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NeuroRehabilitation 36 (2015) 37–43 DOI:10.3233/NRE-141189 IOS Press

Rehabilitation of traumatic brain injury in the light of the ICF Sara Laxea,∗ , Alarcos Ciezab and Beatriz Castaño-Monsalvea a Brain

Injury Unit, Guttmann Institut-Hospital for Neurorehabilitation adscript UAB, Badalona, Barcelona, Spain of Southampton, Southampton, UK

b University

Abstract. INTRODUCTION: Traumatic brain injury is a sudden and unexpected condition that gives rise to different impairments in body functions and structures leading to dramatic life changes, not only to the patient but also to his or her family and ultimately in the wider society. As a health strategy, rehabilitation aims to reduce disability and increasing the quality of life of those people that suffer from TBI but also to reduce the social burden associated with it. Functioning is the starting point of rehabilitation and the use of measurement instruments and classifications are commonly used tools for its definition. Within the endorsement of the ICF by WHO, there is now a classification and a conceptual framework for the description of functioning providing an opportunity of a full understanding of the experience of TBI. OBJECTIVE: This paper aims to identify the utility of ICF in TBI as well as bringing new challenges for further clinical practice and research. CONCLUSIONS: ICF has shown itself to be useful in the content comparison of measurement instruments. It has also been used to describe the functional profile of individuals with TBI in both acute and chronic phases making it possible to draw comparisons across other health conditions. Furthermore, the development of the TBI ICF Core Sets provided an item bank to describe not only functional status but also to set goals and plan interventions. Overall, we now have a potentially useful tool in rehabilitation of TBI that allows us to understand the full burden of traumatic brain injury. Keywords: Traumatic brain injury, ICF, TBI ICF Core Sets, functioning, disability

1. Introduction Traumatic brain injury (TBI) is one of the leading causes of disability in the world with annual incidence of 10 million worldwide (Amaranath et al., 2014; Feigin et al., 2013; Roozenbeek, Maas, & Menon, 2013). The World Health Organization’s (WHO) Global Burden of Diseases report (WHO, s. f.) estimates that this number is likely to increase within the next 20 years thereby becoming an important public health issue. TBI is a sudden and unexpected condition that gives rise to different impairments in the body functions and structures that consequently produces life changes not only to the ∗ Address for correspondence: Sara Laxe, MD, PhD, Brain Injury Unit, Guttmann Institut-Hospital for Neurorehabilitation adscript UAB, Badalona, Barcelona, Spain. Tel.: +93 497 77 00/Ext: 3226; Fax: +93 497 77 03; E-mail: [email protected].

patient but also to his or her family and ultimately in the wider society (Dijkers, 2004; Forslund, Roe, Sigurdardottir, & Andelic, 2013; Graves, Sears, Vavilala, & Rivara, 2013). An increased awareness of the burden and disability after TBI has led to a higher interest in prevention management as well as rehabilitation programs. It has be demonstrated that TBI rehabilitation not only has a beneficial effect on patients’ quality of life, but also shortens the hospitalization time in acute units (Borg et al., 2011). Therefore, in addition to minimizing disability, rehabilitation may reduce health care costs making the intervention successful not only at individual but also at societal level (Stucki, Ewert, & Cieza, 2003). Even though rehabilitation seems to be a relatively new branch of medicine and health strategy, the concept is well-known and this was highlighted in the speech

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S. Laxe et al. / ICF and traumatic brain injury rehabilitation

