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XML Template (2010) [30.7.2010–5:51pm] [1–20]K:/TBIN/TBIN_A_506865.3d (TBIN) [PREPRINTER stage]

Brain Injury, Month?? 2010; ??(?): 1–20

Quality of life after traumatic brain injury: The clinical use of the

QOLIBRI, a novel disease-specific instrument

JEAN-LUC TRUELLE, SANNA KOSKINEN, GRAEME HAWTHORNE,

JAANA SARAJUURI, RITA FORMISANO, KLAUS VON WILD,

EDMUND NEUGEBAUER, LINDSAY WILSON, HENNING GIBBONS,

JANE POWELL, MONIKA BULLINGER, STEFAN HOFER, ANDREW MAAS,

GEORGE ZITNAY, NICOLE VON STEINBUECHEL, & THE QOLIBRI TASK FORCE*

The QOLIBRI Task Force on TBI Quality of Life, Department of Physical Medicine and Rehabilitation,

University Hospital, Garches, France

(Received 23 February 2010; accepted 4 July 2010)

AbstractObjective: To report the clinical use of the QOLIBRI, a disease-specific measure of health-related quality-of-life (HRQoL)after traumatic brain injury (TBI).Methods: The QOLIBRI, with 37 items in six scales (cognition, self, daily life and autonomy, social relationships, emotionsand physical problems) was completed by 795 patients in six languages (Finnish, German, Italian, French, English andDutch). QOLIBRI scores were examined by variables likely to be influenced by rehabilitation interventions and includedsocio-demographic, functional outcome, health status and mental health variables.Results: The QOLIBRI was self-completed by 73% of participants and 27% completed it in interview. It was sensitive toareas of life amenable to intervention, such as accommodation, work participation, health status (including mental health)and functional outcome.Conclusion: The QOLIBRI provides information about patient’s subjective perception of his/her HRQoL whichsupplements clinical measures and measures of functional outcome. It can be applied across different populations andcultures. It allows the identification of personal needs, the prioritization of therapeutic goals and the evaluation of individualprogress. It may also be useful in clinical trials and in longitudinal studies of TBI recovery.

Keywords: Traumatic brain injury, health-related quality of life, assessment, international, multi-centre study, QOLIBRI

Introduction

Traumatic brain injury: A ‘silent epidemic’

Traumatic brain injury (TBI) is a major cause of

death and of disability, particularly in persons under

40 years of age. The number of disability cases

due to TBI was estimated at �5.3 million in the US

in 1996; extrapolated to the 2006 European

Community countries this suggests that in 2006

there were �6.2 million Europeans with TBI-related

disability [1, 2].

However, this ‘silent epidemic’ is not widely

known and its importance to public health insuffi-

ciently recognized [3]. Although the incidence of

TBI is high and increasing for elderly persons [4]

in Western societies, worldwide it mainly affects

Correspondence: Professor Jean-Luc Truelle, MD, Chairman of the QOLIBRI Task Force on TBI Quality of Life, Department of Physical Medicine and

Rehabilitation, University Hospital, F 92380, Garches, France. Tel/Fax: þ331 42 08 67 88. E-mail: [email protected]

*Listed at the end of the manuscript.

ISSN 0269–9052 print/ISSN 1362–301X online ß 2010 Informa Healthcare Ltd.

DOI: 10.3109/02699052.2010.506865

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adolescents and young adults in traffic accidents and

comes at a time when they are making decisions

about important life issues regarding independence,

work and relationships. The long-term cognitive,

emotional and physical impairments due to TBI and

the resulting limitations of daily-life activities affect

the person’s self-image, coping strategies and ulti-

mately their health-related quality-of-life (HRQoL)

as well as that of their significant others [5–7].

Improving HRQoL should be the ultimate goal in

the rehabilitation of patients with TBI and assessing

HRQoL in this population is necessary to achieve

this goal.

The World Health Organization (WHO) defines

quality of life (QoL) as ‘an individual’s 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’

([8], p. 153). HRQoL, a sub-set of this QoL

concept, explicitly relates to those aspects of life

affected by health [9, 10]. Increasingly, over the past

two decades, there has been a trend to apply disease-

specific HRQoL instruments in addition to generic

health scales, such as the SF-36 Health Survey. This

is particularly relevant to TBI as specific aspects,

such as cognitive dysfunction and social disruption,

are insufficiently captured by generic HRQoL

measures [11–15]. No widely used and validated

disease-specific HRQoL measures are as yet avail-

able for TBI.

Factors influencing HRQoL of patients with TBI

In comparison to the extensive literature on outcome

after TBI, relatively few studies have reported on

HRQoL and these have mainly focused on severe

TBI. Three long-term studies with matched com-

parison groups have reported overall HRQoL to be

perceived as significantly lower by people who have

sustained either severe or mild/moderate TBI than

by healthy controls [16–18].

Greater initial severity—as measured by the

Glasgow Coma Scale (GCS), post-traumatic amne-

sia (PTA), length of hospital stay—and Glasgow

Outcome Scale score (GOS) at discharge appear to

predict poorer outcomes in terms of return to

work, family and social relationships and leisure

activities [18].

The relation between injury severity and HRQoL

is less clear. Although coma length has been shown

to predict long-term HRQoL [16], various other

studies find no statistically significant relationships

between initial injury severity and HRQoL

[12, 15, 19–22] and one even reports slightly

higher life satisfaction ratings at 1 year post-TBI,

although not at 2-year follow-up, in more severely

injured subjects [18].

The relationship between outcome measured by

the GOS and HRQoL is also not straightforward.

One study reported that severely disabled patients

had a better HRQoL than those who were moder-

ately disabled [23].

There is some evidence that pre-injury demo-

graphic variables predict subsequent health status

or HRQoL, including age [24], gender [24, 25] and

substance abuse [24–26], although other studies

have not confirmed these findings [18, 20].

A wide variety of sequelae have been reported to

be associated with lower HRQoL after TBI: inability

to perform extended activities of daily life (ADL)

[5, 23, 24], cognitive impairment [5, 24],

sleep–wake disturbances and fatigue [27–30],

deterioration in emotional status [22, 23, 31], pain

[32, 33], impaired communication skills [34], low

level of social participation and relationships

[16, 20], loss of participation in desired

everyday occupations [35] and vocational status

[22, 26, 30, 36]. These sequelae have been found

to be among the strongest predictors of distress for

significant others [37–39]. Consistent with these

findings, Vickery et al. [22] found that patients with

a poor self-concept reported lower HRQoL.

Steadman-Pare et al. [25] reported that the strongest

long-term predictors of HRQoL after TBI are

mental health, followed by self-rated health, employ-

ment, leisure, social relationships and emotional

support.

The functional limitations above are associated

with depression, which is also directly associated

with brain lesions [40] and pituitary hormone

deficiencies [41–43]. In addition, depression may

also be a consequence of deterioration in function

over time after injury. When combined with psycho-

social factors leading to hopelessness—including the

onset of disability, loss of pre-injury lifestyle,

occupation and the realization of a circumscribed

life requiring ongoing support—depression may have

a deleterious effect. Approximately one in every five

TBI-sufferers attempts suicide and the suicide rate is

between 2.4–4.1-times higher than that among

matched controls or general populations [44–47].

The most likely cause of these associations is

neurobehavioural impairment leading to changes in

personality, disability and/or mental health; associa-

tions that are comprehensively reviewed by

Fleminger [48].

There is limited evidence that for a few people

occurrence of a TBI may lead to improved HRQoL,

consistent with the post-traumatic growth hypothesis

[49]. Some patients find new personal strengths and

new relationships and re-orientate their life priorities

[50] and others may cease their problem drug

use [51].

2 J.-L. Truelle et al.

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Overall, the evidence suggests good reasons for

reporting poor HRQoL among patients with

TBI [52].

A new TBI-specific HRQoL measure

To assess trauma severity and clinical outcomes after

TBI there are now well-established and widely-used

TBI-specific instruments available, including the

Glasgow Coma Scale (GCS) [53], the Coma

Remission Scale [54] and the Coma Recovery

Scale [55] to measure recovery from coma, the

Glasgow Outcome Scale (GOS) or its extended

version, GOSE [56, 57], the Disability Rating Scale

[58] and the Mayo-Portland Inventory (MPAI) [59]

to index disability, the Community Integration

Questionnaire (CIQ) [60] to assess social reintegra-

tion and finally the International Classification

of Functioning, Disability and Health (ICF) as

a framework for describing functioning and

health [61].

