Comparison of subjective and objective assessments of outcome after traumatic brain injury using the...

RESEARCH PAPER

Comparison of subjective and objective assessments of outcome

after traumatic brain injury using the International Classification

of Functioning, Disability and Health (ICF)

SANNA KOSKINEN1, EEVA-MAIJA HOKKINEN1, LINDSAY WILSON2,

JAANA SARAJUURI1, NICOLE VON STEINBUCHEL3 & JEAN-LUC TRUELLE4

1Kapyla Rehabilitation Centre, Helsinki, Finland,

2Department of Psychology, University of Stirling, Stirling, UK,

3Department of Medical Psychology and Medical Sociology, Georg-August-University, Goettingen, Germany, and

4Service de

Medicine physique et readaption, C.H.U. Raymond-Poincare, Garches, France

Accepted March 2011

AbstractPurpose. The aim is to examine two aspects of outcome after traumatic brain injury (TBI). Functional outcome wasassessed by the Glasgow Outcome Scale – Extended (GOSE) and by clinician ratings, while health-related quality of life(HRQoL) was assessed by the Quality of Life after Brain Injury (QOLIBRI).Method. The GOSE and the QOLIBRI were linked to the International Classification of Functioning, Disability andHealth (ICF) to analyse their content. Functional outcome on ICF categories was assessed by rehabilitation clinicians in 55participants with TBI and was compared to the participants’ own judgements of their HRQoL.Results. The QOLIBRI was linked to 42 and the GOSE to 57 two-level ICF categories covering 78% of the categories onthe ICF brief core set for TBI. The closest agreement in the views of the professionals and the participants was found on thePhysical Problems and Cognition scales of the QOLIBRI.Conclusions. The problems encountered after TBI are well covered by the QOLIBRI and the GOSE. They captureimportant domains that are not traditionally sufficiently documented, especially in the domains of interpersonalrelationships, social and leisure activities, self and the environment. The findings indicate that they are useful andcomplementary outcome measures for TBI. In rehabilitation, they can serve as tools in assessment, setting meaningful goalsand creating therapeutic alliance.

Keywords: Outcome, HRQoL, TBI, ICF, QOLIBRI, GOSE

Introduction

Outcome after traumatic brain injury (TBI) can be

observed from an ‘objective’ or ‘subjective’ perspec-

tive, or a combination of these. The ‘objective’

approach is traditionally used to assess functional

outcome (e.g. activities of daily living (ADL),mobility

and return towork) anduses clinician rating scales and

questionnaires. These include such measures as the

Glasgow Outcome Scale [1] or its extended version

(GOSE) [2]. The ‘subjective’ approach evaluates the

patient’s perspective of his or her subjective health

status, well-being and functional status assessed

primarily by self-rating [3]. The term health-related

quality of life (HRQoL) refers to how health impacts

an individual’s ability to function and his or her

perceived well-being in physical, mental and social

domains of life [4]. The concept relates to the

subjective evaluation of well-being, satisfaction, func-

tioning and disability: the same objective circum-

stances may be experienced in completely different

ways by various individuals, based on their previous

life experience and attainments in relation to their

current expectations, goals and values [5–8].

Assessments of quality of life (QoL) are based on

global definitions such as that formulated by the

Correspondence: Sanna Koskinen, Kapyla Rehabilitation Centre, P.O. Box 103, Helsinki 00251, Finland. E-mail: [email protected]

Disability and Rehabilitation, 2011; 33(25–26): 2464–2478

ISSN 0963-8288 print/ISSN 1464-5165 online ª 2011 Informa UK, Ltd.

DOI: 10.3109/09638288.2011.574776

World Health Organization (WHO), which sees 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’ [9]. Only

recently, HRQoL has been introduced as an out-

come criterion after TBI [10–14].

TBI has a sudden onset and long-term effects. It

may affect people of any age, and has many and

particularly diverse consequences: impairments in

body functions and structures, activity limitations

and participation restrictions, and changes in the

HRQoL of both the patients and the significant

others [15–25]. Earlier studies have shown that

HRQoL after TBI is related to a wide variety of

changes: changes in emotional status [26–29],

neurobehavioural disturbances [25,30], cognitive

impairments [16], sleep–wake disturbances and

fatigue [31,32], pain [33,34], loss of communication

skills [35], loss of autonomy in advanced ADL

[7,16,36,37], co-morbid health conditions [37],

changes in the level of participation [38] and changes

in vocational status [7,26,39].

Recently, the International Classification of Func-

tioning, Disabilities and Health (ICF) [40] has been

proposed as a framework for investigating QoL

[20,38]. According to Cieza and Stucki [41],

HRQoL and the ICF represent two different

perspectives from which to look at functioning and

health. Cieza et al. [42] emphasise that the concept

of functioning will be regarded as distinct from

HRQoL and health preferences in the future. While

functioning refers to limitations and restrictions

related to a health problem, HRQoL should more

specifically be used to refer to how someone feels

about these limitations and restrictions.

The ICF is not an assessment tool and does not

consist of specific assessment measures or protocols

for use when conducting evaluations. A practical

challenge to the application of the ICF is the size of

the classification system with its 1424 categories. To

address the issue of feasibility, ICF-based instru-

ments have been developed; for example, the ICF

checklist [43] and the ICF core sets [44]. The

checklist is designed for the needs of any patient,

regardless of the diagnosis. However, from a medical

perspective, functioning and health are seen primar-

ily as a consequence of a specific health condition.

Condition-specific core sets can be defined as a

selection of ICF domains that include the smallest

number of domains practical, but still being suffi-

ciently comprehensive to cover the typical spectrum

of limitations in functioning and health encountered

in a particular condition [44]. At present, core sets

are being developed for TBI patients [45,46]. In

March, 2010, an international consensus conference

selected 143 ICF categories for the comprehensive

ICF core set for TBI and 23 ICF categories for the

brief core set [47].

