NIHR Global Health Research Group on Transforming Parkinson's Care in Africa (TraPCAf)

The largest proportionate growth of people aged over 60 is occurring in low & middle income countries (LMICs), such as those in sub-Saharan Africa (SSA). Already coping with a large burden of infectious diseases they now face a large increase in age-related diseases such as dementia and Parkinson’s disease (PD). There are very few medical specialists. Effective symptomatic drug treatment is available, though not a cure, but access is very limited in SSA. People undiagnosed, and others not treated, will have a much poorer quality of life and a markedly reduced life expectancy. We have treated people in SSA who were virtually bed bound and within days were back working on their farm. We showed similarly dramatic short term impacts for a physiotherapy cueing intervention before drug treatment was available locally. There is a lack of awareness about PD among the general public and health professionals, so people often don’t recognise symptoms or access medical help and, even when they do, may not be correctly diagnosed. Some PwP see traditional, or faith, healers and many seek no help at all, mistaking the symptoms for old age and feeling nothing can help. Even those diagnosed face the challenge of obtaining affordable and sustainable drug treatment. This research will enable us to gain invaluable information on the phenotype of PD and response to treatment in Africa. We will test ideas for aiding diagnosis and management, and develop support including patient and carer information. We will strengthen research capability in PD in Africa. We are linking with the Global Parkinson’s Genetics Programme (GP2) investigating the genetics of PD worldwide, including Africa. We plan to work with colleagues in Tanzania, Kenya, Ghana, Nigeria, South Africa, Ethiopia and Egypt to: Improve Diagnosis – 1. Develop aids to diagnosis for non-specialist doctors, such as questionnaires appropriate for LMIC settings, and equipment that measures bradykinesia and tremor. We will utilise innovative techniques such as scripted videos recorded on smartphones and asynchronously analysed by movement disorder specialists in Africa, UK or Europe, and also investigate chemicals in blood, sweat and urine as early signs of PD. We will also collect stool samples for microbiome analyses. 2. Provide training for doctors, nurses and therapists to improve diagnosis and management. 3. Develop and trial services for diagnosis and management of PD by non-specialists. 4. Undertake community based door to door prevalence studies in Tanzania, Ghana, Nigeria and Kenya, testing different screening measures. Improve care - 5. Develop a database of PD outpatients in sites in the different countries with detailed phenotype, treatment response and outcome. 6. Look at the effectiveness and side-effects of preparations of Mucuna pruriens (MP), a tropical plant, compared to Levodopa (standard drug treatment) in Tanzania. Evidence from an on-going Ghana study suggests MP is affordable and effective with limited side-effects. 7. Assess the response to drug treatment, with non-invasive and low-cost home monitoring with wearable movement sensors in PwP who consent. 8. Work with patient and carer support groups to investigate the lived experiences, clarify priorities and raise public awareness via standard media techniques and social media. 9. Collaborate with the Investigators on GP2 to collect blood, saliva and stool samples for genetic analyses.