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Abstract Details

Capturing Patient and Caregiver Perspectives on Parkinson’s Disease in Zambia: A Methodology
General Neurology
P6 - Poster Session 6 (11:45 AM-12:45 PM)
11-014
Capture and describe the experience of patients with Parkinson's Disease (PD) and caregivers among a clinic in urban Zambia, Africa.

PD is a global neurological disease with expanding incidence and burden is expected to rise by 20-40% in the coming 20 years. Symptoms and burdens of PD have been characterized in many Western-based studies (e.g. Parkinson Progression Markers Initiative and Fox Insight), but little research has focused on quality of life of PD patients in Africa. Current PD literature in Africa is scarce and focuses on critical needs of capacity building and genetics.

We hypothesize focus groups of PD patients in Zambia may report motor symptoms initially but deeper conversations or prompting may yield disclosure of cognitive and mood symptoms. We hypothesize caregiver focus groups may provide support and demonstrate shared PD challenges, including loss of independence, falls, progression, and fears.
Our team will conduct two focus groups in English of 10-12 participants (male group and female group invited from known PD patients of local collaborator, Dr. Chishimba). Additionally, we will conduct one focus group in English of 10-12 participants (mixed gender group, predominantly women, invited from known PD caregivers). A local, trained facilitator with a medical or sociological background will lead all discussions to capture patients’ experience living with PD and caregivers’ experience, bothersome symptoms, and functional impact (if any). Audio recordings will be transcribed for analysis. Dr. Purks and Dr. Chishimba will independently qualitatively analyze themes and then compare to identify trends. 

Focus groups are planned to take place in Zambia in March 2025 with themes analysis forthcoming.
More PD education, support, and resources in Africa is needed. Misconceptions can result in delayed diagnosis, insufficient treatment, isolation, and stigmatization. This work will gather patient and caregiver perspectives to advance our understanding and care of PD in Zambia, Africa.
Authors/Disclosures
Jennifer L. Purks, MD (Norman Fixel Institute of Neurological Diseases at UF Health)
PRESENTER 		Dr. Purks has received research support from The Michael J. Fox Foundation. Dr. Purks has received personal compensation in the range of $0-$499 for serving as a NeuroBytes Author with 好色先生. Dr. Purks has received personal compensation in the range of $50,000-$99,999 for serving as a Movement Disorders fellow as salary support with MJFF Edmond J. Safra .
Lorraine Chishimba, MBChB, MMED (University Teaching Hospital) Dr. Chishimba has nothing to disclose.