Transforming Parkinson's Care in Africa (TraPCAf): protocol for a multimethodology National Institute for Health and Care Research Global Health Research Group project.

BACKGROUND: Parkinson's disease (PD) is the second most common neurodegenerative disorder and, according to the Global Burden of Disease estimates in 2015, was the fastest growing neurological disorder globally with respect to associated prevalence, disability, and deaths. Information regarding the awareness, diagnosis, phenotypic characteristics, epidemiology, prevalence, risk factors, treatment, economic impact and lived experiences of people with PD from the African perspective is relatively sparse in contrast to the developed world, and much remains to be learned from, and about, the continent. METHODS: Transforming Parkinson's Care in Africa (TraPCAf) is a multi-faceted, mixed-methods, multi-national research grant. The study design includes multiple sub-studies, combining observational (qualitative and quantitative) approaches for the epidemiological, clinical, risk factor and lived experience components, as appropriate, and interventional methods (clinical trial component). The aim of TraPCAf is to describe and gain a better understanding of the current situation of PD in Africa. The countries included in this National Institute for Health and Care Research (NIHR) Global Health Research Group (Egypt, Ethiopia, Ghana, Kenya, Nigeria, South Africa and Tanzania) represent diverse African geographies and genetic profiles, with differing resources, healthcare systems, health and social protection schemes, and policies. The research team is composed of experts in the field with vast experience in PD, jointly led by a UK-based and Africa-based investigator. DISCUSSION: Despite the increasing prevalence of PD globally, robust data on the disease from Africa are lacking. Existing data point towards the poor awareness of PD and other neurological disorders on the continent and subsequent challenges with stigma, and limited access to affordable services and medication. This multi-site study will be the first of its kind in Africa. The data collected across the proposed sub-studies will provide novel and conclusive insights into the situation of PD. The selected country sites will allow for useful comparisons and make results relevant to other low- and middle-income countries. This grant is timely, as global recognition of PD and the public health challenge it poses builds. The work will contribute to broader initiatives, including the World Health Organization's Intersectoral global action plan on epilepsy and other neurological disorders. TRIAL REGISTRATION: https://doi.org/10.1186/ISRCTN77014546 .

Prevalence of depression and anxiety in older people in low- and middle- income countries in Africa, Asia and South America: A systematic review and meta-analysis.

BACKGROUND: There is rapid growth of older people in Low- and Middle- Income Countries (LMICs). The aim of this review was to assess the literature on prevalence of anxiety and depression in this demographic, which to our knowledge, has not yet been conducted. METHODS: Databases including Medline, PsychInfo, Embase, Scielo and African Journals Online were searched for terms including "mental disorders", "neurotic disorders", "mood disorders" and "anxiety disorders". Studies published between 1990 and 2020 providing data on older people (≥50 years) in LMICs (defined by World Bank Criteria) were included and quality-assessed. Meta-analysis was conducted on a subset of higher-quality studies to derive pooled prevalence estimates of depression. RESULTS: One hundred and forty relevant studies were identified, of which thirty-two were included in meta-analysis. One hundred and fifteen studies reported depression prevalence only, 19 reported both depression and anxiety, and six reported anxiety only. In all studies identified, depression prevalence ranged from 0.5 % to 62.7 %, and Generalised Anxiety Disorder prevalence ranged from 0.2 % to 32.2 %. The pooled prevalence of depression on meta-analysis was 10.5 % (95 % CI, 8.9 % - 11.2 %). Reported prevalence rates of depression were significantly different in studies using ICD-10 compared with DSM criteria, and between community and clinical settings. LIMITATIONS: The search strategy contained bias towards English language papers and high income country (HIC) publications. There is significant heterogeneity within the meta-analysis. DISCUSSION: A wide range of methodologies and clinical criteria are used in prevalence studies of depression and anxiety in older people. Studies using screening tools found higher prevalence rates; clinicians and researchers should ensure diagnosis is made with gold-standard clinical criteria. Meta-analysis data suggest that rates of depression are similar in older people in LMICs compared to HICs but mental healthcare resources are limited, suggesting a large potential treatment gap.