In contrast, for TBI-related HRQoL such condi-

tion-specific tools do not exist and clinicians and

researchers have most often relied on measures

which explore an individual’s capacity to carry out

various daily functions, such as the SF-36/Rand-36/

SF-12 [13, 16, 21, 24, 62–67] or the European Brain

Injury Questionnaire (EBIQ) [68–76]. Increasingly,

however, the limitations of such instruments have

been recognized and there has been rising interest

in developing condition-specific HRQoL measures

which target the characteristics of a particular

population, disease or condition [12, 14, 15].

In 1999, Neugebauer and von Wild organized an

international and interdisciplinary consensus con-

ference funded by the German Ministry of

Education and Research. This conference recom-

mended the development of a measure for the

systematic HRQoL assessment of patients with

multiple injuries [12, 14, 77]. It became apparent

that no existing measure took into account specific

factors likely to affect HRQoL for patients with TBI.

An international and multidisciplinary Task Force

on TBI-QoL was therefore established to develop

a new HRQoL measure—the QOLIBRI

[12, 14, 77, 78]. In setting out to develop a robust

and valid multidimensional measure, the Task Force

recruited a much larger and more multicultural

sample than has been reported in previous studies of

HRQoL in patients with TBI. The initial develop-

ment, validation and psychometric analysis of the

QOLIBRI scale has been described elsewere

[78–82].

The aim of the current report is to focus on the

clinical application of the QOLIBRI, its potential use

and added value. This study explores associations

with clinical parameters which are likely to be of

particular interest and relevance to clinical teams

working with patients at various stages of their

treatment and rehabilitation and highlights concep-

tual and design features of the instrument which

relate directly to its clinical utility.

Methods

Participants

The study sample was the QOLIBRI validation

study sample [80] with convenience sample partici-

pants drawn from Belgium, Finland, France, Italy,

the Netherlands, the UK and the USA. Participants

from Australia and Germany were randomly drawn

from participating hospital trauma records.

The inclusion criteria were: ICD-10 diagnosis of

TBI; age 15 or more at injury and 17– 68 years at

recruitment to the study; 3 months to 18 years after

injury, capacity to give informed consent; and

adequate cognitive and behavioural functioning to

understand, answer and cooperate. Exclusion cri-

teria were: GOSE 53; spinal cord injury;

pre-traumatic or current psychiatric disease; ongoing

addiction; and terminal illness. Nine hundred and

twenty-one participants were recruited altogether.

Due to missing data the current study is based on the

795 participants for whom GCS and GOSE data

were available.

Measures

HRQoL was assessed by the QOLIBRI. This

consists of two parts with a total of 37 items across

six sub-scales [81]. The first part assesses level of

satisfaction within four domains: cognition (seven

items), self (seven items), daily life and autonomy

(seven items) and social relationships (six items).

The second part asks respondents how ‘bothered’

they are in relation to two domains: emotions

(five items) and physical problems (five items).

The items of the QOLIBRI English version are

presented in the Appendix. The completion mean

time was reported at 11minutes for self-completion

and 20minutes for face-to-face interview, although

this is likely to vary by disability level.

The QOLIBRI total scores were obtained by

simple summation of 37 item scores (graded 1–5),

after reversal of 10 ‘bothered’ items in order to have

a ‘satisfaction global score’. Then, the maximum

score is 37�5¼185. Afterwards, the QOLIBRI

scores are presented on a 0 (worst possible score on

the QOLIBRI) to 100 (best possible score) scale

(although this is a percentage scale it is more

common among HRQoL instruments to describe

this as a 0–100 point scale).

QOLIBRI, TBI-specific quality of life tool: Clinical use 3

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Probable anxiety and depression were identified

by the Hospital Anxiety and Depression Scale

(HADS) [83] using the cut-points recommended

by the developers; viz., 10/11 for probable anxiety or

depression [84]. Because correlation between the

two scales has been reported as evidence of real

coincidence between anxiety and depression [85],

cases were coded as those who did not meet the

criteria for either probable anxiety or depression,

those who met the criteria for either alone and those

who met the criteria for a dual diagnosis of both

anxiety and depression (cothymia).

Functional outcome was examined with the

GOSE which is the extended version of the GOS

[56, 57]. The GOSE assigns functional outcome to

one of eight levels: dead (1), vegetative (2), lower

severe disability (3), upper severe disability (4),

lower moderate disability (5), upper moderate

disability (6), lower good recovery (7) and upper

good recovery (8). There were, obviously, no cases

in the study in the range 1–2. Scoring of the GOSE

was based on the overall interviewer impression and

missing data imputed using a computer algorithm

developed by the author (L. Wilson) of the GOSE.

The injury date, main site of brain damage, GCS

scores (24-hour) and length of post-traumatic

amnesia (PTA) were extracted from the medical

records. Brain damage site was coded into those with

no lesion, frontal lesion (left and/or right), posterior

(left, right, posterior fossa, peri-ventricular) and

diffuse injury. PTA was coded in51 day, 1–7 days,

8–28 days and 29þdays. GCS scores were coded

into three levels: severe (GCS score 3–8), moderate

(9–12) and mild (13–15).

Finally, two health and socio-demographic ques-

tionnaires asked for details of health complaints

(or co-morbid conditions) and socio-demographic

details. The number of health complaints in this

paper was classified into 0, 1–2, 3–5, 6–10 and �11.

Socio-demographic information included gender

(male/female), age, education attainment (primary/

secondary/trade certificate/college diploma or

degree/university degree), partner status (single/

partnered/post-partnered (defined as those who

were separated, divorced or widowed), labour-force

participation (working full-time, part-time or

self-employed/unable to work/unemployed/out of

the labour-force—including students, homemakers

and those who were retired) and the extent of

caregiver support.

Procedure

After receiving the participant’s (or his/her repre-

sentative’s) informed consent, the interviewer

(a psychologist or trained interviewer) determined

if the participant was able to respond to the

self-report questionnaires independently. If yes, the

questionnaires were completed in the clinic or sent

and returned by mail. If no, participants completed

the questionnaire in a face-to-face interview or by

telephone. Administration mode was partly a func-

tion of local data collection protocol. Subject to this

caveat 71.3% self-completed the questionnaire

(30.2% at the clinic or hospital and 41.1% by

mail), 27.1% completed it in a face-to-face interview

and 1.6% over the telephone. Those with severe

disability (GOSE score 3–4) were significantly more

likely to have had the questionnaire administered in

a face-to-face interview, those with a moderate

disability (GOSE score 5–6) were more likely to

complete it through the mail and those with a good

recovery (GOSE 7–8) to complete it over the

telephone (�2¼ 59.76, df¼ 6, p50.01).

This study was approved by the local ethics

committees.

Statistical analyses

Missing data for categorical variables were not

imputted and list-wise deletion was used during

data analyses; for categorical variables missing data

varied between 0.1–8.8% of cases, the exception was

PTA with 16.7% missing. For scale scores (e.g. the

HADS) missing data was imputed using horizontal

mean imputation for up to 1/3 of items. Where41/3

of items were missing list-wise deletion was used.

Categorical data are presented as counts or

percentages and chi-square (�2) was used for the

analysis. Continuous variables are reported as means

and standard deviations (SD). Examination of

skewness revealed that all QOLIBRI scales were

statistically skewed. Therefore, all statistical analyses

were carried out on square-root transformed data

although non-transformed means and SDs are

presented for easy reader interpretation.

To compare between mean transformed scores on

the QOLIBRI scales, the paired t-test was used. For

differences between known groups QOLIBRI scale

scores (transformed) were analysed with analysis of

variance (ANOVA) and where omnibus statistical

significance was reported differences between known

groups were examined using the post-hoc Tukey

HSD (honestly significantly difference) test.

Pearson correlations were used to report relation-

ships between scale scores. Receiver operating curve

analysis (ROC) was used to examine the sensitivity

and specificity of the QOLIBRI total score and to

identify appropriate cut-points for suggested clinical

follow-up. Relative risks were calculated to quantify

the risk findings from the ROC analyses.

Consistent with Rothman [86] and Perneger [87],

the test value for the study was set at p¼ 0.05.


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Descriptive values (e.g. percentages) are reported

to 1-decimal place, standard deviations to 2-decimal

places and statistical values to 2-decimal places.

Data analysis was carried out in SPSS Version

15.0 [88].

Results

Population characteristics

There were six language groups and corresponding

countries: Finnish (n¼ 157, 19.7% of sample),

German (155¼ 19.5%), Italian (139¼ 17.5%),

French (France and Belgium; 148¼ 18.6%),

English (Australia, UK, USA; 97¼ 12.2%) and

Dutch (99¼ 12.5%).

