Abstract
Background
Tardive dyskinesia (TD) negatively affects overall quality of life (QoL) and day-to-day activities, and perceptions of these effects and their impact may vary between cultures and societies, or providers and patients. Physicians’ discernments of this burden could improve efforts to detect, diagnose and treat TD. This study assessed TD impact from both patients’ and physicians’ perspectives in multiple countries.
Methods
Patients who self-reported a physician diagnosis of TD and schizophrenia, schizoaffective disorder, bipolar disorder or major depressive disorder exhibiting ‘extra, irregular movements’ and physicians (neurologists or psychiatrists) who treated ≥3 patients with TD in the prior 2 years participated in individual 20-minute online surveys. Participating physicians and patients were not linked.
Results
Patients (N=435) and physicians (N=340) were recruited from Australia, Brazil, China, South Korea and Israel. Most patients (84.8%) and physicians (87.6%) reported a moderate/high or moderate to very strong impact of TD symptoms on QoL. Patients and physicians noted substantial negative impacts of TD on patients’ daily lives, emotional and psychological states, and social activities. Many patients reported that TD often/always affected their treatment compliance for their underlying psychiatric condition (28.7%); that TD worsened their underlying psychiatric condition (24.8%), or that they developed other psychiatric conditions (46.9%); most physicians similarly perceived a moderate/very strong impact of TD in these areas (75.3%, 70.9% and 77.6%, respectively).
Conclusions
Patients and physicians across participating countries agreed that TD substantially impacts patient QoL and can undermine psychiatric stability by worsening underlying psychiatric conditions and treatment adherence. Also, physicians saw the physical and emotional/psychological/social effects of TD as being almost equally impactful, whereas patients generally reported a greater impact of emotional/psychological/social effects than physical effects. The differences between the levels of importance that patients and physicians assigned to these areas of TD impact highlight the need for more thorough communication between them.
Keywords: CLINICAL NEUROLOGY, MOVEMENT DISORDERS
WHAT IS ALREADY KNOWN ON THIS TOPIC
The involuntary movements of tardive dyskinesia (TD) can negatively affect patients’ quality of life (QoL), daily activities, healthcare utilisation and costs as well as contribute to the negative impact of patients’ underlying disorders. The full range of the impact that TD can have on patients’ lives, and patients’ perceptions of that impact, however, may not be entirely known.
WHAT THIS STUDY ADDS
Patients with TD and physicians who treat patients with TD reported a substantial negative impact of TD on patients’ QoL, daily lives, emotional states and social activities. However, physicians were more likely than patients to consider these symptoms as having stronger effects, particularly on patients’ underlying conditions.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
The differences between the levels of importance that patients and physicians assigned to these areas of impact of TD highlight the need to improve communication between them.
Introduction
Tardive dyskinesia (TD) is a hyperkinetic movement disorder associated with the use of dopamine receptor inhibitors, including antipsychotics used for the treatment of disorders such as schizophrenia, bipolar disorder and major depressive disorder (MDD).1,4 Although symptoms of TD largely affect the orofacial region, severity and presentation can vary widely and involve the neck, trunk and extremities.5 TD is underdiagnosed, challenging to treat and generally irreversible despite dose reduction or discontinuation of the antecedent drug.5 6 Given the expanding use of antipsychotics to treat a variety of mental health conditions, the potential impact of TD on patients’ and care partners’ lives requires careful consideration.7
The involuntary movements characteristic of TD are typically assessed by clinicians using a 12-item Abnormal Involuntary Movement Scale that measures the severity of abnormal movements across seven body regions.8 These involuntary movements can substantially affect patients directly and contribute to the negative impact of the underlying disorder, further affecting daily physical, cognitive, psychosocial and professional functioning.2 4 7 9 10 TD can negatively affect overall quality of life (QoL) and day-to-day activities such as working and socialising, and can lead to embarrassment, self-consciousness, frustration and anger as well as increased healthcare utilisation and costs.27 11,14 Care partners are also affected by TD, with negative impacts on their own daily and social activities.15
TD prevalence varies by age, sex, ethnicity/race, geographic region and other factors.16 17 The impact of TD on patients’ and care partners’ lives may potentially vary, depending on both patient and cultural/societal characteristics. At the patient level, factors influencing the extent to which TD impacts patients’ and care partners’ lives can include TD symptom severity, the burden of the underlying illness and the patient’s level of functioning. At the societal level, relevant factors include social support as well as access to healthcare resources such as treating physicians, other healthcare providers and effective TD treatments. Furthermore, physicians’ perceptions of the severity and burden of TD symptoms on their patients are likely to affect their efforts to identify, diagnose and treat TD.
