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Apart from medical and economic consequences Quality of Life (QoL) after TBI ... This review of 16 studies considering outcome and QoL after TBI confirms that ...
Restorative Neurology and Neuroscience 14 (1999) 93–102

Quality of Life after traumatic brain injury: A systematic review of the literature Eva Berger1,*, Friederike Leven2, Nicola Pirente1, Bertil Bouillon3 and Edmund Neugebauer1 1

Biochem. and Exptl. Division, II. Dept. of Surgery, University of Cologne 2 Neurosurgical Clinical, Cologne-Merheim 3 II. Department of Surgery, University of Cologne

Received 3 September 1998; revised 15 September 1998; accepted 4 October 1998

Abstract In modern industrial countries traumatic brain injury (TBI) is a common sequel after different kinds of accidents especially amongst young male adults. Apart from medical and economic consequences Quality of Life (QoL) after TBI becomes increasingly important in outcome assessment. Besides the classical domains of QoL (physical, psychological, social) cognitive impairments are playing an important role especially for TBI patients. In 1991 the Meran conference set important standards and formulated basic guidelines for defining and measuring QoL in surgery, but a special index for TBI patients has not yet been developed. Instead, QoL research concentrates on physical, medical, psychological and social problems only. Based on the existing QoL concept extended by the cognitive aspect it was the aim of this review to give an overview about the recent QoL research in TBI patients since 1991. Sixteen studies in TBI patients mentioning at least 2 domains of QoL (physical, psychological, social, cognitive) were published since 1991. Five of them considered all 4 domains of QoL. All studies except of one dealt with psychological and social problems. Only half of the studies considered cognitive impairments. Four studies tried to define QoL, but none of them included the cognitive component. There was no consensus regarding the definition and the choice of measurement instrument for QoL after TBI. This review of 16 studies considering outcome and QoL after TBI confirms that a homogenous and clinically relevant QoL concept for this group of patients is still missing. Further research in TBI patients should include all 4 domains of QoL. Keywords: Brain injuries, quality of life, head injury

1. Introduction In western countries the most common cause for traumatic brain injuries (TBI) are traffic accidents, followed by working accidents and an increasing number of accidents * Correspondence to: E. Berger, Biochem. & Exptl. Division, II. Dept. of Surgery, University of Cologne, Ostmerheimer Str. 200, D-51109 Cologne, Germany; Phone: +49-221-98957-13; Fax: +49-221-893864; E-mail: [email protected] 0922-6028/99/$8.00 © 1999, IOS Press

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during leisure activities (sports etc.). Most of the TBI are considered to be mild or moderate (Glasgow Coma Scale (GCS) on admission ≥ 9). TBI is characterized to be severe if the patients’ initial GCS is ≤ 9 [37]. In the United States there are more than 1 to 1,8 million hospital admissions with TBI every year, one third of the victims are children and young adults [35,39,40,41]. Between 70.000 and 90.000 of them are left with permanent alterations in their life with physical, cognitive or behavioural disabili-

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ties [41]. 500.000 patients sustain brain injury serious enough to make a hospital treatment necessary. 30–50 % of these injuries can be categorized as moderate to severe and 5–10 % of the survivors suffer from neurological sequelae [28]. In Germany the incidence for all types of TBI is 3.2 per 1000 inhabitants per year, 9 % suffer from severe head injuries [38]. Economically, the impact of TBI is enormous. Estimates of the costs of TBI in the United States range from 4 to 15 billion dollars annually. From a sociopolitical point of view, especially regarding the time off work, it is important to consider that most of the TBI patients are young men (ages of 15 to 24), usually with a low socioeconomic status and having a history of “risk-taking” [28]. Especially patients with severe TBI suffer from cognitive, behavioural, emotional and social problems. As shown by Gainotti [10], these problem areas may not be considered as isolated factors, because there are interdependences between them. He proved that the TBI patients’ emotional and psychosocial status is profoundly influenced by the following three main factors: 1. Neurological disturbances, e.g. by disruption of specific neural mechanismen (limbic system) that subserve the regulation and control of emotional/social behaviour. 2. Emotional/personal attidude towards disability (full awareness of the handicap and the personal consequences as for the quality of life) 3. Social consequences of the functional impairment on the network (relationships, social activities). In mild TBI changes in these domains are much less specific, less serious and generally the patients recover more quickly. On the other hand patients sustaining mild or moderate TBI often experience problems with memory, attention or judgment. Routinely they receive less formal rehabilitation services than those with more severe head injury though these kinds of problems could be subtle and long lasting ones [28]. Therefore, not only for economic reasons, survival of TBI patients is important but has to be completed by an assessment of how they survive, which means to assess the degree and sequelae of residual impairment in daily life. Consequently, it is necessary to investigate the Quality of Life (QoL) of TBI patients. This is not possible without understanding the concept of Quality of Life measurement developed in the recent years. 2. Quality of Life: Concept and Measurement During the past 20–25 years a new development in medicine (especially amongst surgeons) was perceptible. The physical dysfunction of a patient (“disease”) is no longer rated by biomedical parameters (e.g. mortality, complications, laboratory data) alone. Psychosocial and patient-oriented subjective aspects of the patient himself are increasingly integrated in the evaluation of the patient’s state or condition. It was getting more and more important “how the patient feels and not what the doctor thinks the patient ‘should’ feel based on technical information alone” [30].

