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TD Has ‘Severe Impact’ on Patients and Caregivers
Tardive dyskinesia (TD) was found to have a “severe impact” on the lives of both patients and their caregivers across physical, psychological, and social domains. Results from the survey-based study were published in the Journal of Patient Reported Outcomes.
“Caregiver input may be an important resource for health care providers in assessing the impact of TD on the patient,” noted lead author Rakesh Jain, MD, and co-authors. “These results also demonstrate that TD imposes a substantial burden on caregivers’ professional lives, which should be taken into account when considering the societal burden of TD.”
Related: High Comorbidity, Polypharmacy Burden in Patients With Tardive Dyskinesia in LTC Settings
Researchers recruited caregivers from general population panels provided by the Schlesinger Group. Caregivers had to have been providing care, unpaid, for ≥ 3 months to a patient with current diagnoses of TD and schizophrenia (SCZ), bipolar disorder (BD), and/or major depressive disorder (MDD). In an online survey, caregivers reported the impact of TD on the cared-for patient’s physical, psychological, and social functioning, using a 5-point Likert scale, and the impact of caregiving tasks on their psychological well-being and daily activities. The impact on caregivers’ professional lives and overall activity impairment was measured using the Work Productivity and Activity Impairment Questionnaire (WPAI).
Patient Impact
In total, 162 caregivers completed the study, with a mean age of 40 years, while cared-for patients had a mean age of 62.6 years. Despite 90.7% of patients receiving TD medications, 35.2% of caregivers reported the patient’s TD symptoms to be severe or very severe, and 69.8% described patients being “quite a bit” or “very much” bothered by symptoms. Most (82.7%) caregivers reported that TD had a severe impact (impact score ≥ 4 on at least 1 item within each domain) on the cared-for patient across all 3 domains.
On a scale from 1 to 5 (with 1 being no impact and 5 being most impact), the mean physical impact score reported by caregivers was 3.2 and increased with TD symptom severity (3.0 for no/mild/moderate versus 3.6 for severe/very severe). The caregiver-reported score for psychological impact was 3.5 and also increased with symptom severity (3.3 for no/mild/moderate versus 3.7 for severe/very severe. The caregiver-reported score for social impact was 2.9, and increased with symptom severity (2.7 for no/mild/moderate versus 3.2 for severe/very severe).
Caregiver Impact
As for caregiver impact, mean scores were 2.1 for TD-related caregiving tasks, 2.5 for caregiver psychological well-being, and 2.7 for caregiver daily activities, increasing with symptom severity. Almost 1 in 4 caregivers (23.5%) reported severe impact across all 3 domains, increasing with symptom severity: severe/very severe TD symptoms (33.3%) versus no/mild/moderate TD symptoms (18.1%). About 30% of caregivers reported that the patient’s TD always or often impacted their ability to enjoy the things they do for fun, join social activities, socialize, and/or to date or meet new people. Overall, caregivers experienced 46.4% activity impairment.
Employed caregivers’ (n = 136) work was also impacted, resulting in 13.8% missed work time and 44% experienced impairment while working. Employed caregivers reported that caring for patients limited them at work sometimes (38.2%), often (15.4%), or always (2.9%), and prevented approximately one-quarter from working a full-time job.
While the survey benefits from a large sample size and anonymity due to its online format, the results are susceptible to limitations such as recall bias, selection bias, and non-random missing data. The caregivers included may not fully represent the overall population due to factors like higher education levels and computer literacy. The study focused solely on caregivers of patients with TD and certain mental health conditions, without comparing them to caregivers of patients without TD, and was conducted during the COVID-19 pandemic, which could have affected caregivers' experiences and responses.
“As subjective caregiver burden is known to be a risk factor for anxiety in unpaid caregivers, these results highlight the importance of recognizing the incremental negative impact of TD on caregivers and may help health care providers develop assessment tools for holistic evaluation of the caregiver burden in TD,” authors concluded.