given by Professor Riddoch (“Rehabilitation after Injuries to the Central Nervous System”, 1942) in front of the American Academy of Neurology. The high number of injuries to soldiers during the World Wars, lead to an increase in the demand for treatment. Professor Riddoch defined rehabilitation as the “Planned attempt under skilled direction by the use of all available measures to restore or improve the health, usefulness and happiness of those who have suffered an injury, (…) it´s further object is to return them to the service of the community in the shortest time (…) Although it is a new word, rehabilitation is an old purpose”. In this speech he anticipated the conceptual framework of health and disability that is used nowadays including the interaction of biological, social and individual factors. Traditionally, medicine has based its treatments on making etiological diagnosis, setting pharmacological or surgical treatments and ultimately analyzing the outcome based on measures, such as blood tests or radiological improvements (Cieza & Stucki, 2008). It is already known that rehabilitation needs a different paradigm based not only on etiologies but on functioning. Furthermore, it faces challenges such as the assessment of functioning, lack of taxonomy of rehabilitation treatments and interventions and overall subjectivity of perception of well-being (Hart, Ferraro, Myers, & Ellis, 2014; Whyte & Barrett, 2012). As an example, if a patient is diabetic and the glycemic level is 200 but decreases to 130 after a prescription of 40 units of insulin, both doctor and patient are likely to be satisfied. On the other hand if a patient with a brain injury is admitted to a neurorehabilitation unit with a FIM (Functional Independence Measure) score of 40 and discharged with a score of 90, despite the improvement there is no guarantee of patient’s or families’ satisfaction with the level of functioning acquired. One of the most important issues that professionals face with TBI rehabilitation is to answer the question “What is the prognosis?” Research shows a general dissatisfaction when doctors inform patients and their families about prognosis and what to expect after the head injury. One of the reasons for this it is that the doctors themselves may not be entirely sure of the prognosis (Lefebvre, Pelchat, Swaine, Gélinas, & Levert, 2005; Lefebvre & Levert, 2012). In fact, Perel (Perel, Edwards, Wentz, & Roberts, 2006) identified more than 100 prognostic models in TBI. The underlying reason for this lack of knowledge is because the majority of the research done in TBI is based on etiological and imaging classifications whereas a combination of functioning

classifications would provide a much more comprehensive view. Currently, there is a comprehensive and universally accepted framework to classify functioning, disability and health in persons with a TBI with the possibility of using the International Classification of Functioning, Disability and Health (ICF) that was endorsed by the World Health Assembly in 2001 (Laxe et al., 2013). The ICF contains an exhaustive list of globally acceptable descriptions of what can be relevant when to describe functioning, not only in people that suffered from TBI, but also in other health conditions. The ICF is a classification that allows for unifying and standardizing the language regarding functioning, disability and health. Additionally, its neutrality provides a common language that can be used by different professionals as typically happens in the rehabilitation of TBI.

2. ICF literature regarding TBI Considering the complexity of sequels after TBI and the chronicity of the condition that starts at the ICU and continues through the community integration, the ICF can be an optimal instrument to define the functioning status of TBI patients, which is a starting point not only for clinicians but also for researchers. Since its publication in 2001, many researchers have been studying the use of the ICF in the field of TBI. A majority of the research has been conceptual or related to the content validity of measurement instruments in TBI based on the linking of concepts identified in measurement instruments to ICF codes (Cieza et al., 2005). These mappings provide a valuable way of comparing a wide variety of instruments developed for TBI but at the same time they provide an opportunity for novel researchers to select the most appropriate instrument for a specific need for a certain study (Chung, Yun, & Khan, 2014; Laxe et al., 2012; Tate, Godbee, & Sigmundsdottir, 2013). Other studies have focused on identifying the most common problems in functioning in TBI patients from an empirical perspective at the clinic, as a qualitative study using focus groups, analyzing clinical records or interviewing professionals (Aiachini et al., 2010; Koskinen, Hokkinen, Sarajuuri, & Alaranta, 2007; Laxe et al., 2011; Pistarini, Aiachini, Coenen, & Pisoni, 2011; Sveen, Ostensjo, Laxe, & Soberg, 2012). As a way of operationalizing the use of the ICF, ICF Core Sets for TBI (Laxe et al., 2013) were published in 2013. A selection of the most salient categories of the ICF were determined in a Consensus Conference

S. Laxe et al. / ICF and traumatic brain injury rehabilitation

leading to a Comprehensive Core Set of 139 categories: as few as possible to be practical, but as many as necessary to accurately describe aspects of functioning relevant to persons with TBI. The Brief Core Set with 23 categories were derived from the Comprehensive Core Set and is a list of the ICF that serve as a minimal international standard for reporting functioning through the continuum of care and across sectors (see Table 1).

