Impact of Tardive Dyskinesia on Psychological and Social Aspects of Patient Lives: A Survey of Patients and Caregivers in the United States

Abstract: Background: Tardive dyskinesia (TD) is a hyperkinetic movement disorder that substantially impacts patients’ lives. This study assessed psychological and social aspects of TD from patient and caregiver perspectives to better understand the stigma surrounding TD. Methods: Patients and caregivers completed online surveys. Participants rated the impact of TD on psychological and social domains from 1 (least) to 5 (most). Results: 269 patients and 162 caregivers responded to the surveys. Mean (SD) psychological impact scores reported by patients and caregivers were 3.5 (1.0) and 3.5 (0.8), respectively, and 3.2 (1.1) and 2.9 (0.7) for social impact. Across 9 of 11 psychological items, 51.3%–58.7% of patients reported often/always experiencing impact; proportions were greater for caregivers for 3 items. Across 9 social items, 48.7%–55.8% of patients reported that TD often/always had an impact. 40.9%–49.4% of patients reported that strangers and acquaintances often/always reacted to their symptoms; proportions were lower for caregivers. 51.6%–68.0% of patients reported being bothered quite a bit/very much by others' reactions. Impact scores and proportions were greater for patients with underlying schizophrenia than for major depressive disorder and increased with TD symptom severity. Conclusions: Patients and caregivers alike reported that TD had a substantial impact on patients’ psychological and social functioning, regardless of underlying condition. Understanding the TD patient experience can help better understand the stigma associated with TD.Short Description: Online surveys were distributed to patients with tardive dyskinesia (TD) and caregivers of patients with TD to assess the experiences and concerns of patients with TD. Patients and caregivers alike reported that TD had a substantial impact on patients’ psychological and social functioning, regardless of underlying condition.Name of Sponsoring Organization(s): Teva Branded Pharmaceutical Products R&D, Inc.