Abstract
Behavioural changes are the main cause of difficulties in interpersonal relationships and social integration among traumatic brain injury (TBI) patients. The Société française de médecine physique et réadaptation (SOFMER) decided to develop recommendations for the treatment and care provision for these problem under the auspices of the French health authority, the Haute Autorité de la santé (HAS). Assessment of behaviour is essential to describe, understand and define situations, assess any change and suggest lines for intervention. The relationship of these behavioural changes with the brain lesion is likewise of crucial importance in legal and forensic expertise.
Aims
Using a literature review and expert opinions, the aim was to define the optimal conditions for the collection of data on behavioural changes in individuals having sustained brain trauma, to identify the situations in which they arise, to review the instruments available, and to suggest lines of intervention.
Methods
A literature search identified 981 articles, among which 122 on the target subject were selected and analysed in detail and confronted with the experience of professionals and user representatives. A first draft of the recommendations was produced by the working group, and then submitted to a review group for opinions and complements.
Results
The literature on this subject is heterogeneous, and presents low levels of evidence. No article enabled the development of recommendations above the “expert opinion” level. After prior clarification of the aims of the evaluation, it is recommended first to carefully describe the changes in behaviour, from patient and third-person narratives, and where possible from direct observations. The information enabling the description of the phenomena occurring should be collected by different individuals (multi-source evaluation): the patient, his or her close circle, and professionals with different training backgrounds (multidisciplinary evaluation). The analysis of triggering or associated factors requires an assessment of cognitive functions and any neurological pathology (seizures). After confrontation and synthesis, the information should be completed using one or several behavioural scales, which provide objectivity and reproducibility. The main generic and specific scales are presented, with their advantages, drawbacks and validation references. The group did not wish to recommend any one of them in particular.
Conclusion
The evaluation of behavioural changes is essential, since without it a therapeutic strategy and appropriate orientation cannot be implemented. The emphasis should be put on contextualised, multi-source and multidisciplinary evaluation, including validated behavioural scales. In this area, nevertheless, evaluation is still restricted by several methodological limitations. Further research is needed to improve the standardisation of data collection and the psychometric properties of the instruments. A European harmonisation of these procedures is also greatly needed.
1
Introduction
The evaluation of behavioural changes is a very important issue, because many different circumstances occur in the itinerary of a brain-damaged individual in which such problems arise, and each circumstance entails a different particular objective . There may be a need to assess the type and the seriousness of the disturbance to complete a medical or institutional admission file, and to instate, sometimes very promptly, appropriate treatment or action. The need may be to assess the efficacy of a treatment, either in a care setting or in a clinical trial, or again it may be to decide on a referral and/or the facility best suited to the case. There are also particular situations requiring objective, detailed evaluation (for example in case of criminal offence) or forensic expertise .
In the context of the elaboration of recommendations for clinical practice in cases of behavioural changes in a brain-injured individual, evaluation is intended to provide a reliable, objective and reproducible grounding for the choice of measures to improve the individual and social functioning of the person, and to subsequently assess their efficacy. The evaluation should also contribute to predicting the functional outcome, and the means required to optimise the social integration of these individuals. However this is a difficult process, and a subject of controversy, firstly because there is often a subjective and emotional dimension that increases the risk of mistaken interpretations and over- or under-estimation of the manifestations observed . For this reason, clinicians have long been convinced of the need to develop standardised evaluations, complementing cognitive evaluations, without however reaching any real consensus. This article presents the results of a literature review and a synthesis of expert opinions on the optimal conditions for collecting data on behavioural changes in traumatic brain injury (TBI).
2
Methods
The working group and the HAS bibliographic department identified 981 articles on Medline in English and French published between 1990 and 2012, using the following search terms and keywords.