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TABLE 1. General guidelines for the choice of a QoL-instrument in surgery [29] 1.

Identify the nature of the clinical problem and/or research question

2.

Survey the literature related to the clinical problem and choose the appropriate study design

3.

Specify the QoL dimensions to be assessed in patients

4.

Review the available instruments regarding – extent of coverage – practicability – psychometric properties – cultural specifity – analysis aspects

Since 1975 these subjective and so-called “weak” parameters have been developed as an integral part for evaluation of therapy in clinical, especially surgical research. “Quality of Life” is a relevant endpoint in surgery [36]. Researchers agree that QoL is a multidimensional construct comprising physical/medical, psychological and social factors [e.g. 1,30]. In order to follow current standards in terms of validity, reliability, and responsiveness, methodologists began to develop methods for measuring QoL for different groups of surgical patients. But these instruments did not prove to be practicable enough in clinical reality, being too long, too difficult to score, and too hard to interpret quickly. Therefore they were not widely used. Because of these discrepancies between developers (methodologists) and users (surgeons), an international group of surgeons, policy makers and methodologists met in 1991 for a consensus development conference on “QoL Assessment in Surgery” in Meran, Italy. The “Meran Consensus Conference” set standards for measuring QoL in surgery with the aim of optimizing surgical treatment [30]. The following areas were addressed: – methods (i.e. statistical approach): validity, reliability, sensitivity, – practicability: short and easy self-report – questionnaires, – concentration on special areas: chronical disease (e.g. cancer). For the choice of a QoL instrument in a given situation, general guidelines were presented (Table 1). Up to now there are no guidelines concerning the question, when to assess QoL. The advices vary from 2 weeks to 3 months for the first postoperative assessment. But there is no doubt that the assessment should be done by the patient himself or a close relative. Patient-based QoL measurement using interviews and self-report-questionnaires is appropiate and instruments are available [1]. Furthermore, it was demonstrated that the correlation between patients’ self-report assessment and estimation by medical professionals is weak [8]. An increasing clinical importance of QoL and the possibility of its broad applicability could be shown by a great number of publications concerning very different areas in surgerysuch as gynecological and male genito-urinary tract cancers, plastic and reconstructive surgery [e.g. 1,38,33,36]. Even in the beginning of QoL research it has been empha-

E. Berger et al. / Restorative Neurology and Neuroscience 14 (1999)

TABLE 2. QoL domains and their contents QOL-domains Explanation physical

Neurological impairments, e.g. hemiparesis, also regarding problems with functional independence and mobility in daily life

psychological

Problems regarding personality and behavioral alterations, affective disorders, e.g. anxiety, depression, aggressivity

social

Problems regarding the social network, e.g. family, friends, vocational status

cognitive

Neuropsychological impairments, e.g. memory, attention, concentration deficits etc.

TABLE 3. Evaluation of QoL-instruments for brain injured patients. Assessment of different aspects was rated as not satisfactory (X), party satisfactory (XX) or completely satisfactory (XXX). – = aspect is not assessed. LQ-aspects after Traumatic Brain Injury Instrument

Emotion, PsychoCognitive Personality social

Independence

Mobility

GOS

XXX

XXX



XXX



Barthel

XXX

XXX







DRS

XXX

XXX

X

XXX



FIM

XXX

XXX

X

XXX

XX

EEGOS

XXX

XXX

XX

XXX

XX

sized that additional dimensions of QoL might be interesting when studying specific groups of patients [1]. Since now the group of the TBI patients with their specific problems was not considered in the scope of this concept. 3. Quality of Life and TBI An instrument for the assessment of QoL after TBI has to consider the specific characteristics of TBI patients. It is hardly possible to apply the existing concept of QoL without any adaptations. For different reasons the surgical QoL concept – based on self-report-assessment of the physical, psychological and social aspects – is not sufficient for the special situation of TBI patients. First of all, traumatic brain injury has other and, to some extent, more severe sequelae for the patient and his social environment than other injuries. Examples are changes in personality or cognitive problems. A Quality of Life index for TBI patients should include the cognitive component (i.e. neuropsychological and neuropsychiatric problems as a forth domain; see Table 2). Second it might turn out to be a problem, that QoL usually is assessed by self-report-questionniares, which require a certain ability of critical self-reflection. In many cases this is impaired after TBI. Furthermore, the patients could be unable to answer any kind of question about their own situation. In order not to include only the less severely injured patients and to get an objective view of the situation, a QoL in-

