Journal of Patient-Reported Outcomes (Nov 2023)

Impact of tardive dyskinesia on patients and caregivers: a survey of caregivers in the United States

  • Rakesh Jain,
  • Rajeev Ayyagari,
  • Debbie Goldschmidt,
  • Mo Zhou,
  • Stacy Finkbeiner,
  • Sam Leo

DOI
https://doi.org/10.1186/s41687-023-00658-9
Journal volume & issue
Vol. 7, no. 1
pp. 1 – 13

Abstract

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Abstract Background Tardive dyskinesia (TD) has a multidimensional impact on patients with TD and, as importantly, their caregivers. An online survey was developed and administered to assess patient and caregiver burden of TD. Survey participants were unpaid caregivers for patients with diagnoses of TD and schizophrenia, bipolar disorder, and/or major depressive disorder. Overall, 162 caregivers rated the 7-day impact of TD on the physical, psychological, and social functioning of patients and the impact of TD on these domains in their own lives and in their professional lives. Results Across physical, psychological, and social domains, most caregivers (82.7%) reported that TD had severe impact on the cared-for patients, and 23.5% reported severe impact of TD in their own lives. Caregivers experienced 46.4% activity impairment, and caregivers who were employed (n = 136) experienced 49.5% overall work impairment because of TD-related caregiving. Conclusions These results suggest that TD imposes substantial burden for both caregivers and patients.

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