Identification of delirium and dementia in older medical inpatients in Tanzania: A comparison of screening and diagnostic methods.

BACKGROUND: In sub-Saharan Africa, there are no validated screening tools for delirium in older adults. This study assesses clinical utility of two instruments, the IDEA cognitive screen and the Confusion Assessment Method (CAM) for identification of delirium in older adults admitted to medical wards of a tertiary referral hospital in Tanzania. METHOD: The IDEA cognitive screen and CAM were administered to a consecutive cohort of older individuals on admission to Kilimanjaro Christian Medical Centre using a blinded protocol. Consensus diagnosis for delirium was established against DSM-5 criteria and dementia by DSM-IV criteria. RESULTS: Of 507 admission assessments, 95 (18.7%) had DSM-5 delirium and 95 (18.7%) had DSM-IV dementia (33 (6.5%) delirium superimposed on dementia). The CAM and IDEA cognitive screen had very good diagnostic accuracy for delirium (AUROC curve 0.94 and 0.87 respectively). However, a number of participants (10.5% and 16.4% respectively) were unable to complete these screening assessments due to reduced consciousness, or other causes of reduced verbal response and were excluded from this analysis; many of whom met DSM-5 criteria for delirium. Secondary analysis suggests that selected cognitive and observational items from the CAM and IDEA cognitive screen may be as effective as the full screening tools in identifying delirium even in unresponsive patients. CONCLUSION: Both instruments appeared useful for delirium screening in this inpatient setting, but had significant limitations. The combination of assessment items identified may form the basis of a brief, simple delirium screening tool suitable for use by non-specialist clinicians. Further development work is needed.

The prevalence and burden of behavioural and psychological symptoms of dementia in rural Tanzania.

OBJECTIVES: Behavioural and psychological symptoms (BPS) in dementia are common in high-income countries, but there are few data from sub-Saharan Africa. Our aim was to estimate the prevalence and pattern of BPS and associated caregiver distress in rural Tanzania. METHODS: Prevalent cases of dementia (aged 70 and over) were identified during a community-based door-to-door study in six rural villages in Tanzania. Following cognitive screening, a stratified sample (over-sampled for people with dementia) of cases underwent a detailed clinical assessment including the brief 12 item neuropsychiatric inventory (NPI-Q), which assesses BPS and associated caregiver distress over the preceding 30 days. RESULTS: Of 78 people with dementia, at least one current BPS was reported by 69 (88.4%), with 40 (51.3%) reporting 3 or more symptoms. In 172 people with no cognitive impairment, 110 (64.0%) reported at least one symptom and 48 (27.9%) reported 3 or more. In dementia cases, the most frequent symptoms reported were anxiety (47.4%), agitation/aggression (38.5%), night-time behavioural disturbance (34.6%), irritability (33.3%) and depression (33.3%). CONCLUSION: The frequency of BPS in dementia in this rural Tanzanian population is high and comparable to that reported in prevalence studies from high income countries. Symptoms were also common, although to a lesser degree, amongst cognitively intact subjects. BPS are likely to have a significant impact on quality of life for elderly persons and their carers in low-income settings. Low-cost interventions, such as community-based therapy and education, are needed.

A comparison of caregiver burden in older persons and persons with Parkinson's disease or dementia in sub-Saharan Africa.

BACKGROUND: Caregiver burden includes the many physical, mental and socio-economic problems arising from caring for individuals with chronic and disabling diseases. Being a carer in sub-Saharan Africa (SSA), where little is known about chronic neurological conditions, may be extremely demanding. Conversely, multigenerational living may allow sharing of care among many caregivers. We wished to determine the relative burden of caring for two chronic neurodegenerative conditions (Parkinson's disease (PD) and dementia) in rural Tanzania. METHODS: All surviving patients from a PD prevalence study, newly identified people with PD from a neurological disorders study and all people with dementia from a dementia prevalence study in Hai, rural Tanzania, were invited to participate. The Zarit Burden Interview (ZBI) was used to determine level of caregiver strain (higher score reflects more strain). RESULTS: Of 25 PD patients ZBI was recorded in 20 (14 male). Five had no identifiable carer as they were largely independent. Three had PD dementia (PDD). Of 75 people with dementia (excluding 3 PDD), 43 (32 female) completed the ZBI. For the other 32, the caregivers felt the care they provided was a normal intergenerational expectation. Median ages were 78.5 and 85 years for PD and dementia, respectively. Median ZBI was 30.5 for PD and 14 for dementia (U = 166.0, z = -3.913, p < 0.001). Disease duration and disease type (PD or dementia) were univariate predictor of ZBI score, although only disease type was predictive by multivariable linear regression. CONCLUSIONS: Caring for an individual with PD may be more burdensome than caring for an individual with dementia in SSA. People with more advanced PD had higher caregiver burden.