Table I shows the injury and socio-demographic

details of participants. Almost three-quarters of

participants were middle-aged males. Almost half

of the participants were partnered and the common-

est education attainment was holding a trade

qualification. Almost two-thirds were living inde-

pendently and just under half were working. The

mean time at interview since TBI was just under

5 years (the range was 3–214 months). The most

common lesion sites were frontal and diffuse and the

highest proportion of cases persisted in PTA for a

month or more post-TBI. Finally, 58% were

classified with a severe brain injury according to

the GCS.

Current health and functional status

As Table II shows, most participants reported they

were in good health. This may be explained by both

impaired functioning after TBI and by health

complaints, as shown by the fact that 70% of

participants reported at least three health complaints

(see Table II). Although not shown in Table II,

self-reported health complaints involving 430% of

participants were a lack of energy (43.3%), a lack of

physical strength (37.3%), sleep disorders (37.2%),

vision problems (35.8%), headache or migraine

(35.7%), nervousness (36.1%), back pain (33.8%),

restricted movements (32.3%) and depression

(30.6%).

Table II also shows GOSE scores, revealing that

the most commonly reported levels were lower

moderate disability and upper moderate disability.

Regarding participants’ mental health status,

based on the HADS 19.2% reported moderate or

severe anxiety symptoms and 16.7% reported

depressive symptoms. The estimates in Table II

show the proportions for those meeting the criteria

for anxiety and depression only and the proportion

meeting the dual diagnosis criteria. The table also

shows that 53.7% of participants also needed a carer

for at least one activity of daily living.

The QOLIBRI total scores are presented graphi-

cally in Figure 1. This shows that the most

commonly obtained scores fell within the band

with 71–75% of maximum satisfaction and that the

data were skewed with a tail towards the lower

scores, indicating poor HRQoL for these

participants.

Age and gender

Table III breaks the QOLIBRI scale scores down by

age group and gender. The scales with the highest

Table I. Characteristics of participants.

Category %a

Gender Male 72.1%

Age Years (mean, SD) 39.0 (13.3)

Education attainment Primary 5.7%

High/Secondary 25.0%

Trade certificate 29.5%

College diploma/degree 23.4%

University degree 11.9%

Partner statusb Single 40.6%

Partnered 47.2%

Post-partnered 12.1%

Living arrangements Living independently 58.3%

Supported by partner,

family or carer

34.0%

Living in sheltered

accommodationc7.8%

Labour-force participationd Working 44.1%

Unable to work 10.2%

Unemployed 15.0%

Out of the workforce 30.8%

Time since injury

(interviewed)

Months (mean, SD) 59.9 (46.7)

Lesion sitee No lesion 14.9%

Frontal 32.6%

Posterior 20.6%

Diffuse 31.8%

PTAe51day 19.3%

1–7 days 23.9%

8–28 days 20.2%

29þdays 36.6%

Glasgow Coma

Scale classificationeMild (13–15) 32.1%

Moderate (9–12) 9.6%

Severe (3–8) 58.4%

aBase number of participants¼ 795. Percentages are validpercentages, after excluding missing cases and ‘other’ responses.Missing: gender (n¼ 0), age (0), education (89), partner status(52), living arrangements (74), labour force (96), time since injury(3), lesion site (10), PTA (133), GCS (0).bPartnered¼married or de facto; Post-partnered¼ separated,divorced, widowed.cSheltered housing, community housing, nursing home orhospital ward.dWorking¼ fulltime, part-time, self-employed; Unable towork¼ temporarily, permanently; Out of the labour-for-ce¼ homemaker, student, voluntary work, retired.eData from the medical record.


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scores were Emotions, Physical and Daily Life &

Autonomy. Lower levels of life satisfaction were

reported on the Social, Cognition and Self-percep-

tion scales (all statistically significantly different,

paired t-test values ÿ2.10 to 43.39, p50.04 for

all tests). The mean scores show that, regardless of

clinical outcomes, QOLIBRI scores systematically

varied by age on four scales and the QOLIBRI total

score with those aged 35–54 obtaining the lowest

QOLIBRI scores.

Table II. Current health and functional status of participants.

Category %a

Self-reported health status Excellent 7.1%

Very good 23.6%

Good 43.2%

Fair 22.4%

Poor 3.7%

Number of health complaints 0 8.2%

1–2 21.1%

3–5 31.3%

6–10 30.4%

�11 8.9%

GOSE scores 3; Lower severe disability 3.6%

4; Upper severe disability 14.3%

5; Lower moderate disability 29.7%

6; Upper moderate disability 24.8%

7; Lower good recovery 15.5%

8; Upper good recovery 12.1%

HADS anxiety & depression delineation Symptoms did not meet criteria 71.5%

Anxiety only (cut-point: 11þ) 11.8%

Depression only (cut-point: 11þ) 9.4%

Dual diagnosis (anxiety & depression) 7.4%

Carer status (needing help)c 0; Does not need help 46.3%

1; Help needed with 1 ADL task 20.1%

2; Help needed with 2 ADL tasks 13.8%

3; Help needed with 3 ADL tasks 9.6%

4/5; Help needed with 4/5 ADLs 10.2%

aPercentages are valid percentages, after excluding missing cases.bt-test compared with US population norms (50.00 (SD¼ 10)), t-value range from ÿ7.86 (95% CI:ÿ3.75–2.24) for Vitality to ÿ17.35 (95% CI: ÿ8.36 to ÿ6.66) for Role physical (all p50.01).cADLs were personal needs, mobility, daily activities, transportation and management of personal affairs.

Figure 1. QOLIBRI total score: distribution of mean scores on 0–100 scale.


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Only one of the scales (Physical) statistically

significantly varied by gender with males obtaining

scores higher than females. Regarding differences,

the scales with the largest differences between age

groups were the Physical problem scale (11-points

differences for males and 10-points for females), the

Daily Life and autonomy scale (7-points for males

and 9-points for females) and the Emotions scale

(5-points for males and 10-points for females).

QOLIBRI sub-scales and socio-demographic

variables

The relationship between key socio-demographic

variables and the QOLIBRI are presented in

Table IV. These data and the transformed analyses

suggest that Cognition, Daily life, Physical and the

QOLIBRI overall scales were sensitive to education

attainment. Post-hoc Tukey HSD analysis showed

Table III. QOLIBRI scale scores, by gender and age group.