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dex should also include items to be answered by the patient’s family or health care professionals. In summary, comparable concepts and instruments for TBI patients are still missing. Although a homogenuous concept is missing there are a number of well established and highly valide instruments for the measurement of certain aspects confounding QoL especially for TBI patients. Evaluating the outcome of TBI patients the Glasgow Outcome Scale (GOS) [15] e.g., is one of the most common and pratical assessment instrument, but it is too global and insensitive in recording changes during the recovery process. Furthermore there are the “Sickness Impact Profile” (SIP) created by Bergner et al. [3], the “Functional Independence Measure, FIM” [12], the “Barthel Index” [24] and the “Disability Rating Scale” [32]. Retaining the advantages of the existing GOS a new outcome measure instrument has been developed, the “Edinburgh Extended Glasgow Outcome Scale” (EEGOS) [14]. It allows comparison of patterns of recovery in different areas of function (behavioural, cognitive and physical). Nevertheless none of all the instruments mentioned aboved is based on an integrative QoL concept. Each of these scales focuses to one special aspect, ignoring the other ones, that may interfere. The EEGOS seem to be one of the most satisfactory assessment instrument for patients after TBI (see Table 3). 4. Aim Based on the concept of QoL and its increasing clinical importance it is the aim of this survey to give an overview about the current status of QoL specifically for TBI patients. The review concentrates on the most recent literature from 1991-1998 published since the Meran Conference took place. The following questions will be discussed: – Which QoL dimensions are assessed by the studies? – Do the researchers agree according to the importance of the dimensions? – Has an integrative optimal measure of QoL already been found? 5. Methods The present paper is an empirical literature review based on a computerized literature search using the key words “head injury”, “brain injury” and “Quality of Life” in the databases PSYNDEX, MEDLINE and PSYCLIT. The literature search was completed by a hand search of all references. A study had to fulfill the following criteria to be included in this review: 1. The target population had to be TBI patients suffering from any type and cause of trauma and any degree of severity (mild, moderate, severe) 2. The study has to take into consideration at least 2 domains of QoL (social, psychological, social, cognitive) 3. The study has to be published in 1991 or later.

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31 2 years after trauma

19 Not indicated

106 5-8 years after Severe TB trauma lesions posttraumatic coma ≥ 6h

Dikmen 1993 [6]

Lubusko 1994 [23]

Schalen 1994 [34]

39 2years and 9 months to 24 years after trauma

78 1–2 years after trauma

Melamed 1992 [27]

Leach 1994 [22]

42 3 years after trauma

Annoni 1991 [2]

GCS: 5 mild, 6 moderate, 28 severe

severe unconscious for at least 5 min. (GCS)

moderate to severe head injury; GCS 3-8 in 24 h post injury and/or at least 2 weeks of PTA

blunt head injury; unconsciousness > 24h

intracranial lesions (severe), neuroradiologically visible.

severe

25 3 years after injury

Severity

Kaplan 1991 [19]

Times of assessment

36 10–30 months severe after injury GCS ≤ 8

N

Kaplan 1990 [18]

Study

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

  

psych. cogn. phys. social ψ

TABLE 4. Summary evaluation of studies on Quality of Life after TBI

none

none

none

none

none

none

none

none

Definition of QoL Instruments

perceived social support on the one hand and better psychsocial and vocational outcome on the other hand

 Ψ The more social support, the less emotional distress and the better the vocational outcome  Ψ Significant relation between high family cohesion and

Results



more from psychological and social impairments

Structured Interview Guide for the Hamilton Depression Rating Scale (SIGH-D), Family Crisis oriented personal evaluation scales (F-Copes), Social Support Questionnaire short Form, revised (SSQ-SR)





Ψ 73% mildly depressed Ψ use of coping and problem solving strategies by the family more effective in prevention of depression than social support perceived by the patient



Hopkins Symptom Check-List (HSCL-25), Social 40-50% suffering from coordination disturbances, speech Adjustment Scale-Self report (SAS-SR), Compre- diorders and cranial nerve deficits hensive Psychological Rating Scale (CPRS), Bond Ψ 28% psychiatric symptoms (mainly somatization, anxiety, Outcome Scale depression) 40% social problems (interpersonal relations, leisure activities) Ψ up to 71% hostile feelings, failing memory and fatiguability (reported by relatives)



