Disability and Rehabilitation, 2011; 33(25–26): 2464–2478
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, ¨ CHEL3 & JEAN-LUC TRUELLE4 JAANA SARAJUURI1, NICOLE VON STEINBU 1
Ka¨pyla¨ Rehabilitation Centre, Helsinki, Finland, 2Department of Psychology, University of Stirling, Stirling, UK, Department of Medical Psychology and Medical Sociology, Georg-August-University, Goettingen, Germany, and 4Service de Medicine physique et re´adaption, C.H.U. Raymond-Poincare´, Garches, France
3
Accepted March 2011
Abstract Purpose. The aim is to examine two aspects of outcome after traumatic brain injury (TBI). Functional outcome was assessed 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 and Health (ICF) to analyse their content. Functional outcome on ICF categories was assessed by rehabilitation clinicians in 55 participants 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 on the ICF brief core set for TBI. The closest agreement in the views of the professionals and the participants was found on the Physical Problems and Cognition scales of the QOLIBRI. Conclusions. The problems encountered after TBI are well covered by the QOLIBRI and the GOSE. They capture important domains that are not traditionally sufficiently documented, especially in the domains of interpersonal relationships, social and leisure activities, self and the environment. The findings indicate that they are useful and complementary outcome measures for TBI. In rehabilitation, they can serve as tools in assessment, setting meaningful goals and 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’ perspective, 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 to work) and uses 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, functioning and disability: the same objective circumstances 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, Ka¨pyla¨ Rehabilitation Centre, P.O. Box 103, Helsinki 00251, Finland. E-mail:
[email protected] ISSN 0963-8288 print/ISSN 1464-5165 online ª 2011 Informa UK, Ltd. DOI: 10.3109/09638288.2011.574776
Outcome after TBI in ICF reference frame 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 outcome 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 Functioning, 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 instruments 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 primarily 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 sufficiently 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
2465
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 rehabilitation 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 disablement 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 professionals’ 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?
2466 2.
S. Koskinen et al. How does functional outcome assessed by clinicians relate to subjective HRQoL reported by participants?
Table I. Demographic and clinical characteristics of the study population (N ¼ 55). Frequency (%) Gender
Methods Participants A total of 305 patients with a primary diagnosis of TBI underwent their first inpatient rehabilitation period in the Ka¨pyla¨ 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 moderate 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 rehabilitation 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: GOSE 53, 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.
Male Female Age (year) 17–30 31–44 45–68 Employment status Employed full time Relationship status Single Partnered Past partnered Living arrangements Independent Supported GCS (24 h worst) 3–8 9–12 13–15 Years since injury 51 1 to 52 2 to 54 4 to 18 GOSE Severe disability (3–4) Moderate disability (5–6) Good recovery (7–8)
38 17 17 17 21 0 19 29 7 26 29 30 6 19 16 10 16 13 15 40 0
(69) (31) (31) (31) (38) (0) (34) (53) (13) (47) (53) (55) (11) (34) (29) (18) (29) (24) (27) (73) (0)
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 (1 ¼ not at all satisfied/bothered to 5 ¼ 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 psychometric 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
Outcome after TBI in ICF reference frame return to normal life. The GOSE is coherent with the principles of the WHO classification of impairments, disabilities and handicaps and its validity is supported by correlation with results of neuropsychological 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 separately. 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: d330 ¼ speaking, d310 ¼ communicating – receiving spoken messages and d350 ¼ conversation. After having linked the items independently, the raters compared the results and in cases of disagreement, 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
2467
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 integrates 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 professionals (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), physiotherapists (55 participants), occupational therapists (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 categories from the linking procedures of the GOSE (27 categories) and the QOLIBRI (19 categories), which were not included in the original checklist. Following 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; 0 ¼ no impairment; 1 ¼ mild impairment/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 4 ¼ complete impairment/difficulty (problem present more than 95% of the time, with an intensity, which is totally disrupting the person’s day-today life and which happens everyday over the last 30 days). The qualifiers of environment (e) were graded from 0 to þ4 (0 ¼ no barriers/facilitators to 4 ¼ complete barrier and þ4 ¼ complete facilitator). The coding procedure has been described in detail elsewhere [54]. The two raters coded the data from the documents 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).
2468
S. Koskinen et al.
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 component, and one belonged to the environment component. 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 functions (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 ‘Interpersonal 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 (Appendix 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 represented 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.
Outcome after TBI in ICF reference frame 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 represent 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 environment (e) is not completely covered by all the categories on the second-level classification, it is covered on the one-level classification, with the
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).