Male Female All

QOLIBRI scale Age group n M SD n M SD n M SD

Cognition 17–24 years 94 62.68 21.39 37 63.61 15.97 131 62.94 19.95

25–34 160 64.29 20.78 54 64.19 20.98 214 64.26 19.95

35–44 126 60.23 22.02 46 58.85 23.12 172 59.86 19.95

45–54 103 56.35 23.31 51 59.21 19.19 154 57.30 19.95

55–69 89 60.49 22.31 34 62.04 27.43 123 60.92 19.95

All 572 61.11 21.96 222 61.51 21.37 794 61.22 19.95

Self 17–24 94 62.16 21.14 37 59.48 21.20 131 61.40 21.11

25–34 160 65.27 20.68 54 61.43 22.39 214 64.30 21.14

35–44 127 59.28 22.97 46 56.37 25.22 173 58.50 23.55

45–54 103 57.21 22.56 51 53.89 20.51 154 56.11 21.89

55–69 89 58.00 22.63 34 55.67 22.50 123 57.36 22.53

All 573 60.85 22.07 222 57.44 22.41 795 59.90 22.21

Daily life and autonomy 17–24 94 68.38 21.81 37 71.14 17.12 131 69.16 20.57

25–34 159 69.08 21.16 54 68.94 22.95 213 69.04 21.57

35–44 127 66.73 22.67 46 61.66 26.42 173 65.38 23.75

45–54 103 62.51 22.46 51 61.96 23.31 154 62.32 22.67

55–69 89 63.27 24.01 34 66.86 23.89 123 64.27 23.93

All 572 66.36 22.37 222 65.87 23.21 794 66.22 22.60

Social relationships 17–24 94 63.53 22.10 37 66.89 18.86 131 64.48 21.22

25–34 160 63.77 22.15 54 62.65 21.96 214 63.49 22.05

35–44 127 60.90 23.32 46 69.11 22.47 173 63.10 23.32

45–54 103 61.12 23.36 51 63.81 23.91 154 62.01 23.50

55–69 89 64.30 22.89 33 69.94 24.77 122 65.82 23.45

All 573 62.70 22.70 221 66.06 22.48 794 63.64 22.68

Emotions 17–24 93 73.71 25.06 36 65.03 29.34 129 71.29 26.50

25–34 160 74.59 23.55 54 66.39 23.46 214 72.52 23.74

35–44 126 70.78 24.27 46 70.11 31.65 172 70.60 26.35

45–54 102 70.25 23.91 51 68.63 23.86 153 69.71 23.82

55–69 89 73.26 24.09 34 74.89 24.70 123 73.71 24.17

All 570 72.62 24.09 221 68.77 26.55 791 71.54 24.84

Physical problems 17–24 93 71.80 21.89 37 65.88 23.58 130 70.12 22.45

25–34 160 72.05 21.76 54 67.15 21.77 214 70.81 21.82

35–44 127 70.95 21.75 46 60.00 27.67 173 68.04 23.88

45–54 103 61.32 23.84 51 60.56 24.13 154 61.07 23.86

55–69 89 69.00 24.62 34 69.01 25.68 123 69.00 24.81

All 572 69.36 22.88 222 64.23 24.56 794 67.93 23.46

QOLIBRI total 17–24 94 66.37 17.73 37 65.32 15.39 131 66.07 17.05

25–34 160 67.74 16.81 54 64.98 17.37 214 67.04 16.95

35–44 127 64.23 18.39 46 62.27 21.22 173 63.71 19.14

45–54 103 60.98 18.76 51 60.97 17.48 154 60.98 18.29

55–69 89 64.08 19.37 34 65.43 20.72 123 64.45 19.67

All 573 64.95 18.17 222 63.62 18.42 795 64.58 18.24

Statistics: ANOVA (transformed data): Cognition: Fmodel¼ 2.15, p¼ 0.06; Fage¼ 2.68, p¼ 0.03, Fgender¼ 0.15, p¼0.70. Self:Fmodel¼ 3.96, p50.01, Fage¼3.99, p50.01, Fgender¼ 3.17, p¼ 0.08. Daily life and autonomy: Fmodel¼2.06, p¼ 0.07, Fage¼ 2.57,p¼ 0.04, Fgender¼ 0.01, p¼ 0.97. Social relationships: Fmodel¼1.17, p¼ 0.32, Fage¼ 0.64, p¼ 0.64, Fgender¼ 3.48, p¼ 0.06. Emotions:Fmodel¼ 1.28, p¼ 0.27, Fage¼ 0.82, p¼ 0.51, Fgender¼2.86, p¼0.09. Physical problems: Fmodel¼ 5.10, p50.01, Fage¼4.64, p50.01,Fgender¼ 5.73, p¼ 0.02. QOLIBRI total: Fmodel¼2.29, p¼ 0.04, Fage¼ 2.65, p¼ 0.03, Fgender¼ 0.58, p¼ 0.45.Note: Fmodel is the overall F for each ANOVA.


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Table

IV.QOLIB

RIscale

scoresbydem

ographicsandself-rep

orted

healthstatus.

n

Cognition

Self

Dailylife

andautonomy

Socialrelationships

Emotions

Physicalproblems

QOLIB

RItotal

MSD

MSD

MSD

MSD

MSD

MSD

MSD

Educationattainmen

tPrimary

42

52.00

23.23

50.37

24.52

54.46

22.48

62.60

23.99

67.38

25.76

58.04

23.08

56.79

19.29

High/Secondary

185

60.40

22.40

62.01

21.20

66.83

21.94

64.30

23.00

69.88

25.02

69.06

23.41

64.92

18.04

Tradecertificate

218

62.06

21.92

60.76

21.76

66.53

22.13

64.58

21.87

72.49

24.21

67.82

24.11

65.21

18.28

College

173

61.42

21.61

59.83

22.72

64.88

24.02

64.09

23.38

72.91

25.37

67.43

22.95

64.62

18.72

University

degree

88

66.31

20.84

60.58

23.17

72.94

21.32

64.84

22.49

77.12

22.32

74.57

21.98

68.74

17.61

F¼2.49,p¼0.03

F¼1.78,p¼0.11

F¼4.20,p5

0.01

F¼0.05,p¼0.99

F¼1.7,p¼0.13

F¼3.06,p5

0.01

F¼2.43,p5

0.03

Partner

status

Single

302

62.97

20.64

61.78

21.11

67.01

21.30

61.54

21.44

72.68

24.18

71.25

21.60

65.65

16.98

Partnered

351

60.34

23.23

59.84

22.61

66.66

23.99

67.97

22.50

72.64

24.19

66.43

24.92

65.15

19.21

Post-partnered

90

60.26

21.62

56.61

23.22

63.40

22.74

59.88

24.57

68.22

27.09

66.58

23.20

62.03

18.91

F¼1.13,p¼0.32

F¼1.85,p¼0.16

F¼1.02,p¼0.36

F¼8.78,p5

0.01

F¼0.94,p¼0.39

F¼3.06,p¼0.05

F¼1.33,p¼0.26

Livingarrangem

ents

Indep

enden

t420

64.41

21.36

62.62

21.34

71.95

20.60

66.53

22.18

74.95

23.76

72.26

22.14

68.32

17.39

Supported

245

55.21

22.19

55.89

22.54

56.78

23.48

60.76

23.26

68.51

24.60

61.27

24.10

59.07

18.51

Sheltered

56

62.44

20.54

58.50

23.47

62.84

20.46

61.98

22.52

65.27

26.20

69.73

23.11

63.06

17.67

F¼14.27,p5

0.01

F¼7.51,p50.01

F¼38.74,p5

0.01

F¼5.24,p5

0.01

F¼8.82,p5

0.01

F¼17.40,p5

0.01

F¼21.35,p5

0.01

Labour-forceparticipation

Working

308

65.68

21.05

66.04

19.96

73.93

21.42

69.47

20.45

77.59

22.36

74.57

21.99

70.66

17.17

Unable

towork

71

55.48

25.65

51.83

26.14

54.84

24.41

55.48

24.97

64.64

25.58

56.41

25.69

56.05

20.47

Unem

ployed

105

57.01

20.55

56.73

21.22

61.05

19.94

60.17

23.10

66.64

26.86

65.44

22.13

60.67

17.02

Outofworkforce

215

58.94

21.58

56.29

22.51

62.30

22.24

62.01

23.86

68.94

25.00

65.28

23.34

61.78

17.90

F¼8.30,p50.01

F¼14.04,p5

0.01

F¼25.16,p5

0.01

F¼10.35,p5

0.01

F¼10.54,p5

0.01

F¼16.00,p5

0.01

F¼21.43,p5

0.01

Self-reported

healthstatus

Excellen

t55

73.83

21.17

77.13

21.23

80.11

20.13

74.09

20.79

77.48

24.83

81.95

19.23

77.07

18.07

Verygood

184

70.97

19.61

69.61

19.80

78.62

18.64

71.22

21.59

82.24

18.15

80.68

16.76

74.97

15.16

Good

337

60.86

19.37

60.80

17.37

66.44

18.24

63.58

20.94

71.55

24.41

69.42

20.62

64.95

14.44

Fair

175

52.53

19.72

48.07

20.85

53.44

21.91

56.53

20.74

63.16

24.10

52.48

23.37

53.96

15.69

Poor

29

31.55

21.96

23.40

22.52

33.04

26.35

35.57

25.32

40.18

26.40

37.11

19.45

32.92

16.07

F¼41.15,p5

0.01

F¼63.67,p5

0.01

F¼61.80,p5

0.01

F¼25.54,p5

0.01

F¼29.06,p5

0.01

F¼62.52,p5

0.01

F¼81.35,p5

0.01

Statistics:

ANOVAadj.

Forfulldefinitionsofco

dingseethenotesto

TablesIandII.


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that the statistically significantly group was those

who had achieved primary school level education

only; they obtained significantly lower Cognition

scores when compared with those with trade of

university qualifications ( p¼0.05 and p50.01,

respectively). For Daily life primary school-level

attainment was significantly lower than all other

education attainment levels ( p50.04 for all compar-

isons) and for Physical primary school attainers

obtained scores that were significantly below those of

university attainers ( p50.01). Finally, on the

QOLIBRI total scale there were statistically signifi-

cant differences between primary school attainers

and those with trade and university qualifications,

the latter having higher scores ( p¼ 0.04 and

p50.01).

There were also significant differences by partner-

ship status on the Social and Physical scales. When

compared with those who had never partnered, those

with a partner obtained scores that were significantly

higher on the Social scale (Tukey HSD, p50.01).

Similarly the partnered obtained scores that were

statistically significantly higher than the post-

partnered ( p50.01). On the Physical scale those

who were single obtained scores significantly higher

than those with a partner ( p¼ 0.04). There were no

other significant differences by relationship status.

