Title Information
Title
A community organizing approach to identify and address the barriers to healthcare for patients with X-linked systonia Parkinsonism (XDP) in Panay Island, Philippines
Name: Personal
Name Part
Solinap, Greta M.
Role
Role Term: Text
creator
affiliation
Massachusetts General Hospital
Name: Personal
Name Part
Aguil, Abegail
Role
Role Term: Text
creator
affiliation
Sunshine Care Foundation
Name: Personal
Name Part
Acuna, Patrick John B.
Role
Role Term: Text
creator
affiliation
Massachusetts General Hospital
Name: Personal
Name Part
Sharma, Nutan
Role
Role Term: Text
creator
affiliation
Massachusetts General Hospital
Type of Resource
text
Genre (aat)
posters
Origin Information
Date Created (keyDate="yes", encoding="w3cdtf")
2016
Language
Language Term: Code (ISO639-2B)
eng
Note (displayLabel="Scholarly concentration")
Non-Scholarly Concentrator
Abstract
X-linked dystonia Parkinsonism (XDP) is a rare movement disorder that occurs predominantly in men with ancestry to Panay Island, Philippines. In a local clinic in Capiz, a province in Panay, low attendance rates and few new patients posed a constant problem to health providers. To assess these barriers and improve care, researchers implemented a community organizing program where hired "community advocates" oversaw a group of XDP patients in the region where they live and conducted three community surveys (n=167). The major barriers to care for the patients were identified: lacking money for transportation (44%), rain and weather issues (24%), patient not feeling well enough to go (16%), no companion to accompany patient (8%), patient embarrassment (5%) and other reasons (3%). Clinic attendance increased by 36% in the first month and 18% in the next month after implementation of the program. The data suggest that clinic attendance can be improved by taking a community-based approach to addressing the major barriers to health.
Subject (MESH)
Topic
Dystonic Disorders
Subject (LCSH)
Topic
Parkinson's disease
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