Journal http://jcn.sagepub.com/ of Child Neurology
International Classification of Functioning, Disability and Health (ICF) as a Framework for Change: Revolutionizing Rehabilitation Jilda N. Vargus-Adams and Annette Majnemer J Child Neurol published online 21 May 2014 DOI: 10.1177/0883073814533595 The online version of this article can be found at: http://jcn.sagepub.com/content/early/2014/05/21/0883073814533595 A more recent version of this article was published on - Jul 20, 2014
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Original Article
International Classification of Functioning, Disability and Health (ICF) as a Framework for Change: Revolutionizing Rehabilitation
Journal of Child Neurology 1-6 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/0883073814533595 jcn.sagepub.com
Jilda N. Vargus-Adams, MD, MSc1, and Annette Majnemer, OT, PhD2
Abstract The International Classification of Functioning, Disability and Health (ICF) utilizes domains of body functions and structures, activities and participation, as well as environmental and personal factors to fully encapsulate the concepts of health and disability. The International Classification of Functioning, Disability and Health provides a rich and holistic understanding of functioning that is particularly valuable in the setting of childhood disability and rehabilitation. With applicability that enhances a nuanced understanding of each child within their family, school, and community, the International Classification of Functioning, Disability and Health also ensures facile and meaningful communication between professionals. Use of the International Classification of Functioning, Disability and Health promotes improved treatment plans for individual children and for larger programmatic decisions. This article demonstrates how the International Classification of Functioning, Disability and Health has reinvented the language and understanding of childhood disability and rehabilitation. Keywords function, rehabilitation, disability, ICF Received April 07, 2014. Accepted for publication April 07, 2014.
Overview of the Classification The International Classification of Functioning, Disability and Health (ICF) reinvented our understanding of health and disability1 and standardized language to facilitate communication. Endorsed by the World Health Organization in 2001 as the international standard to describe and measure these concepts, the International Classification of Functioning, Disability and Health is a classification system that addresses each individual’s status in a holistic framework. This framework is a new paradigm that considers the human experience as an evershifting state of degrees of health and disability. The International Classification of Functioning, Disability and Health includes domains of Body Functions and Structures as well as Activities and Participation. These domains are complemented by the contextual factors of Environmental and Personal Factors (Figure 1). With this rubric, the International Classification of Functioning, Disability and Health moves beyond disability as a merely biologic or medical phenomenon and instead looks at the impact of disability across a person’s functioning and life experience. The specifics of the International Classification of Functioning, Disability and Health domains are straightforward. Functioning (what one does) is counterbalanced by disability (how one is limited) and these concepts together embody health. Body Functions and Structure refers to physiology (including
psychological functions) and anatomy of the body respectively and abnormalities of these are referred to as impairments, examples of which would include muscle weakness, poor attention span, periventricular leukomalacia or joint contracture. Body functions and structures are often the target of medical interventions in efforts to improve overall health. Activity is defined as the execution of a task or action, such as walking, and any difficulty that cannot be ascribed to typical development is called an activity limitation, such as inability to walk up stairs, drink from a cup or read a story. Participation is the involvement of an individual in a life situation and difficulties in this arena are termed participation restriction, such as not attending school or engaging in leisure activities. As with all
1
Departments of Pediatrics and Neurology & Rehabilitation Medicine, Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH, USA 2 School of Physical & Occupational Therapy, Department of Pediatrics and Neurology & Neurosurgery, McGill University, Montreal Children’s Hospital, McGill University Health Centre, Montreal, Quebec, Canada Corresponding Author: Jilda N. Vargus-Adams, MD, MSc, Division of Pediatric Rehabilitation MLC 4009, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH 45229-3039, USA. Email: [email protected]
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Figure 1. The International Classification of Functioning, Disability and Health.
