Objective: To identify (1) the barriers to healthcare for a rural, indigent population of XDP patients whose care is centered at a health center by conducting interviews, focus group discussions (FGD), and surveys on all identified patients; and (2) to implement a community-based organizing system where barriers to care can be reduced so that clinic attendance can increase and a cost-effective analysis can be conducted.

Background: Sex-linked dystonia parkinsonism (XDP) is a rare movement disorder that occurs predominantly in men with ancestry to Panay Island, Philippines. We provide free health services to indigent XDP patients in Capiz, a province of Panay Island. Multiple barriers to care were informally recognized by health providers, including financial insecurity, lack of understanding of the disease, and lack of clinical care. Socioeconomic information of the patients was unknown.

Methods: We conducted home interviews (n=39) and two FGDs with patients and family members (n=26). We implemented a community organizing program where hired “community advocates” oversaw a group of XDP patients in the region where they live. They frequently visited patients in their homes, facilitated patient attendance at clinics, and identified new patients. Three surveys were conducted (n=113) to collect demographic data.

Results: When the program was implemented, the number of patients rose by 62% in the first month compared to the previous month and 11% during the second month. The number of new patients rose from one to 24 for the first month and 8 for the next month. The cost of transportation per patient was $3.78 per clinical visit. The average cost of the program was $628.19 per month. Demographic information was obtained from 113 patients, including education level, current medical care, and caregiver perspectives. The major barriers to care were no money for transportation (79%), patient embarrassment (10%), rain and weather issues (41%), no companion to accompany patient (15%), patient not feeling well (28%), and other reasons (9%).

Conclusions: Our data suggest that clinic attendance can be improved by taking a community-based approach to addressing the major barriers to health. This is the first study to assess socioeconomic and demographic data of XDP patients in Panay Island, as well as attempt to address their barriers to care with a community organizing system.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/a-community-organizing-approach-to-identify-and-address-the-barriers-to-healthcare-for-xdp-patients-in-panay-island-philippines/