Despite recognition of these factors, the burden of TD across different countries or regions, and physicians’ perceptions of that burden, remains poorly studied.14 17 18 As TD has become a global health concern,18 it is more important than ever to understand the range of the impact that TD can have on patients’ lives. Understanding the full range of the burden of TD may inform treatment decisions that could ameliorate some of that burden.18,20 Here, we report the results of international surveys of both patients and physicians to assess TD impact across cultures and from both patients’ and physicians’ perspectives.
Methods
Study design
This international study comprised observational, cross-sectional web-based surveys of unlinked populations of: (1) adults diagnosed with TD to investigate the impact of TD on their QoL and daily functioning and (2) physicians who manage patients with TD to investigate their perspectives on the impact of TD’s burden on their patients’ daily lives. Surveys were conducted in Australia, Israel, China, South Korea and Brazil.
Included patients were aged ≥18 years with a self-reported physician diagnosis of TD and schizophrenia, schizoaffective disorder, bipolar disorder or MDD who were exhibiting ‘extra, irregular movements’. Patients were recruited through physician referrals, online panels and social media. Physicians provided patients with details of the recruitment agency; once the patients contacted the agency, they were emailed a link to the consent form, screener and survey. Additionally, in China, physicians discussed the survey with patients and obtained their consent to share their contact details with the recruiting agency, which then contacted them via email. Participants of patient panels and users of social media were invited to participate and completed a screener and survey after providing online consent.
Physician participants were neurologists, neuropsychiatrists or psychiatrists who had been in practice for ≥3 years, spent ≥60% of their time in direct patient care and had treated ≥3 patients with TD in the previous 2 years. Physicians were drawn from physician research panels or proprietary lists owned by local recruitment agencies. Physicians’ and patients’ data and questionnaires were not linked.
Participants who met eligibility criteria and provided consent were contacted via email with a link to the relevant online survey. The surveys were developed based on a literature review and prior research and were expected to require about 20 min to complete. The surveys were pseudo-anonymised; no personal identifying information was collected, and data were stored on a secure server. A system was in place which was designed to detect and prevent duplicate entries through measures such as verifying IP addresses and other data fingerprints. The complete questionnaire was formatted in accordance with country-specific languages: English (Australia and Israel), Simplified Chinese (China), Korean (South Korea) and Portuguese (Brazil).
Patient data were collected from 27 June 2022 to 17 October 2022 (except in Israel), and physician data were collected from 27 June 2022 to 27 July 2022. A total of 438 patients were recruited from Australia (n=100), China (n=150), South Korea (n=100), Israel (n=3) and Brazil (n=85); 340 physicians were recruited from Australia (n=46), Israel (n=31), China (n=101), South Korea (n=60) and Brazil (n=102). Considering the very low number of patient participants, data from patient surveys from Israel were not included in this analysis, while data from physician surveys were included.
Informed consent was obtained from all participants before screening. Only participants who fulfilled screening criteria were given access to the survey. Before study initiation, the protocol and all study materials were approved by an independent institutional review board.
Survey assessments
Patient survey
Information collected from patient participants included age, sex, country, relationship status, children, education level, year of initial TD diagnosis, underlying psychiatric disease (eg, schizophrenia or schizoaffective disorder, bipolar disorder, MDD) and other comorbidities (eg, asthma, diabetes, cancer, chronic obstructive pulmonary disease).