Multidimensional Health Locus of Control Scale Ψ the worse the post injury employment status, the lower the (MHLC), Revised Internal-External Scale (RIES), levels of internal locus of control (LOC) and the more feelings Beck Hopelessness Scale (BHS), Blishen Quantita-of hopelessness. tive Social Economy Index

Standardized interview, neurological examination, Mini Mental State (MMS), Glasgow Outcome Scale (GOS), Kurtzke Neurological Disability Scale

 73% memory disorder  71% Concentration disorder ψ 71% mood disorder; 53% neurological impairments  45% returned to work;  53% considered their social life unsatisfactory Interview, 40 items out of Acceptance of Disease-   Ψ 55,2% functioned satisfactorily, Scale (AD) by Linkowski, Rehabilitation Need and  49% returned to work, 19% under protected conditions. Status Scale (RNSS)  Ψ -the more working conditions were alike before injury, the higher was the level of disability acceptance  Ψ - return to work is more probable without psychiatric dysfunction Sickness Impact Profile (SIP), Head Injury Symp-  46% returned to work tom Checklist, Function Status Index, Structured  18% financially independent Interview  one third physical disability affecting ambulation  Ψ fatigue decreases over time, memory problems remain constantly, irritability increases Ψ in the beginning, patients suffer more from physical, later

Portland Adaptability Inventory (PAI), Structured Family Interview, Family Environment Scale (FES)

16 Personality Factors Inventory (16 PF), Social Support Questionnaire (SSQ)

Domains

96 E. Berger et al. / Restorative Neurology and Neuroscience 14 (1999)

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55 3 months and 1 year after trauma

51 3-7 years after Major TBI trauma (ICD-9)

Hawkins 1996 [13]

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van Balen 1996 [39]

65 1–24 years after Moderate to trauma severe (GCS, Duration of Coma)

Junqué 1997 [16]

Webb 1995 [41]

116 12 and 24 month after trauma

traumatic brain injury (no further differenciation)

Woischneck 34 3–8 years after Severe/ 1997 [42] trauma moderate (initial GCS 3–12)

3 2–8 years after not indicated trauma

Emilien 1996 [7]

severe AIS ≥ 3 GCS

severe duration of unconscioness 1-180 days (average 35 days)

19 5 years after trauma

severe

Severity

Kaitaro 1995 [17]

Times of assessment

54 2 years after trauma

N

Finset 1994 [9]

Study

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

  

psych. cogn. phys. social ψ

TABLE 4. Summary evaluation of studies on Quality of Life after TBI

  

Results

Sunnaas Index of ADL, Norwegian Interdiscipli57,4% decreased social network nary Rating Scale (NIRS), 54-Item-Questionnaire Ψ Consistent relationship between severity of functional assessing subjective symptoms, Stuctured inter- sequelae (low functional status and poor emotional adjustment) view on postinjury social adjustment, Social net- and social network (little interaction and support) work index (SNI)

Instruments

Structured interview, Barthel´s Index (ADL), Sickness Impact Profile (SIP), Employability Rating Scale, Wimbledon Self-Report Scale

 

 Ψ 45% behavioral or emotional disability (self-reported) Ψ 10% mood disorders  55% cognitive disabilities (mainly memory disorders) Neuropsychological assessment, interview, MMPI Ψ  Significant emotional and cognitive disturbances even eight years after injury Family questionnaire for TBI patients´ relatives  89% physical changes (created by the author)  90% cognitive changes (memory, attention, concentration, language)  Ψ 89% behavioral and affective changes

Ψ 36% behavioral symptoms of emotional distress (especially somatic complaints and anxiety)

none

FIM, Life Satisfaction Index (LSI-A)

improved QoL

  Employment is the strongest contributor of improved QoL, Ψ  psychosocial variables (reduced self blame, family support)

Neuropsychological functions like attention, concentration, QoL= multidimen- Neuropsychological assessment, self defined sional variable QOL-score focusing on private and social activity verbal learning and orientation were significantely reduced. composed of per- (PA/SA) late social status and behavior related with initial clinical findsonal, professional ings and financial aspects

QoL= emotional and social role functioning, daily living and recreational activities (McSweeney 1982)

none

none

of everyday living

50% motor disabilities, QoL=Life in gen- Testbattery assessing different aspects of intellieral, ADL, Hob- gence and memory, Barthel Index, Pulses Profile, Ψ problems in reading and writing and personality changes bies, Contacts with questionnaire concerning current life situation and most often reported by the patients friends, family life changes in personality, assessment of neurological Ψ tendency to get angry or irritated more often and memory sex-life status, 6 graded scale assessing QOL in different problems most often reported by the relatives areas 68% lived with their families more than 50% returned to work