As Stucki et al. [48] state, ICF success will depend

on its compatibility with measures used in rehabilita-

tion and on the improvement of its practicability. In

order to use the ICF as a reference framework in

outcome research and rehabilitation, the concurrent

use of both health-status measures and the ICF is

expected [42]. For practical reasons, systematic linking

rules have been developed for linking health-status

measures to the ICF [42,49]. Since the presentation of

these rules, several health-status measures [42] and

HRQoL measures [41] have been linked to the ICF.

Our group has recently developed internationally

the first disease-specific HRQoL measure for persons

after TBI, the Quality of Life after Brain Injury

(QOLIBRI). The QOLIBRI is based on the person’s

own evaluation of his/her satisfaction with different

domains typically affected by TBI [37,50,51]. In the

validation study of the QOLIBRI [37], the overall

relationship between functional outcome (assessed

by the GOSE) and the QOLIBRI total score was

moderate, which indicates that people could have

poor outcome on the GOSE and have good HRQoL

and vice versa. Fuhrer [5] emphasises this aspect

pointing out that regardless of the model of disable-

ment used, evaluations of the outcomes of medical

rehabilitation are incomplete if they ignore the

subjective well-being of the individual.

Aim of the study

The aim of the present study is to examine outcome

after TBI from two perspectives that complement

one another, functional outcome and HRQoL, using

the ICF as a frame of reference. We first analysed

one functional outcome measure (the GOSE) and

one HRQoL measure (the QOLIBRI) to examine

the content of these measures and to determine how

outcome has been operationalised. Secondly, we

analysed the relationship between the ‘objective’ and

‘subjective’ perspective of outcome after TBI. The

objective perspective here is reflected by the profes-

sionals’ view of the patient’s functioning and

disability. The subjective perspective reflects the

meaning of functioning and disability to the patient.

The assumption is that finding out the subjective

meaning of disability helps the clinician and the

patient in setting goals, planning and evaluating

rehabilitation interventions in clinical practice.

The questions addressed by the study are:

1. Do the two TBI-specific outcome measures

(the GOSE and the QOLIBRI) cover relevant

domains of functioning as defined in the frame

of reference of the ICF?

Outcome after TBI in ICF reference frame 2465

2. How does functional outcome assessed by

clinicians relate to subjective HRQoL re-

ported by participants?

Methods

Participants

A total of 305 patients with a primary diagnosis of

TBI underwent their first inpatient rehabilitation

period in the Kapyla Rehabilitation Centre, Helsinki,

Finland, from 1 January 2002 to 31 December 2004.

Of these, a sample of 124 persons participated in the

first wave of the international multi-centre QOLIBRI

validation study [37,50,51]. The patients are referred

to the centre from all over Finland by the clinicians

responsible for their care. Accordingly, the group is

selected and represents mainly patients with moder-

ate or severe disability, who need specialised

rehabilitation services.

The QOLIBRI was mailed to the participants and

filled out on the average 1.3 years after the rehabilita-

tion period. The inclusion criteria were: age 18–60

years at the time of assessment, minimum age of 15

years at the time of injury, available informed consent

form, diagnosis of TBI made by a physician according

to International Classification of Diseases (ICD-10)

and a time period of 3 months to 15 years, since

injury. The exclusion criteria were: GOSE53, spinal

cord injury, past or present psychiatric conditions,

ongoing severe addiction, inability to understand,

cooperate and answer and terminally ill patients. For

16 participants, the Glasgow Coma Scale (GCS)

score was unknown and they were excluded. Of the

remaining 108 participants, a systematic sample of 55

persons was selected to give a manageable sample for

detailed analysis. Every second name was picked from

an alphabetical list of the surnames. The first

participant from the list was drawn by lot.

The mean age of the participants at the time of the

injury was 36.4 standard deviation (SD) 12.6 years,

and 69.0% of the participants were males. They had

attended the rehabilitation centre on average 2.7 SD

2.55 years after the injury, and their functional status

was evaluated at that time. Based on the GCS,

injuries were classified as severe in 55.0% of the

cases. The external cause was motor vehicle accident

in 63.6% and fall in 21.8% of the cases. Table I

shows the demographic and clinical characteristics of

the study population.

The QOLIBRI

The QOLIBRI is a new disease-specific HRQoL

instrument specifically developed for TBI patients.

The items of the QOLIBRI focus on the individual’s

subjective evaluation of satisfaction with different

domains typically affected after TBI and presents the

questions in a positive manner: ‘How satisfied are

you with your. . .?’, or in domains where expression

of satisfaction is not relevant: ‘How bothered are you

by . . .?’. It consists of 37 items and provides a profile

of HRQoL in six domains (Cognition, Self, Daily life

& Autonomy, Social Relationships, Emotions and

Physical Problems) together with an overall score.

The evaluation is based on a 5-point Likert scale

(1¼not at all satisfied/bothered to 5¼ very satisfied/

bothered), which was transformed to a 0–100 scale.

For the analyses, the ‘bothered’ items were reversed

to correspond with the direction of the ‘satisfaction’

items. The QOLIBRI has been validated in six

languages. Detailed information concerning psycho-

metric properties and clinical use of the QOLIBRI

has been presented in our earlier papers [37,50,51].

The GOSE

The GOSE [2] is an extended version of the Glasgow

Outcome Scale (GOS) [1]. According to Wilson

et al. [2], it is proposed that the shortcomings of the

GOS can be addressed by adopting a standard

format for the GOSE interview to assign outcome.

The GOSE subdivides the initial categories of severe

disability, moderate disability and good recovery into

an upper and lower category, based on evaluation of

independence at home, shopping and travel, work,

social and leisure activities, family, friendship and

Table I. Demographic and clinical characteristics of the study

population (N¼55).

