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JOURNAL OF NEUROTRAUMA 27:11671185 (July 2010)

Mary Ann Liebert, Inc.


DOI: 10.1089/neu.2009.1076

Quality of Life after Brain Injury (QOLIBRI):


Scale Development and Metric Properties
Nicole von Steinbuchel,1 Lindsay Wilson,2 Henning Gibbons,1 Graeme Hawthorne,3 Stefan Hofer,4
Silke Schmidt,5 Monika Bullinger,6 Andrew Maas,7 Edmund Neugebauer,8 Jane Powell,9
Klaus von Wild,10 George Zitnay,11 Wilbert Bakx,12 Anne-Lise Christensen,13 Sanna Koskinen,14
Jaana Sarajuuri,14 Rita Formisano,15 Nadine Sasse,1 Jean-Luc Truelle,16 and the QOLIBRI Task Force

Abstract

The consequences of traumatic brain injury (TBI) for health-related quality of life (HRQoL) are poorly investigated,
and a TBI-specific instrument has not previously been available. The cross-cultural development of a new measure
to assess HRQoL after TBI is described here. An international TBI Task Force derived a conceptual model from
previous work, constructed an initial item bank of 148 items, and then reduced the item set through two successive
multicenter validation studies. The first study, with eight language versions of the QOLIBRI, recruited 1528
participants with TBI, and the second with six language versions, recruited 921 participants. The data from 795
participants from the second study who had complete Glasgow Coma Scale (GCS) and Glasgow Outcome Scale
(GOS) data were used to finalize the instrument. The final version of the QOLIBRI consists of 37 items in six scales
(see Appendix). Satisfaction is assessed in the areas of Cognition, Self, Daily Life and Autonomy, and Social
Relationships, and feeling bothered by Emotions, and Physical Problems. The QOLIBRI scales meet standard
psychometric criteria (internal consistency, a 0.750.89, test-retest reliability, rtt 0.780.85). Test-retest reliability
(rtt 0.680.87) as well as internal consistency (a 0.810.91) were also good in a subgroup of participants with
lower cognitive performance. Although there is one strong HRQoL factor, a six-scale structure explaining additional variance was validated by exploratory and confirmatory factor analyses, and with Rasch modeling. The
QOLIBRI is a new cross-culturally developed instrument for assessing HRQoL after TBI that fulfills standard
psychometric criteria. It is potentially useful for clinicians and researchers conducting clinical trials, for assessing
the impact of rehabilitation or other interventions, and for carrying out epidemiological surveys.
Key words: multi-national study; outcome instrument; quality of life; traumatic brain injury

Introduction

he ultimate goal of health care and rehabilitation following traumatic brain injury (TBI) is to return a person

to full health, or to enable him or her to maintain as high a


health-related quality of life (HRQoL) as possible (Berger et al.,
1999; Koskinen, 1998). TBI can result in lifelong physical,
cognitive, emotional, and behavioral impairments, and

Department of Medical Psychology and Medical Sociology, Georg-August-University, Goettingen, Germany.


Department of Psychology, University of Stirling, Stirling, United Kingdom.
Department of Psychiatry, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Melbourne, Australia.
4
Department of Medical Psychology, Medical University Innsbruck, Innsbruck, Austria.
5
Department of Health and Prevention, Institute for Psychology, Ernst-Moritz-Arndt University of Greifswald, Greifswald, Germany.
6
Department of Medical Psychology, University Hospital Eppendorf, Hamburg, Germany.
7
Department of Neurosurgery, University Hospital Antwerp, Antwerp, Belgium.
8
IFOM, Private University of Witten/Herdecke, Koln, Germany.
9
Goldsmiths College, Department of Psychology, London, United Kingdom.
10
Professor of Neurosurgery, Medical Faculty Westphalian Wilhelms University, Muenster, Germany.
11
Association Martha Jefferson Hospital, Charlottesville, Virginia.
12
Hoensbroeck Rehabilitation Centre, Hoensbroeck and Maastricht University, Maastricht, The Netherlands.
13
Centre for Rehabilitation of Brain Injury and Centre for Cognition and Memory, University of Copenhagen, Copenhagen, Denmark.
14
Kapyla Rehabilitation Centre, Helsinki, Finland.
15
IRCCS, Rehabilitation Hospital, Santa Lucia Foundation, Rome, Italy.
16
Service de Medicine physique et readaption, C.H.U. Raymond-Poincare, Garches, France.
2
3

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CHEL ET AL.
VON STEINBU

1168
activity limitations and participation restrictions, all of which
affect the persons self-image and ability to cope (Dikmen
et al., 2003; von Steinbuchel et al., 2005a). These consequences
may have a major impact upon the persons quality of life
(QoL), as defined by the World Health Organization QoL
Group (1998, p. 153): . . . an individuals perception of their
position in life in the context of the culture and value systems
in which they live and in relation to their goals, expectations,
standards and concerns . . . The WHO definition views QoL
as a broad concept, which is largely consistent with Corrigan
and Bogners (2004) analysis of critical dimensions in rehabilitation research, emphasizing activities, social integration,
and participation as key outcomes.
The concept of HRQoL refers to the specific effects of health
on well-being and functioning (Guyatt et al., 1989; von
Steinbuchel, 1995). HRQoL represents a persons perspective
on his or her subjective health condition, functioning, and
well-being in the domains of physical, psychological (emotional and cognitive), social, and daily life (von Steinbuchel
et al., 2005a). The person is viewed as the best expert on his or
her QoL, and the measurement of this multidimensional
concept is usually accomplished via self-rating; only in cases
of severe cognitive impairment is observer rating preferred
(Bullinger and von Steinbuchel, 2001).
Since English (1904), outcomes of TBI, however, have been
traditionally assessed by functional indicators, such as disability recovery (Arango-Lasprilla et al., 2007; Jennett and
Bond, 1975; Wilson et al., 1998), health status (Corrigan and
Bogner, 2004; Findler et al., 2001; Klonoff et al.,1986; LippertGruner et al., 2007; McCarthy et al., 2006), return to work or
productivity (Klonoff et al., 2006; McCrimmon and Oddy,
2006; Shames et al., 2007), psychosocial and social functioning
(Arango-Lasprilla et al., 2007; Schonberger et al., 2006; Tomberg et al., 2005), and community participation (Cattelani
et al., 2008; Corrigan and Bogner, 2004; Mascialino et al., 2009;
Powell et al., 1998). While these outcomes are certainly related
to HRQoL in TBI, they do not incorporate the perspective of
subjective well-being of HRQoL (von Steinbuchel et al.,
2005a). The National Institutes of Health (NIH) consensus
development panel on rehabilitation of persons with TBI
(1999) therefore recommended the use of generic HRQoL
measures.
The most frequently administered generic health status
measures in TBI have been the SF-36 Health Survey (Andelic
et al., 2009; Callahan et al., 2005; Findler et al., 2001; Hawthorne et al., 2009; MacKenzie et al., 2002; Ware et al., 1995,
1993), and the Sickness Impact Profile (Corrigan et al., 1998;
Klonoff et al., 1986; Pagulayan et al., 2008, 2006). Both of these
instruments show lower subjectively rated health in persons
with TBI than in healthy persons. The measurement of life
satisfaction in TBIa component of HRQoLhas been most
commonly performed with the Satisfaction with Life Scale
(Diener et al., 1985), which shows improvements in satisfaction with life after treatment (Dahlberg et al., 2007), and an
association of life satisfaction with healthy and productive
lifestyles (Pierce and Hanks, 2006). Importantly, these generic
HRQoL instruments allow for general comparative studies
between different populations.
In comparison, disease- or condition-specific HRQoL instruments are assumed to be more sensitive to specific health
conditions, and therefore allow the collection of more focused
and precise information. It is only recently that HRQoL has

been recognized as a potentially important outcome variable


in TBI (Neugebauer et al., 2002). In TBI, dimensions such as
cognition, self-perception, and self-esteem are likely to be
particularly important (von Steinbuchel et al., 2005a). Although the negative impact of TBI on HRQoL has been
reported as described above, positive factors, such as adaptation to a new life after TBI, have not been evaluated (Dijkers,
2004). This emphasizes the need for complementary assessment of positive aspects of HRQoL in persons after TBI (von
Steinbuchel et al., 2005b).
Riemsma and associates (2001) and von Steinbuchel and
colleagues (2005b) pointed out potentially important validity
problems with generic health status and HRQoL instruments
when administered to patients with cognitive impairment.
That is, in subgroups of persons after TBI this assessment may
be invalid, or at least it has unknown validity and reliability,
as the patients may differ in the domains (such as cognition,
self perception, and daily life activities) important to them.
Critically, in severely impaired persons, awareness of cognitive and other deficits may be reduced. Measuring a construct
such as HRQOL in persons with cognitive deficits via the
cognitive domain (self-rated questionnaires) represents a
major methodological challenge. One solution is to develop
an appropriate patient-based disease-specific questionnaire,
and to check whether it has satisfactory psychometric properties in more severely impaired individuals.
As a result of the recommendations of the Trauma Consensus Group (TCG; Neugebauer et al., 2002), a new TBIspecific HRQoL measure, the Quality of Life after Brain Injury
instrument in TBI (QOLIBRI) was developed (Fig. 1). This
article reports the construction and validation of the questionnaire. Additional background on the development of the
QOLIBRI can be found in articles by von Steinbuchel and
associates (2005a, 2005b) and Truelle and colleagues (2008).
Aspects of the validity of the QOLIBRI are described in the
other article in this issue by von Steinbuchel and colleagues
(2010). The QOLIBRI shows systematic relationships with the
GOSE, the SF-36, and the HADS, and with other clinical
variables that indicate good validity.
Methods
Initial development of the QOLIBRI
The conceptual model for the QOLIBRI was developed on
the basis of a TBI literature review and consensus meetings of
an international consortium (later referred to as the QOLIBRI
Task Force; hereafter the Group). The Group reviewed
measures that could be used to assess subjective experience
after TBI for appropriateness, relevance, applicability, and
psychometric quality. The following instruments were selected: the QOLBI (Quality of Life of the Traumatic Brain Injured; Tazopoulou et al., 2005), the Profile de la Qualite de la
Vie Subjective (Gerin et al., 1989), the BICRO-39 (Brain Injury
Community Rehabilitation Outcome Scale; Powell et al.,
1998), and the EBIQ (European Brain Injury Questionnaire;
Teasdale et al., 1997). The items were pooled into an item bank
of 148 items and translated into English if necessary. The
initial review revealed substantial communality in the areas
and items covered by the different instruments. Fifteen QOLIBRI Task Force members, including neurosurgeons, neurologists, neuropsychologists, psychologists, and other health
care professionals working in neuro-rehabilitation, were in-

DEVELOPMENT AND METRIC PROPERTIES OF QOLIBRI

1169

1999: International consensus group on quality of life after TBI recommends


development of a disease-specific HRQoL measure1

2002: Review of existing measures in TBI and generation of a bank of 148


items.

