Researchers of the RE-KINECT study (NCT03062033), aimed to understand the impact of tardive dyskinesia (TD) in patients treated with antipsychotics, and incorporated a unique element by focusing on the experiences of caregivers. These caregivers, who were mostly unpaid and included family members or friends, assisted individuals with abnormal involuntary movements consistent with TD. The study invited these caregivers to complete a questionnaire that sought information about their sociodemographic characteristics, their perceptions of the impact of the abnormal movements on the patients, and the effects of these movements on their own lives.
The results, derived from 41 participating caregivers, highlighted the significant burden of TD on both patients and caregivers. Their observations closely aligned with the patients’ experiences, with almost half reporting that the patients had severe abnormal involuntary movements in at least one body region, and a majority observed these movements in two or more regions. Caregivers reported a substantial impact on their own lives, impacting their ability to continue usual activities, be productive, socialize, and take care of themselves. These findings underscore the importance of considering the impact of TD not only on patients but also on their caregivers when deciding on treatment strategies, highlighting the far-reaching effects of this condition beyond the patients themselves.
Reference: Cutler AJ, Caroff SN, Tanner CM, et al. Caregiver-Reported Burden in RE-KINECT: Data From a Prospective Real-World Tardive Dyskinesia Screening Study. J Am Psychiatr Nurses Assoc. 2023;29(5):389-399. doi: 10.1177/10783903211023565.