     QoL= Functional Independence Measure (FIM), modi-  90% living at home after 1 year functioning across fied version of Rehabilitation Outcome Question-  82% independent on supervision multiple domains naire  25% returned to work

none

Definition of QoL

Domains

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6. Results A total of 16 studies in TBI patients considering least 2 aspects of QoL were identified. Almost the half of the studies were carried out in the United States or Canada (7/16) and in different European countries (8/16). One study came from Israel. Most of the studies examined patients suffering from severe head injury (10/16). Four studies considered patients with different levels of injury (moderate, severe, mild), and two studies did not report the level of severity. Half of the studies assessed the severity of the TBI by using the GCS (7/16) and/or indices and duration of coma (6/16). Diagnostic criteria like “Abbreviated Injury Scale” (AIS), WHO’s Manual of the International Statistical Classification of Diseases, Injuries and Causes of Death, Ninth Revision (ICD-9-CM) and Computer Tomography (CT-scan) were used by one study each. The number of patients varied from 3 to 116. One case study examined only 3 head injured patients. The period of assessment varied from 3 months (1/16) to 24 years (2/16). Half of the studies (9/16) evaluate the patients’ state 1 to 3 years after trauma, 5 studies 3 to 5 years after trauma. In 5 studies the patients’ condition was assessed only once (the time point of assessment varied from 2 to 5 years after trauma) whereas in the rest of the studies it was assessed several times in order to enable a comparison. 7. The four domains of Quality of Life after TBI – an overview As mentioned above, Quality of Life assessment in TBI patients should consider at least four dimensions: the classical ones (physical, psychological, and social) plus the cognitive domain (Table 2). Table 4 gives a summary of all included studies and to what extent the the different aspects of QoL had been considered. The following sections describe these four aspects and the amount of attention which is paid to each one in the different studies. Since there are close relationships between the domains it was not possible to make a complete distinction between them in some cases. 8. The physical domain The somatic or physical domain in TBI patients mainly consists of neurological impairments that result from the head injury. Half of the studies (8/16) dealt with physical neurological impairments such as low functional status after head injury. Most of these studies examined patients with severe head injury (6/8). In the study of Dikmen et al. [6] 30 % of 31 TBI patients suffered from continuing physical disability affecting ambulation. In total, 68 % of the patients were completely independent in everyday life. It was shown, that TBI patients initially feel more severely impaired by physical dysfunctions such as pareses than by psychological or social problems. During the

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following two years the somatic symptoms decrease, while the psychological and social problems remain and become the most impairing factor in the patients’ life. Schalen et al. [34] examined a group of 106 severely brain injured patients 5–8 years after trauma and found 4050 % of these patients suffering from coordination disturbances. More than 40 % had speech disorders and cranial nerve deficits. Furthermore, expressive dyshasia and deficient articulation was observed in one quarter of patients. The correlation between these neuropsychological impairments and QoL reported by the relatives was rather weak. Kaitaro et al. [17] examined the long-term disabilities of 19 closed head injured patients and their effects on everyday life of patients and their relatives 5 years after trauma. The injured patients and their relatives reported changes in motor and cognitive functions and personality or emotional reactions. The motor disabilities (problems of mobility) of the subjects were not presented as the most significant problem, because there have been possibilities to minimize the physical handicaps by using technical help and rehabilitation. Pain Although headaches occur as the most prominent symptom of patients after TBI only a few studies consider this problem. The study of van Balen et al. [39] noted that 41 % of their patients suffered from headache. Is was the complaint reported most frequently by TBI patients and their relatives. The diagnosis of “postconcussive syndrome” or “postconcussional disorder” summarizes a group of symptoms that regularly are caused by severe as well as minor head injury. Some of them are headache, fatigue, dizziness, blurred vision, memory and concentration deficits, sensitivity to light and noise, irritability, anxiety and sleeping disorder [7]. 9. Psychological domain Psychological problems like affective disorders or alterations in personality are subject of each study except for one (15/16) in this review. This domain mostly was found in combination with the discussion of social problems after TBI (14/16). Especially anxiety and depression are commonly observed after TBI. Various studies found the rate of depression to be in between 6 and 77 %, and anxiety is diagnosed in 18–60 % after TBI. [7]. Leach et al. [22], for example, found 73 % of their patients to suffer from mild depressive symptoms. From former research Emilien and Waltregny [7] draw the conclusion that psychopathological alterations after severe and even minor TBI do not only persist, but can even increase over time. In one of the cases they observed, that even eight years after trauma the level of irritability, anxiety, depression and aggressive behaviour was still clinically rele-