domains, limitations are norm-referenced for age- and developmental-appropriateness. For many people, participation is the ultimate goal, acknowledging that optimal involvement with life situations is what truly matters, above and beyond how well the body works.2 Activities and participation are categorized together in the International Classification of Functioning, Disability and Health, and categorized in topical groups (eg, communication; learning and applying knowledge; mobility; community, social, and civic life). The International Classification of Functioning, Disability and Health also includes 2 contextual factors (personal and environmental) representing the social and societal fabric of disablement. Environmental factors are external to the person and arise from the individual’s physical situation, community, government, institutions, and/or cultural milieu. These can include, for example, physical barriers to accessing buildings, societal or provider attitudes, access to treatment, and cost of assistive technologies that promote function. Personal factors are intrinsic to the individual, including everything from gender and race to coping styles and lifestyle preferences. These contextual factors can either facilitate or hinder functional and health, and are therefore important to consider as they are often potentially modifiable. All interventions can be considered changes in environmental factors, but distinctions are readily made between a medical model wherein the underlying aims of interventions concern improving Body Structures and Function and the International Classification of Functioning, Disability and Health model’s focus on improving Activities and Participation. The International Classification of Functioning, Disability and Health is particularly attractive as a means to understand cerebral palsy.3 Medical models of understanding health were generally linear and emphasized etiologies and specific treatments. For example, streptococcal pharyngitis begins with an exposure to bacteria that leads to fever and sore throat but can be ameliorated with antibiotics that also greatly reduce the risk of more severe sequelae. These largely medical models are useful in many conditions, but fall short in nuanced situations like cerebral palsy wherein causation is not necessarily clear, interventions seldom resolve underlying medical issues, and
mediators of outcomes are wide-ranging. The International Classification of Functioning, Disability and Health illuminates the interactions of the child with cerebral palsy in the world at large and demonstrates how disability is a 2-way street of each person’s capacities and performance (body structures, function, activities) intersecting with his or her community. The community represents some of the environmental factors that are key to understanding function and distinguish this model from others. With the International Classification of Functioning, Disability and Health, different things become important to understand including the desires of each child and family and their individual lived experience. In addition, the International Classification of Functioning, Disability and Health requires a thoughtful regard for the environment and provides multiple options for supporting each person in achieving their highest functioning and health.4 For example, using a medical model, a child with cerebral palsy would receive spasticity management with a goal of a more effective gait pattern. It might be considered that this intervention could, in turn, help a child with cerebral palsy walk faster and thereby possibly allow the child to keep up with her peers on a school field trip, although these participation domains (ie, mobility, interpersonal interactions and relationships, learning and applying knowledge) are not necessary in the medical model. The International Classification of Functioning, Disability and Health model allows for a unidirectional association of effects (spasticity reduction improves walking) but also allows for a broader approach to examine effects across dimensions (if the child engages more with her recreational soccer team, maybe that would improve her endurance and produce similar results) or effects that are extrinsic to the child (providing her with a mobility device for the field trip). Where the medical model emphasizes each individual’s deficits and direct mechanisms to alleviate those deficits, the International Classification of Functioning, Disability and Health model is value-neutral and embraces the full range of positive and negative factors intrinsic and extrinsic to the individual. With this inclusive focus, each component of health is potentially modifiable with personal and environmental factors. The International Classification of Functioning, Disability and Health is a conceptual model as well as a lengthy document that assigns specific codes to virtually every conceivable concept of health and disability with modifiers that reflect severity; moreover a parallel International Classification of Functioning, Disability, and Health–Children and Youth Version (ICF-CY) is also available.5 In clinical practice, utilizing International Classification of Functioning, Disability and Health codes to classify children is not practical, but the International Classification of Functioning, Disability and Health model can provide a unifying perspective for understanding health and disability and can guide the evaluation and care of patients.6 With this basic understanding, we will consider how the International Classification of Functioning, Disability and Health informs clinical rehabilitation practice regarding children with cerebral palsy. The International Classification of Functioning, Disability and Health is particularly valuable as