2003: Translation, harmonization, patient involvement, and pilot testing.


Selection of 56 items, assigned on content grounds to 10 scales.2

20042006: First international validation study with 1528 TBI participants.


Analysis and reduction of the initial 56 items based on psychometric criteria
to a 49-item questionnaire consisting of seven scales.3

20062008: Second international validation study with 921 TBI participants.

2009: Final QOLIBRI instrument consisting of 37 items in six scales, and a


six-item screening instrument for overall quality of life.

FIG. 1. Stages in the development of the QOLIBRI (HRQoL, health-related quality of life; TBI, traumatic brain injury;
QOLIBRI, Quality of Life After Brain Injury scale). 1Bullinger et al., 2002. 2Von Steinbuchel et al., 2005. 3Truelle et al., 2008.

volved in the process of selecting 56 of these items (for details


see von Steinbuchel et al. 2005b), and allocated them to seven
HRQoL domains: physical condition, thinking activities,
feelings and emotions, functioning in daily life, relationships
and social/leisure activities, current situation, and future
prospects. The items were either formulated as satisfaction
items (How satisfied are you with . . .) or as bothered items
(How bothered are you with...). The items were self-rated
on a five-point scale (Not at all/Slightly/Moderately/
Quite/Very). Additional items and open-ended questions
were included to assess the relevance of the items to the
participants.
The item bank was translated into Danish, Dutch, Finnish,
French, German, Italian, and Spanish, using linguistic validation guidelines (Acquadro et al., 1996). Guidelines for
cognitive debriefing and language harmonization were followed (von Steinbuchel et al., 2002). The draft instrument was
subsequently administered to 1528 persons after TBI across
the centers collaborating in the QOLIBRI Task Force. The
participants were recruited predominantly as convenience
samples in a cross-sectional study.
The aim was to enroll 250 patients per language. Inclusion
and exclusion criteria were the same as in the final validation
study (see below). Four languages reached this goal (Finnish,
French, German, and Italian). Psychometric testing of the
items was performed on these cohorts with classical and
modern test theory methods. The other languages underwent
confirmatory analyses. Following the analyses of 1050 cases

with the Glasgow Outcome ScaleExtended (GOSE; Wilson


et al., 1998) and the Glasgow Coma Scale (GCS; Teasdale and
Jennett 1974), and subsequent item reduction and refinement
of scores, an interim version of the QOLIBRI instrument with
49 items was constructed. We considered it essential to retest,
revalidate, and finalize this preliminary instrument in clinical
settings.
Development and validation of the final QOLIBRI
Psychometric properties of the preliminary 49-item QOLIBRI version were investigated in a cross-sectional sample
designed to cover a heterogeneous range of head injury outcomes. Nine countries with six languages participated in the
second validation study: Australia (n 64), Belgium (n 33),
Finland (n 171), France (n 135), Germany (n 172), Italy
(n 150), the Netherlands (n 118), the U.K. (n 41), and the
USA (n 25). Most countries/centers recruited convenience
samples from rehabilitation facilities. Australia and Germany
randomly sampled outpatients of hospital registries as participants. The inclusion criteria were: a minimum age of 15
years at time of injury, time since trauma between 3 months
and 15 years, diagnosis of TBI according to ICD-10, and informed consent. Exclusion criteria were: a recorded GOSE
score < 3, a spinal cord injury, the presence of a significant
current or pre-injury psychiatric condition or ongoing severe
addiction, a diagnosed terminal illness, and inability to understand, cooperate, and answer questions in the respective

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language. Ethics clearance was obtained by each of the participating centers.
In this second study we aimed to recruit 120150 participants per language. Patients were stratified by clinical severity of TBI as assessed by the GCS. Test-retest reliability was
investigated in a subset of at least 30 participants per language
by second administration of the questionnaire after a 2-week
interval.
The questionnaires were administered in one of four
modes: by self-report (mail), self-report (participant present at
the clinic), face-to-face interview, or administration over the
telephone.
Measures
The preliminary QOLIBRI version for this second validation study consisted of 49 items, 43 of which were arranged in
seven scales, with the remaining six items composed as an
overall scale for use as an independent screening instrument
(von Steinbuchel et al., in prep.). Four scales assessed satisfaction with Cognition (7 items), Emotion and self-perception (8), Activities of daily living (ADLs) and
Autonomy (8), and Social relationships (6). Three scales
assessed feeling bothered by Negative feelings (5), Restrictions and problems (4), and Physical condition (4).
Responses were recorded on a 5-point scale: Not at all/
Slightly/ Moderately/ Quite/ Very. The bothered items
had an additional (filter) category: Does not apply. During
scoring, the endorsements of this option were coded as Not
at all. Scale scores were presented on a percentage scale
(0100).
Demographic characteristics of participants were collected,
including country, language, gender, age, relationship status,
educational attainment, labor force participation, and social
participation.
Subjective health status was assessed through administration of the SF-36 Health Survey (version 1; Ware et al., 1993;
one country used version 2 with subsequently transformed
data; Ware and Kosinski, 1996; Ware, 2000). Two summary
scales are reported, the Physical Component Summary (PCS)
and the Mental Component Summary (MCS).
Current health conditions were assessed through a list of 28
common health conditions (adapted from the WHOQoL
project; von Steinbuchel et al., 2006). Clinical data extracted
from participants medical records included the date of injury,
cause of injury, site of major head injury, and the worst GCS
score in the first 24 h, classified into minor (1315), moderate
(912) and severe (38; Rimel et al., 1982). The presence of
comorbid health conditions was also recorded (epilepsy,
hemiparesis, vision and hearing problems, extracerebral injuries, communication, attention and memory dysfunction,
executive function, and affective and behavioral disorders), as
were details of participation in rehabilitation and the use of
anticonvulsive, psychotropic, and recreational drugs.
Depression and anxiety were assessed with the Hospital
Anxiety and Depression (HADS) scale (Zigmond and Snaith,
1983), which was available in all languages. A score of > 8 was
taken to indicate probable morbidity (Olsson et al., 2005).
Cognitive status was measured in a subsample of participants using either the Mini Mental State Examination (MMSE;
Folstein et al., 1975), or the Telephone Interview for Cognitive
Status (TICS; Brandt et al., 1988), which was translated into

the particular languages. Cut-offs on the TICS and MMSE of


32/33 and 27/28, respectively, were used to define groups
with low cognitive performance and normal performance.
These cut-offs have been found to be equivalent in an elderly
sample, and scores in the lower range are taken as indicating
borderline or impaired performance, while the upper range is
regarded as normal (Brandt and Folstein, 2003). In a younger
group, borderline scores are more likely to be indicative of
impairment (Crum et al., 1993).
Disability recovery was assessed by the GOSE (Wilson
et al., 1998). Users were trained to administer the GOSE by
following the manual published by Wilson and colleagues
(1998). The GOSE classification was Severe Disability (34),
Moderate Disability (56), and Good Recovery (78).
Statistical approaches
To finalize the QOLIBRI scales, metric properties were examined (a) on the item level, and (b) on the scale level, with
respect to internal consistency, test-retest reliability, and factor structure.
(a) Item level. We first checked whether responses to
items were distributed over the whole range. For item frequency analysis we used the endorsement index devised by
the WHOQOL group (1998). Distributions were checked for
frequency problems to determine whether any two adjacent
response categories had a sum of less than 10% of the total
number of responses, and did so for at least half of the language versions. Floor and/or ceiling effects (>60% of cases at
the maximum or the minimum of the scale) were also checked.
Skewness is common in the responses to clinical scales. For
example, many people will tend to report satisfactory to good
HRQoL on items in a scale, while a very few others may report
extremely poor quality of life. Extreme skewness can, however, create problems for analysis using correlation, reducing
both the probability that a scale will show strong relationships
with other measures, and its reliability (or the precision of
measurement) of a scale. Skewness (conventionally, items
with skewness > 1 are considered for removal) was checked;
however, some moderately skewed items (1.01.3) were included, to capture a range of impairment (Schmidt et al., 2006).
(b) Scale level. The internal consistency of the scales,
which reflects their reliability, was assessed using Cronbachs
a, and the fit of individual items to each scale was examined
by correlating the item with the total for the other items in the
scale. Cronbachs a and corrected item-total correlations
(CITCs) were calculated. It is conventionally accepted that
CITCs should be over 0.4 (WHOQOL group, 1998). An a of
0.70 is often regarded as the lower boundary of acceptability
for measures used in group comparisons (Moosbrugger and
Kelava, 2007), and over 0.90 for clinical application to individuals (Bland and Altman, 1997).
Test-retest reliability is one of the most important measures
of reliability for questionnaires. The test-retest reliability of the
QOLIBRI scales was assessed using the intra-class correlation
coefficient (ICC), calculated between the scale means on two
occasions (retested on average 14 days after initial testing).
The conventional interpretation of the ICC is that values of
0.400.75 are fair to good, and values over 0.75 are excellent
(Fleiss, 1986).