Patient participants were asked about TD characteristics in the previous 7 days, including the severity and characteristics of extra, irregular movements compared with the time of their initial diagnosis. They were also asked about the area(s) of the body impacted by these movements, such as eyes or facial expressions, lips, jaw, tongue, arms, hands and/or fingers, legs, ankles, neck, shoulders, hips and/or other parts of the trunk.
Patients were also asked to assess the impact of TD on their QoL and their finances, ranking the level of impact on their QoL from 0 (not impacting QoL at all) to 10 (extremely impacting QoL) and the level of financial burden from 0 (no financial burden at all) to 10 (very high financial burden).
The impact of TD was assessed by questions about the effects of TD on activities of daily life (eg, movement, sleeping, eating/drinking, household chores, self-care, pain). The survey also included questions about the emotional and psychological impact of TD symptoms (eg, sadness, anxiety, embarrassment, frustration, inability to focus) and the impact of TD movements on activities of daily life (eg, limitations to exercise, leaving the house, social activities).
Physician survey
Information collected from physician participants included age, sex, country, primary medical specialty (eg, neurologist, psychiatrist), years of clinical experience, proportion of time spent in different settings (eg, private office, hospital) and proportion of time spent in direct patient care. They were also asked to report the frequency with which they assessed the impact of TD in routine clinical practice. To examine their perceptions of the impact of TD on different aspects of patient QoL, participating physicians were asked questions regarding their patients’ physical, psychological and social functioning.
Statistical analysis
Data were summarised descriptively. Continuous variables were summarised by means and SDs and categorical variables were summarised by counts and proportions. Imputation for missing observations was not performed. All statistical analyses were performed using Docteur Stat V.2.1.31.
Minimum sample sizes needed were based on previously collected data on respondent availability in each country according to the recruitment strategy. Overall, 445 patients and 335 physicians were expected to be recruited. As the analysis was intended to be descriptive in nature, the sample size was assessed in terms of expected levels of precision for estimating a proportion of a given study outcome.
Patient and public involvement
Although patients were a fundamental part of this study, there was no direct patient or public involvement in designing the study.
Results
Participants
In the 435 total patients, mean age was 42.4 (SD 11.7) years. There were similar proportions of males (48.0%) and females (52.0%), although differences in sex distribution were observed between Australia (64.0% male) and China (43.3%), South Korea (49.0%) and Brazil (36.5%) (table 1 and online supplemental table 1). Only 28.7% of patients reported working full time, although 37.9% reported having a university-level education (ie, bachelor’s or graduate degree). Schizophrenia or schizoaffective disorder was the most common underlying psychiatric condition overall and in both Australia (70.0%) and China (62.0%), while patients in South Korea and Brazil most frequently reported MDD (45.0%) and bipolar disorder (84.7%), respectively.
Table 1. Patient characteristics.
| Overall N=435 |
Country | ||||
|---|---|---|---|---|---|
| Australia N=100 |