3. The clinical implementation of ICF in TBI At an individual and clinical level, the development of the TBI ICF Core Sets provided a bank of items to address functioning that can be used in rehabilitation not only for assessment but for defining goals and setting up interventions (Martinuzzi et al., 2010, 2013; Rauch, Cieza, & Stucki, 2008). The identification of goals and sharing them in an understandable way is a key point in patient-oriented medicine and a guarantee of a high probability of patient and family satisfaction (Pachalska, Talar, Macqueen, & Fra´nczuk, 2000; Pinto et al., 2012). Even though the purpose of the ICF is not to become a measurement tool itself, there are five qualifiers that can measure the dimension of the problem and some studies have shown differences in functioning between acute and chronic TBI patients (Laxe et al., 2011), as well as at discharge after a rehabilitation programme (Ptyushkin, Vidmar, Burger, & Marincek, 2010). Another advantage of using the TBI ICF Core Sets as a guide for the assessment is that it improves quality assurance of assessing the four different domains that interact in functioning. For example, research has shown that professionals tend to assess according to their area of knowledge (Laxe et al., 2014) and environmental factors that have a significant effect on functioning are not systematically assessed (Hoffman et al., 2014; Laxe et al., 2012). At an institutional level, the ICF model can be used to improve communication between different professionals involved in TBI neurorehabilitation. The rehabilitation plan, based on the ICF domains and using the ICF Core Sets, may also be used to enhance the clarity of team roles and can facilitate description of the patient and its evolution during the team meetings. The systematization of teams meetings has already been shown to improve professional functioning and communication (Tempest, Harries, Kilbride, & De Souza, 2012, 2013). Previous studies have also shown that even though the use of the ICF was time consuming, the satisfaction of professionals after its implementation

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Table 1 List of categories included in the Comprehensive Core Sets. Brief ICF Core Sets are marked with a∗ . The first level d5 has been included completely ICF code Body Functions (37) b110 b114 b126 b130 b134 b140 b144 b147 b152 b156 b160 b164 b167 b210 b215 b235 b240 b255 b260 b280 b310 b320 b330 b420 b455 b510 b525 b555 b620 b640 b710 b730 b735 b755 b760 b765 b770 Body Structures (2) s110 s710 Activities & Participation (63) d110 d115 d155 d160 d163 d166 d170 d175 d177 d210 d220 d230

ICF category title Consciousness functions∗ Orientation functions Temperament and personality functions Energy and drive functions∗ Sleep functions Attention functions∗ Memory functions∗ Psychomotor functions Emotional functions∗ Perceptual functions Thought functions Higher-level cognitive functions∗ Mental functions of language Seeing functions Functions of structures adjoining the eye Vestibular functions Sensations associated with hearing and vestibular function Smell function Proprioceptive function Sensation of pain∗ Voice functions Articulation functions Fluency and rhythm of speech functions Blood pressure functions Exercise tolerance functions Ingestion functions Defecation functions Endocrine gland functions Urination functions Sexual functions Mobility of joint functions Muscle power functions Muscle tone functions Involuntary movement reaction functions Control of voluntary movement functions∗ Involuntary movement functions Gait pattern functions Structure of brain∗ Structure of head and neck region

Watching Listening Acquiring skills Focusing attention Thinking Reading Writing Solving problems Making decisions Undertaking a single task Undertaking multiple tasks Carrying out daily routine∗

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S. Laxe et al. / ICF and traumatic brain injury rehabilitation Table 1 (Continued)

Table 1 (Continued)

ICF code

ICF category title

ICF code

d240 d310

Handling stress and other psychological demands Communicating with - receiving - spoken messages Communicating with - receiving - nonverbal messages Speaking Producing nonverbal messages Writing messages Conversation∗ Using communication devices and techniques Changing basic body position Maintaining a body position Transferring oneself Lifting and carrying objects Fine hand use Hand and arm use Walking∗ Moving around Moving around using equipment Using transportation Driving Washing oneself Caring for body parts Toileting Dressing Eating Drinking Looking after one’s health Acquisition of goods and services Preparing meals Doing housework Assisting others Basic interpersonal interactions Complex interpersonal interactions∗ Relating with strangers Formal relationships Informal social relationships Family relationships∗ Intimate relationships Vocational training Higher education Apprenticeship (work preparation) Acquiring, keeping and terminating a job∗ Remunerative employment Non-remunerative employment Basic economic transactions Complex economic transactions Economic self-sufficiency Community life Recreation and leisure∗ Religion and spirituality