DEVELOPMENT AND METRIC PROPERTIES OF QOLIBRI


Table 1. Demographic and Clinical Characteristics
of the Study Population with Traumatic
Brain Injury (n 795)
Frequency (%)
Language

Gender
Age (years)

Employment status
Relationship status

Living arrangements
Glasgow Coma Scale
score (1st 24 h worst)

Major lesion

Years since injury

Number of comorbid
health conditions

Self-reported health
status

Dutch
English
Finnish
French
German
Italian
Male
Female
1730
3144
4568
Employed full-time
Single
Partnered
Past partnered
Independent
Supported
Severe: 38

99
97
157
148
155
139
573
222
271
247
277
170
302
351
90
420
320
464

(12%)
(12%)
(20%)
(19%)
(19%)
(17%)
(72%)
(28%)
(34%)
(31%)
(35%)
(23%)
(41%)
(47%)
(12%)
(57%)
(43%)
(58%)

Moderate: 912
Mild: 1315
None
Focal
Diffuse
<1 year
1 to <2 years
2 to <4 years
4 to 18 years
03

76
255
117
418
250
93
102
203
394
315

(10%)
(32%)
(15%)
(53%)
(32%)
(12%)
(13%)
(26%)
(50%)
(41%)

46
7 or more
Healthy

225 (29%)
236 (30%)
530 (72%)

Unhealthy
Glasgow Outcome
Severe disability
ScaleExtended score
Moderate disability
Good recovery

203 (28%)
143 (18%)
433 (54%)
219 (28%)

1171
sponses for all items were in the expected order. Winsteps
produces two fit statistics: infit weights responses of people
whose performance is close to the item value, while outfit is
sensitive to outlying scores (Bond and Fox, 2007). Deviation of
infit from expectation is generally regarded as more important for measurement than outfit deviation. For large sample
sizes the mean square is preferred to the Z statistic as a
measure of fit, and satisfactory fit is indicated by values between 0.7 and 1.3 (Smith et al., 2008). Values > 1.3 indicate
lack of item fit with the unidimensional model, while values < 0.7 suggest items are over-fitting or redundant.
To study whether the structure of the questionnaire (specifically the division into separate scales) was justified we
used factor analysis. The dimensionality of the final version
was examined using principal component analysis (PCA).
PCA using both a forced one-factor solution and a six-factor
solution that resulted when Kaisers criterion (eigenvalues > 1) was applied, and oblique rotation (promax method
with the assumption of correlated scales) was performed.
Finally we studied the structure of the questionnaire using
confirmatory factor analysis (CFA; using structural equation
modeling [SEM] in AMOS 8.0), an approach that allows various statistics for overall fit to be calculated. Good fit indicates
that the assumed grouping of items into scales adequately
reflects the empirical patterns of relationships between items.
Within CFA the observed variables corresponded to the individual items of the QOLIBRI, and the latent variables to the
factors that represent the six QOLIBRI subscales. The existence of substantial intercorrelations between the factors, in
turn, suggested the existence of a second-order latent variable
representing general HRQoL. This type of confirmatory factor
analysis is common within HRQoL research, with HRQoL as
a higher-order construct, conceptually reflecting the multidimensionality of the construct, and the various underlying
factors (with substantial covariance) representing specific dimensions. The analysis was restricted to complete cases after
imputing missing values as described below (n 787). Maximum likelihood was applied for parameter estimation in
CFA analysis. Selected indices (CFI, RMSEA, and chi-square
statistics) were observed to evaluate the overall fit of the data
to the final model of the QOLIBRI. Interpretation of fit statistics was carried out along the cut-off criteria presented by
Hu and Bentler (1999).
Results

In addition to correlating adequately with its own scale, it is


also important that an item does not correlate similarly with
other scales. Statistics comparable to the Multitrait Analysis
Program (MAP; Hays et al., 1988) were calculated. The MAP
criterion for a definite scaling problem is a corrected itemhome scale correlation that is > 2 SEs below the correlation of
the item with another scale. A probable scaling problem is
indicated by a corrected item-home scale correlation within 2
SEs of the correlation of the item with another scale (Hays
et al., 1988).
Item response theory approaches are now widely advocated as a test of fundamental measurement for assessing the
fit of items to scales. Rasch analysis was carried out using
Winsteps 3.66. The data were examined to ensure that items
were suitable for Rasch analysis. All categories had 10 or more
responses, and no items in the analysis were very skewed
(Bond and Fox, 2007). Furthermore the average category re-

Descriptives
A total of 921 participants were enrolled. There were 126
cases with missing GCS, which were excluded from subsequent analysis. In the remaining 795 cases, some data were
missing to varying degrees. For demographics concerning
gender and age 100% of the data were present, and for living
arrangements, employment status, and relationship status
93% were present. In the clinical data 100% were present for
GCS and GOSE, for major lesion location and years since injury 99%, 98% for numbers of comorbid health conditions,
and 92% for self-reported health situation.
There were less than 5% missing responses for single QOLIBRI items (e.g., participation in work, 4.4%). HADS anxiety and depression scores were present for 99% and SF-36
scores for 96% of the sample. For the QOLIBRI, means were
calculated for each scale, and prorated if up to 33% of

1172

Social relationships

Daily life
and autonomy

Self

Cognition

Scale

Affection towards
others
Family members

Independence
Get out and about
Domestic activities
Basic personal needsa
Run personal finances
Participation in work
Social-leisure activities
In charge of life

Energy
Control emotionsc
Motivation
Self-esteem
Way you look
Achievements
Self-perception
Own future

Concentrate
Express yourself
Remember
Plan and problem solve
Decisions
Find way
Speed of thinking

Item

1.12
1.06

3.95

1.17
1.17
1.16
0.82
1.19
1.39
1.28
1.11

1.17
1.15
1.12
1.22
1.10
1.19
1.09
1.20

1.15
1.04
1.17
1.10
1.11
1.11
1.13

SD

3.85

3.60
3.82
3.77
4.51
3.86
3.27
3.49
3.72

3.17
3.23
3.42
3.36
3.45
3.77
3.38
3.22

3.22
3.53
3.07
3.61
3.57
3.84
3.32

Item descriptives
Mean

0.4

0.4

0.1
0.4
0.1
0.3
0.3
4.4
0.8
0.3

0.4
0.4
0.3
0.4
0.3
0.4
1.0
0.9

0.1
0.5
0.3
0.4
0.4
0.3
0.6

Percent
missing

0.618

0.86

0.535
0.600
0.629
0.697

0.693
0.701
0.651

0.625
(0.580)
0.651
0.739
0.599
0.652
0.780
0.678

0.708
0.681
0.674
0.751
0.673
0.625
0.727

CITC

0.635

Yes

MAP analysis
Frequency
problem

0.80

0.62
0.80
0.71
1.82
0.91
0.32
0.44
0.61

0.21
0.26
0.40
0.40
0.45
0.74
0.44
0.25

0.14
0.39
0.13
0.51
0.53
0.74
0.30

Reliability analysese
Skewness

Table 2. Item Descriptives and Scale Reliability Analyses

0.797

0.792

0.862
0.856
0.850
0.841

0.841
0.840
0.847

0.874
(0.885)
0.871
0.859
0.877
0.871
0.855
0.867

0.875
0.879
0.879
0.870
0.879
0.885
0.873

Alpha if item
removed

< 0.4 on own scale

100%

100%

100%

Scaling
success

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Pain
Epilepsya
Smell/tastea
See/hear
TBI effects

Slowness/clumsy
Drivingb
Legal actionsb
Other injuries

Loneliness
Boredom
Anxiety
Depression
Anger/aggression

3.75
4.83
4.33
4.05
3.19

3.84
4.02
4.09
3.75

4.10
3.87
3.83
3.73
3.78

3.71
3.45
2.96
3.33

1.38
0.69
1.24
1.21
1.31

1.30
1.40
1.36
1.41

1.19
1.27
1.31
1.33
1.31

1.16
1.44
1.48
1.11

0.4
0.6
0.5
0.5
2.5

0.5
0.9
1.3
0.8

0.5
0.5
1.1
0.8
0.5

0.4
0.8
2.5
0.3

0.77
4.32
1.79
1.16
0.21

0.86
1.17
1.25
0.74

1.21
0.86
0.84
0.75
0.78

0.70
0.48
0.05
0.31

Yes
Yes
0.407
0.614

0.490

0.534
(0.421)
(0.394)
0.564

0.613
0.625
0.684
0.689
0.562

0.611
0.598
0.593
0.564

0.748
0.677

0.723

0.706
(0.752)
(0.765)
0.695

0.807
0.803
0.786
0.785
0.821

0.796
0.801
0.803
0.805

Yes
Yes

Item removed on distributional grounds.


Item removed on internal consistency grounds.
c
Item removed on MAP grounds.
d
These two scales were combined into one final scale Physical problems.
e
CITCs and alphas computed with reference to final scale structure (i.e., one Physical problems scale) and item number.
Values in parentheses are for items that entered the analyses of internal consistency but failed criterion CITC (0.40), and are based on interim scales different from the final scales.
CITC, corrected item-total correlation; SD, standard deviation; TBI, traumatic brain injury; MAP, Multitrait Analysis Program.