2469
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 professionals’ 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 quantitative 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 participants: 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 spoken messages) and Cog 6/b1565 (visuospatial perception), 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 remunerative 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 (represented by the prominent peaks in the middle of Figures 4 and 5). Ability to carry out domestic activities (d640 doing housework) also corresponded
2470
S. Koskinen et al.
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.
in the assessments of the professionals and the participants. On the Self scale the professionals’ evaluation 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 professionals’ 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 professionals, 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 interactions and relationships’ (e.g. relationships with family, friends, partner, sexual relationships) followed by d9 ‘Community, social and civic life’ (participation in social and leisure activities). On the QOLIBRI Self scale, the professionals rarely recorded problems regarding the participants’ motivation, body image or experience of self (‘The way you look’, ‘The way you perceive yourself’, ‘Your selfesteem’), 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,
Outcome after TBI in ICF reference frame and that it is desirable to define and validate ICFrelated 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 QOLIBRI 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 comprehensively; together, these two scales embraced each of the nine chapters. Chapter d7 ‘Interpersonal interactions and relations’ was most completely covered, followed by d8 ‘major life areas’ and d9 ‘Community, 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 measures for the evaluation of persons with TBI. At the
2471
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 satisfaction with their health and well-being. As a patient reported outcome measure, it captures a different perspective on outcome than is provided by assessments 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 functions) 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
2472
S. Koskinen et al.
utterly important to the HRQoL of the person concerned 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 relatively 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 attention. In the daily clinical practice of neurorehabilitation, the domains related to interpersonal relationships, social and leisure activities, self, and attitudes tend to be less actively assessed and documented than impairments in mental or physical functions. 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 neuropsychotherapy [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 documentation 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 functioning might 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 moderately 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 limitations 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 according 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 common documentation protocol. By that, we aimed at consistency in the assessment, care and documentation 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
Outcome after TBI in ICF reference frame professionals from different countries and different settings (a rehabilitation centre in Finland and a university psychology department in Scotland), representing one professional background (neuropsychology). 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 distinguish 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 relationships 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 wellbeing, 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 complement 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
2473
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 responsible for the content and writing of the paper. This study was funded by EVO funding of the Ka¨pyla¨ Rehabilitation Centre, and by grants from the Alfred Kordelin Foundation, Finland, and the Finnish Cultural Foundation. References 1. Jennett B, Bond M. Assessment of outcome after severe brain damage. Lancet 1975;305:480–484. 2. Wilson JT, Pettigrew LE, Teasdale GM. Structured interviews for the Glasgow Outcome Scale and the Extended Glasgow Outcome Scale: guidelines for their use. J Neurotrauma 1998;15:573–585. 3. Dijkers MP. Quality of life after traumatic brain injury: a review of research approaches and findings. Arch Phys Med Rehabil 2004;85:S21–S35. 4. Coons SJ, Rao S, Keininger DL, Hays RD. A comparative review of generic quality-of-life instruments. Pharmacoeconomics 2000;17:13–35. 5. Fuhrer M. Subjectifying quality of life as a medical rehabilitation outcome. Disabil Rehabil 2000;22:481–489. 6. Dijkers M. Measuring quality of life: methodological issues. Am J Phys Med Rehabil 1999;78:286–300. 7. Mailhan L, Azouvi P, Dazord A. Life satisfaction and disability after severe traumatic brain injury. Brain Inj 2005; 19:227–238. 8. Ueda S, Okawa Y. The subjective dimension of functioning and disability: what is it and what is it for? Disabil Rehabil 2003;25:596–601. 9. WHOQoL Group. Study protocol for the World Health Organization project to develop a quality of life assessment instrument [WHOQOL]. Qual Life Res 1993;2:153–159. 10. Bullinger M, Azouvi P, Brooks N, Basso A, Christensen AL, Gobiet W, Greenwood R, Hu¨tter B, Jennett B, Maas A, Truelle JL, von Wild KR; TBI Consensus Group. Quality of life in patients with traumatic brain injury-basic issues, assessment and recommendations. Restor Neurol Neurosci 2002; 20:111–124. 11. Corrigan J, Bogner J. Latent factors in measures of rehabilitation outcomes after traumatic brain injury. J Head Trauma Rehabil 2004;19:445–458. 12. Neugebauer E, Bouillon B, Bullinger M, Wood-Dauphinee S. Quality of life after multiple trauma – summary and recommendations of the consensus conference. Restor Neurol Neurosci 2002;20:161–167. 13. Van Baalen B, Odding E, Maas AI, Ribbers GM, Bergen MP, Stam HJ. Traumatic brain injury: classification of initial severity and determination of functional outcome. Disabil Rehabil 2003;25:9–18. 14. Von Steinbu¨chel N, Petersen C, Bullinger M; QOLIBRI group. Assessment of health-related quality of life in persons after traumatic brain injury – development of the Qolibri, a specific measure. Acta Neurochir Suppl 2005;93:43–49. 15. Andelic N, Sigurdardottir S, Schanke AK, Sandvik L, Sveen U, Roe C. Disability, physical health and mental health 1 year after traumatic brain injury. Disabil Rehabil 2010;32:1122–1131.