China N=150 |
South Korea N=100 |
Brazil N=85 |
||
| Sex, n (%) | |||||
| Male | 209 (48.0%) | 64 (64.0%) | 65 (43.3%) | 49 (49.0%) | 31 (36.5%) |
| Female | 226 (52.0%) | 36 (36.0%) | 85 (56.7%) | 51 (51.0%) | 54 (63.5%) |
| Age, years, mean (SD) | 42.4 (11.7) | 40.7 (9.4) | 42.1 (13.6) | 48.2 (7.5) | 38.3 (12.1) |
| Current employment status, n (%)* | |||||
| Working full-time | 125 (28.7%) | 41 (41.0%) | 47 (31.3%) | 13 (13.0%) | 24 (28.2%) |
| Working part-time | 43 (9.9%) | 8 (8.0%) | 10 (6.7%) | 11 (11.0%) | 14 (16.5%) |
| Not employed, looking for work | 41 (9.4%) | 7 (7.0%) | 12 (8.0%) | 5 (5.0%) | 17 (20.0%) |
| Not employed, not looking for work | 74 (17.0%) | 19 (19.0%) | 34 (22.7%) | 15 (15.0%) | 6 (7.1%) |
| Other | 183 (42.1%) | 28 (28.0%) | 58 (38.7%) | 61 (61.0%) | 36 (42.4%) |
| Highest level of education, n (%)* | |||||
| Bachelor’s degree (eg, BA or BS) | 125 (28.7%) | 43 (43.0%) | 27 (18.0%) | 27 (27.0%) | 28 (32.9%) |
| Graduate degree (eg, Master’s, MD, PhD) | 40 (9.2%) | 32 (32.0%) | 3 (2.0%) | 4 (4.0%) | 1 (1.2%) |
| Other | 270 (62.1%) | 25 (25.0%) | 120 (80.0%) | 0 | 1 (1.2%) |
| TD symptoms in previous 7 days, n (%) | |||||
| Severe/very severe | 131 (30.1%) | 49 (49.0%) | 15 (10.0%) | 38 (38.0%) | 29 (34.1%) |
| Very much/quite a bit bothersome | 168 (38.6%) | 65 (65.0%) | 33 (22.0%) | 34 (34.0%) | 36 (42.4%) |
| Body areas affected by TD, n (%)* | |||||
| Lips | 201 (46.2%) | 44 (44.0%) | 66 (44.0%) | 60 (60.0%) | 31 (36.5%) |
| Eyes or facial expressions | 193 (44.4%) | 50 (50.0%) | 44 (29.3%) | 60 (60.0%) | 39 (45.9%) |
| Arms, wrists, hands or fingers | 152 (34.9%) | 30 (30.0%) | 60 (40.0%) | 38 (38.0%) | 24 (28.2%) |
| Underlying psychiatric condition, n (%) | |||||
| Schizophrenia or schizoaffective disorder | 233 (53.6%) | 70 (70.0%) | 93 (62.0%) | 30 (30.0%) | 40 (47.1%) |
| Bipolar disorder† | 205 (47.1%) | 59 (59.0%) | 45 (30.0%) | 29 (29.0%) | 72 (84.7%) |
| Major depressive disorder‡ | 171 (39.3%) | 25 (25.0%) | 52 (34.7%) | 45 (45.0%) | 49 (57.6%) |
| Comorbidities, n (%)* | |||||
| High blood pressure (hypertension) | 45 (10.3%) | 15 (15.0%) | 15 (10.0%) | 6 (6.0%) | 9 (10.6%) |
| Diabetes | 30 (6.9%) | 11 (11.0%) | 6 (4.0%) | 6 (6.0%) | 7 (8.2%) |
| Obesity | 28 (6.4%) | 8 (8.0%) | 15 (10.0%) | 0 | 5 (5.9%) |
See online supplemental table 1 for additional details of employment status, highest level of education, body areas affected by TD and comorbidities.
Also referred to as bipolar depression, bipolar mania or manic depressive illness.
Also referred to as clinical depression.
BA, Bachelor of Arts; BS, Bachelor of Science; GED, General Educational Development; MD, Doctor of Medicine; PhD, Doctor of Philosophy; TD, tardive dyskinesia.
Overall, 30.1% of patients reported that their TD symptoms were severe or very severe, and 38.6% reported being bothered a lot by their symptoms in the past 7 days. There were notable differences in symptom severity and how bothersome symptoms were between countries. For example, the proportion of patients reporting symptoms that were severe and symptoms that were quite a bit or very much bothersome was notably greater in Australia (49.0% and 65.0%, respectively) than in China (10.0% and 22.0%). Overall, the body areas most often affected were the lips (46.2%) and eyes or facial expressions (44.4%). Similarly, eyes or facial expressions comprised the body area most often affected in all individual countries except China (29.3%), where lips were most commonly affected by TD (44.0%), followed by arms, wrists, hands or fingers (40.0%).
