-dose intravenous methylprednisolone (IVMP), and 36% (4/11) also had plasma exchange. Only 55% (6/11) of the patients were seen by a neurologist at presentation: they had less relapses (1.3 vs 2.4), less diagnostic delay (2.3 vs 7.4 months), and were less disabled at the end of our review period. 10 cases were immunosuppressed long-term: 60% on mycophenolate, 30% azathioprine, and one on rituximab. Conclusion: Our study is the largest case series of NMOSD from the East Africa region. Patients faced challenges of access to appropriate and affordable testing, and timely availability of a neurologist at onset, which had impacts on their functional outcomes. The majority of the seropositive cases had recent/concurrent CNS infections, suggesting triggered auto-immunity

Availability of Therapies and Services for Parkinson\u27s Disease in Africa: A Continent-Wide Survey

Background: The growing burden of Parkinson\u27s disease (PD) in Africa necessitates the identification of available therapies and services to improve patient care. Objective: To investigate the availability, affordability, frequency of usage, and insurance coverage of PD therapies (pharmacological, surgical, physical, and speech therapies) and services including specialized clinics, specialists, and nurses across Africa. Methods: A comprehensive web-based survey was constructed and distributed to neurologists/physicians with a special interest in PD across Africa. The survey instrument includes components that address availability, affordability, frequency of use, and insurance coverage of different therapies and services. Results: Responses were received from 28 (of 43 contacted) countries. Levodopa-based oral preparations were always available in 13 countries (46.4%) with variable affordability and “partial or no” insurance coverage in 60% of countries. Bromocriptine was the most available (50%) and affordable ergot dopamine agonists (DA), whereas non-ergot DA was always available in only six countries (21.4%). Trihexyphenidyl was the most available and affordable anticholinergic drug (46.4%). Tricyclic antidepressants and selective serotonin reuptake inhibitors were available in most countries (89.3% and 85.7% respectively), with variable affordability. Quetiapine and clozapine were less available. Specialized clinics and nurses were available in 25% and 7.1% of countries surveyed, respectively. Other services were largely unavailable in the countries surveyed. Conclusion: PD-specific therapies and services are largely unavailable and unaffordable in most African countries. The data provide a platform for organizing strategies to initiate or scale up existing services and drive policies aimed at improving access to care and tailoring education programs in Africa

Diagnosis and classification of optic neuritis

There is no consensus regarding the classification of optic neuritis, and precise diagnostic criteria are not available. This reality means that the diagnosis of disorders that have optic neuritis as the first manifestation can be challenging. Accurate diagnosis of optic neuritis at presentation can facilitate the timely treatment of individuals with multiple sclerosis, neuromyelitis optica spectrum disorder, or myelin oligodendrocyte glycoprotein antibody-associated disease. Epidemiological data show that, cumulatively, optic neuritis is most frequently caused by many conditions other than multiple sclerosis. Worldwide, the cause and management of optic neuritis varies with geographical location, treatment availability, and ethnic background. We have developed diagnostic criteria for optic neuritis and a classification of optic neuritis subgroups. Our diagnostic criteria are based on clinical features that permit a diagnosis of possible optic neuritis; further paraclinical tests, utilising brain, orbital, and retinal imaging, together with antibody and other protein biomarker data, can lead to a diagnosis of definite optic neuritis. Paraclinical tests can also be applied retrospectively on stored samples and historical brain or retinal scans, which will be useful for future validation studies. Our criteria have the potential to reduce the risk of misdiagnosis, provide information on optic neuritis disease course that can guide future treatment trial design, and enable physicians to judge the likelihood of a need for long-term pharmacological management, which might differ according to optic neuritis subgroups