2474
S. Koskinen et al.
16. Kozlowski O, Pollez B, Thevenon A, Dhellemmes P, Rousseaux M. Outcome and quality of life after three years in a cohort of patients with severe traumatic brain injury. Ann Readapt Med Phys 2002;45:466–473. 17. Thornhill S, Teasdale GM, Murray GD, McEwen J, Roy CW, Penn KI. Disability in young people and adults one year after head injury: prospective cohort study. BMJ 2000;320:1631– 1635. 18. Whitnall L, McMillan TM, Murray GD, Teasdale GM. Disability in young people and adults after head injury: 5–7 year follow up of a prospective cohort study. BMJ 2006;77: 640–645. 19. Consensus conference. Rehabilitation of persons with traumatic brain injury. NIH consensus development panel on rehabilitation of persons with traumatic brain injury. JAMA 1999;282:974–983. 20. Zitnay GA, Zitnay KM, Povlishock JT, Hall ED, Marion DW, Trudel T, Zafonte RD, Zasler N, Nidiffer FD, DaVanzo J, Barth JT. Traumatic brain injury research priorities: the Conemaugh International Brain Injury Symposium. J Neurotrauma 2008;25:1135–1152. 21. Wood RL, Rutterford NA. Psychosocial adjustment 17 years after severe brain injury. J Neurol Neurosurg Psychiatry 2006;77:71–73. 22. Pagulayan KF, Temkin NR, Machamer J, Dikmen SS. A longitudinal study of health-related quality of life after traumatic brain injury. Arch Phys Med Rehabil 2006;87: 611–618. 23. Seibert PS, Reedy DP, Hash J, Webb A, Stridh-Igo P, Basom J, Zimmerman CG. Brain injury: quality of life’s greatest challenge. Brain Inj 2002;16:837–848. 24. Machamer J, Temkin N, Dikmen S. Significant other burden and factors related to it in traumatic brain injury. J Clin Exp Neuropsychol 2002;24:420–433. 25. Koskinen S. Quality of life 10 years after a very severe traumatic brain injury (TBI): the perspective of the injured and the closest relative. Brain Inj 1998;12:631–648. 26. Corrigan JD, Bogner JA, Mysiw WJ, Clinchot D, Fugate L. Life satisfaction after traumatic brain injury. J Head Trauma Rehabil 2001;16:543–555. 27. Hibbard MR, Ashman TA, Spielman A, Chun D, Charatz HJ, Melvin S. Relationship between depression and psychosocial functioning after traumatic brain injury. Arch Phys Med Rehabil 2004;85(suppl 2): S43–S53. 28. Underhill AT, Lobello SG, Stroud TP, Terry KS, Devivo MJ, Fine PR. Depression and life satisfaction in patients with traumatic brain injury: a longitudinal study. Brain Inj 2003; 17:973–982. 29. Vickery CD, Gontkovsky ST, Caroselli JS. Self-concept and quality of life following acquired brain injury: a pilot investigation. Brain Inj 2005;19:657–665. 30. Jorge RE. Neuropsychiatric consequences of traumatic brain injury: a review of recent findings. Curr Opin Psychiatry 2005;18:289–299. 31. Baumann CR, Werth E, Stocker R, Ludwig S, Bassetti CL. Sleep–wake disturbances 6 months after traumatic brain injury: a prospective study. Brain 2007;130:1873–1883. 32. Cantor JB, Ashman T, Gordon WG, Ginsberg A, Engmann C, Egan E, Spielman L, Dijkers M, Flanagan S. Fatigue after traumatic brain injury and its impact on participation and quality of life. J Head Trauma Rehabil 2008;23:41–51. 33. Hoffman JM, Pagulayan KF, Zawaideh N, Dikmen S, Temkin N, Bell KR. Understanding pain after traumatic brain injury. Impact on community participation. Am J Phys Med Rehabil 2007;86:962–969. 34. Branca B, Lake AE. Psychological and neuropsychological integration in multidisciplinary pain management after TBI. J Head Trauma Rehabil 2004;19:40–57.