Physical
conditiond

Restrictions
and problemsd

Emotions

Friends
Partner
Sex life
Attitudes of others

100%

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Table 3. QOLIBRI Scale Means and Standard Deviations, and Cronbachs a for All Data, and Separately
for Each Language Version and for a Subgroup with Low and High MMSE/TICS Scores
Scale

Mean

SD

All

Dutch

English

Finnish

French

German

Italian

Low MMSE/
TICS

High MMSE/
TICS

Cognition
Self
Daily life
and autonomy
Social relationships
Emotions
Physical problems
QOLIBRI Total

61.26
60.03
66.41

21.77
21.96
22.38

0.89
0.89
0.87

0.89
0.84
0.82

0.92
0.90
0.93

0.92
0.90
0.88

0.83
0.87
0.76

0.91
0.90
0.90

0.84
0.86
0.85

0.91
0.88
0.88

0.91
0.89
0.90

63.65
71.71
67.91
64.58

22.64
24.69
23.47
18.24

0.83
0.83
0.75
0.95

0.74
0.64
0.69
0.94

0.88
0.88
0.80
0.97

0.87
0.83
0.79
0.95

0.77
0.79
0.64
0.92

0.85
0.84
0.83
0.96

0.80
0.85
0.70
0.94

0.84
0.86
0.81
0.95

0.83
0.76
0.76
0.96

MMSE, Mini Mental State Examination; TICS, Telephone Interview for Cognitive Status; QOLIBRI, Quality of Life After Brain Injury.

responses were missing. Missing responses were imputed per


participant by substituting for the missing value the scale
mean rounded to an integer. Means for the SF-36, the HADS,
and the comorbid health conditions list were calculated, using
prorating if up to 33% of responses were missing.
Demographic and clinical characteristics of the final validation study (n 795) are presented in Table 1. Percentages
are given with respect to the number of participants with
complete data. As is typical for a TBI sample, there are a
greater number of men than women. Within the range covered (from 1768 years), three age groups were formed (1730
years, 3140 years, and 4568 years) of almost equal size.
More than half of the sample was severely injured by GCS
criteria, and for half the injury occurred 4 or more years previously. Less than a quarter of the sample was in full-time
employment, and only half was currently in a relationship.
Over half of the sample was living independently, that is, did
not need help for daily life tasks. Over half reported four or
more comorbid health conditions; in contrast only 28% described themselves as being unhealthy at the moment. According to the GOSE, the majority (72%) were disabled by the
consequences of their TBI.
Finalizing the QOLIBRI scales and item set
The final resulting QOLIBRI instrument consists of 37 items
in four satisfaction scales, Cognition (7 items), Self (7

items), Daily Life and Autonomy (7 items), and Social


Relationships (6 items), and two bothered scales, Emotions
(5 items), and Physical Problems (5 items).
Item characteristics
The properties of the 43 preliminary QOLIBRI items (resulting from the initial validation and excluding the overall
scales items) are shown in Table 2. All items except three met
the endorsement criteria (Power et al., 2005), and did so for at
least 50% of the language versions. The exceptions were the
two bothered items epileptic seizures and problems with
smelling/tasting, and an item concerning satisfaction with
the ability to look after basic personal needs. These three
items were removed.
At this point, seven items were left to form a second
bothered scale Physical problems. One item concerning
ongoing legal actions had a CITC (<0.40) with the interim
scale and was excluded. This resulted in CITC dropping below 0.40 for another item pertaining to restrictions with
driving, which was also removed. The resulting five-item
Physical problems scale had satisfactory internal consistency (Cronbachs a 0.75). Finally, a satisfaction item from
the Self scale, satisfied with ability to control emotions,
was excluded. Of the eight initial items in this scale, it had the
lowest CITC (0.58), and MAP analysis revealed several substantial correlations > 0.40 with other scales. For the remain-

Table 4. Test-Retest Intra-class Correlations with 95% Confidence Intervals for All Retested
Participants, and Those with Low Scores on MMSE or TICS (Borderline or Impaired Cognition)
versus Those with Scores in the Normal Range
All
QOLIBRI scale
Cognition
Self
Daily life
and autonomy
Social relationships
Emotions
Physical problems
QOLIBRI total

Low MMSE/TICS

High MMSE/TICS

ICC

Lower
95% CI

Upper
95% CI

ICC

Lower
95% CI

Upper
95% CI

ICC

Lower
95% CI

Upper
95% CI

380
381
379

0.81
0.84
0.83

0.77
0.81
0.80

0.84
0.87
0.86

84
84
84

0.81
0.84
0.85

0.72
0.76
0.77

0.87
0.89
0.90

121
121
121

.80
.85
.82

.72
.80
.75

.85
.90
.87

381
376
343
380

0.79
0.78
0.84
0.91

0.75
0.73
0.81
0.89

0.83
0.81
0.87
0.92

84
82
82
84

0.70
0.68
0.80
0.87

0.58
0.54
0.69
0.80

0.80
0.78
0.87
0.91

121
121
121
121

.80
.69
.88
.90

.72
.58
.83
.86

.86
.77
.91
.93

MMSE, Mini Mental State Examination; TICS, Telephone Interview for Cognitive Status; QOLIBRI, Quality of Life After Brain Injury; CI,
confidence interval; ICC, intra-class correlation.

DEVELOPMENT AND METRIC PROPERTIES OF QOLIBRI


Table 5. Test-Retest Intra-class Correlations
for the Four Languages with Sufficient Numbers
of Retested Participants (n  48)
English
ICC

Finnish

Cognition
Self
Daily life
and autonomy
Social relationships
Emotions
Physical problems
QOLIBRI total

56 0.80 48 0.76 130 .79 119 .84


56 0.83 49 0.83 130 .80 119 .88
56 0.77 49 0.83 128 .80 119 .85

ICC

German

QOLIBRI scale

ICC

French

1175
TICS < 33; n 84) internal consistency was comparable to
persons with normal cognitive status (MMSE > 27 or
TICS > 32; n 121); in the former group, the lowest a was 0.81
for the Physical problems scale, for which it was 0.76 in the
latter group.

ICC
Test-retest reliability

56
54
55
56

0.79
0.76
0.83
0.88

49
49
49
49

0.75 130 .79 119 .77


0.76 128 .79 118 .70
0.79 94 .80 118 .89
0.87 129 .91 119 .90

QOLIBRI, Quality of Life After Brain Injury; ICC, intra-class


correlation.

ing 37 items reliability analysis indicated that all items had


CITCs of greater than 0.40, and the majority had CITCs
greater than 0.60. On the MAP analysis all items correlated
more strongly with their home scale than any other scale, and
scaling success for each of these scales was 100%. Two of the
retained 37 items had skewness indices slightly above 1
(bothered by feelings of loneliness, and problems with
seeing/hearing), but were kept because of their clinical importance, reasonable scale fits, and ability to differentiate
between (strongly impaired) persons in the low HRQoL
range.
Internal consistency
Internal consistency was assessed for each scale, and for
each language version of the QOLIBRI (Table 3). Cronbachs a
ranges from 0.75 (Physical problems) to 0.89 (Cognition
and Self). The individual scales thus fulfill criteria for use in
research studies, and the total QOLIBRI score provides a reliable assessment at the level of the individual with Cronbachs a of 0.95, ranging from 0.92 (French; n 147) to 0.97
(English; n 96).
Individual scale scores exceed a 0.70 for all language
versions except for the Emotions and Physical problems
scales of the Dutch version (a 0.64 and a 0.69, respectively), and the Physical problems scale of the French version
(a 0.64). The results indicate that the QOLIBRI scales generally have good internal consistency. Also, in a subgroup of
persons with low cognitive performance (MMSE < 28 or

Table 4 shows ICCs in the sample of the 381 participants


retested after 2 weeks (27 Dutch, 119 German, 56 English, 49
Finnish, and 126 French cases). The mean age in the group
retested was 36 years (SD 12.5), compared to 40 years
(SD 14.0) in those not retested; 52% of the retested group
had severe injuries, 11% had moderate injuries, and 37% had
minor injuries. For the retested sample as a whole ICCs ranged from 0.78 (Emotions) to 0.85 (Physical Problems),
indicating that all scales show good test-retest reliability. The
reliability of the total score was rtt 0.91. Scores on the MMSE
or TICS were available for 181 participants who were retested.
Participants were divided into those with low performance
(borderline or impaired; n 84) versus those with scores in
the normal range (n 121). ICCs for these two subgroups are
shown in Table 4. In general, most scales showed good reliability in both subgroups. The lowest ICCs were for the Social relationships and Emotions scales, and the values here
are still consistent with good reliability.
Test-retest reliability was good for the four language versions for which sufficient numbers of retested participants
were available (n  48). For the QOLIBRI total score, ICCs
range from 0.87 (Finland) to 0.91 (France; Table 5). Singlescale test-retest reliability is mostly in the range of 0.75 to 0.80.
QOLIBRI scale means on the first and second test are
shown in Table 6; differences between the first and second
assessment reached significance at the .05 level for the Cognition scale and the Physical Problems scale. When the
changes were calculated as effect sizes using Cohens d (Cohen, 1988), none exceeded 0.10, indicating very small differences.
Another approach considering the test-retest reliability of
differences between QOLIBRI scale scores (being rather unrelated to test-retest reliability per se), that is already providing
support for the suggested six-factor structure of the QOLIBRI,
is reported below. For this purpose, for each pair of the six
subscales, differences between subscale scores were computed for test and retest data. Test-retest correlations between
pairwise compared scale differences ranged from 0.55
(SelfEmotions) to 0.75 (EmotionsPhysical). The

Table 6. QOLIBRI Scale Percentage Scores and Standard Deviations for Retested Participants
at the First and Second Test
First assessment

Cognition
Self
Daily life and autonomy
Social relationships
Emotions
Physical problems
QOLIBRI total

Second assessment

Mean %

SD

Mean %

SD

Effect size (Cohens d)

380
381
379
381
376
343
380

63.3
60.5
68.3
64.8
72.2
69.5
65.6

20.5
21.8
21.6
22.6
24.2
22.7
17.8

64.9
60.6
68.6
65.2
73.8
71.6
66.5

21.0
20.5
22.2
21.8
24.5
22.5
18.2

2.22
0.20
0.37
0.47
1.89
3.07
2.09

0.03
0.84
0.71
0.64
0.06
0.02
0.04

0.08
0.00
0.01
0.02
0.07
0.09
0.05

QOLIBRI, Quality of Life After Brain Injury; SD, standard deviation.