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Table 1. Application of the International Classification of Functioning, Disability and Health to 2 Children With Cerebral Palsy. Patient
Body structures and functions
Destiny, Weakness, age 10 spasticity, contractures Hip subluxation Poor attention
Liam, age 3
Weakness, spasticity, contractures Dysphagia Poor weight gain/low body mass index Hearing impairment/ intellectual dysfunction
Activities and participation
Environmental factors
Personal factors
Limited independent mobility, cannot write Physical barriers (stairs), Eager to improve, goal to use her legibly, cannot attend birthday parties laws do not mandate walker always at school because of accessibility accessibility – Available, skilled Anxious about surgery surgeon Special education aide at With age, her behavior is more distinct Poor participation in learning along with from her peers and less acceptable in school is on medical classmates the classroom leave Doesn’t engage in play with classmates (who find her disruptive) No independent mobility, dependent in dressing, cannot explore independently
Physical and societal barriers
Poor safety awareness
Anxious, with oral aversion Unable to feed orally, does not participate in Enteral feeding is family mealtimes covered by insurance Grandmother is afraid of his gastrostomy tube Nonverbal, cannot understand speech, Cochlear implant team Chronic otitis media, very shy and unable to participate in conversation available introverted
a means to conceptualize the many ways in which children can achieve their goals and do what they find meaningful.7 We will provide a practical overview of how this model can be applied by developing 2 vignettes.
Case Vignette 1 Destiny is 10 years old. She was born at 26 weeks gestational age and had a complicated and prolonged neonatal intensive care course. Her brain magnetic resonance imaging shows bilateral moderate periventricular white matter injury. Ultimately, she did well and she has no medical issues besides Gross Motor Function Classification System III spasticdystonic diparetic cerebral palsy and mild attention-deficit hyperactivity disorder (ADHD). Destiny lives with her parents and 2 younger, typically developing siblings and attends public school in the fourth grade. When viewed through the lens of the International Classification of Functioning, Disability and Health, Destiny (described in part in Table 1) is more than her immediately visible mobility impairments. Traditional medical approaches with children like Destiny would focus on interventions aimed at the body structures and functions level. Destiny would receive medication and therapy (environmental changes) to address her spasticity and weakness (body structure and function) with the aim of improving her walking (activity), even though walking was not specifically targeted. Similarly, she would be prescribed medication and her family and school would receive education on how to manage her attention problems. She might be enrolled in a hip surveillance program to ensure that she had regular x-rays to evaluate her degree of subluxation and to
facilitate appropriate referrals to specialist providers when indicated. These interventions have a solid evidence base and are arguably very appropriate, but their effects on Destiny’s overall level of functioning and health might not be substantial. Destiny’s cerebral palsy cannot be cured in that the primary impairments of her brain structure and function are not, at present, reversible and the manifestations of spasticity, weakness, and impaired motor control are only partially amenable to intervention. Even when the domains of body structures and functions demonstrate improvement, ‘‘downstream’’ improvement in activities or participation is not guaranteed.8 For individuals like Destiny, the International Classification of Functioning, Disability and Health challenges us to revisit our conceptualization of available interventions. This means that our emphasis shifts from fixing a deficit at the level of body structures and functions to exploring options for leveraging far greater environmental impacts and individual strengths. The scope of vision widens to consider how to achieve the fullest participation possible. Now, Destiny might access all the treatments already described, but her providers might also explore ways to advocate for better accessibility in her community so that she can use her walker to join her friends at the bowling alley. Because optimal participation requires that Destiny’s goals are incorporated in a meaningful way, perhaps her therapist would work on prioritizing goals based on Destiny’s personal preferences and needs to take advantage of her determination, a positive personal factor. The larger picture of her possible poor response to stimulant medication and the extent of expertise with attention problems among school personnel become key environmental factors in any treatment plan that aims to aid her success in school and
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restore her relationships with her peers and thereby maximizing her participation. When Destiny’s providers consider her cerebral palsy and other conditions in the broad context of the International Classification of Functioning, Disability and Health, the range of potential mechanisms to improve her functioning and health expand as well. For Destiny and her providers, important ‘‘treatments’’ might lie outside the medical arena and can be best addressed by public policy, which can vary markedly internationally.