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vant [7]. Furthermore, there is a correlation between psychopathological alterations and a lowered cognitive state. In the study of van Balen et al. [39] 45 % of the TBI patients and 56 % of the family members reported at least one behavioral or emotional disability. 10 % of the patients and 15% of the family members mentioned mood disorders. Melamed et al. [27] proved psychological disorders after TBI to be a more valid predictor for return to work than physical dysfunction. Most of the patients who suffered from affective, behavioral or personality disorders did not return to work, even although their cognitive and physical state would have allowed them to do so. Schalen et al. [34] tried to evaluate psychosocial outcome in 106 severely brain injured patients 5–8 years after trauma. 28 % had psychiatric symptoms (diagnosed by using a self-report symptom inventory). The seven symptoms most frequent mentioned comprise a mixture of somatization, anxiety and depression. Kaitaro [17] reported that most of the injured patients (11/16) thought that their personality has changed to the worse. This was confirmed by the relatives. The relatives furthermore described the patients to be more dependent, irritable, exitable, lifeless and childish. The patients described themselves to be more sensitive and slight. 10. Social domain All studies except one investigated social problems after TBI. This kind of problem applied on the one side to interpersonal relationship (family, friends) as well as to vocational status (work/job). In many studies resumption of work is regarded as the most important indicator of normal QoL after TBI. Between 40 and 66 % of TBI patients can go back to work after rehabilitation [27]. Dikmen et al. [6] investigated a group of 31 patients with moderate to severe head injuries. 33 % of them were employed again one year after trauma and 46 % two years after trauma. Only one person of this group went back to the same job he had before. 29 of 45 patients examined by Annoni et al. [2] were employed before their head injury. Three years later, 45 % of them had gone back to their former job, 34 % were employed under special (i.e. less strenuous) conditions, and 6 % were employed in special institutions for handicaped people. 13 % were not able to be reemployed after their injury. Melamed et al. [27] examined 78 patients suffering from TBI with an unconsciousness of at least 24 hours. Regarding their vocational status between one and two years after trauma they showed that 49 % of the patients were employed, 19 % of them under special conditions such as shorter working time, less strenuous work etc. In some of the cases the reason for unemployment was not physical dysfunction – as expected by the authors – but psychopathological sequelae of the trauma such as behavioral or affective deficits and personality alterations. Although their somatic and cognitive state would have allowed employment, patients with this

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kind of psychiatric deficits in most cases had not been employed again. Moreover, the authors found a significant correlation between the vocational status and the patient’s subjective opinion about the success of his rehabilitation regarding somatic, emotional, economic, vocational and family aspects. The more the posttraumatic vocational status was alike the pretraumatic one, the more successful the rehabilitation was considered by the patient. Additionally, the vocational status was found to have a significant influence on the patient’s acceptance of his/her impairments. In an exploratory study of Lubusko et al. [23] cognitive beliefs of 19 TBI patients were investigated and their association to posttraumatic employment status were assessed. The results indicated that negative cognitive beliefs (low internal and high external locus of control) may be related to a decreased post-injury employment status. The data confirm the results of preceeding studies indicating that low level employment and umemployment are linked with external attributions, personal/individual feeling of unability to control life events and depression. Furthermore it was found, that increased hopelessness was associated with reduced employment status (modern helplessness theory says that there is a relationship between traumatic/stressfull life events, feeling of helplessness and overall psychological distress). In addition to the vocational status Annoni et al. [2] asked the patients about their common satisfaction with their social life. Three years after injury, 53 % of the 45 patients considered their social life as unsatisfactory. On the other hand, none of the 28 married patients had been divorced in the meantime. In two studies Kaplan [18,19] examined the relationship between social support, emotional distress and vocational outcome after serious brain injury. In both studies it could be confirmed that the patient’s level of emotional distress was related to social support and vocational outcome. Higher levels of family cohesion and availability of social support were related to better psychosocial and vocational outcome three years after injury. Leach et al. [22] found social support by the family to be less important for the prevention of depressive symptoms than the effective use of problem solving and behavioral coping strategies by the family. Finset et al. [9] assessed the social interaction and support, subjective complaints and functional status of 54 patients 2 years after trauma. 57 % of the patients reported, that the social network markedly changed to the worse, whereas only 13 % experienced an improvement. Even 2 years after trauma low functional status and poor emotional adjustment were found to be related to little interaction and support. Van Balen et al. [39] interviewed TBI patients and their families about disabilities concerning social behaviour. 25 % of the patients reported disabilities of that kind; the item most frequently indicated was “reduced social activity”. Even 38 % of the TBI patient’s family members had noticed social disabilities such as diminished social skills and irritability against others.