There were statistically significant differences on

all QOLIBRI scales by participants’ living arrange-

ments. Across all QOLIBRI scales the highest scores

were obtained by those living independently and for

all scales these scores were statistically higher than

those obtained by those living at home with the

support of their family or a caregiver (Tukey HSD,

p50.01 for all comparisons). There were no

statistically significant differences on the QOLIBRI

scales between those living at home with family or

caregiver support and those living in sheltered

accommodation, other than the Physical Problems

scale (Tukey HSD, p¼ 0.03).

There were also statistically significant differences

on all QOLIBRI scales by labour-force participation.

On all scales those who were working obtained

scores which were statistically significantly higher

than those of any other group. For the Cognition,

Self, Social relationships and Emotions scales there

was no statistically significant difference between

those who were unable to work, who were unem-

ployed or who were out of the workforce. For the

Daily living and autonomy and the QOLIBRI total

score, those out of the labour-force obtained scores

significantly higher than those unable to work

(Tukey HSD, p¼ 0.04 and p¼ 0.05, respectively)

and on the Physical problems scale those who were

unemployed obtained scores significantly higher

than those who were unable to work.

QOLIBRI sub-scales and functional outcome

Figure 2 shows QOLIBRI scores by GOSE classifi-

cations. As shown, there were statistically significant

differences between the QOLIBRI scales at all levels

of GOSE functional outcome. Across the GOSE,

there were different patterns among the QOLIBRI

scales, suggesting that different scales are differen-

tially sensitive to different levels of functioning. The

increasing breadth of the 95% CIs with lower levels

of GOSE is a function of the smaller numbers of

cases in these GOSE classification levels (at GOSE

level 3 there were 29 cases). A possible concern,

however, is with the non-monotonicity by GOSE

level 3 scores, but as shown in the Tukey HSD post-

hoc tests there was no statistically significant

difference between QOLIBRI scores on any of the

QOLIBRI scales by GOSE level 3 vs. levels 4 and 5.

In general, the Tukey HSD post-hoc analyses

suggest that the QOLIBRI scales, although mono-

tonic with the exception above, are not particularly

sensitive to different levels of functional outcome,

except at the more disabled (e.g. level 4) and good

recovery levels (levels 7 and 8).

Mental health

Figure 3 shows the relationship between the

QOLIBRI scales and the mental health of partici-

pants as assessed by the HADS, using the cut-points

for the delineation of probable anxiety and depres-

sion. As shown, all scales were statistically signifi-

cantly sensitive to participants’ mental health status.

Cognition and Physical were more sensitive to

anxiety than to depression, but the other QOLIBRI

scales were equally sensitive to the two mental health

states. The data in Figure 3 suggests there are three

distinct bandwidth scores for mental health: those

who do not meet the HADS criteria for probable

anxiety or depression, those who meet the criteria for

one or the other and those who meet the criteria for

dual diagnosis.

Receiver operating curve (ROC) analysis was used

to explore the optimum cut-points delineating

probable anxiety and depression. For identification

of those meeting the HADS cut-points of anxiety,

depression or both, the optimum cut-point was 60

on the QOLIBRI total scale. This provided an area

under the curve (AUC) of 0.83, sensitivity of 0.75

and specificity of 0.75. For persons with a TBI

obtaining a QOLIBRI overall score560, the relative

risk (RR) of probable anxiety, depression or dual

diagnosis was 3.12 (95% CI: 2.64–3.69). For those

with dual diagnosis only, the optimum cut-point was

40 on the QOLIBRI overall scale. The AUC¼ 0.86,

sensitivity¼0.94, specificity¼ 0.58 and the

RR¼ 12.34 (95% CI: 7.70–19.78).


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A feature of all the tables and figures is that the

standard deviations were typically �20% of

the QOLIBRI scale range. This implies that within

the known groups analysed or within the bandwidths

described there was considerable variation in

QOLIBRI scores. For example, consider the varia-

tion in data on the GOSE presented in Figure 2. The

implication is that within these classifications some

cases obtained scores on the QOLIBRI indicating a

higher HRQoL than might be expected for their level

of disability and others a lower HRQoL than might

be expected for their level of disability and others a

lower quality-of-life. Two case studies illustrate this

and their scores on each of the QOLIBRI scales are

shown in Figure 4.

Case reports

Case 1. A 38-year-old electrician had a very severe

TBI in a motor vehicle incident. Fourteen years after

the injury he still has left hemiparesis, dysarthria and

severe problems in executive functions, memory,

slowness, uncontrollable laughter and poor beha-

vioural control. Today, he needs a great deal of help

from his parents on a daily basis.

He was offered support and services immediately

after his injury. Multi-professional rehabilitation

started at the hospital and is still ongoing. His

social outcome is optimal considering his restrictions

and he has reached the goals in life he has set for

himself. Last year he managed to move into his own

apartment in the same house that his parents live in.

He has met a girlfriend and is engaged to get

married. He regularly participates in social and

leisure activities, including music, sports and the

activities of the local brain injury association. In the

QOLIBRI open-ended questions he wrote: ‘I have

learnt to speak and walk, I got home from the

hospital. I live in my own apartment. I’m happy

Post-Hoc tests, Tukey HSD (the largest p-value of the sub-set is shown)

Cognition GOSE level 3 < 8 (p=0.01); 4 < 6, 7, 8 (p<0.02); 5 < 7, 8 (p<0.01); 6 > 4, <7, 8 (p<0.02); 7 > 4, 5, 6<8(p=0.02); 8 > 3, 4, 5, 6, 7 (p=0.02)

Self GOSE level 3 < 8 (p<0.01); 4 < 6, 7, 8 (p<0.01); 5 < 6, 7, 8 (p=0.01); 6 > 4, 5, <8 (p=0.01); 7 > 4, 5,<8(p<0.01); 8 > 3, 4, 5, 6, 7 (p<0.01)

Daily life & autonomy

GOSE level 3 < 6, 7, 8 (p<0.01); 4 < 6, 7, 8 (p<0.01); 5 <7, 8 (p<0.01); 6 > 4, <7, 8 (p<0.01); 7 > 3, 4, 5, 6 <8(p<0.01); 8 > 3, 4, 5, 6, 7 (p<0.01)

Social relationships

GOSE level 3 <7,8 (0.02); 4 < 6, 7, 8 (p<0.01); 5 < 7, 8 (p=0.04); 6 > 4 (p=0.02); 7 > 4, 5 (p=0.04); 8 > 4, 5 (p<0.02)

Emotions GOSE level 3<8 (0.04); 4 < 7, 8 (p<0.01); 5 < 8 (p<0.01); 6 < 8 (p=0.01); 7 >4 (0.01); 8 > 3, 4, 5, 6 (p=0.04)

Physical problems

GOSE level 3 < 7, 8 (p=0.01); 4 < 6, 7, 8 (p=0.01); 5 < 7, 8 (p<0.01); 6 > 4, <7, 8 (p=0.01); 7 > 3, 4, 5, 6, <8 (p=0.01); 8 > 3, 4, 5, 6, 7 (p<0.01)

QOLIBRI total

GOSE level 3 < 7, 8 (p=0.01); 4 < 6, 7, 8 (p<0.01); 5 < 6, 7, 8 (p=0.04); 6 > 4, 5,< 7, 8 (p=0.04); 7 > 3, 4, 5, 6, <8 (p=0.01); 8 > 3, 4, 5, 6, 7 (p<0.01)

90

80

70

60

Me

an

sca

le s

co

re (

95

%C

ls)

50

GOSE Classifications

Cognition

Self



Emotions

Physical problems

QOLIBRI Total

40

30

Lower SD

(N=29)

Lower MD

(N=236)Upper MD

(N=197)Lower GR

(N=123)

Upper GR

(N=96)Upper SD

(N=114)

Figure 2. QOLIBRI scale scores by GOSE classification; SD¼ severe disability; MD¼moderate disability; GR¼ good recovery. Statistics

ANOVA F¼9.55–38.77, all p50.001.


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Cognition Under thresholds > Anxiety, Depression, Dual diagnosis (p=0.01); Anxiety, Depression > Dual diagnosis (p=0.01).

Self Under thresholds > Anxiety, Depression, Dual diagnosis (p=0.01); Anxiety, Depression > Dual diagnosis (p=0.01).

Daily life& autonomy

Under thresholds > Anxiety, Depression, Dual diagnosis (p=0.01); Anxiety > Depression, Dual diagnosis (p<0.01).,

Social Under thresholds > Anxiety, Depression, Dual diagnosis (p=0.01); Anxiety > Depression, Dual diagnosis (p<0.01).

Emotions Under thresholds > Anxiety, Depression, Dual diagnosis (p=0.01); Anxiety, Depression > Dual diagnosis (p=0.03).