35. Dahlberg C, Hawley L, Morey C, Newman J, Cusick CP, Harrison-Felix C. Social communication skills in persons with post-acute traumatic brain injury: three perspectives. Brain Inj 2006;20:425–435. 36. McCarthy ML, Dikmen SS, Langlois JA, Selassie AW, Gu JK, Horner MD. Self-reported psychosocial health among adults with traumatic brain injury. Arch Phys Med Rehabil 2006;87:953–961. 37. von Steinbuechel N, Wilson L, Gibbons H, Hawthorne G, Hofer S, Schmidt S, Bullinger M, Maas A, Neugebauer E, Powell J, von Wild K, Zitnay G, Bakx W, Christensen A-L, Koskinen S, Formisano R, Sarajuuri J, Sasse N, Truelle J-L, QOLIBRI Task Force. Quality of life after brain injury (QOLIBRI) – scale validity and correlates of quality of life. J Neurotrauma 2010;27:1157–1165. 38. Pierce CA, Hanks RA. Life satisfaction after traumatic brain injury and the World Health Organization model of disability. Am J Phys Med Rehabil 2006;85:889–898. 39. Oppermann JD. Interpreting the meaning individuals ascribe to returning to work after traumatic brain injury: a qualitative approach. Brain Inj 2004;18:941–955. 40. World Health Organization. International Classification of Functioning, Disability and Health: ICF. Geneva: World Health Organization; 2001. 41. Cieza A, Stucki G. Content comparison of health related quality of life (HRQOL) instruments based on the international classification of functioning, disability and health (ICF). Qual Life Res 2005;14:1225–1237. 42. Cieza A, Brockow T, Ewert T, Amman E, Kollerits B, ¨ stun B, Stucki G. Linking health status Chatterji S, U measurements to the international classification of functioning, disability and health. J Rehabil Med 2002;34:205– 210. 43. World Health Organization. ICF Checklist Version 2.1a Clinician form. Electronic Citation. http://www.who.int/ classifications/icf/training/icfchecklist.pdf. Last accessed April 2011. ¨ stun TB, Chatterji S, Kostanjsek N, 44. Cieza A, Ewert T, U Stucki G. Development of ICF core sets for patients with chronic conditions. J Rehabil Med 2004;36(suppl 44): 9–11. 45. Bernabeu M, Laxe S, Lopez R, Stucki G, Ward A, Barnes M, Kostanjsek N, Reed G, Tate R, Whyte J, Zasler N, Cieza A. Developing core sets for persons with traumatic brain injury based on the International Classification of Functioning, Disability, and Health. Neurorehabil Neural Repair 2009; 23:464–467. 46. Aiachini B, Pisoni C, Cieza A, Cazzulani B, Giustini A, Pistarini C. Italian network. Developing ICF core sets for subjects with traumatic brain injury: an Italian clinical perspective. Eur J Phys Rehabil Med 2010;46:27–36. 47. Electronic Citation. http://www.icf-research-branch.org/icfcore-sets-projects/neurological-conditions/development-oficf-core-sets-for-traumatic-brain-injury-tbi.html. Last accessed February 2011. 48. Stucki G, Ewert T, Cieza A. Value and application of the ICF in rehabilitation medicine. Disabil Rehabil 2003;25: 628–634. ¨ stun B, Stucki 49. Cieza A, Geyh S, Chatterji S, Kostanjsek N, U G. ICF linking rules: an update based on lessons learned. J Rehabil Med 2005;37:212–218. 50. von Steinbuechel N, Wilson L, Gibbons H, Hawthorne G, Ho¨fer S, Schmidt S, Bulllinger M, Maas A, Neugebauer E, Powell J, von Wildt K, Zitnay G, Bakx W, Christensen A-L, Koskinen S, Sarajuuri J, Formisano R, Sasse N, Truelle J-L; QOLIBRI Task Force. Quality of life after brain injury (QOLIBRI) – scale development and metric properties. J Neurotrauma 2010;27:1167–1185.