CHEL ET AL.
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Table 7. Measures of Item Difficulty and Fit from Rasch Analysis of Each of the QOLIBRI Scales
Item difficulty measure Infit MNSQ Infit Z Outfit MNSQ Outfit Z
Cognition
Find way about
Plan & problem solve
Express yourself
Decisions
Speed of thinking
Concentrate
Remember

0.72
0.30
0.27
0.18
0.27
0.42
0.78

1.20
0.82
1.00
1.06
0.90
0.95
1.06

3.54
3.85
0.11
1.14
2.16
1.07
1.29

1.24
0.80
1.00
1.07
0.90
0.94
1.08

3.75
4.14
0.01
1.36
2.06
1.13
1.52

Achievements
Way you look
Motivation
Self-perception
Self-esteem
Own future
Energy

0.60
0.11
0.08
0.03
0.09
0.28
0.39

1.06
1.19
1.05
0.70
0.82
1.00
1.14

1.18
3.61
1.00
6.69
3.77
0.07
2.79

1.11
1.21
1.04
0.68
0.79
0.98
1.15

1.81
3.84
0.77
7.06
4.23
0.34
2.91

Get out and about


Run personal finances
Domestic activities
In charge of life
Independence
Social and leisure activities
Participation work

0.26
0.24
0.22
0.17
0.08
0.22
0.57

0.83
1.27
0.96
0.85
0.87
1.06
1.15

3.40
4.49
0.76
3.08
2.58
1.13
2.81

0.84
1.33
0.97
0.84
0.87
1.04
1.21

2.96
4.87
0.58
3.10
2.48
0.81
3.50

Family members
Affection to others
Friends
Partner
Attitudes of others
Sex life

0.69
0.49
0.21
0.24
0.34
0.82

0.93
0.90
0.98
1.03
1.10
1.03

1.40
2.03
0.45
0.53
1.90
0.68

0.91
0.88
0.97
1.02
1.10
1.07

1.63
2.25
0.62
0.31
1.98
1.06

Loneliness
Boredom
Anxiety
Anger/aggression
Depression

0.37
0.03
0.06
0.12
0.22

1.04
1.03
0.88
1.21
0.87

0.75
0.63
2.24
3.63
2.43

0.97
1.01
0.86
1.20
0.82

0.42
0.11
2.29
3.11
3.11

See/hear
Slowness/clumsy
Other injuries
Pain
TBI effects

0.15
0.03
0.02
0.4
0.6

0.96
0.92
1.07
1.21
0.85

0.7
1.6
1.4
3.5
3.3

0.92
0.86
1.09
1.25
0.83

1.2
1.9
1.4
3.2
3.6

Self

Daily life and autonomy

Social relationships

Emotions

Physical problems

Items within each scale are ordered by item difficulty (i.e., from most likely to least likely to be endorsed positively).
MNSQ, mean square; QOLIBRI, Quality of Life After Brain Injury; TBI, traumatic brain injury.

averaged test-retest correlations of QOLIBRI scale differences,


as computed based on Fisher-Z-transformed coefficients,
amounted to 0.62, which is an extremely high value given that
differences between measures cannot be as reliable as the
measures themselves. Thus, in a multi-scale approach, the
different scales of the QOLIBRI data reliably assess information related to the different HRQoL domains; clearly, there is
not only error variance beyond the g-factor. However, further
research is needed to determine whether the QOLIBRI can be
used to reliably assess HRQoL profiles at an individual level.
Rasch analyses
Each scale was analyzed in turn using Rasch analysis.
Items within each scale are shown in Table 7 ordered by

item difficulty. Thus, for example, in the Cognition


scale, participants were most likely to express satisfaction
with finding way about, and least likely to be satisfied
with remember. The range covered by items in each scale
was fairly narrow, from 0.59 logits for the Emotion scale
to 1.51 logits for Social relationships, indicating that in
general items were quite similar in their likelihood of being
endorsed positively. It should be borne in mind that item
difficulty is calculated at the middle of the rating categories.
Rasch analysis of individual QOLIBRI scales (Table 7)
showed that infit was in the required range for all items in
each of the scales. Rasch analysis thus confirms that items
have a satisfactory fit with their home scales. Weaker
items are self-perception, with an infit value of 0.7 suggesting a certain amount of redundancy, and run personal

DEVELOPMENT AND METRIC PROPERTIES OF QOLIBRI


finances, with an outfit value of 1.33, which indicates
misfitting outliers in the data.
Rasch analysis was also performed with all items combined
to examine whether QOLIBRI items fit a single unidimensional scale. Item difficulty measures ranged from 0.47 to
0.61 logits. PCA of the residuals showed that the Rasch model
explained 38.2% of the variance, indicating that a unidimensional model explains only a moderate amount of the variance. The infit values indicated that the majority of QOLIBRI
items fitted an overall Rasch dimension. However, there were
five items with infit values of 1.3 or more: partner (in-

1177
fit 1.41), sex life (infit 1.30), other injuries (infit 1.30),
pain (infit 1.31), and seeing/hearing (infit 1.36). The
results of this analysis give moderate support to a unidimensional model, but also indicate that some of the items in
the Social relationships and Physical problems scales
have a poor fit with a unidimensional model.
Exploratory factor analyses
The results of two principal components analyses (PCA)
are shown in Table 8. Loadings on the first component of a

Table 8. Principal Components Analyses of the QOLIBRI Items


Scale

Item

First principal
component
Communality Factor 1 Factor 2 Factor 3 Factor 4 Factor 5 Factor 6

Cognition
Concentrate
Express yourself
Remember
Plan and problem solve
Decisions
Find way
Speed of thinking

0.681
0.641
0.629
0.705
0.693
0.591
0.687

0.651
0.594
0.605
0.708
0.627
0.523
0.642

Energy
Motivation
Self-esteem
Way you look
Achievements
Self-perception
Own future

0.669
0.672
0.699
0.587
0.666
0.733
0.678

0.562
0.550
0.694
0.493
0.580
0.728
0.588

Independence
Get out and about
Domestic activities
Run personal finances
Participation work
Social & leisure activities
In charge of life

0.691
0.662
0.634
0.565
0.644
0.678
0.714

0.663
0.659
0.601
0.399
0.510
0.502
0.622

Affection towards others


Family members
Friends
Partner
Sex life
Attitudes of others

0.585
0.530
0.580
0.443
0.510
0.614

0.660
0.616
0.589
0.591
0.574
0.506

Loneliness
Boredom
Anxiety
Depression
Anger/aggression

0.562
0.482
0.552
0.590
0.474

0.596
0.620
0.677
0.685
0.516

Slow/clumsiness
Other injuries
Pain
See/hear
TBI effects

0.550
0.477
0.465
0.386
0.642

0.540
0.571
0.505
0.491
0.585

0.755
0.753
0.745
0.738
0.620
0.692
0.722

0.279

Self
0.649
0.651
0.826
0.705
0.720
0.849
0.724

Daily life
0.731
0.773
0.749
0.482
0.443
0.342
0.569

0.281
0.279

Social

0.251

0.719
0.730
0.691
0.758
0.663
0.498

0.256
0.315

Emotions
0.265
0.316

0.634
0.796
0.826
0.747
0.708

Physical
0.574
0.753
0.587
0.748
0.518

Shown are 1 forced single-factor solution (column 3), and 1 six-factor solution (eigenvalues > 1; columns 410). Factor loadings > .25 are
shown.
QOLIBRI, Quality of Life After Brain Injury; TBI, traumatic brain injury.

CHEL ET AL.
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Table 9. Intercorrelations (Spearmans Rho) between QOLIBRI Scale Scores

Cognition
Self
Daily life
and autonomy
Social relationships
Emotions
Physical problems
QOLIBRI total

Scale No.

QOLIBRI scales
1

1
2
3

0.65
0.70

0.71

4
5
6
7

0.48
0.47
0.55
0.82

0.59
0.53
0.50
0.85

0.56
0.48
0.57
0.86

0.49
0.37
0.73

0.53
0.72

0.72

QOLIBRI, Quality of Life After Brain Injury.

single-factor solution indicate that items in the first three


scales generally have a good fit (loadings > 0.6) with a
unidimensional HRQoL model descriptive system. Items in
the last three scales have a weaker fit with this single-factor
descriptive system, and two items (partner and see/
hear) have a poor fit (loading < .45). The single-factor PCA
is thus consistent with the Rasch analysis conducted on all
items combined, and indicates that there is a unidimensional component to the QOLIBRI, primarily based on the
items in the first three scales, which are concerned with
cognitive function, self-perception, and independent living.
The items from the last three scales, with the two exceptions
described above, have moderate fit with this descriptive
system model.
The results from the second PCA, for which six factors with
eigenvalues > 1 were extracted, on the other hand, nicely
confirm the overall structure of the QOLIBRI: all items have
the highest loadings on their home scales, and there is relatively little cross-loading > 0.25.
The PCA single-factor solution accounted for only 37% of
the variance, while the six factors accounted for 59%. These
scales are moderately correlated, as shown in Table 9.
Confirmatory factor analysis (CFA) using structural
equation modeling (SEM)
Structural equation modeling (SEM) was used to confirm
the structure of the QOLIBRI. The SEM model with six factors showed substantial intercorrelation of latent factors
(range of r .469.796). Thus, a second-order factor underlying the six original factors on the first level was specified to
account for these intercorrelations of latent variables and in
keeping with conceptual considerations (general HRQoL as
a higher-order construct). The final model (Fig. 2) consisted
of the six latent variables (factors) on one level, and a second-order latent variable (a general HRQoL factor). Fit
statistics indicated a reasonable fit with this model
(CFI 0.896, RMSEA 0.055, w2 2115.96, df 623,
p[w2] < 0.001). In fact, the model meets the RMSEA criterion,
rather than the CFI criterion, for satisfactory fit (Hu and
Bentler, 1999). Combinations of cut-off rules are more appropriate for lower sample sizes (<250), and with larger
sample sizes that tend to over-reject models (see Hu and
Bentler, 1999). A similar problem arises if chi-square statistics are applied to larger sample sizes. We believe RMSEA is
more appropriate than CFI because it compensates for model
complexity.

