Unilateral Spatial Neglect May Not Be Detected by Performance-Based Functional Neglect Assessment

Method

This study was a descriptive secondary analysis of data (N = 133) from a cross-sectional neglect measurement study that took place at two institutions. All research procedures were approved by the institutional review boards at the University of Pittsburgh and the Medical University of South Carolina. All participants provided informed consent and understood the risks and benefits in participation in the study, that participation was voluntary, and that their identities would not be disclosed. The procedures followed were in accordance with the ethical standards of the institutional review boards and were consistent with the revised Helsinki Declaration of 2000. Data were stored in a secure manner and confidentiality was maintained.

Results

Of the 133 participants in the parent study, 48 (36.1%) participants were classified as without neglect and 85 (63.9%) were classified as with neglect on the basis of therapist-rated total CBS scores. In the subsample of 48 participants (who self-reported neglect symptoms yet were classified as without neglect) who were analyzed further (Table 1), the average age was 59.5 yr (SD = 13.8). The majority of participants were Caucasian men who experienced a right hemisphere ischemic stroke an average of 61.0 mo (SD = 55.7) before enrollment. On average, participants self-reported mild neglect symptoms, with a mean CBS anosognosia score of 2.6 (SD = 3.1).

Thirty (62.5%) of the 48 participants classified as without neglect still reported symptoms of neglect on the CBS self-evaluation scale. The percentages of participants who indicated some level of impairment (score ≥ 1) on items ranged from 6.3% (grooming item) to 35.4% (limb awareness; Table 2). Participants most commonly self-reported the neglect symptoms “limb awareness,” “collisions when ambulating,” and “difficulty locating personal belongings” when therapists did not identify disability. Ratings of 1 (mild neglect) were most commonly reported and ratings of 3 (severe neglect) were rarely reported. There was a significant difference between assessor-rated (M = 0.0, SD = 0.0) and participant-rated (M = 2.6, SD = 3.1) total CBS scores, t(47) = 5.7, p < .001. Participants rated themselves significantly higher (i.e., perceived greater neglect) than assessors. There were no significant differences (p < .05) for any of the self-report item scores or total scores between participants with left and right hemisphere lesions.

Discussion

The purpose of our study was to determine whether there are people who self-report neglect symptoms but do not demonstrate neglect on the therapist-scored CBS. Our results indicate that many people report some level of disability associated with neglect yet do not meet the criteria to be classified as having neglect according to a commonly used performance-based measure. The CBS self-evaluation anosognosia scale is typically used to measure a client’s lack of awareness of neglect deficits; hence, the patient-reported score should be lower than the therapist-administered score. Previous studies have found that patient-reported CBS scores are significantly lower (i.e., they report less neglect, anosognosia is present) compared with therapist-administered CBS scores (Azouvi et al., 2003; De-Rosende-Celeiro et al., 2021; Grattan et al., 2018). However, it is interesting that our analysis revealed a group of people who demonstrated a patient-self-reported score that was higher than the therapist score; that is, these individuals reported higher neglect levels than indicated by the scores obtained by the therapists. This suggests that, perhaps in using this assessment, therapists are not capturing the full scope of a client’s lived experience with neglect when performing.

Our findings contribute to the evidence that functional neglect assessments may not always detect comprehensive neglect symptoms poststroke. Moreover, the results suggest that we may be missing neglect symptoms entirely. A previous mixed-methods study of people who had been diagnosed with neglect found that the CBS did not fully capture neglect-related disability or safety issues that the people with neglect were experiencing (Klinke et al., 2016). If people are not identified by functional neglect assessments, it is unlikely that they will receive adequate treatment to allow for safe participation in daily activities. Without proper intervention, people with neglect may be at a greater risk for injuries and may experience less recovery.

Overall, when participants in the present study reported difficulty in completing tasks, they typically reported mild difficulty rather than moderate or severe. It is interesting to note that our sample included a slightly larger percentage of people who reported right side neglect (left hemisphere lesion), which is known to be associated with milder neglect symptoms (Ten Brink et al., 2017). Milder symptoms of neglect may go unnoticed by therapists, because they may not be as evident within a more controlled clinical assessment environment. Previous studies in the field of stroke rehabilitation have also found discrepancies between patient-reported outcomes and assessor-rated assessments (Maaijwee et al., 2014; Stewart & Cramer, 2013; van Delden et al., 2013). Often, patients report greater poststroke symptoms than functional assessments indicate. For example, Stewart and Cramer (2013) discovered that a large number of people who had little to no disability, according to assessor-rated functional assessments, reported reduced use and difficulty with hand movements on patient-reported outcome measures. Van Delden et al. (2013) found that even when minimal clinically meaningful changes on upper extremity function assessments were detected, patients did not always report perceiving a clinically significant change. Similar findings have been reported regarding cognition poststroke. Maaijwee et al. (2014) revealed that people in the acute and subacute phases poststroke report cognitive impairments that do not correlate strongly with performance on cognitive measures. Failure to detect mild neurological symptoms tends to be a theme across assessor-rated assessments.