Physical Under thresholds > Anxiety, Depression, Dual diagnosis (p=0.01); Depression > Dual diagnosis (p<0.01)

QOLIBRI Under thresholds > Anxiety, Depression, Dual diagnosis (p=0.01); Anxiety, Depression > Dual diagnosis (p<0.01).

90

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cale

score

(95%

Cls

)

50

HADS Classifications

Cognition

Self



Emotions

Physical problems

QOLIBRI Total

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30

20

Under thresholds

(N=564)

Anxiety only

(N=93)

Depression only

(N=74)

Dual diagnosis

(N=58)

Figure 3. QOLIBRI scores by anxiety and depression (HADS). Statistics ANOVA F¼ 49.99–114.19, all p50.001.

Cogniti

onSel

f

Dai

ly li

ving a

nd auto

nomy

Social

rela

tionsh

ip

Emotio

ns

Physic

al p

roble

ms

0.00

Case 2: GOSE 6

Case 1: GOSE 4

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70

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QOLIBRI all cases

QOLIBRI scales

Me

an

pe

rce

nta

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sc

ore

s (

SD

s)

Figure 4. Six QOLIBRI sub-scales mean scores and standard deviations in two illustrative cases. Case 1: GOSE 4 and high QoL: case 2:

GOSE 6 and lower QoL.


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because my parents have been able to support me.

I met my companion. My friends disappeared. Some

people do not understand me’.

On the GOSE he was rated 4 (severe disability:

upper level). However, according to the QOLIBRI,

he rated his HRQoL quite high, obtaining an overall

QOLIBRI score of 74%.

Case 2. A 42-year-old secretary was injured 8 years

earlier in a fall. Neuropsychological assessment

revealed problems with fatigue, attention, memory,

slowness of cognitive processing, executive functions

and emotional reactions. She is independent at home

and is able to perform everyday tasks.

Her functioning was not assessed after the injury

and she did not receive any rehabilitation. Her post-

traumatic personality changes led to problems with

her family and friends. Her self-esteem is low and she

is constantly faced by goals she is unable to reach. She

participates in social and leisure activities much less

than before the injury. She returned to her previous

work 6 months after the injury but was no longer able

to perform as previously. However, she tried to

continue at work for years. Her functional status

was assessed only 8 years after the accident and then a

4 hour per day work trial was organized. She wrote:

‘After the accident I felt stupid and I performed

slowly. Then started the typical demands that are

placed upon present day workers: more work,

courses, more, more! I did not have enough strength,

and due to my many absences from work I was sent

for an examination’. The GOSE rating was 6

(moderate disability: upper level). On the overall

QOLIBRI her self-rated HRQoL was low at 45%.

Consistent with the case study information,

Figure 4 shows that case 1 obtained a Self score

above 1-SD above the usual QOLIBRI Self score,

indicating a very positive and unusual outcome,

whereas his scores on Emotions and Physical

problems scale were almost identical with the

generally obtained outcomes. In contrast, case 2

reports a very poor satisfaction on Cognition and

Daily living and autonomy; both of which were well

below the usual TBI outcomes. Similarly, her Self

score was �0.5 SD below the mean score, yet she

obtained scores on Emotions and Physical problems

scales that were typically generally obtained. Perhaps

importantly she did not receive rehabilitation and it

may be that professional support targetting these

three areas of her life would have benefited her.

Discussion

The development and validation of the QOLIBRI,

a disease-specific instrument for measuring

HRQoL after TBI has been comprehensively

described [78–82]. This paper describes preliminary

clinical experience with the QOLIBRI and how

QOLIBRI scores may be interpreted in clinical

situations. QOLIBRI scores were examined by

various socio-demographic indicators—especially

by age, gender and education, since any variations

would have importance in how a clinician or

researcher interpreted participant scores—and also

by known indicators of functional outcome, health

status and mental health.

The results show that (contrary to prevailing

clinical judgement) assessment of HRQoL in TBI

patients is feasible and a valid approach. The

QOLIBRI is the first disease-specific scale for

assessing HRQoL in TBI patients. According to

experience, it can be completed by either

self-assessment or personal/telephone interview

within 10–20minutes in most cases.

It was further found that demographic factors

(age, gender, education), as well as living situation

and particularly mental health were all associated

with perceived HRQoL.

The participants reported highest level of satisfac-

tion in the Emotions, Physical problems and Daily

living and autonomy scales. Lower levels of satisfac-

tion were reported on the Social relationships,

Cognition and Self scales. The highest scores were

obtained by the youngest participants aged 17–34.

Participants living independently without the help of

family members or other caregivers were significantly

more satisfied than participants needing help. People

who were working obtained higher scores on all

QOLIBRI scales than people not working. Those

results were expected and coherent with the

literature.

The results from this study do not constitute

norms because of the variable sampling methods in

time and place. The observed standard deviations of

the QOLIBRI scale ranges, varying from 15–29%,

is typical of HRQoL instruments where population

norms have been published, such as for the AQoL

[89], the EQ5D [90], SF-36 [91, 92] or the

WHOQOL-BREF [93]. The statistically significant

differences of up to 11% of the QOLIBRI scale

scores observed by age group and gender on

QOLIBRI scores (Table III) may have important

clinical implications and should alert clinicians and

researchers to the fact that such criteria may need to

be age- and gender-specific. This advice is not

unique to the QOLIBRI and differences by age and

gender have been reported elsewhere for other QoL

or health status instruments [90–93]. Whether

differences in QOLIBRI ratings may also have

been caused by method effects (e.g. translation

artifacts), different health care service provision

and support or other cultural factors (such as


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differences in the underlying populations in which

TBIs occur) remains uncertain.

The finding that there were across the QOLIBRI

scales no significant difference between those sup-

ported at home and those living in sheltered

accommodation was surprising. Generally, the

expectation is that people move into sheltered

accommodation when their condition deteriorates

to the point where family and caregivers can no

longer cope—typically caused by behavioural dis-

orders. The findings in Table IV may suggest that

the professional care provided by sheltered accom-

modation offsets the attractions of living at home

with family care. If this is the case, given that family

care is less expensive than institutional care, it would

suggest that more resources may be needed to

support at home care for patients with TBI, although

this clearly needs further research.

Return to work following a TBI has been

intensively studied ever since English’s [94] seminal

paper and work status is one of the most consistent

predictors of TBI HRQoL [23, 25, 26, 36]. A key

issue is whether a person returns to work at the same

occupational level, whether he/she returns to full or

part-time work, in a normal environment or in a

sheltered work centre. Those with a severe

TBI-related impairment may not necessarily express

much distress if their impairment has no specific

meaning in their situation, such as the use of a

wheelchair for a job which does not require walking

autonomy. In contrast, a mild disability such as

subtle limitations in executive functions may prevent

return to a demanding job causing a low perceived

HRQoL, as in Case #2 above. In the present study

43% of participants returned to work, which is

comparable to other studies reporting on severely

injured patients. Although no information on the

level of work was collected, elsewhere it has been

reported that many return to work at a lower level or

part-time work, frequently involving lower income

[5, 16, 23, 24, 36].

For mental health the QOLIBRI scale scores were

extremely sensitive to anxiety and depression classi-

fication on the HADS. Although the QOLIBRI does

not assess anxiety or depression, the ROC analysis

of the data in Figure 3 suggests that low scores on

the QOLIBRI overall scale should alert clinicians to

the possibility that those scoring560 may meet the

HADS criteria for probable anxiety or depression.

Similarly, those with scores 540 may meet the

criteria for a dual diagnosis. On the basis of these

findings it would seem prudent for clinicians to

recommend that patients with TBI with scores below

these thresholds are screened for their mental health

status and treated if they meet clinical criteria for

anxiety, depression or a dual diagnosis, consistent

with the guidelines espoused by Wagner and

Vickery [95].

The observed variability in QOLIBRI ratings

within and between the GOSE categories is of

importance and of great relevance, as the implication

is that different perspectives on outcome are

captured by the two approaches. Regarding the

modest sensitivity of the QOLIBRI by functional

outcome (Figure 2), whether this is a function of the

QOLIBRI scales per se or of the GOSE is unknown.

Although the GOSE was developed to overcome

perceived insensitivity of the GOS, it is possible that

the revised version is still relatively insensitive to

subtle changes in functional status [57]. If the GOSE

is insensitive to functional outcome classification in

the mid-ranges (levels 5, 6 and 7), then this may

explain the findings presented in Figure 2; viz., that

the QOLIBRI scales appear to be not particularly

sensitive to disability levels. In this sense, it is

possible that the GOSE may not be an appropriate

criterion for assessing the sensitivity of HRQoL or

life satisfaction scales, although this is in need of

further research.