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11. Cognitive domain Especially the cognitive domain of QoL is important after TBI. This aspect includes disabilities in mental speed, orientation, perception, concentration, language, memory, and executive functions. Half of the studies (8/16) dealt with the cognitive sequelae of a head injury. Three years after the trauma Annoni et al. [2] found 78 % of 45 TBI patients to suffer from neuropsychological impairments (memory, concentration). Examining 31 TBI patients one month, one year, and two years after trauma Dikmen et al. [6] showed that different neuropsychological symptoms behave in different ways: fatigue tends to decrease over time, memory deficits persist, while irritability increases within the time of two years after the injury. Kaitaro [17] noted, that the patients themselves most often reported problems of memory, difficulties in reading, calculating or writing. In contrary, the relatives mentioned the patient’s tendency to get angry or irritated more often. Van Balen et al. [39] asked TBI patients and their families whether there were cognitive impairments to be noticed: 55 % of the patients and even 65 % of the family members reported at least one cognitive disability, with impairments in everyday memory functioning being indicated most frequently. In the study of Schalen et al. [34] the mental state of brain injured patients was assessed by using the Bond’s Outcome Scale. Hostile feelings, failing memory and worrying over trifles were the most prevalent symptoms reported by the patients. It was found that the extent of mental handicap has a more profound effect on QoL (reported by the relatives) on the contrary to the weak effect of neurological/neurophysiological deficits on QoL. In the study of Woischneck et al. [42] 34 TBI patients underwent neuropsychological testing 3–8 years after injury. The authors found a uniform pattern of disturbances in their patients, consisting of significantly reduced attention, concentration, verbal and visual learning and orientation.

Three aspects at maximum have been considered by 5 studies. All studies except of one analyzed the physical, psychological and social state after TBI. The study of van Balen [39] included the cognitive aspect instead of physical problems. One of these studies tried to define QoL as “functioning across multiple domains of everyday living” [13]. Webb [41] dealt with QoL for TBI patients 2 years after trauma and noted that there was no clear and agreed definition of QoL in current literature. Instead of a “self-made” definition the author only mentioned the following aspects of measuring QoL: “Adaptive functioning” and “Measuring of satisfaction”. This should represent “several factors regarding different aspects of person’s life”. The rest of the studies (6/16) dealt with 2 aspects, mostly by discussing psychological and social problems, 2 of them considered cognitive problems after TBI [7,42]. Referring to measurement instruments assessing 2 or more aspects of QoL all the presented studies chose different kinds of self-report questionnaires and interviews shown in table 4. The “Functional Independence Measure” (FIM), “Barthel Index” and “Sickness Impact Profile” (SIP) are the only instruments used twice. Webb [41] and Hawkins [13], e.g., were using the FIM scores assessing problems in the aspects “self-care, locomotion, communication and social/cognition” and Hawkins additionnally modified the version of the “Rehabilitation Outcome Questionnaire” by Haffey and Johnston [11]. This questionnaire consists of 40 items assessing return to productive activity, home independence, social activities and the presence of emotional and behavioral problems. In two other studies the “Sickness Impact Profile” (SIP) was applied which is composed of a physical and a psychosocial scale assessing changes in daily activities as a function of health [6,39]. All studies dealing with QoL after TBI chose very heterogenous instruments (Table 5). Woischneck [42]

TABLE 5. Studies using an explicit definition of QoL

12. Summary Evaluation Study

After regarding the different domains of QoL after TBI mentioned above we found 5 studies that considered all four aspects. One of these studies [17] discussed all domains of QoL in detail, but gave a specific definition comprising mainly different aspects of social life only such as “activities of daily living, family life, contacts with friends, hobbies, marriage and sex-life”. One group of investigators [16] based their study on an already established definition related to McSweeney [26], who defined QoL as “emotional and social role functioning, daily living and recreational activities”. Three studies discussed all the 4 QoL-aspects without any definition of QoL [2,6,34]. Schalen [34] e.g. tried to assess QoL by using one single question without any further definition or elaboration.