Non-motor symptoms in a prevalent population with Parkinson's disease in Tanzania.

INTRODUCTION: Most of the patients identified in a community-based prevalence study of Parkinson's disease (PD) in the Hai district, rural northern Tanzania, in 2005-2006, had not been previously diagnosed or treated. METHODS: Screening methods to identify patients have been previously described. Diagnosis was confirmed by the UK, PD Society Brain Bank Criteria. Patients were assessed in their own home with the assistance of a local translator and completed: Unified PD Rating Scale (UPDRS), Non-motor Symptoms Assessment Scale, PDQ-39, Hoehn and Yahr scale, and Hospital Anxiety and Depression Scale (HAD). RESULTS: Thirty-three (23 male, mean age 74, range 38-94 years) patients were identified. Only 5 had ever taken PD medication, and only 3 were currently treated. Hoehn and Yahr stage ranged from 2 to 5, disease duration from 3 months to 19 years, mean UPDRS was 50 (range 24-97), mean PDQ-39 386 (range 219-580) and mean non-motor symptom scale score 62 (range 11-209). Some patients who had never taken medication for PD, and who did not fulfil the Lewy Body Dementia diagnostic criteria, had experienced visual hallucinations. CONCLUSIONS: By studying patients at varying stages of PD who have not received treatment we can learn more about the symptoms of late stage PD and ascertain whether they are drug- or disease-related, or a combination of both. Hallucinations are likely to be a manifestation of the disease, but are often precipitated or exacerbated by medication. These patients have now commenced treatment, with close monitoring for complications, including motor or neuro-psychiatric symptoms.

The prevalence of essential tremor in rural northern Tanzania.

INTRODUCTION: Estimates of the prevalence of essential tremor (ET) vary widely but there are few existing data on the prevalence of ET in sub-Saharan Africa. PATIENTS AND METHODS: A door-to-door community based prevalence study of ET was carried out in the Hai district of northern Tanzania (n = 161,071). The screening questionnaire was followed by examination of positive responders and backed up with other case finding methods. RESULTS: 222 patients responded positively to the screening questions and 43 were referred by village elders. 65 (38 men, 27 women) were diagnosed with ET. Mean age was 72 years and mean duration of symptoms was 11.3 years. The crude prevalence rate was 41/100,000 and age standardised prevalence compared with the UK population (2001) was 82/100,000. DISCUSSION: This is the first community based prevalence study of ET in sub-Saharan Africa. Previous data from community based neurological surveys showed lower prevalence rates of 5/100,000 in Ethiopia and 10/100,000 in Nigeria. Non-selective beta blockers are available locally and are affordable, yet none of these patients had previously been on any treatment.

The challenge of Parkinson's disease management in Africa.

Parkinson's disease (PD) is said to be less common in Africa than elsewhere in the world, but previous studies have been based on small numbers. Also, the differences may be due to the diagnostic criteria used, case finding methods and different population age structures. Developing countries have few facilities for chronic disease management and non-communicable diseases, although on the increase, tend to play second fiddle to malaria and HIV/AIDS. Previous reports suggest that, at least from anecdotal information, under-diagnosis of PD is common and long-term availability of medication, follow-up, patient education and multidisciplinary input is lacking. Published literature is scarce and there is a lack of recent information. We are currently conducting a door-to-door prevalence study in northern Tanzania in a population of 161,162. We have reviewed previous literature on PD in Africa and illustrate our personal experience of PD and its management in Africa with three cases.