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.
Highlights
Survivors of acquired brain injury (ABI) often experience severe long-term consequences across physical, cognitive, social, behavioral, or psychological domains
Patients were included if they met the following criteria: [1] severe traumatic or non-traumatic brain injury followed by intensive neurorehabilitation at Department of Neurorehabilitation, TBI Unit; [2] ≥18 years at time of follow-up; [3] ≥1year since time of injury; [4] intact ability to understand and read Danish; [5] ≥7 on the Rancho Los Amigos Scale (RLA) at follow-up indicating the resolution of post-traumatic amnesia (PTA) or similar state of confusion for patients with non-traumatic injuries
Most had sustained a severe injury indicated by length of PTA or period of confusion (Table 3)
Summary
Survivors of acquired brain injury (ABI) often experience severe long-term consequences across physical, cognitive, social, behavioral, or psychological domains. Physical or cognitive disabilities can be devastating, but it has been argued that change in neurobehavioral functioning is one of the most distressing legacies of ABI [1, 2]. Long-term social isolation and poor psychosocial outcome can be a result of these severe consequences [10, 11]. Kreutzer et al has argued that the presence of NBD is directly associated with poor outcome [10], and Testa et al found that neurobehavioral problems and impaired family functioning were strongly related [14]. Neurobehavioral disability (NBD) has a major influence on long-term psychosocial outcome following acquired brain injury, as it affects the survivor of the brain injury, but the whole family
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