Among the 340 physicians, 131 (38.5%) were neurologists and 209 (61.5%) were psychiatrists or neuropsychiatrists (both hereafter referred to only as ‘psychiatrists’) (table 2). Overall, the majority of physicians were male (61.8%), mean (SD) age was 45.0 (8.6) years, years of post-qualifying clinical experience was 15.6 (7.9) years and mean (SD) percentage of time spent in direct patient care was 86.1% (10.7%). Neurologists and psychiatrists did not differ markedly in terms of demographics, but country-level differences were observed for specialty (there were considerably more psychiatrists in Australia (67.4%), China (74.3%) and Israel (67.7%) than in South Korea (50.0%) and Brazil (51.0%)) and sex (substantially more male physicians in South Korea (83.3%) than in Australia (60.9%), China (55.4%), Israel (48.4%) and Brazil (59.8%)).
Table 2. Physician characteristics.
| Overall N=340 |
Country | |||||
|---|---|---|---|---|---|---|
| Australia n=46 |
China n=101 |
Israel n=31 |
South Korea n=60 |
Brazil n=102 |
||
| Primary medical specialty, n (%) | ||||||
| Neurologist | 131 (38.5%) | 15 (32.6%) | 26 (25.7%) | 10 (32.3%) | 30 (50.0%) | 50 (49.0%) |
| Psychiatrist | 209 (61.5%) | 31 (67.4%) | 75 (74.3%) | 21 (67.7%) | 30 (50.0%) | 52 (51.0%) |
| Neuropsychiatrist | 10 (2.9%) | 1 (2.2%) | 9 (8.9%) | 0 | 0 | 0 |
| Psychiatrist | 199 (58.5%) | 30 (65.2%) | 66 (65.3%) | 21 (67.7%) | 30 (50.0%) | 52 (51.0%) |
| Sex, n (%) | ||||||
| Male | 210 (61.8%) | 28 (60.9%) | 56 (55.4%) | 15 (48.4%) | 50 (83.3%) | 61 (59.8%) |
| Female | 127 (37.4%) | 17 (37.0%) | 43 (42.6%) | 16 (51.6%) | 10 (16.7%) | 41 (40.2%) |
| Prefer not to state | 3 (0.9%) | 1 (2.2%) | 2 (2.0%) | 0 | 0 | 0 |
| Age, years, mean (SD) | 45.0 (8.6) | 49.8 (8.0) | 41.2 (7.3) | 52.5 (8.5) | 50.2 (4.6) | 41.5 (7.6) |
| Years in practice, mean (SD) | 15.6 (7.9) | 17.3 (7.6) | 14.8 (8.4) | 18.0 (9.5) | 18.7 (4.4) | 13.0 (7.4) |
| Time spent in clinical practice, % mean* | ||||||
| Private office | 28.8 | 41.5 | 1.0 | 21.5 | 10.0 | 63.8 |
| Hospital—outpatient (public or private) | 58.9 | 40.1 | 92.3 | 32.3 | 89.3 | 24.7 |
| Community or private clinic | 10.1 | 16.1 | 2.5 | 45.7 | 0.8 | 9.6 |
| Other | 2.2 | 2.3 | 4.3 | 0.7 | 0 | 1.9 |
| Time spent in direct patient care, % mean (SD) | 86.1 (10.7) | 89.8 (9.7) | 80.6 (10.1) | 91.8 (8.6) | 83.3 (9.4) | 89.9 (9.8) |
Percentages may not total 100 due to rounding.
Patient perspectives on the impact of TD
Most patients reported their TD symptoms had a moderate (score of 4–6 out of 10) or high impact (score of 7–10 out of 10) on their QoL (84.8%) and financial well-being (83.0%) (figure 1). The QoL and financial impacts of TD were considered highest by patients in South Korea and lowest by patients in China.
Figure 1. Impact of tardive dyskinesia on patient QoL and finances. *p<0.05 versus overall. Percentages may not total 100 due to rounding. QoL, quality of life.
