Parkinson’s disease (PD) is one of the major neurodegenerative conditions in sub-Saharan Africa. Little is known about the epidemiology, service availability, and population-level awareness. There is a clear lack of data on PD in SSA, including Kenya. Up to 50% of people with PD are not diagnosed and untreated resulting in increased morbidity. The majority of PD patients and their families associate PD with the normal aging process or ascribe spiritual connotations such as curses or witchcraft. The study aims to: 1) validate tools for screening, estimate the prevalence of PD at the population level, and assess the knowledge and attitudes of influential community advisors; 2) assess the healthcare service availability and readiness to manage PD, and; 3) estimate patient caseloads in neurology clinics and identify barriers and facilitators to diagnosis and referral along the care cascade. The PACKS study is being implemented in Kenya and Senegal through three work packages (WP) as follows: WP 1, being led by APHR, is using a mixed-methods approach, including household surveys nested within health demographic surveillance regions in Siaya and Nairobi as well as in Senegal (n = 1500) C. Also, In-depth interviews (n = 40) with community health advisors, including traditional healers, community health volunteers, and medicine sellers are to be conducted. WP 2, under JOOUST, is assessing service availability and readiness in all tertiary hospitals and a sample of primary care facilities in Kenya (n = 50) using a systems assessment tool customized for PD. WP 3, under KEMRI, is conducting a survey of patient caseloads in neurology clinics; in-depth interviews with PD patient-caregiver dyads (n = 45) and; Focus group discussions (n = 3) with patient support groups and caregivers. The findings are expected to inform and support community education programs, development of care models, capacity-building programs for healthcare workers, and policy decisions for improving PD care in SSA.