Case Vignette 2 Liam is 3 years old. He was born at term but had seizures that began in the nursery and was found to have congenital cytomegalovirus infection. His brain magnetic resonance imaging (MRI) scan demonstrates diffuse parenchymal volume loss, porencephalic cleft, migrational abnormalities, as well as extensive calcifications. Liam has many ongoing medical issues including epilepsy, profound hearing loss, intellectual disability, dysphagia, and Gross Motor Function Classification System level V spastic quadriparetic cerebral palsy, all of which can be understood as limitations in body structures and functions. Liam lives with his mother and grandmother and attends preschool inconsistently, which are pertinent environmental factors for him. Liam has many medical issues. These issues have profound effects on his health and well-being, but his health and functioning is also influenced by Liam’s status in his family and community. In a traditional medical model, his providers would focus on finding the right medications, feeding mechanisms, equipment, and therapy to address his underlying deficits. With the expanded ideas of the International Classification of Functioning, Disability and Health, it becomes possible to reduce Liam’s disability by evaluating the ways in which his personal situation and environment facilitate or hinder his functioning. While no known intervention could be expected to make Liam walk independently in that his underlying body structures and function cannot be repaired, Liam could still be provided the opportunity to try powered mobility, and his home and school could be adapted to be accessible and safe for him. His family could receive education and support to improve their effectiveness in caring for Liam and in advocating for his needs. These interventions that alter his environment do not treat Liam’s body structures or functions, but they could result in improved participation for Liam and in this way affect his functioning and health. Similarly, if he can’t swallow safely and is underweight, the International Classification of Functioning, Disability and Health model reminds us to consider how Liam can still participate in family mealtimes if he doesn’t eat by mouth and how to ensure his caregivers are able to provide him with adequate feeding. The responsibility is still to help Liam achieve his very best health, but the options for interventions are greatly expanded, with a focus on modifying tasks and the environment to promote autonomy and engagement in meaningful activities.
Many thoughtful providers had an International Classification of Functioning, Disability and Health perspective long before the International Classification of Functioning, Disability and Health was codified and published. These individuals consider wide-ranging impacts and concerns for their patients and then harness individual strengths and leverage community progress for the aid of their patients. These approaches have found a raison d’etre with the International Classification of Functioning, Disability and Health. With the International Classification of Functioning, Disability and Health framework, health is a holistic and ever-rebalancing state.
International Classification of Functioning, Disability and Health Applications to Rehabilitation Practice Holistic View of the Child Rehabilitation focuses on enhancing an individual’s abilities to perform tasks and participate meaningfully in everyday activities. This is achieved through the use of training and remediation techniques to acquire or improve skills and/or through adaptive and compensatory strategies that aim to modify the task or environment so as to promote functioning and independence.9 As such, the International Classification of Functioning, Disability and Health framework is readily integrated within rehabilitation approaches, to characterize the child’s functioning and health in the context of relevant personal and environmental factors that can facilitate (enable) or hinder (disable) performance. Therefore, the rehabilitation specialist not only considers the child’s medical condition and associated impairments, activity limitations, and participation restrictions but also recognizes that the disabilities experienced are, in part, socially created (eg, physical barriers, attitudes of others, lack of resources and supports).10,11 All these components are evaluated as part of a holistic view of the child’s functioning. Furthermore, the International Classification of Functioning, Disability and Health framework differentiates the child’s capacity (what they can do in optimal circumstances) versus performance (what they actually do in the real life context). This is important to differentiate in clinical practice, so as to address the obstacles to performance in the child’s home, school and community environments.12 The terminology used in the International Classification of Functioning, Disability and Health is not discipline-specific and therefore provides a common language in which health professionals can work as a team to describe the spectrum of a child’s functioning and health.11 In reality, the uptake and use of the International Classification of Functioning, Disability and Health framework in clinical practice is highly variable. Some centers are familiar with International Classification of Functioning, Disability and Health concepts; however, there are no formal structures in place to ensure its applications to interdisciplinary care.13 For other centers, assessment strategies and domains evaluated consistently cover the International Classification of Functioning, Disability and Health spectrum of body structures and