Outcome after TBI in ICF reference frame 51. Truelle JL, Koskinen S, Hawthorne G, Sarajuuri J, Formisano R, Von Wild K, Neugebauer E, Wilson L, Gibbons H, Powell J, Bullinger M, Ho¨fer S, Maas A, Zitnay G, Von Steinbuechel N, Qolibri Task Force. Quality of life after traumatic brain injury: the clinical use of the QOLIBRI, a novel diseasespecific instrument. Brain Inj 2010;24:1272–1291. 52. Wilson JTL, Pettigrew LEL, Teasdale GM. Emotional and cognitive consequences of head injury in relation to the Glasgow outcome scale. J Neurol Neurosurg Psychiatry 2000;69:204–209. ¨ stun B, Cieza A. ICF-based 53. Stucki G, Kostanjsek N, U classification and measurement of functioning. Eur J Phys Rehabil Med 2008;44:315–328. 54. Koskinen S, Hokkinen E-M, Sarajuuri J, Alaranta H. Applicability of the ICF checklist to traumatically brain injured patients in post-acute rehabilitation settings. J Rehabil Med 2007;39:467–472.
2475
55. Scarponi F, Sattin D, Leonardi M, Raggi A, Zampolini M. The description of severe traumatic brain injury in light of the ICF classification. Disabil Rehabil 2009;31(suppl 1): S134–S143. 56. Mazaux JM, Richer E. Rehabilitation after traumatic brain injury in adults. Disabil Rehabil 1998;20:435–447. 57. Mazaux JM, Croze P, Quintard B, Rouxel L, Joseph PA, Richer E, Debelleix X, Barat M. Satisfaction of life and late psycho-social outcome after severe brain injury: a nine-year follow-up study in Aquitaine. Acta Neurochir Suppl 2002;79:49–51. 58. Stucki G, Cieza A, Melvin J. The International classification of functioning, disability and health: a unifying model for the conceptual description of the rehabilitation strategy. J Rehabil Med 2007;39:279–285. 59. Judd T. Neuropsychotherapy and community integration. Brain illness, emotions, and behavior. New York: Kluwer Academic/Plenum publishers; 1999.
Appendix 1. QOLIBRI items linked with the ICF categories. QOLIBRI item Part I: How satisfied are you with. . . A. Cognition (Cog) 1. Your ability to concentrate for example, when reading or keeping track of a conversation? 2. Your ability to express yourself and understand 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. Self (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. Daily Life & Autonomy (DLþA) 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 life?
ICF category
b140 Attention functions (d166 Reading)* (d350 Conversation)* d330 Speaking d310 Communicating – receiving spoken messages d350 Conversation b144 Memory functions d175 Solving problems b164 Higher level cognitive functions b1565 Visuospatial perception b160 Thought functions b1300 Energy level b1301 Motivation b180 Experience of self and time functions b1801 Body image nd (Non-definable) b180 Experience of self and time functions nd (Non-definable) d5 Self-care d460 Moving around in different locations d640 Doing housework (d630 Preparing meals)* , (d650 Caring for household objects)* d860 Basic economic transactions d850 Remunerative employment d820 School education{ d825 Vocational training{ d830 Higher education{ d910 Community life d920 Recreation and leisure (d9201 Sports)* (d9204 Hobbies)* (d9205 Socializing)* nd (Non-definable) (continued)
2476
S. Koskinen et al. Appendix 1. (Continued).
QOLIBRI item
ICF category
D. Social relationships (Soc) 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 a 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. Emotions (Emot) 1. Feeling lonely, even when you are with other people? 2. Feeling bored? 3. Feeling anxious? 4. Feeling sad or depressed? 5. Feeling angry or aggressive? B. Physical problems (Phys) 1. Slowness and/or clumsiness of movement? 2. Effects of any other injuries you sustained at the same time as your brain injury? 3. Pain including headaches? 4. Problems with seeing or hearing? 5. Overall, how bothered are you by the effects of your brain injury?
b152 Emotional functions (d770 Intimate relationships)* (d760 Family relationships)* (d7500 Informal relationships with friends)* d760 Family relationships d7500 Informal relationships with friends d7701 Spousal relationship d7702 Sexual relationships e4 Attitudes
b152 b152 b152 b152 b152
Emotional Emotional Emotional Emotional Emotional
functions functions functions functions functions
b1470 Psychomotor control b760 Control of voluntary movements functions nd – gh (Non-definable – general health) b280 Sensation of pain b28010 Pain in head and neck b210 Seeing functions{ b230 Hearing functions{ 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 1
ICF category Consciousness: Is the head injured person able to obey simple commands, or say any words?
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
2a
Independence in the home: Is the assistance of another person at home essential every day for some activities of daily living?