Discussion
The parallel, consensual, and cross-cultural development of
this new specific instrument for the assessment of HRQoL of
persons after TBI represents a distinctive and unusual approach.
The different language samples were generally collected as
convenience samples (with two exceptions: Germany and
Australia), which is a common strategy in this type of instrument development study (Hawthorne et al., 2006). The
wide variation represents an advantage for this type of study
because it ensures future applicability to a wide range of patients. The relatively small number per language sample,
however, presents a limitation for analyses on the language
level.
For use in international multi-centre studies, the content as
well as metric equivalence of an instrument needs to be
demonstrated (Bullinger et al., 1993; Stucki et al., 1997). Thus
the translation of HRQoL instruments requires a standardized
process, including translation, back translation, review, cognitive debriefing, and harmonizations of the different language translations. We ensured comparability of the different
translations by following accepted guidelines concerning
cognitive debriefing in each set of language and harmonization procedures (von Steinbuchel et al., 2002; Acquadro et al.,
1996). Cross-cultural development also includes the demonstration of comparable metric properties for the whole sample, as well as for the different languages, in particular with
respect to internal consistency, reliability, factor structure,
and validity (von Steinbuchel et al., 2010).
The results of the present study indicate favorable psychometric properties of the QOLIBRI. In spite of the variation
in demographic and clinical characteristics, internal consistency and test-retest reliability are acceptable to good, both in
the total sample and in different language groups. The testretest reliability of the QOLIBRI is similar to that of the EBIQ
(Sopena et al., 2007), a patient-reported outcome measure
developed for TBI.
Reliabilities for the individual QOLIBRI scales were also
good in the subgroup with poorer cognitive performance. The
lowest reliability was recorded for the Emotions scale, an
area in which some fluctuation might be expected.
A concern with self-report instruments in TBI is the potential lack of insight that may be experienced by those with
cognitive impairment. Experience in diseases such as dementia suggests that subjective HRQoL judgments can be
obtained reliably, even in people with substantial cognitive

DEVELOPMENT AND METRIC PROPERTIES OF QOLIBRI

1179
QOL_01

ERR_01

QOL_02

ERR_02

QOL_03

ERR_03

QOL_04

ERR_04

QOL_05

ERR_05

QOL_06

ERR_06

QOL_07

ERR_07

,67

QOL_08

ERR_08

,69

QOL_09

ERR_09

QOL_10

ERR_010

QOL_11

ERR_11

QOL_12

ERR_12

QOL_13

ERR_13

QOL_14

ERR_14

,75

QOL_15

ERR_15

,74

QOL_16

ERR_16

QOL_17

ERR_17

QOL_18

ERR_18

QOL_19

ERR_19

QOL_20

ERR_20

QOL_21

ERR_21

,74

QOL_22

ERR_22

,72

QOL_23

ERR_23

QOL_24

ERR_24

QOL_25

ERR_25

QOL_26

ERR_26

QOL_27

ERR_27

QOL_28

ERR_28

QOL_29

ERR_29

QOL_30

ERR_30

QOL_31

ERR_31

QOL_32

ERR_32

QOL_33

ERR_33

QOL_34

ERR_34

QOL_35

ERR_35

QOL_36

ERR_36

QOL_37

ERR_37

,76
,73
,71
COGNITION

,80
,72
,65
,77

,72

,78
,79

SELF

,64
,71
,82
,72

,57

,80

,69

,54

,58

,72

DAILY_LIFE
,66
,68

,70

,75
,62
,67

,64

,72
,54

SOCIAL

,60
,61
,64

,72
,56
,70
,68
,75

,47

EMOTION
,78
,63

,67
,65
,61
PHYSICAL

,58
,45
,77

FIG. 2. Model of the structure of QOLIBRI items and scales, and path coefficients as revealed by SEM analysis (Quality of
Life After Brain Injury scale; SEM. structural equation modeling).

CHEL ET AL.
VON STEINBU

1180
impairment (Brod et al., 1999; Novella et al., 2001; Wlodarczyk et al., 2004). The relationship between reliability of
reports and cognitive status, however, is an issue that has not
been properly addressed in head injury (Riemsma et al., 2001).
This study showed that internal consistency (i.e., Cronbachs
a) for participants with poor cognitive performance was satisfactory, and test-retest reliability was good for the QOLIBRI.
This study, however, did not include detailed neuropsychological testing of cognitive functioning, which presents a topic
for future research. On the other hand, the majority of participants were severely injured. We conclude that the reliability of the QOLIBRI is satisfactory to good, even when
some cognitive impairment is present, and may be appropriate for the great majority of persons after TBI.
The conceptual model of HRQoL, on which the QOLIBRI
descriptive system was based, initially suggested a seven-,
then a six-dimensional model with four satisfaction scales
and three bothered scales, which were then collated into
two scales following psychometric examination. The PCA and
SEM analyses support this six-factor structure of the QOLIBRI
in a second-order latent variable model. Also, RASCH
analysis based on the presented results does not support
unidimensionality for all the items, and instead suggests a
multi-factorial structure. However, there is potential to develop, in future research, a QOLIBRI short form with a
reduced number of items and dimensions.
The final descriptive system of the QOLIBRI provides both
for an HRQoL profile across six domains of life, and also a
total index of HRQoL. The data from the various analyses
suggest that where a rich profile description of HRQoL is
required, the individual domain scores will provide this.
When used in evaluation studies, shifts in individual domains
will reflect areas of life where gains consequent to treatment
are made. In contrast, where an index of HRQoL is required,
this index can be used to assess the impact of treatments on
overall HRQoL as measured by QOLIBRI total score.
A limitation of the study was that the number of participants was too small for most language samples to confirm the
QOLIBRI factor structure within each language. Examination
of the factor structure in some of the larger samples of the first
validation study, however, confirms the structure. Rasch
analysis suggests a certain amount of redundancy at the item
level. A short six-item screening measure is already available
with the Overall items (psychometric properties will be
reported in von Steinbuchel et al., in prep.); the use of the
different versions will depend on the research questions to be
answered.
The development of the QOLIBRI descriptive system in
two large multi-national samples of persons after TBI has
resulted in an instrument with good psychometric properties.
Specific information on the validity of the scale can be found
in the other article on QOLIBRI in this issue (von Steinbuchel
et al., 2010). The results of this investigation of the validity of
the QOLIBRI show the expected confirmatory patterns of
correlations with instruments assessing disability, emotion,
and subjective health status, including the GOSE, HADS, and
SF-36. A multiple regression analysis showed that the main
correlates of the total QOLIBRI score were emotional state
(HADS depression and anxiety), amount of help needed,
outcome on the GOSE, and number of comorbid health conditions. Together these five variables accounted for 58% of the
variance.

The QOLIBRI measures well-being and health-related


quality of life from the patients perspective. The items predominantly concentrate on emotional, cognitive, and psychosocial aspects, and to a lesser extent on physical changes.
The questionnaire thus measures satisfaction and distress in
areas of life typically affected by traumatic brain injury. The
QOLIBRI provides an assessment of quality of life that potentially complements functional outcome measures such as
the GOS or GOSE.
Further work will explore the sensitivity and responsiveness of the measure, and further cross-cultural comparisons of
scale structures and scores. The psychometric properties of
the QOLIBRI suggest that it is a practical and reliable instrument that can be considered for use in studies examining
HRQoL after TBI in clinical as well as in research settings
(Zitnay et al., 2008).
Acknowledgments
The QOLIBRI Task Force consists of collaborating investigators in the following countries (*Steering Committee,
{
Methodological Group): Argentina (Armando Basso),
Australia (Graeme Hawthorne{), Austria (Stefan Hofer{),
Belgium (Christine Croisaux, Andrew Maas*), Brazil (Lucia
Braga), China (Wai Poon, Zhang Tong), Denmark (AnneLise Christensen), Finland ( Jaana Sarajuuri, Sanna Koskinen), France (Philippe Azouvi, Michelle Montreuil, Pierre
North, Jean-Luc Truelle*), Germany (Monika Bullinger,*{
Henning Gibbons,{ Tanja Lischetzke,{ Edmund Neugebauer,* Nadine Sasse, Silke Schmidt,{ Nicole von Steinbuchel,*{ Klaus von Wild,* Wolfgang Woerner{), Greece (Eva
Tazopoulou), E. Wahjoepramono (Indonesia), Italy (Rita
Formisano), Japan (Yoichi Katayama), Netherlands (Wilbert
Bakx, Pieter E. Vos), Poland (Maria Pachalska), Portugal
(Sandra Guerreiro), Russia (Boleslav Lichterman), Taiwan
(Wen-Ta Chiu), United Kingdom (Richard Greenwood, Jane
Powell,* Lindsay Wilson{), United States of America ( John
DaVanzo, George Zitnay*).
Author Disclosure Statement
No competing financial interests exist.
References
Acquadro, C., Jambon, B., Ellis, D., and Marquis, P. (1996).
Language and translation issues, in: Quality of Life and Pharmacoeconomics in Clinical Trials. B. Spilker (ed). Raven: New
York, pps. 575585.
Andelic, N., Hammergren, N., Bautz-Holter, E., Sveen, U.,
Brunborg, C., and Roe, C. (2009). Functional outcome and
health-related quality of life 10 years after moderate-to-severe
traumatic brain injury. Acta Neurol. Scand. 120, 1623.
Arango-Lasprilla, J.C., Rosenthal, M., Deluca, J., Komaroff, E.,
Sherer, M., Cifu, D., and Hanks, R. (2007). Traumatic brain
injury and functional outcomes: Does minority status matter?
Brain Inj. 21, 701708.
Berger, E., Leven, F., Pirente, N., Bouillon, B., and Neugebauer,
E. (1999).Quality of life after traumatic brain injury: A systematic review of the literature. Restor. Neurol. Neurosci. 14,
93102.
Bland, J.M., and Altman, D.G. (1997). Statistics Notes: Cronbachs alpha. BMJ 314, 572.