(“Craniocerebral Trauma”(Majr)) or “Brain Injuries”(Majr) or (Brain injury* or Brain trauma* or Head injury* or Head trauma*)(title) and “Questionnaires”(Mesh) or “Psychiatric Status Rating Scales”(Mesh) or “Quality of Life”(Mesh) or “Brief Psychiatric Rating Scale”(Mesh) or “Test Anxiety Scale”(Mesh) or Agitated Behaviour Scale or Anger reactions and goals scale or Apathy Evaluation Scale or Awareness interview or Behavior Rating Inventory of Executive Functions or Behavioral Assessment of the Dysexecutive syndrome or Brief Psychiatric Rating Scale or Cognitive Behavior Rating Scale or Conflict Tactics Scale or Current Personality Profile or Disability Rating Scale or Dysexecutive Questionnaire or Frontal Behavior Inventory or Frontal Systems Behavior Scale or Head Injury Evaluation Chart or Iowa Rating Scales of Personality Change or Katz Adjustment Scale or Levels of Cognitive Functioning or Rancho Los Amigos Scale or Mayo-Portland Adaptability Inventory or Neurobehavioral Rating Scale or Neurobehavioral Rating Scale-Revised or Neuropsychiatric Inventory or Overt Aggression Scale or Overt Aggression Scale-Modified or Patient Competency Rating Scale or Portland Adaptability Inventory or Richmond Agitation and Sedation Scale or State-Trait Anger Expression Inventory-2 or Symptom Check List 90-R or Toronto Alexithymia Scale-20 or Wessex Head Injury Matrix or rating scale or inventory or battery or neurobehavioral assessment or checklist not “Critical Care”(Mesh) or “Child”(Mesh) or “Infant”(Mesh) or “Pediatrics”(Mesh) or “Adolescent”(Mesh) or (Critical care or child* or infan* or paediatr* or pediatr* or adolescent*).
An initial perusal of the abstracts selected 122 articles covering the target subject. These articles were then analysed according to usual criteria in evidence-based medicine, described in the first article in this issue.
2
Methods
The working group and the HAS bibliographic department identified 981 articles on Medline in English and French published between 1990 and 2012, using the following search terms and keywords.
(“Craniocerebral Trauma”(Majr)) or “Brain Injuries”(Majr) or (Brain injury* or Brain trauma* or Head injury* or Head trauma*)(title) and “Questionnaires”(Mesh) or “Psychiatric Status Rating Scales”(Mesh) or “Quality of Life”(Mesh) or “Brief Psychiatric Rating Scale”(Mesh) or “Test Anxiety Scale”(Mesh) or Agitated Behaviour Scale or Anger reactions and goals scale or Apathy Evaluation Scale or Awareness interview or Behavior Rating Inventory of Executive Functions or Behavioral Assessment of the Dysexecutive syndrome or Brief Psychiatric Rating Scale or Cognitive Behavior Rating Scale or Conflict Tactics Scale or Current Personality Profile or Disability Rating Scale or Dysexecutive Questionnaire or Frontal Behavior Inventory or Frontal Systems Behavior Scale or Head Injury Evaluation Chart or Iowa Rating Scales of Personality Change or Katz Adjustment Scale or Levels of Cognitive Functioning or Rancho Los Amigos Scale or Mayo-Portland Adaptability Inventory or Neurobehavioral Rating Scale or Neurobehavioral Rating Scale-Revised or Neuropsychiatric Inventory or Overt Aggression Scale or Overt Aggression Scale-Modified or Patient Competency Rating Scale or Portland Adaptability Inventory or Richmond Agitation and Sedation Scale or State-Trait Anger Expression Inventory-2 or Symptom Check List 90-R or Toronto Alexithymia Scale-20 or Wessex Head Injury Matrix or rating scale or inventory or battery or neurobehavioral assessment or checklist not “Critical Care”(Mesh) or “Child”(Mesh) or “Infant”(Mesh) or “Pediatrics”(Mesh) or “Adolescent”(Mesh) or (Critical care or child* or infan* or paediatr* or pediatr* or adolescent*).
An initial perusal of the abstracts selected 122 articles covering the target subject. These articles were then analysed according to usual criteria in evidence-based medicine, described in the first article in this issue.
3
Results
All the data analysed, the 122 references and the detailed text of the resulting recommendations can be consulted in French on the SOFMER website http://www.sofmer.com/download/sofmer/sofmer_tc_Recommandations.pdf . No article enabled recommendation above the “expert opinion” level to be derived. The literature review and the expert opinions provided information on the protagonists involved in evaluations, the practical settings in which evaluation occurs, both for semiological data collection (narrative, description, observation of behaviours) and for the use of specific, standardised behavioural scales, and implementation procedures.