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
b110 Consciousness b16700 Reception of spoken language d210 Undertaking single tasks b16710 Expression of spoken language b16700 Reception of spoken language d210 Undertaking single tasks b16710 Expression of spoken language d3 Communication b1100 Consciousness e3 Support and relationships d6 Domestic life d230 Carrying out daily routine d5 Self-care d2202 Undertaking multiple tasks independently d5 Self-care d6 Domestic life d230 Carrying out daily routine d2202 Undertaking multiple tasks independently b1641 Organisation and planning d230 Carrying out daily routine d510 Washing oneself d5400 Putting on clothes d630 Preparing meals (continued)
Outcome after TBI in ICF reference frame
2477
Appendix 2. (Continued). GOSE item
ICF category
2b
d7 Interpers. interactions and relations d2402 Handling crisis d640 Doing housework d2202 Carrying out multiple tasks independently e3 Support and relationships e3 Support and relationships
2c
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. Was assistance at home essential before the injury?
3a
Independence outside the home: are they able to shop without assistance? This includes being able to plan what to buy, take care of money themselves and behave appropriately in public
3b
Were they able to shop without assistance before the injury?
4a
Independence outside the home: Are they able to travel locally without assistance? (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.)
4b
Were they able to travel without assistance before the injury?
5a
Work: Are they currently able to work to their previous capacity? 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 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. Were they either working or seeking employment before the injury
5b
5c
6a
Social and Leisure Activities: Are they able to resume regular social and leisure activities outside home? (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.)
6b
What is the extent of restriction on their social and leisure activities? (a) Participate a bit less: at least half as often (b) Participate much less: less than half as often (c) Unable to participate: rarely, if ever, take part
d230 Carrying out daily routine d2202 Undertaking multiple tasks independently e3 Support and relationships d6 Domestic life d230 Carrying out daily routine d6200 Shopping d2202 Undertaking multiple tasks independently b1641 Organisation and planning d860 Basic economic transactions d7202 Regulating behaviours within interactions d6200 Shopping d2202 Undertaking multiple tasks independently nc d470 Using transportation d475 Driving d2202 Undertaking multiple tasks independently d475 Driving d4702 Using public motorized transportation d4701 Using private motorized transportation d3600 Using telecommunication devices e1250 General product and technology for communication b16710 Expression of spoken language d330 Speaking d730 Relating with strangers d470 Using transportation d475 Driving d2202 Undertaking multiple tasks independently d850 Remunerative employment d850 Remunerative employment d8450 Seeking employment d820 School education d825 Vocational education d830 Higher education d850 Remunerative employment nc nc d850 Remunerative employment d8450 Seeking employment nc d910 Community life d920 Recreation and leisure d920 Recreation and leisure nd-ph nd-mh nc Not covered b1301 Motivation d910 Community life d920 Recreation & Leisure nc nc nc (continued)
2478
S. Koskinen et al. Appendix 2. (Continued).
GOSE item
ICF category
6c
Did they engage in regular social and leisure activities outside home before the injury?
7a
Family and Friendships: Have there been psychological problems that have resulted in ongoing family disruption or disruption to friendships? (Typical post-traumatic personality changes: quick temper, irritability, anxiety, insensitivity to others, mood swings, depression and unreasonable or childish behaviour.)
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. Were there problems with family or friends before the injury?
7c 8a
Return to normal life: Are there any other current problems relating to the injury which affect daily life? (Other typical problems reported after head injury: headaches, dizziness, tiredness
Sensitivity to noise or light
Slowness, memory failures, and concentration problems.)
d910 Community life d920 Recreation and leisure nc b1 Mental functions d760 Family relationships d7500 Informal relationships with friends b152 Emotional functions b1263 Psychic stability b1263 Psychic stability b1521 Regulation of emotion b1522 Range of emotion d315 Communicating. . . receiving. . . d710 Basic interpersonal relationships b1263 Psychic stability b1522 Range of emotion b152 Emotional functions d7202 Regulating behaviours within interactions d760 Family relationships d7500 Informal relationships with friends d760 Family relationships d7500 Informal relationships with friends nd-gh d230 Carrying out daily routine b28010 Pain in head and neck b2401 Dizziness b1300 Energy level b4552 Fatiguability b230 Hearing functions e2501 Sound quality b21020 Light sensitivity e2401 Light quality b1470 Psychomotor control b144 Memory functions b140 Attention functions
Copyright of Disability & Rehabilitation is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