Frequency (%)

Gender Male 38 (69)

Female 17 (31)

Age (year) 17–30 17 (31)

31–44 17 (31)

45–68 21 (38)

Employment status Employed full time 0 (0)

Relationship status Single 19 (34)

Partnered 29 (53)

Past partnered 7 (13)

Living arrangements Independent 26 (47)

Supported 29 (53)

GCS (24 h worst) 3–8 30 (55)

9–12 6 (11)

13–15 19 (34)

Years since injury 51 16 (29)

1 to52 10 (18)

2 to54 16 (29)

4 to 18 13 (24)

GOSE Severe disability (3–4) 15 (27)

Moderate disability (5–6) 40 (73)

Good recovery (7–8) 0 (0)

2466 S. Koskinen et al.

return to normal life. The GOSE is coherent with the

principles of the WHO classification of impairments,

disabilities and handicaps and its validity is sup-

ported by correlation with results of neuropsycholo-

gical testing and assessments of general heath status

[10]. The GOSE has shown consistent relations with

other outcome measures including subjective reports

of health outcome [52].

Linking the QOLIBRI and GOSE items to the ICF

categories

The QOLIBRI and GOSE items were linked to the

ICF categories in order to find out whether these two

outcome measures cover the relevant domains of

TBI participants’ functioning in the frame of

reference of the ICF. The linking procedure was

carried out by two independent raters employing the

systematic linking rules presented by Cieza et al.

[42,49]. Following the linking rules, functional

concepts (e.g. expressing oneself) contained in the

QOLIBRI and GOSE items were first identified and

then linked to the ICF category representing this

concept most precisely. If an item contained more

than one concept, each concept was linked sepa-

rately. For example, the QOLIBRI item ‘How

satisfied are you with your ability to express yourself

and understand others in a conversation?’ was linked to

the following ICF categories: d330¼ speaking,

d310¼ communicating – receiving spoken messages

and d350¼ conversation.

After having linked the items independently, the

raters compared the results and in cases of disagree-

ment, decided together which ICF category should

be linked to each item of the questionnaire. To

resolve possible unsolved disagreements, a third

person with expertise in the theoretical framework

and use of the ICF was consulted. Finally, this third

person made an informed decision after a discussion

with the original raters. The QOLIBRI was linked to

the ICF by SK and E-MH. The third person leading

the consensus conference was Dr Seija Talo, one of

the most experienced professionals in the ICF in

Finland. The GOSE was linked to the ICF by SK

and LW. The third person leading the consensus

conference was Dr Alarcos Cieza from the ICF

Research Branch of WHO, Munich.

The ICF coding procedure

The ICF coding procedure was carried out in order

to present the participants’ functioning from the

perspective of the professionals’ in the reference

frame of the ICF. According to Stucki et al. [53],

there are two approaches to measure a specified ICF

category. The first is to use the ICF qualifier as a

rating scale ranging from 0 to 4. The second is to

use information obtained with a clinical test or a

patient-oriented instrument and to transform this

information into the ICF qualifier. Both of these

procedures were used in this study. With the first

approach a physician or health professional inte-

grates all accessible and suitable information from

the patient’s history, clinical and technical exams to

code a specified category according to established

coding guidelines [53]. In this study, two profes-

sionals (SK and E-MH) analysed thoroughly and

independently 350 written documents concerning

55 persons with TBI. These documents consisted of

medical records (55 participants) and documents

from neuropsychologists (55 participants), phy-

siotherapists (55 participants), occupational thera-

pists (23 participants), speech and language

pathologists (53 participants), social workers (54

participants) and nurses (55 participants). Based on

this data, the functioning of the participants was

coded using a total of 171 ICF categories derived

from the ICF checklist (125 categories) [43] and a

complementary checklist including additional cate-

gories from the linking procedures of the GOSE (27

categories) and the QOLIBRI (19 categories), which

were not included in the original checklist. Follow-

ing the checklist instructions, the categories of body

functions (b), body structures (s) and activity and

participation (d) were coded using qualifier values

from 0 to 4; 0¼no impairment; 1¼mild impair-

ment/difficulty (problem present less than 25%

of the time, with an intensity a person can tolerate

and which happens rarely over the last 30 days);

to 4¼ complete impairment/difficulty (problem

present more than 95% of the time, with an inten-

sity, which is totally disrupting the person’s day-to-

day life and which happens everyday over the last

30 days). The qualifiers of environment (e) were

graded from 0 toþ4 (0¼no barriers/facilitators to

4¼ complete barrier andþ4¼ complete facilitator).

The coding procedure has been described in detail

elsewhere [54].

The two raters coded the data from the docu-

ments independently. For the present study, the data

was transformed into one database. In cases where

there was no difference in the qualifier values

between the raters (i.e. the difference was 0), the

original value of both raters represents the final

value. If the difference between raters was 1, the

higher value of the raters represents the final value; if

the difference between raters was 2, the mean of the

ratings represents the final value; if the difference

between raters was 3–4, the final value was

confirmed by a consensus discussion between the

two raters. Statistical analyses were conducted using

SPSS 17.0 for Windows (SPSS Inc., Chicago, IL).


Results

Question 1: do the two TBI-specific outcome measures

(the GOSE and the QOLIBRI) cover relevant domains

of functioning as defined in the frame of reference of the

ICF?

QOLIBRI items linked to the ICF. The results of

linking the 37 QOLIBRI items to the ICF categories

are presented in Appendix 1. As one item can contain

one or more concepts, one QOLIBRI item can be

linked to one or more ICF categories. In this study, 56

functional concepts were identified in the QOLIBRI

items. These concepts were linked to 42 different ICF

categories. Four of the concepts could not be linked to

any specific ICF category. Of the linked categories, 16

belonged to the body functions component, 25

belonged to the activities and participation compo-

nent, and one belonged to the environment compo-

nent. No concepts were linked to the body structures

component. Five ICF categories were linked to two or

more QOLIBRI items (b152 emotional functions – six

times; b180 experience of self and time functions,

d350 conversation, d760 family relationships and

d7500 informal relationships with friends two times

each).

The agreement between the two raters was 93% at

the component level (b,d,e), 93% at the first level,

79% at the second level and 43% at the third level.

The main differences between the raters were found

in linking concepts related to emotional functions,

experiences of self functions and movement-related/

mobility functions.

On the ICF one-level classification, the concepts

identified in the QOLIBRI covered 12 out of the

total of 29 main ICF chapters (Figure 1). The ICF

component of activities and participation (d) was

most completely covered. Categories of body func-

tions (b) were best represented in chapter b1 Mental

functions. Eight out of the nine one-level chapters of

activities and participation were represented in the

QOLIBRI. The most frequent categories of activities

and participation were found in chapter d7 ‘Inter-

personal interactions and relations’.

