Tardive Dyskinesia Research Review

Caregiver-reported burden in RE-KINECT: data from a prospective real-world tardive dyskinesia screening study

Cutler, et al. J Am Psychiatr Nurses Assoc. 2021;10783903211023565.

Background
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.

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 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%).

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.

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.

• The objective assessment of patients’ movements (eg, their location/severity) is valuable, but it is important to assess as well how the movements affect the patients’ mood, self-image, and behaviors. For instance, are the movements interfering with social and occupational functioning?
• The caregivers surveyed in this report frequently noted reductions in patients’ social and occupational functioning as a consequence of the movements.
• Of interest, the assessments of caregivers and patients about severity and impact were more similar than those of healthcare professionals and patients.
• As healthcare professionals struggle to collect important information that we need to be as useful as possible to our patients, we should take advantage of the information from these caregivers, especially since it more accurately reflects patients’ experiences than our clinical impressions do.

Summary
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.

Clinical Insights

• Most participating caregivers are either family and friends (84%) or professional caregivers in group homes and long-term care facilities.
• TD added significantly to caregiver burden and many caregivers are employed. Hence, screening for TD and timely, effective treatment has the potential to lower caregiver burden and to support the caregiver, particularly in cases where patients’ TD-related functional impairments can be decreased with treatment.
• Two thirds of the caregivers felt TD took up a fair amount of their time and one third noted that assisting a patient with a movement disorder as a health condition required most of their time.
• It is important for healthcare professionals screening and treating TD to note that even a 50% improvement in TD symptoms can substantially lower the burden on the caregiver and reduce caregiver burnout.
• Even a 50% improvement in the AIMS score may translate into significant functional gains for the patient, such as being able to drive, use the computer, and participate in social activities. This, in turn, has a significant positive impact on the patients’ family units.
• Telepsychiatry enables rapid interview of the family/caregiver to obtain their insights into the impact of TD during a patient visit.

Summary
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.