Measuring Neurobehavioral Disabilities Among Severe Brain Injury Survivors: Reports of Survivors and Proxies in the Chronic Phase

Abstract

Background: Neurobehavioral disability (NBD) has a major influence on long-term psychosocial outcome following acquired brain injury, as it affects not only the survivor of the brain injury, but the whole family.Objectives: To investigate (1) the frequency of NBD among survivors of severe brain injury measured by the Danish version of the St Andrew's-Swansea Neurobehavioural Outcome Scale (SASNOS) rated by patients and proxies, (2) factors associated with NBD, and (3) concordance between reports of NBD completed by patients and proxies.Methods: SASNOS was administered at an outpatient unit as a part of a follow-up assessment after discharge from intensive neurorehabilitation. SASNOS consists of five factors describing the following domains: Interpersonal Behavior, Cognition, Aggression, Inhibition and Communication, and both the patient and a proxy were asked to complete the questionnaire. Data collection was conducted over a period of 2 years, and 32 patients and 31 proxies completed the questionnaire. Mean time since injury was 19.4 months (10.0 SD). Most patients were male (68.8%), and most proxies were female (58.1%). Most of the patients had suffered a traumatic brain injury (68.8%).Results: A fourth of this patient group reported themselves below the normal range on the major domains of Interpersonal Behavior and Cognition. Significant associations between proxies' reports and time since injury, cohabitant status, and the patient's score on the Extended Glasgow Outcome Scale were found. Furthermore, significant differences were found between patient and proxy ratings. Proxies rated patients as having fewer problems on the Interpersonal Behavior domain, and more problems in relation to Cognition. Cognition was the only domain, where patients rated themselves higher indicating fewer problems, compared with their proxies. On both the Aggression and Communication domains, proxies rated patients higher indicating fewer problems than the patients themselves.Conclusion: Danish brain injury survivors experienced NBD as measured by SASNOS. Differences were found between patient and proxy ratings in relation to Cognition and Interpersonal Behavior. The NBDs identified can affect the survivor's ability to reintegrate and participate in activities of daily living, emphasizing how a systematic assessment is required.

Using the St Andrew’s – Swansea Neurobehavioural Outcome Scale (SASNOS) to determine prevalence and predictors of neurobehavioural disability amongst survivors with traumatic brain injury in the community

“…Further, the high overall prevalence rate of NBD in our sample contrasted sharply with the result of 32.3% described by Soendergaard et al (2019). In the Danish sample, symptoms of NBD were relatively infrequent and predominantly of 'mild' severity.…”

Neurobehavioral Initiation and Motivation Problems After Acquired Brain Injury

“…Distressing physical and cognitive disabilities are well-known consequences of ABI. However, the ensuing changes in neurobehavioral functioning may even be more overwhelming for both the patients as well as their proxies (2).…”

“…These consequences of ABI undermine the capacity for independent social behavior and result in severe long-term social impairment, leading to poor psychosocial outcomes (6). Moreover, they affect not only the survivors of brain injury but also their whole families (2).…”

Cellular and Molecular Pathophysiology of Traumatic Brain Injury: What Have We Learned So Far?

“…Projections from the Global Burden of Disease (GBD) point out that the incidence of TBI tends to increase in the coming years due to the growth in population density and the increasing use of automobiles, motorcycles and bicycles as a way of transport [ 6 ]. One of the most devastating consequences of a TBI is the cognitive and/or functional impairment observed in surviving patients, which is directly associated to the degree of the injury [ 3 ], generating not only repercussions on the quality of life of affected individuals but also directly affecting the lives of their relatives and caregivers [ 7 ], with an important economic burden involved [ 8 ].…”