DEVELOPMENT AND METRIC PROPERTIES OF QOLIBRI


Bond, T.G., and Fox, C.M. (2007). Applying the Rasch Model, 2nd
ed. Lawrence Erlbaum Associates: Mahwah, NJ.
Brandt, J., and Folstein, M.F. (2003). Telephone Interview for Cognitive Status: Professional Manual. Psychological Assessment
Resources, Inc.: Lutz, FL.
Brandt, J., Spencer, M., and Folstein, M. (1988). The Telephone
Interview for Cognitive Status. Neuropsychiatry Neuropsychol. Behav. Neurol. 1, 111117.
Brod, M., Steward, A.L., Sands, L., and Waltson, P. (1999).
Conzeptualization and measurement of quality of life in dementia: The Dementia Quality of Life Instrument (DQoL).
Gerontologist 39, 2536.
Bullinger, M., Anderson, R., Cella, D., and Aaronson, N. (1993).
Developing and evaluating cross-cultural instruments from
minimum requirements to optimal models. Qual. Life Res. 2,
451459.
Bullinger, M., and von Steinbuchel, N. (2001). Quality of Life
Measurement and Outcome, in: Comprehensive Care for People
with Epilepsy. M. Pfafflin, T. Fraser, R. Thorbecke, U. Specht,
and R. Wolff (eds). John Libbey and Company Ltd.: London,
pps. 277292.
Callahan, C.D., Young, P.I., and Barisa, M.T. (2005). Using the
SF-36 for longitudinal outcomes measurement in rehabilitation. Rehabil. Psychol. 50, 6570.
Cattelani, R., Roberti, R., and Lombardi, F. (2008). Adverse effects of apathy and neurobehavioral deficits on the community integration of traumatic brain injury subjects. Eur. J. Phys.
Rehabil. Med. 44, 245251.
Cohen J. (1988). Statistical Power Analysis for the Behavioural Sciences. Lawrence Erlbaum: Hillsdale, NJ.
Corrigan, J.D., and Bogner, J. (2004). Latent factors in measures
of rehabilitation outcomes after traumatic brain injury. J. Head
Trauma Rehabil. 19, 445458.
Corrigan, J.D., Smith-Knapp, K., and Granger, C.V. (1998).
Outcomes in the first 5 years after traumatic brain injury.
Arch. Phys. Med. Rehabil. 79, 298305.
Crum, R.M., Anthony, J.C., Bassett, S.S., and Folstein, M.F.
(1993). Population-based norms for the Mini Mental State
Examination by age and educational level. JAMA 12, 2386
2391.
Dahlberg, C.A., Cusick, C.P., Hawley, L.A., Newman, J.K.,
Morey, C.E., Harrison-Felix, C.L., and Whiteneck, G.G. (2007).
Treatment efficacy of social communication skills training after traumatic brain injury: A randomized treatment and deferred treatment controlled trial. Arch. Phys. Med. Rehabil. 88,
15611573.
Diener, E., Emmons, R.A., Larsen, R.J., and Griffin, S. (1985). The
Satisfaction with Life Scale. J. Pers. Assess. 49, 7175.
Dijkers, M.P. (2004). Quality of life after traumatic brain injury:
A review of research approaches and findings. Arch. Phys.
Med. Rehab. 85, 2135.
Dikmen, S.S., Machamer, J.E., Powell, J.M., and Temkin, N.R.
(2003). Outcome 3 to 5 years after moderate to severe traumatic brain injury. Arch. Phys. Med. Rehab. 84, 14491457.
English, T.C. (1904). The after-effects of head injuries. Lancet 20,
485489.
Findler, M., Cantor, J., Haddad, L., Gordon, W., and Ashman, T.
(2001). The reliability and validity of the SF-36 Health Survey
Questionnaire for use with individuals with traumatic brain
injury. Brain Inj. 15, 715723.
Fleiss, J.L. (1986). Analysis of data from multiclinic trials. Control. Clin. Trials 7, 267275.
Folstein, M.F., Folstein, S.E., and McHugh, P.R. (1975). Mini
mental state. A practical method for grading the cognitive

1181
state of patients for the clinician. J. Psychiatr. Res. 12, 189
198.
Gerin, P., Dazord, A., Boissel, J.P., Hanauer, M.T., Moleur, P.,
and Chauvin, F. (1989). Quality of life assessment in therapeutic trials. Conceptual aspects and presentation of a Questionnaire. Therapie 44, 355364.
Guyatt, G.H., Veldhuyzen van Zanten, S.J., Feeny, D.H., and
Patrick, D.L. (1989). Measuring quality of life in clinical
trials: a taxonomy and review. Can. Med. Assoc. J. 140,
14411448.
Hawthorne, G., Davidson, N., Quinn, K., McCrate, F.,
Winkler, I., Lucas, R., Kilian, R., and Molzahn, A. (2006).
Issues in conducting cross-cultural research: implementation of an agreed international procotol designed by the
WHOQOL Group for the conduct of focus groups eliciting
the quality of life of older adults. Qual. Life Res. 15, 1257
1270.
Hawthorne, G., Gruen, R.L., and Kaye, A.H. (2009). Traumatic
brain injury and long-term quality of life: findings from an
Australian study. J. Neurotrauma 26, 16231633.
Hays, R.D., Hayashi, T., Carson, S., and Ware Jr., J.E. (1988).
Users Guide for the Multitrait Analysis Program. RAND Corporation: Santa Monica, CA.
Hu, L., and Bentler, P.M. (1999). Cutoff criteria for fit indexes in
covariance structure analysis: Conventional criteria versus
new alternatives. Structural Equation Modeling 6, 155.
Jennet, B., and Bond, M. (1975). Assessment of outcome after
severe brain damage. Lancet, 480484.
Klonoff, P.S., Costa, L.D., and Snow, W.G. (1986). Predictors and
indicators of quality of life in patients with closed-head injury.
J. Clin. Exp. Neuropsych. 8, 469485.
Klonoff, P.S., Watt, L.M., Dawson, L.K., Henderson, S.W.,
Gehrels, J.-A., and Voreis Wethe, J. (2006). Psychosocial
outcomes 17 years after comprehensive milieu-oriented
neurorehabilitation: The role of pre-injury status. Brain Inj.
20, 601612.
Koskinen, S. (1998). Quality of life 10 years after a very severe
traumatic brain injury (TBI): The perspective of the injured
and the closest relative. Brain Inj. 12, 631648.
Lippert-Gruner, M., Maegele, M., Haverkamp, H., Klug, N., and
Wedekind, C. (2007). Health-related quality of life during the
first year after severe brain trauma with and without polytrauma. Brain Inj. 21, 451455.
MacKenzie, E.J., McCarthy, M.L., Ditunno, J.F., Forrester-Staz,
C., Gruen, G.S., Marion, D.W., and Schwab, W.C. (2002).
Using the SF-36 for characterizing outcome after multiple
trauma involving head injury. J. Trauma 52, 527534.
Mascialino, G., Hirshson, C., Egan, M., Cantor, J., Ashman, T.,
Tsaousides, T., and Spielman, L. (2009). Objective and subjective assessment of long-term community integration in
minority groups following traumatic brain injury. NeuroRehabilitation 24, 2936.
McCrimmon, S. and Oddy, M. (2006). Return to work following
moderate-to-severe traumatic brain injury. Brain Inj. 20, 1037
1046.
McCarthy, M.L., Dikmen, S., Langlois, J.A., Selassie, A.W., Gu
J.K., and Horner, M.D. (2006). Self-reported psychosocial
health among adults with traumatic brain injury. Arch. Phys.
Med. Rehabil. 87, 953961.
Moosbrugger, H., and Kelava, A. (2007). Testtheorie und Fragebogenkonstruktion (Test theory and questionnaire construction).
Springer: Berlin.
Neugebauer, E., Bouillon, B., Bullinger, M., and Wood-Dauphinee, S. (2002). Quality of life after multiple traumaSummary

1182
and recommendations of the consensus conference. Restor.
Neurol. Neurosci. 20, 161167.
NIH Consensus Development Panel on Rehabilitation of Persons
with Traumatic Brain Injury (1999). Rehabilitation of persons
with traumatic brain injury. JAMA 282, 974983.
Novella, J.L., Jochum, C., Ankri, J., Morrone, I., Jolly, D., and
Blanchard, F. (2001). Measuring general health status in dementia: practical and methodological issues in using the SF-36.
Aging (Milano) 13, 362369.
Olsson, I., Mykletun, A., and Dahl, A.A. (2005). The Hospital
Anxiety and Depression Rating Scale: A cross-sectional study
of psychometrics and case finding abilities in general practice.
BMC Psychiatry 14, 46.
Pagulayan, K.F., Hoffmann, J.M., Temkin, N.R., Machamer, J.E.,
and Dikmen, S.S. (2008). Functional limitations and depression after traumatic brain injury: Examination of the temporal
relationship. Arch. Phys. Med. Rehabil. 89, 18871892.
Papulayan, K.F., Temkin, N.R., Machamer, J., and Dikmen, S.S.
(2006). A longitudinal study of health-related quality of life
after traumatic brain injury. Arch. Phys. Med. Rehabil. 87,
611618.
Pierce, C.A., and Hanks, R.A. (2006). Life satisfaction after
traumatic brain injury and the World Health Organisation
model of disability. Am. J. Phys. Med. Rehabil. 85, 889898.
Powell, J.H., Beckers, K., and Greenwood, R.J. (1998). Measuring
progress and outcome in community rehabilitation after brain
injury with a new assessment instrumentthe BICRO-39
Scales. Arch. Phys. Med. Rehab. 79, 12131225.
Power, M., Quinn, K., Schmidt, S., and the WHOQOL-OLD
Group. (2005). Development of the WHOQOL-old module.
Qual. Life. Res. 14, 21972214.
Riemsma, R.P., Forbes, C.A., Glanville, J.M., Eastwood, A.J., and
Kleijnen, J. (2001). General health status measures for people
with cognitive impairment: Learning disability and acquired
brain injury. Health Technol. Assess. 5, 1100.
Rimel, R.W., Giordani, B., Barth, J.T., and Jane, J.A. (1982).
Moderate head injury: completing the clinical spectrum of
brain trauma. Neurosurgery 11, 344351.
Schonberger, M., Humle, F., Zeemann, P., and Teasdale, T.W.
(2006). Working alliance and patient compliance in brain injury rehabilitation and their relation to psychosocial outcome.
Neuropsychol. Rehab. 16, 298314.
Shames, J., Treger, I., Ring, H., and Giaquinto, S. (2007). Return
to work following traumatic brain injury: Trends and challenges. Disabil. Rehabil. 29, 13871395.
Schmidt, S., Debensason, D., Muhlan, H., Petersen, C., Power,
M., Simeoni, M., and Bullinger, M. (2006). The DISABKIDS
generic quality of life instrument showed cross-cultural validity. J. Clin. Epidemiol. 29, 587598
Smith, A.B., Rush, R., Fallowfield, L.J., Velikova, G., and Sharpe,
M. (2008). Rasch Fit Statistics and Sample Size Considerations
for Polytomous Data. BMC Med. Res. Methodol. 8, 33.
Sopena, S., Dewar, B.K., Nannery, R., Teasdale, T.W., and Wilson, B.A. (2007). The European Brain Injury Questionnaire
(EBIQ) as a reliable outcome measure for use with people with
brain injury. Brain Inj. 21, 10631068.
Stucki, G., Stucki, S., and Sangha, O. (1997). Patientenzentrierte
Evaluation der Krankheitsauswirkungen bei musculoskeletalen Erkrankungen. Adaptation und Neuentwicklung von
Outcome Instrumenten. Z. Rheumatologie 56, 266275.
Teasdale, G., and Jennett, B. (1974). Assessment of coma and
impaired consciousness. A practical scale. Lancet 2, 8184.
Teasdale, T.W., Christensen, A., Willmes, K., Deloche, G., Braga,
L., Stachowiak, F., Vendrell, J.M., Castro-Caldas, A., Laakso-