GOSE items linked to the ICF. The items of the

GOSE are presented in a descriptive manner and

include examples to help in the assessment (Appen-

dix 2). Therefore, each item contains more than one

functional concept and has to be linked to more than

one ICF category. In the GOSE, it was more difficult

to identify the functional concepts than in the

QOLIBRI and there was disagreement in identifying

32 concepts. After the final consensus discussions, a

total of 102 functional concepts were identified and

linked to 57 different ICF categories, 18 concepts

could not be linked to any ICF categories. On the

one-level classification, the concepts identified in the

GOSE covered 14 out of the total of 29 main ICF

chapters (Figure 2). The ICF component of activities

and participation (d) was most completely covered.

Eight out of the nine one-level chapters of activities

and participation were represented in the GOSE.

Categories of body functions (b) were best repre-

sented in chapter b1 Mental functions. The most

frequent categories of activities and participation

were found in chapter d7 ‘Interpersonal interactions

and relations’. Three out of the five chapters of

environment (e) were covered. The agreement in

linking the concepts that had been identified by both

Figure 1. QOLIBRI items linked to the ICF at one-level

classification. b1, Mental functions; b2, Sensory functions and

pain; b7 Neuromusculoskeletal and movement-related functions;

d1, Learning and applying knowledge; d3, Communication; d4,

Mobility; d5, Self-care; d6, Domestic life; d7, Interpersonal

interactions and relations; d8, Major life areas; d9, Community,

social and civic life; e4, Attitudes.

Figure 2. GOSE items linked to the ICF at one-level classification.

b1, Mental functions; b2, Sensory functions and pain; b4,

Functions of the cardiovascular, haematological, immunological

and respiratory systems; d2, General tasks and demands; d3,

Communication; d4, Mobility; d5, Self-care; d6, Domestic life;

d7, Interpersonal interactions and relations; d8, Major life areas;

d9, Community, social and civic life, e1, Products and technology;

e2, Natural environment and human-made changes to

environment; e3, Support and relationships.


of the raters was 89% at the component level, 89% at

the first level, 94% at the second level, 54% at the

third level and 60% at the fourth level.

Clinician ratings of impairment of the 55 participants

on the categories of the brief ICF core set for TBI

[47] are shown in Figure 3. The brief core set

consists of 23 two-level categories and these repre-

sent the minimum assumed necessary to cover the

typical spectrum of problems in functioning in TBI

patients. Twelve of them are represented in the

QOLIBRI and 17 in the GOSE either on the one-,

two- or three-level classification. Together, the

QOLIBRI and GOSE cover 18 (78%) of the

categories of the ICF brief core set for TBI. The

categories of the component of body functions (b)

are completely covered, the only missing category in

the component of activities and participation (d) is

d450 walking. Although the component of environ-

ment (e) is not completely covered by all the

categories on the second-level classification, it is

covered on the one-level classification, with the

exception that chapter 5, Services, Systems and

Policies, is missing.

Question 2: how does functional outcome assessed by

clinicians relate to subjective HRQoL reported by

participants?

Linking the QOLIBRI items to the ICF categories

makes it possible to compare the participants’ own

satisfaction with their functioning to the profes-

sionals’ assessment of the same domains. The

detailed profile from the QOLIBRI (the participants’

assessment of their satisfaction) is shown in Figure 4,

and from the ICF (the professionals’ assessment of

the extent of disability) in Figure 5. For the present

analyses, the original values of the QOLIBRI items

(ranging from 1 to 5) were transformed to correspond

to the values and the direction of the ICF qualifiers.

The original QOLIBRI values (1–5) were thus first

transformed to correspond with the ICF qualifier

values (0–4) and then reversed. Some of the

QOLIBRI items cover several ICF domains, and to

aid comparison, these have been repeated in Figure 4.

It should be borne in mind that the numbers of the

two scales are not directly comparable in a quantita-

tive way even though they both are expressed on a 0–4

scale. Healthy controls would score 0 on the ICF, but

not necessarily 0 on the QOLIBRI. Therefore, the

comparison is restricted to an inspection of the

profiles of means, examining the relation between

the perspectives of the professionals and the partici-

pants: the highest values in Figure 5 represent the

professionals’ assessment of the highest disability on

the ICF categories, and the highest values in Figure 4

represent the poorest HRQoL on the QOLIBRI.

Overall, at the QOLIBRI scale level, the closest

similarity between the profiles from the participants

and the professionals was found in the Physical

Problems scale and the Cognition scale. However, on

the Cognition scale, a discrepancy was found in the

items Cog 2B/d310 (communication/receiving spo-

ken messages) and Cog 6/b1565 (visuospatial percep-

tion), in which the participants reported poorer

satisfaction than would have been expected based

on the professionals’ assessment. On the contrary, in

item Cog 5/b164 (Higher level cognitive functions),

the participants reported higher satisfaction than

would have been expected. On the Daily Life &

Autonomy scale, participation in work (d850 remu-

nerative employment) corresponded closely in the

assessments of the participants and the professionals:

none of the participants were working and they

expressed low satisfaction on this domain (repre-

sented by the prominent peaks in the middle of

Figures 4 and 5). Ability to carry out domestic

activities (d640 doing housework) also corresponded

Figure 3. Profile of degree of impairment of the 55 participants on

the categories of the ICF brief core set for TBI on a 0–4 scale. The

graph shows the mean and SE of qualifiers. 0, no impairment/

difficulty/barrier/facilitator; 1, mild impairment/difficulty/barrier/

facilitator; 2, moderate impairment/difficulty/barrier/facilitator; 3,

severe impairment/difficulty/barrier/facilitator; 4, complete

impairment/difficulty/barrier/facilitator (s110 Structure of brain is

not analysed).


in the assessments of the professionals and the parti-

cipants. On the Self scale the professionals’ evalua-

tion that there was severe disability in category b1300

(energy level) was reflected in the participants’ low

satisfaction on that function. On the Social scale, the

participants reported poor satisfaction on their ability

to feel affection towards others (Soc 1/b152), which

corresponded with the professionals’ assessment.