Patient participants noted a substantial impact of TD on their daily lives. The activities/abilities most commonly reported as being often or always impacted by TD symptoms were the ability to fall asleep (31.7%) and the ability to stay asleep through the night (31.5%) (figure 2). Sleep disturbances were most commonly reported in Brazil, and patients in Australia most commonly reported the highest impact (often/always) on all activities except sleep (online supplemental figure 1). Overall, 27.6% of patients reported that their extra, irregular movements caused them ‘quite a bit’ or ‘very much’ pain. Patients with TD most frequently had some difficulty or inability with brushing their teeth (41.3%), swallowing food (38.2%) and buttoning their shirt (37.9%).
Figure 2. Patient perspectives on the physical impact of TD. *p<0.05 versus overall. Percentages may not total 100 due to rounding. TD, tardive dyskinesia.
The vast majority of patients reported negative emotional and psychological impacts of TD. A substantial percentage of patients experienced negative feelings as a result of TD (figure 3); the most commonly reported feelings with high frequency (often/always) included feeling anxious or worried (58.6%), sad or unhappy (53.8%) and tired or having low energy (51.5%). There were differences between countries regarding which feelings impacted patients most frequently (often/always): in Australia, 55.0% of patients reported often/always feeling afraid of being rejected; in China, 40.7% felt anxious/worried; in South Korea, 89.0% felt tired/low energy and in Brazil, 76.5% felt afraid of being rejected (online supplemental figure 2).
Figure 3. Patient perspectives on psychological and social impact of TD. *p<0.05 versus overall. Percentages may not total 100 due to rounding. TD, tardive dyskinesia.
Social activities in patients’ day-to-day lives were also negatively affected by TD (figure 3). Patients most noted their movements limiting their social activities (40.7%) and their ability to enjoy things for fun (37.0%) ‘often’ or ‘always’ over the past 7 days. Almost one-third of patients (28.5%) reported that TD symptoms prevented them from leaving the house altogether. Overall, patients were more likely to judge the emotional/psychological and social effects of TD as often or always impacting their lives compared with the physical effects (online supplemental figure 3).
Many patients (28.7%) reported that TD frequently (often or always) affected their compliance with treatment for their underlying psychiatric condition (figure 4). Additionally, one-quarter (24.8%) reported that TD frequently worsened their underlying psychiatric condition, and almost half (46.9%) reported often or always experiencing the development of other psychiatric conditions, such as anxiety. Patients in South Korea were most likely to report that TD frequently worsened their underlying psychiatric condition (43.0%), and patients in China were least likely to report worsening of their underlying condition due to TD (8.0%) (online supplemental figure 4).
Figure 4. Patient perspectives on the impact of tardive dyskinesia on underlying psychiatric conditions. Percentages may not total 100 due to rounding.
Physician perspectives on the impact of TD on patients’ lives
Physicians reported often (6–8 times out of 10) or almost always/always (at least 9 times out of 10) assessing the impact of TD on physical functioning (72.1% overall; ranging from 55.0% in South Korea to 85.3% in Brazil), underlying psychiatric disorders (59.1% overall; ranging from 48.4% in Israel to 67.6% in Brazil), psychological functioning (64.4% overall; ranging from 54.3% in Australia to 70.6% in Brazil) and the patient’s social life (62.4% overall; ranging from 54.3% in Australia to 72.5% in Brazil) (figure 5). There were no substantial differences between neurologists and psychiatrists in how often they reported assessing the impact of TD (online supplemental figure 5).
Figure 5. Frequency with which physicians assess TD impact. *p<0.05 versus neurologists. Percentages may not total 100 due to rounding. TD, tardive dyskinesia.
Overall, physicians perceived a moderate to very strong impact of TD on patients’ QoL (87.6%) (figure 6). Regardless of participating country, the impact of TD on overall QoL was perceived as moderate to very strong by large proportions of physicians, ranging from 76.1% in Australia to 94.1% in Brazil (online supplemental figure 6).
Figure 6. Physician perspectives on the impact of TD on patients. Percentages may not total 100 due to rounding. QoL, quality of life; TD, tardive dyskinesia.