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functions, activities and participation, and environmental factors, and these processes are a particular focus for occupational therapists and physical therapists.14,15 One center developed a ‘‘road-map’’ or clinical structure to promote integration of the International Classification of Functioning, Disability and Health into practice. Although providers voiced concern regarding the additional workload and organizational requirements of using this framework, with time they no longer felt constrained by this application and indicated that use improved communication between team members and with families16,17 Formal implementation of this International Classification of Functioning, Disability and Health–grounded framework is still a ‘‘work in progress,’’ although it is acknowledged that use optimizes collaborative goal setting and interdisciplinary communication, and a more global view of the child’s rehabilitation needs to promote functioning and health in all relevant environments. In particular, the International Classification of Functioning, Disability and Health focus encourages greater emphasis on aspects of participation, felt to be important to the child’s well-being.18 In contrast, there has been widespread uptake of the International Classification of Functioning, Disability and Health by rehabilitation researchers.7,19
Selection of Measures As reviewed above, the International Classification of Functioning, Disability and Health provides a useful framework in which to consider all relevant aspects of the child’s functioning while also evaluating contextual factors that can positively or negatively influence functioning.20 The International Classification of Functioning, Disability and Health is part of university curricula in rehabilitation professional programs and supports students’ clinical reasoning skills and a holistic approach to care.21 In addition to selecting more traditional outcome measures associated with aspects of the child’s functioning (body functions such as spasticity and motor coordination; activities such as walking and dressing), attributes across all components, but especially contextual factors that can influence these primary outcomes could also be considered or even measured. In particular, these personal and environmental factors could interact within the context of therapy programs to modify outcomes. As a result, the rehabilitation provider can choose to focus on a number of contextual factors such as mastery motivation (level of persistence in performing challenging tasks), the priority goals for the child or caregiver (family preferences), and environmental barriers. To do so, appropriate assessments need to be selected such as the Canadian Occupational Performance Measure or Goal Attainment Scaling to identify child/family priority areas of concern, as well as other measures of personal attributes and environmental factors to identify areas for intervention.22 In recent years, investigators are linking specific items on standardized assessment tools to determine which areas of the International Classification of Functioning, Disability and Health are best aligned or represented with these measures.23 An in-depth overview of the
factors to consider in the selection of measures for children and youth with cerebral palsy appears in this issue.24
Program Planning and Interventions In recent years, there is a gradual shift in rehabilitation efforts, focusing not only on minimizing the child’s impairments in sensory, motor, and cognitive functions but also increasingly on modifying or adapting activities and the environmental attributes to optimize functioning, in spite of impairments.9,25 The biopsychosocial framework of the International Classification of Functioning, Disability and Health readily fits within this broadened approach to intervention. Treatment not only is directed at ‘‘fixing deficits’’ (eg, spasticity, muscle weakness, limited attention span, disuse of affected limb) or minimizing secondary complications (eg, contractures and deformities), but is also focused on health promotion strategies (eg, fitness and recreation, social engagement activities). Moreover, treatment can be directed at the child but also on the environment. For the latter, the contextual personal and environmental factors become particularly important in prioritizing preferred activities that can be adapted to enable participation.12 There is less emphasis on promoting ‘‘normal’’ or typical developmental patterns as traditional medical models had often pursued, but rather, finding solutions through training and adaptation to enable the child to be autonomous and functional, in activities that are age appropriate and meaningful, even in the face of significant limitations of body structure or function. In summary, the International Classification of Functioning, Disability and Health thinking has ensured that interventions are more multidimensional, focusing on skill development and adaptation in all relevant environments.26 The International Classification of Functioning, Disability and Health represents a powerful, accessible and meaningful framework to understand and describe disability and health. In the realm of childhood disability, the International Classification of Functioning, Disability and Health promotes key goals of understanding each child holistically, facilitating efficient and robust professional communication and guiding effective treatment and program planning. The International Classification of Functioning, Disability and Health should figure prominently for every professional working with children with developmental disabilities.