3.1
Who should perform the evaluation? (Recommendations R10 to R16)
Multidisciplinary evaluations are strongly recommended, incorporating the opinions of the different persons involved: professionals implicated in care provision, the family circle, and above all the patient himself or herself. The first part of the evaluation is a narrative, and a description of behaviours: direct observation, according to place and circumstance. This is provided either by the physician, the caregiver or the psychologist, or by an informal caregiver, a person close, a professional helper, or a professional from a health or “medico-social” facility. Self-assessment by the patient is essential, but it needs to be completed by an evaluation from another source (hetero-evaluation) so as to obtain several viewpoints, in particular in cases where the patient is not fully aware of his/her symptoms (anosognosia). It is useful to identify a person close who knew the patient before the TBI was incurred so as to assess changes in behaviour over time. This hetero-evaluation by a carer or person close should be performed following agreement from the person concerned, insofar as this is possible. The second part of the evaluation consists in objectifying the particular difficulties. Although certain scales are designed for use by all health professionals, it is preferable for them to be administered and interpreted by a psychologist with training in neuropsychiatry (R16). Indeed, the interweaving of behavioural disturbances with cognitive and psychological disorders warrants refined, cautious evaluation, requiring information obtained in the assessment of cognitive disorders to be crossed with information on the affective and emotional status .
3.2
How should the evaluation be performed? (Recommendations R17 to R20 and R22 to R29)
Ideally, the evaluation of behavioural changes should be backed up by the use of specific tools, because these behavioural changes are multiform, and combine cognitive, emotional and even motivational factors. A validated tool is not an end in itself, it rather provides a reliable, thorough methodological framework for the evaluation. It completes interviews and observation. Nevertheless, the wide diversity and heterogeneity of the tools available ( Appendices A, B and C ) in terms of items, mode of administration and information source, amounts to a serious limitation to objective behavioural evaluation: collecting information from a patient does not yield the same information as collecting information from the family or a clinician. The setting in which data is collected also affects the results.
3.2.1
In situations of emergency or crisis
The degree of urgency and the risks incurred by the individual or a third party should be evaluated (R20). A standardised evaluation is obviously difficult at a time of crisis, but it can be postponed. For suicide risk, Beck’s suicide ideation scale can be helpful. For violent acts, reference can be made to recommendation 39 of the HAS “psychiatric dangerousness” document , which recommends first asking the individual if he/she has been the victim of violence, which then makes it easier to ask questions such as “do you sometimes get really angry, in what circumstances, with whom, and do you later regret it?”. The Violence Screening Checklist can also be used.
3.2.2
Outside emergency or crisis situations
The high frequency of behavioural disorders in the aftermath of TBI means that there should be systematic screening for symptoms at all the different stages in care provision (R22) . In the first encounter, in particular in “medico-social” settings, before any decision, it is important to gather information on the brain trauma: duration and depth of coma (Glasgow score), type of brain lesion, care itinerary, family background, professional consequences, financial compensation, damages awarded. Physical therapy teams who provided care for the patient should be contacted if relevant. The EBIS measure enables the chain of circumstances and the lesions to be mapped out, and an inventory of the deficits and their evolution. In case of doubt, an EEG should be organised, since certain complex partial seizures can have a clastic or de-inhibited content.
In all events, the disturbances need to be accurately characterised according to how long-standing they are, their frequency, their severity and the impact on daily living and the close circle. The impact can be interpreted in terms of limitations in activities, restrictions in participation, according to the International Classification of Functioning, Disability and Health (ICF) . New evaluation tools are being developed in this area . The nature of the behavioural disturbances also needs to be documented, and as far as possible the mechanisms involved – implication of prefrontal lesions or damage to the limbic system? seizure? psychological suffering? failure to understand the situation and/or loss of control as a result of cognitive disorders? It is a mistake to imagine there might be a single cause, and only accurate identification of all the phenomena potentially involved can enable adequate care provision . The setting in which the behavioural disturbances arose should be identified. The factors favouring the appearances of the behavioural disturbances and maintaining them should be sought (predisposition, triggering, in particular addictions, personality factors), as well as the attitudes among informal and professional caregivers that are the best suited to preventing or reducing these behaviours and to reducing their consequences.
