Caregiver-Reported Burden in RE-KINECT: Data From a Prospective Real-World Tardive Dyskinesia Screening Study

Abstract

Background: RE-KINECT (NCT03062033), a real-world study of possible tardive dyskinesia (TD) in antipsychotic-treated patients, included a questionnaire to assess the effects of patients’ abnormal involuntary movements on caregivers. Objective: To capture the experiences of caregivers who assisted individuals with abnormal involuntary movements that were confirmed by clinicians as being consistent with TD. Methods: Qualified (nonpaid) caregivers were invited to complete a questionnaire that included the following: caregivers’ sociodemographic characteristics, their perceptions about the impact of abnormal involuntary movements on patients, and the impact of these movements on themselves (caregivers). Results: Of the 41 participating caregivers, 25 (61.0%) were women, 20 (48.8%) were employed full time or part time, and 35 (85.4%) were family members or friends. Based on responses from caregivers who noticed patients’ abnormal involuntary movements and were caring for individuals who also noticed those movements, 48.0% of patients had “a lot” of severity in ≥1 body region and 76.0% had abnormal involuntary movements in ≥2 regions. Caregiver ratings were significantly correlated with patient ratings (but not with clinician ratings) for maximum severity of abnormal involuntary movements and the number of affected regions (both p <.05). Based on their own judgments and perceptions, caregivers reported that the patient’s movements had “some” or “a lot” of impact on their (caregiver’s) ability to continue usual activities (50.0%), be productive (58.3%), socialize (55.6%), or take care of self (50.0%). Conclusion: Caregivers as well as patients are negatively affected by TD, and the impact of TD on caregivers’ lives should be considered when determining treatment options.

The Clinical and Economic Burden of Tardive Dyskinesia in Israel

“…For example, data from the RE-KINECT study indicate that TD places a significant burden on caregiver daily activities, productivity, and ability to socialize. 32 These findings also do not account for recent advances in the treatment of TD, notably the approval of vesicular monoamine transporter 2 inhibitors in the United States. 33 While these agents have been shown to be clinically effective, it remains to be determined whether their use will impact the associated economic burden.…”

Current perspectives on the epidemiology and burden of tardive dyskinesia: a focused review of the clinical situation in Japan

“… 51 Notably, among patients with at least one psychiatric disorder who have three or more months of lifetime antipsychotic exposure, those with TD have lower rates of employment than those without. 53 In addition, patients may experience difficulties in carrying out daily activities necessary for independent living because of their symptoms. 54 …”

“…104 The burden of TD affects not only the patients themselves, but extends to their caregivers, as described in the RE-KINECT study, in which caregivers reported that the TD symptoms of the patient in their care impacted their own ability to continue usual activities (50.0%), be productive (58.3%), socialise (55.6%) and take care of themselves (50.0%). 53 To date, there are no Japanese studies that specifically investigate TD caregiver burden, but it is reasonable to expect that caregivers in Japan face similar issues.…”

Pathophysiology, prognosis and treatment of tardive dyskinesia

“…4 , 5 TD carries a debilitating social and functional burden for both patients and caregivers. 6 , 7 …”

“…4,5 TD carries a debilitating social and functional burden for both patients and caregivers. 6,7 Knowledge of TD among Japanese physicians is limited, and they may not fully understand the importance of monitoring for this drug-induced movement disorder among patients treated with antipsychotics. An understanding of how to effectively manage patients and when to initiate treatment once diagnosed may also be lacking.…”