Objective: To describe the launch and preliminary findings of ZEPHyR, the first Parkinson’s Disease (PD) registry in Zambia.
Background: PD is the second most common neurodegenerative disease worldwide and has increased in prevalence 145% over the past two decades. Few studies have been conducted in sub-Saharan Africa regarding the epidemiology or healthcare utilization of people with PD.
Method: This was a cross-sectional study of consecutive PD patients recruited from the neurology clinic at the University Teaching Hospital (UTH) in Lusaka, Zambia. Data collection included: demographics, PD risk factors, healthcare utilization, and examination including Hoehn and Yahr stage.
Results: Thirty-seven patients were recruited during the launch of ZEPHyR in March 2019. Patients’ mean age was 67.0 (SD 12.7). The mean age of onset of symptoms was 60.0 (SD 14.4). Women comprised 51.4% of the sample. All patients were living at home; most had a regular care partner. Nineteen percent endorsed a family history of parkinsonian symptoms. Among participants, 65% were staged Hoehn and Yahr >3, yet only 60% of patients were on carbidopa/levodopa. The median cost of medications for the previous year was ZMW 1500 (USD 117; average yearly earnings ZMW 39,960 or USD 3,023). No patients had received mental health treatment, though 13% reported feeling depressed “often” or “always”.
Conclusion: ZEPHyR is the first PD registry in Zambia. Though levodopa remains the most effective antiparkinsonian medication, it is not included in the hospital formulary at UTH and is often too expensive for patients to obtain. Mental health services were lacking. As UTH now has a neurology residency and growing research infrastructure, we aim to train local neurologists to maintain and grow ZEPHyR. Ultimately, this will support legislative advocacy to improve the care of people with PD in sub-Saharan Africa.
This abstract was presented at the American Academy of Neurology on April 28th, 2020.
To cite this abstract in AMA style:T. Lee, O. Siddiqi, M. Atadzhanov, D. Saylor, J. Fleisher. Initial Results from the Zambian Epidemiology of Parkinson’s disease and Healthcare Registry (ZEPHyR) [abstract]. Mov Disord. 2020; 35 (suppl 1). https://www.mdsabstracts.org/abstract/initial-results-from-the-zambian-epidemiology-of-parkinsons-disease-and-healthcare-registry-zephyr/. Accessed December 11, 2023.
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