The most frequent and/or obvious behavioural symptoms should be sought, as should less obvious and less intrusive symptoms. This requires clear distinction among the different symptoms, for instance using the symptom lists provided in certain measures. It is also essential to detect interactions, since disorders appearing to be mental, mood-related, behavioural, psycho-affective, psycho-social or environmental are in fact all interwoven . If there has not been a recent assessment of cognitive disturbances, this needs to be updated, because it is an important key to understanding behaviour in cases of brain injury. Professional and family carers for their part cannot readily perceive the links between cognitive disturbances and behavioural disturbances. Finally, the repercussions on helpers (in particular psychological) should be systematically assessed, for instance using the Zarit Scale .
To sum up, the evaluation should be implemented on several different levels: emotional, cognitive (neuropsychological assessment and contextualised assessment) and relational. To take account of environmental factors, the natural course of the disturbances, and the response to the different therapies deployed, evaluations should be reiterated.
The evaluation should thus be:
- •
multi-source;
- •
multidimensional;
- •
contextualised;
- •
reiterated over time.
Once collected, the information is stored and circulated for subsequent use. In the health sector, the data is integrated into a care plan. It can be exchanged among professionals in charge of the patient to define and tailor a care strategy, in compliance with confidentiality and patient information requirements. The information should be collated in a file to facilitate its use, traceability, and transmission (with appropriate confidentiality procedures).
In institutions or in the medico-social sector, the coordinating physician and the psychologist have an important role in centralising and circulating data, in particular: biographical elements, the care itinerary, the type of disturbance observed (frequency, seriousness, evolution) and the way it was catered for, triggering or aggravating factors, factors for improvement, and repercussions (other residents, professionals, caregivers). In family environments, there needs to be collaboration among referring physician and hospital specialists who are well-acquainted with the patient. Access to care provision and medical information requires exchanges among all people involved, for instance via the use of a follow-up booklet.
3.3
Standardised evaluations and Behavioural Scales (recommendations R21 and R 30 to R33).
Alongside the clinical evaluations by the care provision team and the patient interview, behavioural scales enable a standardisation of the data, a quantification of symptoms (intensity or severity), a follow-up of evolution over time and measurement of the effects of treatment. These are useful in clinical practice, and also in clinical research.
The measurement scales should comply with metric requirements: validity, reliability; sensitivity and specificity. The adaptation of English-language scales raises the problem of their translation and validation into French. Training in their administration and interpretation is often required, and the measures chosen need to be suited to the persons using them and their particular training: nursing staff, doctors, psychologists, occupational therapists, psycho-motor specialists, physiotherapists, social workers, helpers, etc. There are for example scales designed specifically for use by nursing staff. The NOSIE (Nurses Observation Scale for Inpatient Evaluation) thus assesses a set of 30 behaviours and their respective frequencies. It yields different sub-scores: social skills, social interests, individual hygiene, irritability, psychotic state, intellectual deficit, depression. It has been used in certain therapeutic trials. Contextualised or “ecological” evaluations are generally performed by occupational therapists, and complement neuropsychological assessments. They are implemented in the patient’s usual surroundings, and repeated. They are strongly recommended during the preparation for discharge from medium-term care, from institutions and from UEROS sessions . They have the disadvantage of being time-consuming, and not really reproducible. Finally, there are hetero-evaluation scales completed by the main caregiver (ideally as a complement to a self-evaluation by the patient).
In practical terms, the following groups of evaluations can be distinguished:
- •
synthesis documents gathering all the clinical data on the TBI and its consequences and that comprise a section devoted to behaviour ( Appendix A );
- •
generic scales aiming to document the whole behavioural repertoire of the patient ( Appendix B );
- •
specific scales, centred on a symptom or a particular aspect of behaviour, grouped (in the annexes) according to a clinical classification in these recommendations: alterations in behaviour manifested by excess, alterations manifested by deficit, and alterations relating to affective states, anxiety, psychosis and suicide attempt ( Appendix C ).
Although not exhaustive, the data in the appendix sum up the most widely used tools quoted in the articles on care for behavioural disturbances. Complementary information, in particular data on the validation, can be consulted in the full text of the recommendations on SOFMER website: ( http://www.sofmer.com/index.php?pageID=7f60c6306b154c6ee67dfefbf8a58ec9#reco2013 ).
