Caregiver-Reported Burden in RE-KINECT: Data From a Prospective Real-World Tardive Dyskinesia Screening Study.
Andrew J Cutler, Stanley N Caroff, Caroline M Tanner and 5 others
PMID 34154444WHAT IT FOUND
Caregivers of patients with possible tardive dyskinesia rated the impact of caring for the patient on their own lives as a median 6 on a 0 to 10 scale.
Among the 36 who noticed movements, at least half said the movements affected usual activities, productivity, self-care, or socializing.
Key findings
01Caregivers rated the impact of the patient's health condition on their own lives with a median score of 6 on a 0 to 10 scale.
02Of the 36 caregivers who noticed abnormal involuntary movements in the past 4 weeks, at least half said those movements had some or a lot of impact on their usual activities, productivity, self-care, or socializing.
03Caregivers and patients gave similar severity ratings for head/face movements, with a correlation of 0.66, but caregivers and clinicians did not agree significantly on maximum severity or total number of affected regions.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Only 41 unpaid caregivers completed the questionnaire, so the findings are small and may not represent all caregivers of patients with possible tardive dyskinesia. There was no control group, so the study cannot show how much burden was caused by possible tardive dyskinesia rather than by caring for someone with psychiatric illness or other conditions. The questionnaire was not designed to evaluate every aspect of the caregiving experience. Correlation analyses were exploratory and not intended for hypothesis testing. Of the 78 reported caregivers, 37 were paid professionals or did not provide consent, and 45 qualified caregivers consented but only 41 completed the questionnaire. Five caregivers did not notice abnormal involuntary movements despite clinician-rated possible TD, and the study could not explain why.
Declared interests
The study was funded by Neurocrine Biosciences, Inc. Project and data management were provided by Evidera, and some authors were former or current employees of Evidera. Several authors reported consulting, research grants, speaker bureau roles, data monitoring committee service, or employment with Neurocrine Biosciences and other pharmaceutical companies.
The easy way to misread this
Do not conclude that tardive dyskinesia caused caregiver burden. The study had no control group and only 41 caregivers, so it cannot separate the effect of possible tardive dyskinesia from the burden of caring for a person with psychiatric illness.