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

Pernille Langer Soendergaard, Lars Siert, Ingrid Poulsen, Roger Wood, Anne Norup

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Resumé

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.
OriginalsprogEngelsk
Artikelnummer51
TidsskriftFrontiers in Neurology
Vol/bind10
Antal sider11
ISSN1664-2295
DOI
StatusUdgivet - feb. 2019

Fingeraftryk

Proxy
Survivors
Cognition
Communication
Wounds and Injuries
Reference Values
Outpatients

Citer dette

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title = "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.",
keywords = "Acquired brain injury, Chronic phase, Neurobehavioral disability, Proxy ratings, SASNOS, Traumatic brain injury",
author = "Soendergaard, {Pernille Langer} and Lars Siert and Ingrid Poulsen and Roger Wood and Anne Norup",
year = "2019",
month = "2",
doi = "10.3389/fneur.2019.00051",
language = "English",
volume = "10",
journal = "Frontiers in Neurology",
issn = "1664-2295",
publisher = "Frontiers Research Foundation",

}

Measuring Neurobehavioral Disabilities Among Severe Brain Injury Survivors: Reports of Survivors and Proxies in the Chronic Phase. / Soendergaard, Pernille Langer; Siert, Lars; Poulsen, Ingrid; Wood, Roger; Norup, Anne.

I: Frontiers in Neurology, Bind 10, 51, 02.2019.

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

TY - JOUR

T1 - Measuring Neurobehavioral Disabilities Among Severe Brain Injury Survivors: Reports of Survivors and Proxies in the Chronic Phase

AU - Soendergaard, Pernille Langer

AU - Siert, Lars

AU - Poulsen, Ingrid

AU - Wood, Roger

AU - Norup, Anne

PY - 2019/2

Y1 - 2019/2

N2 - 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.

AB - 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.

KW - Acquired brain injury

KW - Chronic phase

KW - Neurobehavioral disability

KW - Proxy ratings

KW - SASNOS

KW - Traumatic brain injury

U2 - 10.3389/fneur.2019.00051

DO - 10.3389/fneur.2019.00051

M3 - Journal article

VL - 10

JO - Frontiers in Neurology

JF - Frontiers in Neurology

SN - 1664-2295

M1 - 51

ER -