In terms of day-to-day physical functioning, physicians reported a moderate to very strong impact of TD on reduced fine motor function (79.1%), slurring of speech (76.5%) and biting of the tongue or inside of the mouth (74.4%) (figure 6). Physicians in all countries acknowledged the impact of TD on physical functioning, yet the impact on the difficulty associated with eating, chewing or swallowing was perceived as highest among physicians in Brazil (87.3%) and lowest among physicians in China (57.4%).
Psychologically, physicians perceived a moderate to very strong impact of TD on feelings of loss, embarrassment or shame (77.9%); frustration, anger or fear (71.2%); and a loss of a sense of purpose, helplessness or hopelessness (65.6%). Furthermore, 75.3% of physicians perceived a moderate to very strong impact of TD on patients’ satisfaction with their job, academic activities or daily routine. The effects of TD on patients’ social relationships and interactions were deemed moderate to very strong by 93.3% of physicians in South Korea and 62.4% in China. Physicians in South Korea were most likely to report a moderate to very strong impact on social satisfaction (91.7%) and distress related to awareness of TD (91.7%), whereas physicians in China were the least likely (65.3% and 72.3%, respectively).
With regard to social functioning, 79.4% of physicians described the impact of TD on patients’ relationships and interactions as moderate to very strong, and 76.8% of physicians perceived TD to result in isolation, withdrawal or rejection by others as well as avoidance of appearing in public (figure 6). Overall, physicians were only slightly more likely to judge the emotional/psychological and social effects of TD as having a moderate to very strong impact on patients’ lives compared with the physical effects.
Physicians perceived a moderate to very strong impact of TD on patients’ underlying psychiatric condition (70.9%), compliance with treatment for the underlying psychiatric condition (75.3%), and development of other psychiatric conditions, such as anxiety (77.6%). The largest proportion of physicians who noted a moderate to very strong impact of TD on patients’ underlying condition ranged from 56.5% in Australia to 82.4% in Brazil (online supplemental figure 6).
Discussion
This study assessed patients’ and physicians’ perceptions of TD impact in five countries (across three continents) and demonstrated the significant impact of TD on multiple aspects of patients’ lives, including physical, psychological and social domains. These findings provide further support for previous research demonstrating a negative impact of TD on patients’ QoL, day-to-day activities, emotions, both social and professional interactions, and underlying disorders.2 4 7 11 12 21 22
In this study, physician and patient data were not linked, and the questions and response options contained in the physician and patient surveys were not always identical. Nevertheless, some comparisons could be made between the perceptions of physicians and patients on the impact of TD. Both patients and physicians agreed on the substantial negative impact of TD on social, psychological and physical domains of QoL, as well as on underlying psychiatric conditions. Though TD symptoms have their origin in the physical domain, patients consistently reported that they adversely impact the psychological domain of daily life, in agreement with physicians’ understandings. Regardless of the participating country, both physicians and patients perceived a considerable impact of TD on patients’ QoL. However, patients were more likely to note the impact of the emotional/psychological and social effects of TD on their lives than the physical effects, and this was especially true of the psychological effects. Compared with patients, physicians estimated that the impact of the emotional/psychological and social effects of TD and the physical effects was much closer together, indicating that they saw similar effects of physical and psychological impacts compared with the patients. Physicians also tended to assign greater importance to the impact of TD on underlying psychiatric conditions and treatment adherence.
Some previous studies have found that patients ranked the effects of TD on physical, psychological and social domains similarly2 or that effects on physical health-related QoL domains were greater than those on mental health measures.4 However, we found that patients were more likely to judge the emotional/psychological and social effects of TD as often/always impacting their lives than the physical effects. A similar split was observed in physicians’ responses; however, they were only slightly more likely to judge the emotional/psychological and social effects of TD as having a moderate/very strong impact on patients’ lives compared with the physical effects. These findings are similar to those found in the IMPACT-TD clinician scale study.22
Most physicians surveyed both acknowledged the effects of TD on patient QoL and reported often/always assessing the impact of TD on multiple aspects of their patients’ daily lives. It is possible either that physicians who have seen the potential impact of TD assess their patients frequently or that physicians who assess their patients frequently are better positioned to note the impact of the disorder.