There are some domains in which the profes-

sionals’ evaluation of disability is relatively more

prominent than the participants’ report of low

HRQoL. This group of domains includes all the

QOLIBRI items on the Emotions scale. The

participants appear less bothered by emotional

problems than would be expected based on the

professionals’ assessment of the severity of the

impairments in emotional functions (b152).

There are a number of ICF domains in which the

participants are relatively less satisfied than would be

expected based on the documentation of the profes-

sionals, which report mild or no disabilities. These

domains belong to the QOLIBRI scales of self (all

except one item of the Self scale), Daily Life &

Autonomy (five out of the seven Daily Life &

Autonomy scale items), social relationships (five

out of the six Social scale items) and Cognition

(two out of nine Cognition scale items). Ten out of

these 16 domains belong to the ICF component

activities and participation (d). The discrepancy

between the professionals and the participants is

most prominent in domain d7 ‘Interpersonal inter-

actions and relationships’ (e.g. relationships with

family, friends, partner, sexual relationships) fol-

lowed by d9 ‘Community, social and civic life’

(participation in social and leisure activities). On the

QOLIBRI Self scale, the professionals rarely re-

corded problems regarding the participants’ motiva-

tion, body image or experience of self (‘The way you

look’, ‘The way you perceive yourself’, ‘Your self-

esteem’), although the participants find these have a

strong effect on satisfaction.

Discussion

Scarponi et al. [55] have stated recently that the ICF

is a flexible instrument, which is useful in monitoring

outcome and in defining the goals of rehabilitation,

Figure 4. Means of the QOLIBRI items linked with the ICF categories (error bars represent standard error). The bars are shaded to indicate

items belonging to each of the six scales. QOLIBRI scales: Cog, Cognition; Self, Self; DLþA, Daily Life & Autonomy; Soc, Social; Emot,

Emotional; Phys, Physical Problems. ICF components: b, body functions; d, activities and participation; e, environment; 0, very satisfied; 1,

quite satisfied; 2, moderately satisfied; 3, slightly satisfied; 4, not at all satisfied.

Figure 5. Means of the ICF categories linked with the QOLIBRI items (error bars represent standard error). The bars for the QOLIBRI are

shaded to indicate items belonging to each of the six scales. QOLIBRI scales: Cog, Cognition; Self, Self; DLþA, Daily Life & Autonomy;

Soc, Social; Emot, Emotional; Phys, Physical Problems. ICF components: b, body functions; d, activities and participation; e, environment;

0, No impairment/difficulty/barrier/facilitator; 1, mild impairment/difficulty/barrier/facilitator; 2, moderate impairment/difficulty/barrier/

facilitator, 3, severe impairment/difficulty/barrier/facilitator; 4, complete impairment/difficulty/barrier/facilitator.


and that it is desirable to define and validate ICF-

related assessment tools that can be easily used in

capturing the full biopsychosocial aspects of TBI.

Our study aimed first to evaluate the relevance of

the QOLIBRI and the GOSE in assessing outcome

after TBI in the frame of reference of the ICF

classification.

Cieza et al. [41] have shown earlier that the ICF

and the linking procedure can serve as the common

framework when comparing HRQoL instruments.

Compared to these generic HRQoL measures, the

QOLIBRI included each of the most common

categories of body functions, and covered more

comprehensively categories typical of the sequel of

TBI, especially cognitive functions. Cieza et al. [49]

state that linking the concepts of the health-status

measures to the ICF should prove extremely useful

in selecting the most appropriate outcome measures

among a number of candidate measures for applied

interventions. For that reason, we analysed the

coverage of two TBI-specific measures (the QOLI-

BRI and the GOSE) when used together in

investigating outcome after TBI.

The QOLIBRI was linked to 42 and the GOSE to

57 ICF two-level categories. On the one-level

chapters, the linking procedure showed that the

QOLIBRI covers 12 and the GOSE 14 out of the 29

main ICF chapters. The ICF component activities

and participation (d) was covered most comprehen-

sively; together, these two scales embraced each of

the nine chapters. Chapter d7 ‘Interpersonal inter-

actions and relations’ was most completely covered,

followed by d8 ‘major life areas’ and d9 ‘Commu-

nity, social and civic life’. Focussing on the domains

of activities and participation is of utmost clinical

importance in the field of rehabilitation and outcome

assessment because these are domains that can be

influenced by rehabilitation. In the component of

body functions (b), chapter b1 ‘Mental functions’

was most comprehensively covered pointing out

cognitive, emotional, and energy and drive functions,

as well as the sensation of pain. Both the QOLIBRI

and the GOSE included chapters of the environment

(e). Taking into account the barriers and facilitators

in the environment is an elementary part of any

rehabilitation effort and therefore important to be

included in assessment. The QOLIBRI contains

one-level chapter e4 ‘Attitudes’. This domain is

rarely included in the HRQoL measures although the

attitudes of the family, significant others, support at

work, etc., are recognised to be among the most

important factors relating to life satisfaction, work

performance and disability [41]. Based on the ICF

brief core set for TBI, 17 out of the 23 (78%) most

relevant ICF two-level categories were represented,

confirming the appropriateness of these two mea-

sures for the evaluation of persons with TBI. At the

less-detailed one-level classification, all but one of

the main chapters is covered by using both the

QOLIBRI and the GOSE. To summarise, the results

of the linking procedure showed that both the

QOLIBRI and the GOSE as short outcome scales

can capture a wide range of problems encountered

after TBI. The use of both of these measures can

produce a comprehensive overview of TBI patients’

functioning and HRQoL.

The second aim of this study was to use the ICF to

compare the perspectives of the professionals and the

participants, especially for rehabilitation purposes.

