"No One Truly Understands What We Go through and How to Treat It": Lived Experiences with Medical Providers among Patients with Orofacial Pain.

Abstract

Orofacial pain affects 10–15% of adults, yet treatments are limited. The gaps in care are frustrating for both patients and providers and can negatively impact patient–provider interactions. These interactions are key because they impact patient-reported outcomes and satisfaction with care. Purpose: Our study aims to understand the nuanced experiences with medical providers among patients with orofacial pain. Methods: In a cross-sectional survey, 260 patients provided written responses describing their experiences with medical providers. Using an inductive–deductive approach to thematic analysis, we identified themes and subthemes and organized them into four domains based on the Patient-Centered Model of Communication. Results: Patients reported feeling hopeless about treatment options, frustrated with lack of provider knowledge, disappointed in ineffective care, and stigmatized and dismissed by providers. Patients also said they learned to advocate for their health, were grateful for effective care, and felt lucky when providers listened and showed compassion. Patients identified key barriers that interfere with care (e.g., insurance, transportation, limited providers, lack of team coordination). Conclusions: Findings can help inform training programs and psychoeducation that target patient–provider communication to improve patient-reported outcomes, the quality of care delivered, and health care utilization and costs.