Alternatively, those with lower GOSE scores,

indicating poorer functional outcome, obtained

QOLIBRI scores that were non-monotonic and not

statistically different to those with somewhat better

recovery. This is consistent with at least one other

report suggesting that more severely disabled

patients had a better HRQoL than those who were

moderately disabled [23]. This could be explained

by the ‘disability paradox’ [96, 97] based on

anosognosia and better support provided to severely

injured people when compared to those moderately

injured.

The two case studies (Figure 4) illustrate the

possible gap between HRQoL and functional out-

come; a person with severe disability (from an

external perspective) could report a rather good

HRQoL, as in case #1, whilst the opposite is also

possible, as in case #2. The extent to which these

assessments are influenced by the environment,

rehabilitation and support is unknown, although

the literature suggests they may be important

[25, 75]. The results for accommodation

(Table IV) might suggest these have a major role

to play.

Finally on this topic, it may be that the

non-monotonic QOLIBRI scales scores for those at

GOSE level 3 may indicate that at this level of

disability participants lack the necessary insight to

provide reliable assessments of their own condition

and that for those with this level of disability proxy

reports might be preferred. This is speculation and

needs further research.

The discordance between QOLIBRI and GOSE

ratings raises the fundamental question of what


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clinically the most relevant outcome measure is:

functional outcome assessed by professionals or the

quality-of-life perceived by the patient. The authors

submit that both perspectives are relevant and would

encourage the further development of a multidimen-

sional approach to outcome assessment for use in

clinical studies.

As shown in Tables III and IV and in Figure 4,

observed standard deviations varied between

15–29% of the QOLIBRI scale ranges, which is

typical of HRQoL instruments as noted above.

There are, however, two important consequences

in addition to those reported above. The first relates

to the required sample size needed in clinical trials.

Where a large difference as a result of the interven-

tion is expected, the sample could be quite small; but

where smaller gains are expected the sample size

would need to be carefully calculated. The second

clinical consequence is in relation to using the

QOLIBRI at the individual patient level. The large

standard deviations suggest that reliable change

scores [98] at the patient level would need to be

very large, requiring improvements of �30% of the

QOLIBRI scale range.

Figure 4 shows a third method of interpreting

individual patient scores for the identification of

those who need professional clinical help. The scores

obtained by cases 1 and 2 show that on some

QOLIBRI scales these scores were outside the

normal range of expected scores. Patients obtaining

such scores should be carefully monitored and,

where warranted, interventions targeted at these

areas, such as the provision of further rehabilitation.

Figure 4 presents QOLIBRI mean scores and

standard deviations; elsewhere it has been argued

that the threshold for changes in HRQoL in chronic

disease is �0.5 SD [99]. By these criteria, case 2

shown in Figure 4 should be identified by her

treating clinician as being in need of further

health-care intervention.

The previous two papers regarding the develop-

ment of the QOLIBRI’s descriptive system and

psychometric validity are complemented by the

findings reported in this paper regarding its sensi-

tivity to known groups (Tables III and IV). It

assesses life satisfaction rather than health function

and is sensitive to functional outcome (Figure 2) and

mental health (Figure 3). Importantly, this paper has

shown that these relationships can provide guidelines

for clinicians and researchers relating to the collec-

tion of data for those who are cognitively impaired,

follow-up rehabilitation, screening for mental health

conditions and the interpretation of the meaning of

differences or gains in QOLIBRI scale scores,

including advice for handling difficulties at the

individual patient level. Together these findings

suggest that the QOLIBRI is a valid life satisfaction

outcome measure in TBI which may have a useful

role in clinical practice or research.

Limitations

One important limitation of any HRQoL measure

is the complexity of the HRQoL concept. It is very

difficult to define and then capture self-perceptions,

view of the future, individuality and the experience

of intimacy. And in so doing it is very difficult not to

be intrusive. The authors wished to accommodate

both what may be measured in a well-validated

multiple-choice questionnaire via a 5-point scale and

important qualitative information and statements

provided by the responder during and after complet-

ing the questionnaire.

Moreover, open-ended questions give the clinician

useful information about issues such as values and

important topics in patients’ lives. For that reason,

in all language groups, during the developmental

process after completing the first version of the

questionnaire, the participant was asked: ‘Would

you assess your HRQoL in other areas important to

you, which were not mentioned in the questionnaire

(such as religion [100], pets [101] and accommoda-

tion)?’ and secondly the question, ‘Would you tell

me examples of the happiest and unhappiest

moments after injury?’ gives useful information

concerning participation and social integration:

family, hobbies and moments of success or distress.

Many patients with TBI have significant problems

with communication, insight, anosognosia and

denial, all of which may affect the understanding of

questions and the validity of responses.

Although this study has not examined these, they

can be assessed and their importance judged. For

example, anosognosia can be measured by the PCRS

[102] or by comparing the patient’s and the

significant other’s responses or to the pre-traumatic

situation [103–105]. This was done in the French,

German and Italian samples.

A major limitation of this study is that clinical

conclusions from the data are restricted by the

approaches to recruitment. The primary aim of this

convenience sample was to investigate psychometric

properties and validate the QOLIBRI scale across a

wide range of settings. It was deliberately chosen to

recruit participants from different settings and at

variable times after injury. Consequently the sample

was ‘scale-oriented’, rather than ‘patient-focused’.

The study was not designed to assess specific cohorts

or at fixed time periods after injury. Thus, inter-

pretation of clinical findings and comparisons

between groups should be done with caution.

Notwithstanding this caveat, the results do provide

insight and permit general conclusions.


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In addition, this study was an organizational

challenge since it involved sampling participants

from across six different language groups and

14 research centres. As shown, there were differ-

ences in the recruitment strategies between the

centres which may have affected the results. It is

also possible that there were language differences

attributable to either different health cultures or

translation differences among the items.

QOLIBRI: Clinical use and further development

Because HRQoL is perceived by patients them-

selves, consistent with the WHO definition [8], it

should preferably be assessed via self-report.

Although clinicians may be well aware of the

physical impairments, limitations and restrictions in

patients’ health-related functioning, the literature

suggests they have less insight when it comes to the

social, personal and intimate aspects of peoples’ lives

[106]. The TBI-specific QOLIBRI meets this need

through capturing the patient subjective perspective

and providing evidence which can be used alongside

objective clinical indicators.

At an individual level, an ideal clinical tool would

be a brief questionnaire that could be presented to

the patient for rapid self-completion in less than

20minutes. It would meet the requirements of

clinicians overwhelmed by the accumulation of

measures. The QOLIBRI is reasonably short at 37

items and it is at least as easy to understand and

complete as generic HRQoL tools which have been

used in patients with TBI such as the SF-36 or EBIQ

[13, 16, 66, 74–76]. In addition the QOLIBRI poses

questions in a positive fashion, with a unidirectional

5-point response option. Thus, items do not focus

only on disabilities which help patients to identify

not only weaknesses but also their strengths and the

impact on their own life situation. This is in line with

recent research arguing that rehabilitation is more

effective when it enhances strengths and facilitates

adjustment than when it tries to compensate for

deficiencies [7].

The QOLIBRI may be given as soon as the patient

is aware enough to respond appropriately. However,

the value of HRQoL assessment increases with time

since injury. Since the QOLIBRI is a multidimen-

sional questionnaire, beyond the QOLIBRI total

score the six sub-scale scores provide additional

information, as illustrated by Figure 4. Similarly, a

very detailed profile can be constructed by examin-

ing responses to individual items. A further step can

be added with open-ended questions. These three

further steps from the total score enrich significantly

the HRQoL profile of one patient with TBI.

Improving patients’ HRQoL is one of the main

and ultimate goals of TBI rehabilitation. On an

individual level asking patients for their subjective

opinion is crucial to prioritizing therapeutic goals,

taking into account their personal needs, values and

hopes and improving goal attainment. It also

facilitates the therapeutic alliance, thus helping the

participant to build a new life via a new ego-identity,

in his/her own cultural, social and environmental

context [3, 21, 33, 107].

In addition, QOLIBRI data allow those respon-

sible for the care of patients with TBI to assess

individual progress or regression—through the

patients’ subjective perception. This perception can

assist with assessing and comparing programmes of

service delivery and their cost-effectiveness. This can

influence policy-making in the field of rehabilitation.

Further, HRQoL assessment has much to contribute

to clinical trials for drugs or psychotherapies and to

epidemiological studies.