The QOLIBRI complements traditional measures of

disability and recovery and captures people’s satis-

faction with their health and well-being. As a patient

reported outcome measure, it captures a different

perspective on outcome than is provided by assess-

ments performed by professionals [37]. The results

showed that the closest agreement between the

assessments of the professionals and the participants

was found in the QOLIBRI Physical Problems scale

and the Cognition scale indicating that professionals

see these as important areas of function while the

participants regard them as a source of QoL. These

disabilities are typical of persons with TBI. The

professionals have assessed and documented them

carefully in their reports and the participants

themselves find them important when assessing

satisfaction in these domains.

On the Emotions scale, the participants appeared

less bothered than would have been expected based

on the professionals’ assessment. This may be a result

of adjustment to the effects of injury in the period

between assessments, and gives some grounds for

optimism concerning emotional recovery in this

group. Cieza and colleagues [53] have proposed a

more fine-grained definition of category b152 in a

future version of the ICF that covers specific features

of emotional functions, such as sadness, happiness,

anxiety and anger, and this would be a useful

refinement. In addition, a relatively large discrepancy

between the professionals’ and the participants’

assessments was found in the QOLIBRI item ‘Ability

to make decision’ (b164 Higher level cognitive func-

tions) on the Cognition scale. Professionals may well

perceive this as an important barrier to progress,

while participants seem less concerned about this

issue. It is also possible that it would have turned out

to be clinically more relevant to link ‘Ability to make

decisions’ with d177 ‘Making decisions’.

Finally, there are a number of ICF domains in

which the participants are relatively less satisfied than

would be expected based on the documentation of

the professionals who report mild or no disabilities.

These domains belong to the QOLIBRI scales of

Self, Daily Life & Autonomy, Social Relationships

and Cognition. These thus represent areas that are


utterly important to the HRQoL of the person con-

cerned although are not recognised fully in the

assessment of clinicians. The discrepancy found in

b1301 ‘Motivation’ may reflect different definitions

of the concept. It is possible that the raters coding the

participants’ functioning from the medical records

have interpreted lack of initiative as a sign of

impairment of executive functions (b164 Higher level

cognitive functions), while the participants may have

interpreted lack of initiative as lack of motivation

(b1301 Motivation). The participants report rela-

tively low satisfaction with the attitudes of other

people towards them, while the documents of the

professionals rarely mention such attitudes. These

areas in which the participants report low satisfaction,

but which are not identified by a comprehensive

clinical examination, are important from the clinical

point of view and, moreover, certainly important for

the person’s HRQoL. The results suggest domains on

which the professionals do not focus sufficient at-

tention. In the daily clinical practice of neurorehabil-

itation, the domains related to interpersonal

relationships, social and leisure activities, self, and

attitudes tend to be less actively assessed and docu-

mented than impairments in mental or physical func-

tions. However, these domains are important to the

persons with TBI and, therefore, should have greater

emphasis in clinical practice and documentation.

This is in accordance with the conclusions of Mazaux

and Richer [56] as they state that access to leisure

activities, friends, social interactions and human

relationships are for many patients more important

than, for instance, returning to work. Rehabilitation

aims at improving functional outcome of persons

with TBI, and at improving their overall QoL [57].

The idea of functioning and QoL as the key outcomes

of rehabilitation is also presented in the ICF-based

conceptual description of rehabilitation [58].

The QOLIBRI presents the items in a positive way

of assessment of satisfaction and does not primarily

ask for experienced deficits and disabilities. In

clinical practice, this may encourage the person with

TBI and the therapist to pay attention to coping

strategies instead of restricting oneself merely to

impairments and losses. These findings strongly

suggest that QOLIBRI can be used as a new tool in

neuropsychological rehabilitation or neuropsy-

chotherapy [59], helping in setting goals and creating

therapeutic alliance, as well as an outcome measure.

As Ueda and Okawa [8] put it, most patients suffer

not only from Physical Problems but a serious

psychological existential crisis as well. There is a

need to know and understand the inner world of the

patients better and more deeply in order to assist

them in their struggle [8].

This study has some important limitations. First of

all, the time interval between the assessment of the

participants’ functioning and filling out the QOLIBRI

was on average 1.3 years. The results of this study

would potentially have been stronger if the documen-

tation of functioning and the HRQoL had been

accomplished at the same time. The average time

from the injury to the functional assessment was 2.7

years and thus most of the participants had already

reached a neurological plateau by that time. However,

29% of the participants were assessed less than 1 year

after injury and their global functioningmight have got

better in a longer time perspective, including ability to

work and social functioning. Associations between

functional disability and HRQoL may tend to dissolve

over time and other variables, that is, psychological

and social components may become more important

for HRQoL at a later stage. One hypothesis is that

persons with more-severe impairment experience

better HRQoL due to reduced awareness. Persons

with less-severe TBI might report poorer HRQoL due

to more insight and better cognitive ability to gain an

overall view of their disabilities [37].

The other main limitation is that the study was

carried out in one rehabilitation centre with moder-

ately to severely disabled post-acute TBI patients,

and thus does not represent the whole population of

person with TBI. The participants were referred to

the rehabilitation centre for their first rehabilitation

period because the clinicians responsible for their

care had identified severe impairments and limita-

tions in their functioning, including ability to work.

Since this was their first inpatient rehabilitation

period, none of the patients had yet managed to

return to work. The outcome assessed by the GOSE

showed that 27% of the participants had severe and

73% moderate disabilities during the time of the

rehabilitation period in spite of the fact that accord-

ing to the Glasgow coma score, 45% of the injuries

were primarily assessed as moderate or mild. In spite

of these limitations, we decided to focus on one

experienced neurorehabilitation centre with a com-

mon documentation protocol. By that, we aimed at

consistency in the assessment, care and documenta-

tion in the medical records.

The limitation in the use of the GOSE was that, in

this study, the GOSE score was not obtained by

following the step by step systematic guidelines of the

structured interview presented by Wilson et al. [2].

However, the score was obtained using the original

questionnaire and getting the information from the

clinical interviews and observations during the weeks

of the rehabilitation period, as well as from the

medical records. There are some limitations and

strengths of the linking procedure, as well. The

QOLIBRI was linked to the ICF by two raters from

one rehabilitation centre, representing two different

professions (neuropsychology and physiotherapy).