These results indicate that TD may have a negative impact on patients’ underlying psychiatric disorders. Both patients and physicians recognised this impact, including effects on treatment adherence and on the development of other psychiatric conditions. However, physicians reported that they were less likely to assess the impact of TD on underlying psychiatric conditions or aspects of patients’ social lives, family lives or psychological functioning than to assess physical functioning. Increased focus on evaluating the non-physical effects of TD is likely to improve care for these patients.
The impact of TD was notable in each of the countries examined, yet some differences were observed. For example, the impact of TD on physical functioning was most pronounced in Australia. A markedly greater proportion of Australian patients reported difficulties or inability to perform daily tasks, which could be attributed to the relatively greater severity of symptoms reported by this subset of patients compared with other countries. It is also not surprising that patients in this country experienced the highest levels of impact in their social life. Differences between countries and the potential cultural and systemic factors that lead to those differences should be explored in future research to help identify areas for improvement in individual systems and strategies that could be applied cross-culturally to improve TD treatment.
Considerable psychological and emotional impacts of TD were consistently observed regardless of the reported severity of TD symptoms. For instance, patients in South Korea and Brazil often reported high rates of sadness, anxiety, embarrassment and low self-esteem, even though they were not as likely as those in Australia to report severe physical impacts of TD symptoms. Although some evidence supports a positive relationship between TD symptom severity and patient-assessed impact,11 our findings support a disconnect between the severity of physical and psychological, emotional and social effects of TD on patients’ lives, similar to findings from studies using the IMPACT-TD clinician scale.21 22 Physicians should be aware that even patients with ‘mild’ TD may experience moderate to severe impacts of the disorder on their daily lives and psychological health, supporting the need for regular screening for TD symptoms.
As this study was observational, causal associations cannot be determined. Furthermore, physician and patient data were not linked, such that differences between the populations only generally reflect physician-patient interactions. Both patient and physician participants had to have access to the survey and motivation to complete the survey, which could have led to sampling bias. In addition, self-reported data are subject to recall bias. This study also relied on patients’ self-report of their TD diagnosis rather than including only patients with physician-confirmed diagnoses. Even with these limitations, however, this study provides new insights into the burden of TD and highlights the potential differences between patient and physician perspectives on this burden, and therefore the importance of learning about the impact of TD from both perspectives.
The results of this study demonstrate that physicians and patients both agree that, despite cultural differences, TD has a substantial negative impact on patient QoL across the physical, psychological and social domains and may impact treatment of the underlying condition. This points to the need for better diagnosis and universal screening for and assessment of the impact of TD on each of these domains rather than simply assessing the severity of the movements themselves. The differences between the levels of importance that patients and physicians assigned to these areas of TD impact highlight the need for more thorough communication between these groups.
Supplementary material
Acknowledgements
Medical writing and editorial support were provided by Alison Adams, PhD, CMPP, Jennifer Steeber, PhD and Kelsey Hogan, MS, of Ashfield MedComms, an Inizio company, and were funded by Teva Branded Pharmaceutical Products R&D LLC.
Footnotes
Funding: This study was supported by funding from Teva Branded Pharmaceutical Products R&D LLC. The sponsor developed the study design in collaboration with the authors and was involved in the data collection, analysis and interpretation, writing the report, and the decision to submit the paper for publication.
Provenance and peer review: Not commissioned; externally peer reviewed.
Patient consent for publication: Not applicable.
Ethics approval: This study involves human participants. This study obtained ethics approval from the Cerner Enviza Institutional Review Board. No reference number ID was provided at approval. All participants gave informed consent before screening.
Data availability free text: Qualified researchers may request access to patient-level data and related study documents, including the study protocol and the statistical analysis plan. Requests will be reviewed for scientific merit, product approval status and conflicts of interest. Patient-level data will be de-identified, and study documents will be redacted to protect the privacy of trial participants and to protect commercially confidential information. Please email USMedInfo@tevapharm.com to make your request.
Data availability statement
Data are available upon reasonable request.
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Supplementary Materials
Data Availability Statement
Data are available upon reasonable request.