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Domains of Definition of QoL QoL after TBI

Measurement Instruments

Hawkins et al., 1996 [13]

psychologi- functioning across FIM, modified vercal, social, multiple domains of sion of ROQ physical every day living

Kaitaro et al., 1995 [17]

all 4 aspects life in general, ADL, hobbies, social contacts (friends/family), sex life

Barthels Index, Pulses Profile, selfcreated questionnaires

Junque, Bruna & all 4 aspects emotional and social Family questionnaire Mataro, 1997 [16] role functioning, esp. for the patients’ daily living and rec- relatives (selfreational activities created) Woischneck et al., cognitive, 1997 social [42]

multidim. variable: self-defined QoL personal, profesquestionnaires (prisional, financial vate/social activity) aspects

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indicated to measure QoL by self-defined scores focusing on “Private Activities” and “Social Activities” by a self defined questionnaire (7 questions). In the study of Kaitaro [17] the subjects were asked to estimate QoL in different areas of life using a six-graded scale assessing different mainly social life aspects. QoL, activities of daily living and the social situation was gathered by self-reportquestionnaires. The author did not use an already existing instrument for measurement. The study of Junque, Bruna and Mataro [16] defined QoL related to the definition of McSweeney [26] and used selfcreated “Family questionnaires” for the patients’ relatives. The patients themselves were not interviewed. The purpose of the study of Hawkins [13] was to assess the QoL of TBI patients by measuring multiple outcomes after discharge. In structured telephone interviews the patients were asked whether they returned to work, home independences, social activities and if they suffered from emotional and behavioral problems (“Rehabilitation Outcome Questionnaire”). Functional impairments such as cognitive and physical problems have been assessed by the “Functional Independence Measure” (FIM). 13. Discussion It was the aim of this survey to give an overview about the development of QoL research (definition, measurement, and application) since 1991 (“Meran Consensus Conference”) regarding the special characteristics of TBI patients. The outcome of these mainly young male persons turned out to be hardly homogenously assessed although this kind of research is urgently needed for planning of clinical treatment and rehabilitation. In surgical research QoL comprises the evaluation of several components of the patients’ personal situation, namely the physical, psychological and social state [21]. Regarding the special situation of TBI patients this definition has to be extended by the cognitive aspect referring to symptoms like neuropsychological deficits (memory and concentration disturbances etc.). In all, 16 studies were identified from different European countries, the United States, Canada, and Israel, which fulfilled the inclusion criteria. It is remarkable, that psychological and social problems after TBI are subject of each study but one in this review. So we can summarize, that the psychosocial outcome seems to have the highest degree of importance among outcome variables. The researchers of these studies showed a consensus according to the importance of the psychological and social outcome variables after TBI. On the other hand it is remarkable too – but in a negative way – that only half of all studies (8/16) considered cognitive problems after TBI although the neuropsychological impairments have been proven to be one of the main problems after TBI. In none of the studies assessing cognitive state except one – QoL was defined in any way. Woischneck et al. [42] on the other hand assessed neuropsychological impair-

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ments, but defined QoL as a multidimensional variable “composed of personal, professional and financial aspects” not including the cognitive state. This means that the authors found the neuropsychological state important to assess, but did not think that it is an aspect affecting QoL. Moreover, there are only 4 studies making an effort to give a definition of QoL at all. None of those studies included the cognitive aspect while the importance of the psychosocial aspects is emphasized by each of these authors. Apart from a missing clear-cut statement of what QoL actually embraces and missing uniformity of the definitions of QoL described above, we neither found a consensus due to the measurement instruments nor to the timing of a definite individual evaluation of the patients’ state after trauma. First of all the studies agreed according to the methods of assessment using self-report – questionniares and interview. This corresponds with methods of measuring QoL usually applied to different patient groups and demonstrates the practicability of these methods for brain injured patients either. Furthermore the time points of assessment as an important factor for evaluating rehabilitation results [20] varied enormously. We found a range from 3 month to 24 years, and only half of the studies assessed the patients’ state 1 to 3 years after trauma. This review of 16 studies referring to the outcome of TBI patients since 1991 confirms the observation, that an homogenous and clinically relevant concept for measuring is still missing. 14. Conclusion In our overview we presented some facts from the recent research on the outcome after TBI. These facts give an impression of how severe and heterogenous the problems of TBI patients are. They confirm the need for validated instruments for further research on QoL after TBI and the intercorrelations between the different factors of QoL. These tools would have to fulfill the following criteria: – in addition to the factors considered in the surgical QoL definition, the neuropsychological aspect would have to be part of a TBI-QoL index. – in order to get information about the group of patients who are not able to answer the questions themselves due to their severity of injuries or their lack of ability to self-reflexion the index would have to include a validated part to be answered by family members and health care professionals. – the construction of the index would have to allow for the evaluation of the patient’s own view of his trauma sequelae, for example, which kind of deficit the patient feels most impaired by himself. A consensus conference with all relevant directions included is urgently needed to evaluate an instrument for measuring QoL after TBI. A nationwide joint project supported by the federal government in Germany can help to optimize this concept.

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