The GOSE was linked to the ICF by two


professionals from different countries and different

settings (a rehabilitation centre in Finland and a

university psychology department in Scotland),

representing one professional background (neurop-

sychology). The third person acting as the specialist

making the final decisions was a psychologist in both

cases, one of the most experienced professionals in

the ICF from Germany and Finland.

Finally, the comparison between the QOLIBRI

items and the ICF is based simply on inspection of

profiles. Inspection of mean values does not distin-

guish between domains in which many people report

a modest reduction in HRQoL and those in which a

few people reported very substantial reduction. Such

a detailed analysis was beyond the scope of this

study, but might yield further insight into relation-

ships in the future.

Conclusions

The results of the study show that QOLIBRI and

GOSE together cover relevant domains of TBI

patients’ functioning defined by the ICF frame of

reference. In rehabilitation, they can serve as tools in

assessment, setting meaningful goals and creating

therapeutic alliance. The QOLIBRI provides the

patients’ subjective view of functioning and well-

being, while the GOSE identifies the objective

elements of functioning relevant to persons with

TBI. These findings have important implications

related to rehabilitation. As Mazaux and Richer [56]

state, improving functional independence, re-entry

to community and return to work are the major

objectives of rehabilitation. Beyond these objectives,

improving the overall feeling of well-being, quality

and satisfaction of life of the patients and their

families, while respecting their free will, is an

important goal of rehabilitation. As Fuhrer [5] points

out, a comprehensive portrayal of rehabilitation

outcomes requires both subjective and objective

perspectives. They should be viewed as a comple-

ment to objective indices of people’s functioning and

life status. Our study indicates that there are certain

domains of functioning that are not traditionally

sufficiently documented but are important for the

QoL of persons with TBI, especially in the domains

of interpersonal relationships, social and leisure

activities, self and the environment.

Acknowledgements

The authors would like to express their gratitude to

Dr Alarcos Cieza from the ICF Research Branch,

Germany, and to Dr Seija Talo from the National

Research and Development Centre for Welfare and

Health, Finland, for their valuable help in acting as

the specialists and leading the consensus conferences

when linking the GOSE and the QOLIBRI the ICF.

We also thank Dr Laura Hokkanen from the

University of Helsinki for her valuable comments.

Declaration of interest: The authors report no

conflicts of interest. The authors alone are respon-

sible for the content and writing of the paper. This

study was funded by EVO funding of the Kapyla

Rehabilitation Centre, and by grants from the Alfred

Kordelin Foundation, Finland, and the Finnish

Cultural Foundation.

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Appendix 1. QOLIBRI items linked with the ICF categories.

QOLIBRI item ICF category

Part I: How satisfied are you with. . .

A. Cognition (Cog)

1. Your ability to concentrate b140 Attention functions

for example, when reading or (d166 Reading)*

keeping track of a conversation? (d350 Conversation)*

2. Your ability to express yourself and d330 Speaking

understand others d310 Communicating – receiving

spoken messages

in a conversation? d350 Conversation

3. Your ability to remember everyday things, for example,

where you have put things?

b144 Memory functions

4. Your ability to plan and work out solutions to everyday practical

problems, for example, what to do when you lose your keys?

d175 Solving problems

5. Your ability to make decisions? b164 Higher level cognitive functions

6. Your ability to find your way around? b1565 Visuospatial perception

7. Your speed of thinking? b160 Thought functions

B. Self (self)

1. Your level of energy? b1300 Energy level

2. Your level of motivation to do things? b1301 Motivation

3. Your self-esteem, how valuable you feel? b180 Experience of self and time functions

4. The way you look? b1801 Body image

5. What you have achieved since your brain injury? nd (Non-definable)

6. The way you perceive yourself? b180 Experience of self and time functions

7. The way you see your future? nd (Non-definable)

C. Daily Life & Autonomy (DLþA)

1. The extent of your independence from others? d5 Self-care

2. Your ability to get out and about? d460 Moving around in different locations

3. Your ability to carry out domestic activities d640 Doing housework

for example, cooking or (d630 Preparing meals)* ,

repairing things? (d650 Caring for household objects)*

4. Your ability to run your personal finances? d860 Basic economic transactions

5. Your participation in work d850 Remunerative employment

or education? d820 School education{

d825 Vocational training{

d830 Higher education{

6. Your participation in social d910 Community life

and leisure activities d920 Recreation and leisure

for example, sports (d9201 Sports)*

hobbies (d9204 Hobbies)*

parties? (d9205 Socializing)*

7. The extent to which you are in charge of your life? nd (Non-definable)

(continued)


Appendix 1. (Continued).

QOLIBRI item ICF category

D. Social relationships (Soc)

1. Your ability to feel affection towards others b152 Emotional functions

for example, your partner (d770 Intimate relationships)*

family (d760 Family relationships)*

friends? (d7500 Informal relationships with friends)*

2. Your relationships with members of your family? d760 Family relationships

3. Your relationships with your friends? d7500 Informal relationships with friends

4. Your relationship with a partner or with not having a partner? d7701 Spousal relationship

5. Your sex life? d7702 Sexual relationships

6. The attitudes of other people towards you? e4 Attitudes

Part II: ‘How bothered are you by. . .’

A. Emotions (Emot)

1. Feeling lonely, even when you are with other people? b152 Emotional functions

2. Feeling bored? b152 Emotional functions

3. Feeling anxious? b152 Emotional functions

4. Feeling sad or depressed? b152 Emotional functions

5. Feeling angry or aggressive? b152 Emotional functions

B. Physical problems (Phys)

1. Slowness and/or b1470 Psychomotor control

clumsiness of movement? b760 Control of voluntary movements functions

2. Effects of any other injuries you sustained at the same time as your brain injury? nd – gh (Non-definable – general health)

3. Pain b280 Sensation of pain

including headaches? b28010 Pain in head and neck

4. Problems with seeing or b210 Seeing functions{

hearing? b230 Hearing functions{

5. Overall, how bothered are you by the effects of your brain injury? nd (Non-definable)

*The examples presented in the QOLIBRI items are not analysed separately in the results.

