Objective:

Assess understanding of Parkinson’s disease (PD), its impact, and unmet needs of people with PD and their caregivers in Zambia 

Background:

PD is the second most common neurodegenerative disease worldwide. Gaps in the understanding of PD exist in sub-Saharan African (SSA) countries such as Zambia. The extrapolation of recommendations from research in middle- and high-income countries may not be applicable to SSA countries with different cultures, healthcare infrastructures, and socioeconomic systems.

Design/Methods:

Participants with PD (PwPs) and caregivers were recruited through Zambia’s only neurology clinic. Participants completed surveys including demographic and employment information. PwPs were also asked questions about disease course and had a focused neurological exam to complete the Unified Parkinson's Disease Rating Scale (UPDRS) Part 3 score. To assess disease burden, PwPs completed the Parkinson’s Disease Questionnaire-8 (PDQ-8), and caregivers completed the Zarit Burden Interview (ZBI-12) assessment. Participants also completed a semi-structured interview examining local PD perceptions, PD impact on self and family, and barriers to PD care.

Results:

Twenty-one PwPs and 20 caregivers were surveyed and interviewed from September to October 2023. Tremor was the most common presenting symptom (62% of PwPs), with UPDRS Part 3 scores ranging from 17 to 92 (median = 51). For PwPs, median PDQ-8 score was 50.0, and median ZBI-12 score was 17.5 for caregivers – both scores representing moderate burden. Interview themes were similar between PwPs and caregivers including the paucity of local PD education, impact of PD on familial roles, and decreased access to medications due to high cost and low availability.

Conclusions:

PD is associated with a significant clinical and financial burden in Zambia. Unmet needs include local PD educational resources, affordable and accessible PD medications, and support resources for family. Identified needs will be used to develop a locally relevant PD toolkit for PwPs, caregivers, and healthcare providers.