4
Discussion
The recommendations presented above generally have only a modest level of proof, most often of the “expert opinion” type, which reflects the heterogeneity of the literature and the complexity of the subject. The complexity is related in particular to the difficulty of perfectly standardising the conditions in which information is collected. Indeed, how is it possible to use one and the same instrument in contexts that are extremely complex, for instance a first consultation motivated by these disturbances, often asked for by the close circle, and where the practitioner listens to the wife, the parents, or the staff members from an institution providing a wealth of details on the behavioural changes, while the person concerned does not have much to say. Or how can the peaceful setting of a systematic admission assessment in a care facility or institution be set against the general emotion and tense atmosphere following a recent bout of rage, yelling, smashed objects, self-harm and harm to others? It is easy to see that the diversity of these situations, the degree of awareness of the disturbances and the participation of the person concerned will have an impact on the evaluation. At the same time, the evaluation, to be of any use and remain objective, needs to reach beyond a subjective description charged with emotion. To avoid these various pitfalls, the evaluation should be multidisciplinary and multi-source. This approach, in addition to improving the reliability of the evaluation, has the great advantage of implicating the patient is his/her evaluation as well as the patient’s close circle. The involvement of the patient in the evaluation, an ethical requirement, will at least contribute to creating awareness if not to processes of inhibition and control of impulsiveness. Finally, this approach enables viewpoints to be crossed, distances to be set, and a better analysis of the processes at play so as to discuss the issues within the team.
The working group also underlined the central role of scales measuring behavioural disturbances, which, despite their usefulness, present several limitations. These limitations, rather than discouraging the use of these scales, should encourage caution among users. Indeed, first of all, the metric properties, in particular sensitivity, construct validity and reproducibility, need to be quite clearly established, since they determine the usefulness of a scale. This information, in particular that concerning sensitivity and specificity, makes it possible to set the boundaries for the meaningfulness of the scores obtained. Secondly, one of the main principles underpinning the use of measurement scales is that the instrument is not an end in itself, but is used with a particular objective in mind. Thus the choice of the instrument and the interpretation of the results obtained will differ according to whether the aim is to arrive at a diagnosis (presence/absence of a behavioural disorder) or the clarification of a situation that appears difficult for the persons concerned (patient, caregiver, professional). It is important not to over-interpret or under-interpret the severity of a disturbance, and indeed to avoid concluding to the presence of a disorder when there is none (false positive). The existence of a disturbance should not be confused with the complaint voiced by the informer, whether this person is the informal caregiver, the healthcare professional, or the patient. The complaint should be heeded, but independently from any consideration of authenticity of the behavioural disorder, since it will contribute to appropriate orientation. With the same concern for methodological caution, it should be underlined that there are few adequately validated French versions of the instruments. There are still numerous scales developed in English that have been merely translated, without any specific validation in a French-speaking population. This means that instruments developed simultaneously in English and French, such as the Revised Neurobehavioural Scale are of particular interest, as are instruments developed in several languages in line with European recommendations, such as the EBIS measure . If the sensitivity to change of an instrument is not known, or if it is poor, the instrument cannot be used to assess the efficacy of a pharmacological treatment or any other type of intervention. Finally, we can underline the potential lack of specificity to brain-injury pathologies of the measures that are available, and hence the potential lack of relevance of the criteria and items, since most of the instruments have been “imported” directly from the psychiatric domain. These tools therefore have a mainly descriptive value, but they are not very useful when used in a vacuum, that is to say without a precise aim and without confrontation with other sources of information. This last aspect points to the need to train people using these scales. If a neuropsychologist does not administer the scale, the opinion of a neuropsychologist or of a clinician experienced in brain trauma is strongly recommended to interpret and give meaning to the results, which means also integrating the results of a recent neuropsychological assessment. Thus it is not helpful to recommend one scale rather than another, since evaluation needs vary widely according to context. The most reliable procedure consists in first of all using a generic scale, providing global information in all areas of behaviour. This scale will enable the first working hypotheses to be set, after which they will be tested by complementing the first evaluation with one or several scales specific to the most marked symptoms, and with other sources of information, thus integrating the viewpoints of the different protagonists.
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