Findings highlight the importance of measuring neglect symptoms in a variety of modes (e.g., self-report, performance based) and with several items having various levels of complexity to capture the fluctuating levels of neglect that a patient may experience in both their simple and their complex daily routines. The demands of a task increase or decrease depending on the context within which it is performed; therefore, existing functional neglect assessments may not be sufficiently challenging, because they are typically performed in only one context (Sarri et al., 2009). For example, someone may have a more difficult time finding their car keys on the left side of their kitchen table when the television is on and people in the next room are conversing than when home alone in a quiet environment. These external distractors are prevalent in everyday life and often increase the cognitive demand for completing even seemingly simple tasks. In addition, studies have shown that tasks that require dual attention increase the cognitive load required for performance and are more likely to reveal a patient’s neglect (Andres et al., 2019). For example, the cognitive load can be increased through combining tasks that are both physically and cognitively challenging, such as navigating a busy grocery store while recalling ingredients for a meal. Thus, it is possible that for participants in this sample, the assessors did not detect neglect on the CBS because the items did not fully replicate various levels of complexity with the environment or task demands experienced in their own daily life.

Although there are certainly merits to using the self-report, it is also important to recognize that people with neglect often have anosognosia where they lack insight or awareness into their disability and, therefore, underreport neglect symptoms. It is possible that, although participants in this study did self-report neglect symptoms, they were actually experiencing a disability that was even greater than they knew. This is why it is important for clinicians to incorporate both performance-based assessments and conduct personalized client interviews to determine the extent to which neglect may be affecting a client’s performance in daily activities poststroke.

A limitation of this study is that participants who reported neglect symptoms may have overreported symptoms. For example, a person may report difficulty with collisions, but these challenges could also be attributed in part to decreased balance. A study by Tobler-Ammann et al. (2020) found that some people with neglect have difficulty distinguishing between neglect and other impairments (e.g., nonuse because of hemiparesis), which often coexist. Although it is possible that some people are reporting difficulty with certain daily activities because of impairments other than neglect, this alone is unlikely to account for the entirety of the substantial number of people reporting neglect-related disability. Given the nature of the self-report, there is some potential subjectivity with participants’ perceived level of difficulty. Therefore, we believe that the most compelling finding is that people reported some level of difficulty or disability that was not identified by the performance-based measure. Findings also may be attributed to the assessments used in this study. However, there is evidence that the CBS is more sensitive than other neglect assessments (Chen et al., 2012; Gillen et al., 2021), and, to our knowledge, it is the only assessment that has a self-report measure that is parallel to the performance-based, assessor-rated version. In addition, it is the only performance-based neglect assessment that includes items that address personal, peripersonal, and extrapersonal neglect (Grattan & Woodbury, 2017). Virtual reality assessments may offer the opportunity to sensitively identify neglect-related disability and could potentially be paired with real-world self-report (Buxbaum et al., 2012; Ogourtsova et al., 2017).

Another limitation of the study is that we did not randomize the order of the assessments, because the self-evaluation anosognosia form is intended to be administered after the performance-based assessment. We did not anticipate that this would affect our findings, but it is possible that this primed participants to think more about how neglect affects them on a daily basis. Although we used methods to try to prevent or minimize self-report bias, it is possible that the self-report bias (Althubaiti, 2016) still affected findings. It is also possible that these findings would not generalize to a more acute population. On average, participants in this study were in the chronic stage of stroke recovery and reported mild symptoms of neglect. Neglect is more common early after stroke, but it is estimated that approximately one-third of people with acute neglect continue to have chronic neglect (Karnath et al., 2011; Marchi et al., 2017). People who are in the acute stage of stroke recovery typically have more severe neglect (Moore et al., 2021) that may be more likely to be captured and detected by the assessor-rated CBS. Our findings may be attributed to the participants’ stage of stroke recovery. It is also likely that a self-report measure would be less useful in determining whether a person has neglect in the acute and subacute stages of stroke recovery, given the high rates of anosognosia earlier after stroke (Starkstein et al., 2010). Future studies should explore potential predictors of perception of neglect, including chronicity.

Implications for Occupational Therapy Practice

It is currently recommended that occupational therapists use functional neglect assessments rather than paper-and-pencil assessments to determine whether clients have neglect. However, our research suggests that even a functional neglect assessment may lack sensitivity and that clients who are experiencing mild neglect symptoms may not be identified. It is vital to identify even mild neglect symptoms accurately early after stroke so that we may treat these symptoms, because they are associated with higher rates of occupational dysfunction. Practitioners in acute care settings must assess for neglect and be cognizant of the impact that neglect can have on occupational performance. The findings of this study have the following clinical implications for occupational therapy practice:

▪ Occupational therapists should be aware that performance-based assessment may fail to identify mild neglect in clients who report neglect symptoms in their daily life.

Conclusion

Our findings suggest that a commonly used neglect measure may fail to identify people with neglect, but additional investigation is warranted. A mixed-methods study may provide further insight into how people perform on a breadth of neglect measures compared with their account of their experience in daily life. If limitations are revealed, it is possible that a new measure may need to be developed. Our findings emphasize the need for clinicians to carefully screen and assess people for neglect, because even milder symptoms have the potential to cause occupational dysfunction. To accurately identify these people, clinicians should complete a comprehensive interview and occupational profile to assess areas of performance that may be affected by neglect.