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Cutler, et al. J Am Psychiatr Nurses Assoc. 2021;10783903211023565.
RE-KINECT, 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. The goal of this study was to capture the experiences of caregivers who assisted individuals with abnormal involuntary movements that were confirmed by healthcare professionals as being consistent with TD.
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).
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 statistically significantly correlated with patient ratings (but not with healthcare professional ratings) for maximum severity of abnormal involuntary movements and the number of affected regions. Based on their judgments and perceptions, caregivers reported that the patients’ movements had “some” or “a lot” of impact on their (caregivers’) ability to continue usual activities (50.0%), be productive (58.3%), socialize (55.6%), or take care of oneself (50.0%).
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.
Clinical Commentary (Joseph P. McEvoy, MD)
Patients with TD often live at home with family or in supervised living situations with professional caregivers. It is valuable to include these individuals as members of patients’ treatment teams who can provide detailed information about patients’ movements and reactions to the movements and compliance to prescribed treatments.
As healthcare professionals, we assess the external manifestations of TD in our patients and make decisions about somatic treatments based largely on that information (eg, a VMAT2 inhibitor). The people who live with and help to care for our patients have a more accurate understanding of the impact on patient quality of life and social and occupational functioning. Hence, healthcare professionals should take advantage of every opportunity to obtain the valuable information caregivers have to offer.
Commentary (Sanjay Gupta, MD)
In the conventional antipsychotic era, there were no treatments available for TD, although it was screened for. At that time, the impact of TD on the patient and caregivers was largely ignored. Previous studies noted that patients lacked awareness and insight into their TD symptoms and movements. The availability of the VMAT2 inhibitors brought TD screening and treatment into focus. The present study draws attention to a lesser-known and underresearched aspect of TD: the impact of TD and subsequent functional impairments on caregivers.
In my opinion, an ideal and well-rounded TD assessment should include insights from the family/caregiver to assess not only the impact of TD on the patient but also on the family and caregiver. Effective TD treatment has the potential to address the patient’s functional and psychological disability and support the caregiver, thereby addressing 2 healthcare issues: TD diagnosis and treatment and caregiver burnout.