The authors’ experience, through the validation

process, is that the QOLIBRI can provide a rapid yet

comprehensive screening of patient limitations and

needs [79], thus obtaining the necessary data for

these purposes. Moreover, the main admission

criteria intuitively designed in TBI re-entry French

facilities (ADEF-residences) were behavioural pro-

blems, autonomy and help needed, co-morbidity

and disability: they are very similar to the five main

factors of HRQoL measured by the QOLIBRI at a

mean time of 5 years since injury and explaining

59% of the variance; depression, amount of help

needed, co-morbidity, anxiety and GOSE [81, 108].

The QOLIBRI is now considered ready for more

routine use in clinical studies on TBI. Determination

of the added value, its position in relation to other

outcome measures and influences of cultural and

language differences can only be accomplished in

prospective studies of consecutive cohorts with

assessments at fixed pre-determined times.

Conclusion

The evidence presented in recent publications on the

development and psychometric validity of the

QOLIBRI combined with the clinical experience

reported in this paper demonstrate it as a valid

instrument for assessing patient reported outcomes

in TBI for both clinical practice and research.

The QOLIBRI is a unique TBI-specific measure

of HRQoL. It provides information about patients’

subjective views of their own lives and complements

traditional measures of disability and recovery. This

paper has shown how it may be used at the clinical

level, including discussion of when it is appropriate

to use it, how it may be interpreted and how scores

may assist clinicians with decision-making.


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It captures life satisfaction rather than health

function and is sensitive to disability and mental

health, demographic and socioeconomic factors.

Importantly, it captures a different perspective on

outcome than is provided by GOSE assessments

performed by professionals.

Although more studies are needed, particularly on

use of a proxy version mainly in severely impaired

patients with TBI and pre–post studies to investigate

its responsiveness, the findings from this study

suggest that clinicians and researchers may find the

QOLIBRI a useful instrument for eliciting the

patient perspective in TBI recovery, rehabilitation

and research.

Acknowledgements

We warmly thank Muriel Lezak, Neil Brooks for

their wise counselling while reviewing our manu-

script, Klaus von Wild who initiated the QOLIBRI

process and led so many teams throughout the world

to participate, Eddy Neugebauer who organized the

first meeting on TBI QoL, Nicole von Steinbuchel,

head of the yMethodological Centre and her

colleagues, our *Steering Committee chaired by

Jean-Luc Truelle and the numerous persons after

TBI who participated in our study. We also want to

thank the collaborating investigators in the following

countries: Argentina (Armando Basso, Bianca

Saucedo, Irene Taussik), Australia (Graeme

Hawthorne, Andrew Kaye, Russell Gruen),

Belgium (Christine Croisiaux, Andrew Maas*,

Marie-Claire Moes), Brazil (Lucia Braga), China

(Huiling Huang, Cui Lihua, Wai Sang Poon, Zhang

Tong), Denmark (Anne-Lise Christensen, Bjarne

Pedersen), Finland (Jaana Sarajuuri, Sanna

Koskinen), France (Philippe Azouvi, Laurence

Bilz, Frederique Etcharry-Bouyx, Michele

Montreuil, Pierre North, Anne Passadori, Karine

Pinon, Eva Tazopoulou, Jean-Luc Truelle*, Claire

Vallat-Azouvi), Germany (Henning Gibbonsy,

Stefan Hofery, Edmund Neugebauer, Nadine

Sasse, SilkeSchmidty, Nicole von Steinbuchel*y,

Klaus von Wild*, Wolfgang Woernery, Robert

Behr, Stefan Bodenburg, Wolfgang Deinsberger,

Manfred Holzgraefe, Ingo Keller, Gerhard Muller,

Hendrik Niemann, Veit Rohde, Stefan Semisch,

Gabriele Seseke, Klaus Michael Sturmer, Werner

Petereit, Wolfgang Puschendorf) Greece (Eva

Tazopoulou), Indonesia (Eka Wahjoepramono),

Italy (Renato Avesani, Maria Grazia Di Stefano,

Rita Formisano, Giordano Gatta, Eloıse Longo,

Lucia Lucca, Mauro Mancuso, Claudio Perino,

Maria Grazia Piscaglia, Pietro Salvi), Lithuania

(Rimantas Vilcinis), Japan (Yoichi Katayama,

Takeshi Maeda), Netherlands (Wilbert Bakx, Jan

Geursten, Peter Vos), Poland (Maria Pachalska),

Portugal (Alessandro Castro-Caldas, Sandra

Guerreiro), Romania (Matei Marinescu, Dafin

Muresanu), Russia (Boleslav Lichterman,

Alexander Potapov), Taiwan (Wen-Ta Chiu), UK

(Richard Greenwood, Jane Powell*, Ginny Winter,

Lindsay Wilsony) and USA (John DaVanzo, George

Zitnay*).

We thank organizations who initiated, encouraged

and supported our work in developing the

QOLIBRI: the EMN (Euroacademia

Multidisciplinaria Neurotraumatologica), the EBIS

(European Brain Injury Society), the International

Brain Research Foundation Inc, and in France Les

Gueules Cassees, the MAAF Insurance Foundation,

France Traumatisme Cranien, in Germany the

Hannelore Kohl Foundation and Cerebprotect e.V.

Munster, in the UK the Homerton Hospital and in

Australia the Victorian Neurotrauma Initiative.

*The QOLIBRI Task Force comprises Jean-Luc

Truelle, chairman, Nicole von Steinbuchel, respon-

sible of the methodological centre, Klaus von Wild,

treasurer, Monika Bullinger, Andrew Maas, Eddy

Neugebauer, Jane Powell and George Zitnay,

members of the Steering Committee; country

representatives: Wilbert Bakx, Armando Basso,

Lucia Braga, Wen Ta Chiu, Anne-Lise

Christensen, Christine Croisiaux, John DaVanzo,

Rita Formisano, Sandra Guerreiro, Graeme

Hawthorne, Yoichi Katayama, Sanna Koskinen,

Dafin Muresanu, Maria Pachalska, Wai San Poon,

Alexander Potapov, Jaana Sarajuuri, Eva

Tazopoulou, Zang Thong, Rimantas Vilcinis, Eka

Wahjoepramono; members of the methodological

group: Monika Bullinger, Henning Gibbons Graeme

Hawthorne, Stefan Hofer, Tanja Lischetzke, Nadine

Sasse, Silke Schmidt, Nicole von Steinbuchel,

Lindsay Wilson and Wolfgang Woerner.

Declaration of interest: The authors report no

conflicts of interest. The authors alone are respon-

sible for the content and writing of the paper.

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Appendix

Copyright of the QOLIBRI assessment tool with 37

items as presented here by the QOLIBRI Task Force

in conjunction with the QOLIBRI Society e.V.

Dr Woessner Myliusstrasse 58 D-60323 Frankfurt

am Main, Germany (registration number 73 AR 21/

08 § 32 paragraph 2BGB).


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The items of the questionnaire are presented

below:

Part I: How satisfied are you with . . . ,

(A) Your thinking abilities?

(1) your ability to concentrate, for example

when reading or keeping track of a

conversation

(2) your ability to express yourself and under-

stand others in a conversation

(3) your ability to remember everyday things,

for example where you have put things

(4) your ability to plan and work out solutions

to everyday practical problems, for example

what to do when you lose your keys

(5) your ability to make decisions

(6) your ability to find your way around

(7) your speed of thinking

(B) The view of your self?

(1) your level of energy

(2) your level of motivation to do things

(3) your self-esteem, how valuable you feel

(4) the way you look

(5) what you have achieved since your brain

injury

(6) the way you perceive yourself

(7) the way you see your future

(C) Your independence and how you function in

daily life?

(1) the extent of your independence from

others

(2) your ability to get out and about

(3) your ability to carry out domestic activities,

for example cooking or repairing things

(4) your ability to run your personal finances

(5) your participation in work or education

(6) your participation in social and leisure

activities, for example sports, hobbies,

parties

(7) the extent to which you are in charge of

your own life

(D) Your social relationships?

(1) your ability to feel affection towards

others, for example your partner, family,

friends

(2) your relationships with members of your

family

(3) your relationships with your friends

(4) your relationship with your partner or with

not having a partner

(5) your sex life

(6) the attitudes of other people towards you

Part II: How bothered are you by . . .

(A) Your emotions?

(1) feeling lonely, even if you are with other

people

(2) feeling bored

(3) feeling anxious

(4) sad or depressed

(5) feeling angry or aggressive

(B) Your physical problems?

(1) slowness and/or clumsiness of

movement

(2) any other injuries you sustained at the same

time as your brain injury

(3) pain, including headache

(4) problems with seeing or hearing

(5) the effects of your brain injury


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Documents

QOLIBRI clinical proof 4.8.2010[1] - Sacro Cuore › wp-content › uploads › 2019 › ... · 4/8/2010 · Keywords: Traumatic brain injury, health-related quality of life, assessment,