Environmental Factors (41) e1100 e1101 e1108 e115

d315 d330 d335 d345 d350 d360 d410 d415 d420 d430 d440 d445 d450 d455 d465 d470 d475 d510 d520 d530 d540 d550 d560 d570 d620 d630 d640 d660 d710 d720 d730 d740 d750 d760 d770 d825 d830 d840 d845 d850 d855 d860 d865 d870 d910 d920 d930

e120 e125 e135 e150 e155 e160 e165 e210 e250 e310 e315 e320 e325 e330 e340 e355 e360 e410 e415 e420 e425

e440 e450 e455 e460 e515 e525 e535 e540 e550 e570 e575 e580 e585 e590

was high (Verhoef, Toussaint, Putter, ZwetslootSchonk, & Vliet Vlieland, 2008), and probably would save time in the long term. At a macro level, the ICF is a potentially useful tool for disability data sourcing. Its neutrality in terms of etiology gives an excellent opportunity to determine

ICF category title

Food Drugs Non-medicinal drugs and alcohol Products and technology for personal use in daily living∗ Products and technology for personal indoor and outdoor mobility and transportation∗ Products and technology for communication Products and technology for employment Design, construction and building products and technology of buildings for public use Design, construction and building products and technology of buildings for private use Products and technology of land development Assets Physical geography Sound Immediate family∗ Extended family Friends∗ Acquaintances, peers, colleagues, neighbours and community members People in positions of authority Personal care providers and personal assistants Health professionals Other professionals Individual attitudes of immediate family members Individual attitudes of extended family members Individual attitudes of friends Individual attitudes of acquaintances, peers, colleagues, neighbours and community members Individual attitudes of personal care providers and personal assistants Individual attitudes of health professionals Individual attitudes of other professionals Societal attitudes Architecture and construction services, systems and policies Housing services, systems and policies Communication services, systems and policies Transportation services, systems and policies Legal services, systems and policies Social security services, systems and policies∗ General social support services, systems and policies Health services, systems and policies∗ Education and training services, systems and policies Labour and employment services, systems and policies

patient’s needs according to their functioning status and not according to the etiological diagnosis. The research conducted by Khan (Khan & Amatya, 2013) showed how an ICF-based profile gave an opportunity

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to compare different conditions that affected the brain and provided information, such as in the case of brain tumor patients who are more likely to share functioning commonalities with TBI patients and not those with stroke. All these circumstances can be of a great use in electronic clinical records and the development of algorithms of clustering patients according not only to etiology but also on functioning. Using the ICF can lead to a new basis for development of new diagnostic case groups and also for benchmarking in hospitals. This joint use of both classifications would not only provide information of the severity of the disease but also of its impact (Kostanjsek, Escorpizo, et al., 2011; Kostanjsek, Rubinelli, et al., 2011; Kohler et al., 2012).

4. Conclusion and clinical implications We now have a potentially useful tool in rehabilitation of TBI that allows us to understand the full burden of TBI. The use of a common language will benefit care planning in rehabilitation programmes of TBI patients in interdisciplinary care and across time. With a better communication and standardization of plans according to the functioning, the ICF is expected to improve treatment quality.

5. Future research There is still a need for more research in the use of the TBI ICF Core Sets including its standardization and operationalization in clinical settings. There is also a need to implement electronic records in an ehealth era to get information regarding functioning that later on can be data mined in combination with other classifications more widely used in medicine, such as the ICD. This effort will provide a good opportunity in defining taxonomy for rehabilitation interventions. Nevertheless, besides this theoretical comprehensive approach of functioning capturing a broad dimension of the patient’s situation, the challenge is to evaluate the real impact on patient’s improvement of functioning. Furthermore, personal factors are undoubtedly a great influence on individual goals and expectations.

Acknowledgements The authors want to thank Mr. Niels Juist for the editing and English corrections of the manuscript.

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Rehabilitation of traumatic brain injury in the light of the ICF.

Traumatic brain injury is a sudden and unexpected condition that gives rise to different impairments in body functions and structures leading to drama...
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