Perceptions of Healthcare Quality in Duchenne Muscular Dystrophy: A Patient Experience Exploratory Study.

Abstract

Background: Duchenne muscular dystrophy (DMD) is a genetic disorder characterized by progressive muscle weakness, a decline in quality of life, and premature mortality. This study aims to evaluate the perceived quality of healthcare and the experience of DMD patients and their caregivers in Mexico, comparing governmental and non-profit healthcare institutions using a newly designed assessment instrument.

Methods: In a cross-sectional study, data were gathered from 91 participants through an online self-administered questionnaire informed by the Donabedian model and six dimensions of healthcare quality.

Results: Analysis revealed two key mediating factors: perceived quality of healthcare and patient experience. The Mann-Whitney U test showed that non-profit organizations were perceived to provide superior quality care in both aspects (p < 0.05), notably regarding healthcare professionals' preparedness and other domains of quality. However, the patient-centered care domain indicated that the importance of quality domains may vary according to cultural and social contexts. In Mexico, the humanistic approach of healthcare professionals appeared to compensate for shortcomings in timely diagnosis and other quality domains. This emphasizes the necessity for enhanced patient education and healthcare evaluation, and it highlights that patient satisfaction does not always correlate with high-quality healthcare. The developed instrument can further aid in understanding the experiences of DMD patients across different countries and cultures.