CHEL ET AL.
VON STEINBU
nen, R., and Leclercq, M. (1997). Subjective experience in
brain-injured patients and their close relatives: a European
Brain Injury Questionnaire study. Brain Inj. 11, 543563.
Tomberg, T., Toomela, A., Pulver, A., and Tikki, A. (2005).
Coping strategies, social support, life orientation and healthrelated quality of life following traumatic brain injury. Brain
Inj. 19, 11811190.
Tazopoulou, E., Truelle, J.-L., North, P., and Montreuil, M.
(2005). Generic and specific measures of quality of life after
traumatic brain injury: Initial validation of a new specific
measure, The QOLBI. Acta Neuropsychol. 3, 1324.
Truelle, J.-L., von Wild, K., Hofer, S., Neugebauer, E., Lischetzke,
T., von Steinbuchel, N., and the QOLIBRI Group (2008). The
QOLIBRITowards a quality of life tool after traumatic brain
injury: Current developments in Asia. Acta Neurochir. Suppl.
101, 125129.
von Steinbuchel, N. (1995). Gesundheitsbezogene Lebensqualitat
als Beurteilungskriterium fur Behandlungseffekte bei Patienten mit Epilepsie. Pravention Rehabilitation 7, 39146.
von Steinbuchel N., Lischetzke T., Gurny M., and Eid, M. (2006)
Assessing quality of life in older people: psychometric properties of WHOQOL-BREF. Eur. J. Ageing 3, 116122.
von Steinbuchel, N., Petersen, C., and Bullinger, M. (2002). Study
protocol, cognitive debriefing protocol and harmonization
guidelines for the QOLIBRI Development in TBI study. Unpublished.
von Steinbuchel, N., Petersen, C., Bullinger, M., and the QOLIBRI Group. (2005b). Assessment of Health-related quality
of life in persons after traumatic brain injuryDevelopment
of the QOLIBRI, a specific measure. Acta Neurochir. 93, 4349.
von Steinbuchel, N., Richter, S., Morawetz, C., and Riemsma, R.
(2005a). Assessment of subjective health and health-related
quality of life in persons with acquired or degenerative brain
injury. Curr. Opin. Neurol. 18, 681691.
von Steinbuchel, N., Wilson, L., Gibbons, H., Hawthorne, G.,
Hofer, S., Schmidt, S., Bullinger, M., Maas, A., Neugebauer, E.,
Powell, J., von Wild, K., Zitnay, G., Bakx, W., Christensen, A.L., Koskinen, S., Formisano, R., Jana Saarajuri, J., Sasse, N.,
Truelle J.-L., and the QOLIBRI Task Force (2010). Quality of
Life after Brain Injury (QOLIBRI)scale validity and correlates of quality of life. J. Neurotrauma 27, 11571165.
Ware, J.E., and Kosinski, M. (1996). The SF-36 Health Survey
(Version 2.0) Technical Note. Health Assessment Lab: Boston,
September 20.
Ware, J.E., Keller, S.D., Gandek, B., Brazier, J., and Sullivan, M.
(1995). Evaluating translations of the health status questionnaires. Methods from the IQOLA project. Int. J. Technol. Assess. Health Care 11, 525551.
Ware, J.E. (2000). SF-36 Health Survey Update. Spine 25, 3130
3139.
Ware, J.E., Snow, K.K., Kosinski, M., and Gandek, B. (1993). SF36 Health Survey Manual and Interpretation Guide. New England
Medical Center, The Health Institute: Boston.
WHOQOL group. (1998). The World Health Organization
Quality of Life Assessment (WHOQOL): development and
general psychometric properties. Soc Sci. Med. 46, 15691585.
Wilson, L., Pettigrew, L., and Teasdale, G. (1998). Structured
interviews for the Glasgow Outcome Scale and the Extended
Glasgow Outcome Scale: Guidelines for their use. J. Neurotrauma 15, 573585.
Wlodarczyk, J.H., Brodathy, H., and Hawthorne, G. (2004). The
relationship between quality of life, Mini-Mental State Examination, and the Instrumental Activities of Daily Living in patients
with Alzheimers Disease. Arch. Gerontol. Geriat. 39, 2533.

DEVELOPMENT AND METRIC PROPERTIES OF QOLIBRI


Zigmond, A.S., and Snaith, R.P. (1983). The Hospital Anxiety
and Depression Scale. Acta Psychiatr. Scand. 67, 361370.
Zitnay, G.A., Zitnay, K.M., Povlishock, J.T., Hall, E.D.,
Marion, D.W., Trudel, T., Zafonte, R.D., Zasler, N., Nidiffer, F.D., DaVanzo, J., and Barth, J.T. (2008). Traumatic
brain injury research priorities: The Conemaugh International Brain Injury Symposium. J. Neurotrauma 25, 1135
1152.

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Address correspondence to:
Nicole von Steinbuchel, Ph.D.
Department of Medical Psychology and Medical Sociology
Georg-August-University
Waldweg 37
Goettingen, Germany
E-mail: nvsteinbuechel@med.uni-goettingen.de

(Appendix follows)

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Appendix: QOLIBRIQuality of Life After Brain Injury

In the first part of this questionnaire we would like to know how satisfied you are with different aspects of your life since your
brain injury. For each question please choose the answer which is closest to how you feel now (including the past week) and
mark the box with an X. If you have problems filling out the questionnaire, please ask for help.
PART 1
A. These questions are about your thinking
abilities now (including the past week).

Not at all

Slightly

Moderately

Quite

Very

1. How satisfied are you with your ability to concentrate,


for example when reading or keeping track of a conversation?
2. How satisfied are you with your ability to express
yourself and understand others in a conversation?
3. How satisfied are you with your ability to remember
everyday things, for example where you have put things?
4. How satisfied are you with your ability to plan and work out
solutions to everyday practical problems, for example what
to do when you lose your keys?
5. How satisfied are you with your ability to make decisions?
6. How satisfied are you with your ability to find your
way around?
7. How satisfied are you with your speed of thinking?

Not
at all

B. These questions are about your emotions and view of yourself now
(including the past week).
1.
2.
3.
4.
5.
6.
7.

How
How
How
How
How
How
How

satisfied
satisfied
satisfied
satisfied
satisfied
satisfied
satisfied

are
are
are
are
are
are
are

you
you
you
you
you
you
you

with
with
with
with
with
with
with

Slightly

Moderately

Quite

Very

your level of energy?


your level of motivation to do things?
your self-esteem, how valuable you feel?
the way you look?
what you have achieved since your brain injury?
the way you perceive yourself?
the way you see your future?

C. These questions are about your independence and how you function
in daily life now (including the past week).

Not
at all

Slightly

Moderately

Quite

Very

Moderately

Quite

Very

1. How satisfied are you with the extent of your independence from others?
2. How satisfied are you with your ability to get out and about?
3. How satisfied are you with your ability to carry out domestic activities,
for example cooking or repairing things?
4. How satisfied are you with your ability to run your personal finances?
5. How satisfied are you with your participation in work or education?
6. How satisfied are you with your participation in social and leisure
activities, for example sports, hobbies, parties?
7. How satisfied are you with the extent to which you are in charge
of your own life?

D. These questions are about your social relationships now


(including the past week).
1. How satisfied are you with your ability to feel affection towards others,
for example your partner, family, friends?
2. How satisfied are you with your relationships with members
of your family?
3. How satisfied are you with your relationships with
your friends?
4. How satisfied are you with your relationship with a partner
or with not having a partner?
5. How satisfied are you with your sex life?
6. How satisfied are you with the attitudes of other people
towards you?

Not
at all

Slightly

DEVELOPMENT AND METRIC PROPERTIES OF QOLIBRI

1185

PART 2
In the second part we would like to know how bothered you feel by different problems. For each question please choose the
answer which is closest to how you feel now (including the past week), and mark the box with an X. If you have problems
filling out the questionnaire, please ask for help.
E. These questions are about how bothered you are by your feelings now
(including the past week).
1. How bothered are you
are with other people?
2. How bothered are you
3. How bothered are you
4. How bothered are you
5. How bothered are you

Not
at all

Slightly

Moderately

Quite

Very

by feeling lonely, even when you


by
by
by
by

feeling
feeling
feeling
feeling

bored?
anxious?
sad or depressed?
angry or aggressive?

F. These questions are about how bothered you are by physical problems now
(including the past week).
1. How bothered are you by slowness and/or clumsiness
of movement?
2. How bothered are you by effects of any other injuries
you sustained at the same time as your brain injury?
3. How bothered are you by pain, including headaches?
4. How bothered are you by problems with seeing
or hearing?
5. Overall, how bothered are you by the effects
of your brain injury?
The authors of this article, all rights reserved,
www.qolibrinet.com.
For details contact nvsteinbuechel@med.uni-goettingen.de.

Not
at all

Slightly

Moderately

Quite

Very

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