{ The patients’ satisfaction with education (d820 – school education, d825 – vocational training, d830 – higher education) was not analysed

in the results while education was not relevant for this sample of patients.

{The patients’ satisfaction with seeing or hearing (b210 – seeing functions and b230 – hearing functions) was not analysed in this study while

the data is derived from the Wave 1 QOLIBRI validation. This question was presented in Wave 1 questionnaire on the ‘satisfaction scale’

(How satisfied are you with your ability to see and hear?) and not on the ‘botheredness’ scale as on the final questionnaire.

Appendix 2. GOSE items linked with the ICF categories.

GOSE

item ICF category

1 Consciousness: Is the head injured person able to obey simple

commands, or say any words?

b110 Consciousness

b16700 Reception of spoken language

d210 Undertaking single tasks

b16710 Expression of spoken language

Anyone who shows ability to obey even simple commands, or

utter any word or communicate specifically in any other way is no

longer considered to be in the vegetative state

b16700 Reception of spoken language

d210 Undertaking single tasks


d3 Communication

b1100 Consciousness

2a Independence in the home: Is the assistance of another person at

home essential every day for some activities of daily living?

e3 Support and relationships

d6 Domestic life

d230 Carrying out daily routine

d5 Self-care

d2202 Undertaking multiple tasks independently

For a ‘No’ answer they should be able to look after themselves at home

for 24 h if necessary, though they need not actually look after

themselves. (Independence includes the ability to plan for and carry

out the following activities: getting washed, putting on clean clothes

without prompting, preparing food for themselves, dealing with

callers and handling minor domestic crises. The person should be

able to carry out activities without needing prompting or reminding,

and should be capable of being left alone overnight

d5 Self-care

d6 Domestic life



b1641 Organisation and planning


d510 Washing oneself

d5400 Putting on clothes

d630 Preparing meals

(continued)



GOSE

item ICF category

d7 Interpers. interactions and relations

d2402 Handling crisis

d640 Doing housework

d2202 Carrying out multiple tasks independently


2b Do they need frequent help or someone to be around at home

most of the time?


For a ‘No’ answer, they should be able to look after themselves at

home for up to 8 h during the day if necessary, though they need

not actually look after themselves.



2c Was assistance at home essential before the injury? e3 Support and relationships

d6 Domestic life


3a Independence outside the home: are they able to shop without

assistance?

d6200 Shopping


This includes being able to plan what to buy, take care of money

themselves and behave appropriately in public

b1641 Organisation and planning

d860 Basic economic transactions

d7202 Regulating behaviours within interactions

3b Were they able to shop without assistance before the injury? d6200 Shopping


nc

4a Independence outside the home: Are they able to travel locally

without assistance?

d470 Using transportation

d475 Driving


(They may drive or use public transport to get around. Ability to use a

taxi is sufficient, provided the person can phone for it themselves

and instructs the driver.)

d475 Driving

d4702 Using public motorized transportation

d4701 Using private motorized transportation

d3600 Using telecommunication devices

e1250 General product and technology for

communication


d330 Speaking

d730 Relating with strangers

4b Were they able to travel without assistance before the injury? d470 Using transportation

d475 Driving


5a Work: Are they currently able to work to their previous capacity? d850 Remunerative employment

If they were working before, then their current capacity for work

should be at the same level. If they were seeking work before, then

the injury should not have adversely affected their chances of

obtaining work or the level of work for which they are eligible. If the

patient was a student before injury then their capacity for study

should not have been adversely affected

d850 Remunerative employment

d8450 Seeking employment

d820 School education

d825 Vocational education

d830 Higher education

5b How restricted are they? (a) Reduced work capacity. (b) Able to work

only in a sheltered workshop or non-competitive job, or currently

unable to work.

d850 Remunerative employment

nc

nc

5c Were they either working or seeking employment before the injury d850 Remunerative employment

d8450 Seeking employment

nc

6a Social and Leisure Activities: Are they able to resume regular social

and leisure activities outside home?

d910 Community life

d920 Recreation and leisure

(They need not have resumed all their previous leisure activities, but

should not be prevented by physical or mental impairment. If they

have stopped the majority of activities because of loss of interest or

motivation then this is also considered a disability.)


nd-ph

nd-mh

nc Not covered

b1301 Motivation

6b What is the extent of restriction on their social and leisure activities? d910 Community life

d920 Recreation & Leisure

(a) Participate a bit less: at least half as often nc

(b) Participate much less: less than half as often nc

(c) Unable to participate: rarely, if ever, take part nc

(continued)



GOSE

item ICF category

6c Did they engage in regular social and leisure activities outside home

before the injury?

d910 Community life


nc

7a Family and Friendships: Have there been psychological problems

that have resulted in ongoing family disruption or disruption to

friendships?

b1 Mental functions

d760 Family relationships

d7500 Informal relationships with friends

(Typical post-traumatic personality changes: quick temper, irritability,

anxiety, insensitivity to others, mood swings, depression and

unreasonable or childish behaviour.)

b152 Emotional functions

b1263 Psychic stability


b1521 Regulation of emotion

b1522 Range of emotion

d315 Communicating. . . receiving. . .

d710 Basic interpersonal relationships


b1522 Range of emotion

b152 Emotional functions

d7202 Regulating behaviours within interactions

7b What has been the extent of disruption or strain? (a) Occasional – less

than weekly, (b) Frequent – once a week or more, but tolerable, (c)

Constant – daily and intolerable.

d760 Family relationships


7c Were there problems with family or friends before the injury? d760 Family relationships


8a Return to normal life: Are there any other current problems relating

to the injury which affect daily life?

nd-gh


(Other typical problems reported after head injury: headaches,

dizziness, tiredness

b28010 Pain in head and neck

b2401 Dizziness

b1300 Energy level

b4552 Fatiguability

Sensitivity to noise or light b230 Hearing functions

e2501 Sound quality

b21020 Light sensitivity

e2401 Light quality

Slowness, memory failures, and concentration problems.) b1470 Psychomotor control

b144 Memory functions

b140 Attention functions


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