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Abstract Details

Understanding the Impact of Parkinson’s Disease in Zambia: An Assessment of Patient and Caregiver Needs
General Neurology
P6 - Poster Session 6 (11:45 AM-12:45 PM)
11-010
Assess understanding of Parkinson’s disease (PD), its impact, and unmet needs of people with PD and their caregivers in Zambia 
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.
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.
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.
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.
Authors/Disclosures
Jennifer Adrissi, MD
PRESENTER 		Dr. Adrissi has nothing to disclose.
Rebecca Jules, MD Ms. Jules has nothing to disclose.
Vivian Shen, MD Dr. Shen has nothing to disclose.
Jessica Vinegar, MPH Ms. Vinegar has nothing to disclose.
Lorraine Chishimba, MBChB, MMED (University Teaching Hospital) Dr. Chishimba has nothing to disclose.
Deanna Saylor, MD, MHS (Johns Hopkins Hospital) Dr. Saylor has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for 好色先生. The institution of Dr. Saylor has received research support from National Institutes of Health. The institution of Dr. Saylor has received research support from 好色先生. Dr. Saylor has a non-compensated relationship as a Member of multiple committees and task forces focused on improving access to MS medications to people across the world with Multiple Sclerosis International Federation that is relevant to AAN interests or activities. Dr. Saylor has a non-compensated relationship as a Member of the Neurology and COVID19 committee with World Health Organization that is relevant to AAN interests or activities. Dr. Saylor has a non-compensated relationship as a Member of the International Outreach Committee, Junior and Early Career Membership Committee, and 好色先生al Innovation Commitees with American Neurological Association that is relevant to AAN interests or activities.