Key Take Home Messages
Application of the International Classification of Functioning, Disability and Health in the conceptualization of children with cerebral palsy broadens the focus from the disability (impairments and limitations the child experiences) to the broader life experience, to include consideration of personal and environmental factors that can positively or negatively influence health and functioning. The International Classification of Functioning, Disability and Health framework encourages a holistic view in
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the selection of outcomes measures and in medical and rehabilitation program planning to optimize functioning in all environments. The International Classification of Functioning, Disability and Health uses a common language understood by all health disciplines that encourages interdisciplinary collaboration to promote child health.
10.
11. 12.
Authors Contributions Both authors contributed equally to writing and editing this manuscript.
13.
Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors received no financial support for the research, authorship, and/or publication of this article.
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References 1. ICF. International Classification of Functioning, Disability and Health. Geneva: World Health Organization; 2001. Available at: http://www.who.int/icf. 2. Colver A, Thyen U, Arnaud C, et al. Association between participation in life situations of children with cerebral palsy and their physical, social, and attitudinal environment: a cross-sectional multicenter European study. Arch Phys Med Rehabil. 2012;93: 2154-2164. 3. Rosenbaum P, Stewart D. The World Health Organization International Classification of Functioning, Disability, and Health: a model to guide clinical thinking, practice and research in the field of cerebral palsy. Semin Pediatr Neurol. 2004;11:5-10. 4. 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. 5. World Health Organization. International Classification of Functioning, Disability and Health–Children & Youth Version (ICF-CY). Geneva: World Health Organization; 2007. 6. Simeonsson RJ, Leonardi M, Lollar D, et al. Applying the International Classification of Functioning, Disability and Health (ICF) to measure childhood disability. Disabil Rehabil. 2003; 25:602-610. 7. Schiariti V, Klassen A, Cieza A, et al. Comparing contents of outcome measures in cerebral palsy using the international classification of functioning (ICF-CY): A systematic review. Eur J Paediatr Neurol. 2014;18:1-12. 8. Wright V, Rosenbaum P. How do changes in body functions and structures, activity, and participation relate in children with cerebral palsy. Dev Med Child Neurol. 2008;50:283-289. 9. Majnemer A, Darrah J. New concepts in the rehabilitation of children with developmental disabilities: occupational therapy and physical therapy perspectives. In: Shevell M, ed. Neurodevelopmental Disabilities: Clinical and Scientific Foundations.
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International Review of Child Neurology Series. London: Mackeith Press; 2009:394-409. Fougerollas P, Noreau L, Bereron H, et al. Social consequences of long term impairments and disabilities: conceptual approach and assessment of handicap. Int J Rehabil Res. 1998;21:127-141. Jette AM. Toward a common language for function, disability and health. Phys Ther. 2006;86:726-734. Holsbeeke L, Ketelaar M, Schoemaker MM, Gorter JW. Capacity, capability, and performance: different constructs or three of a kind? Arch Phys Med Rehabil. 2009;90:849-855. Jeglinsky I, Slalminen AL, Carlberg EB, Autti-Ramo I. Rehabilitation planning for children and adolescents with cerebral palsy. J Pediatr Rehabil Med. 2012;5:203-215. Andrade PM, Rerreira FO, Mendonca AP, Haase VG. Content identification of the interdisciplinary assessment of cerebral palsy using the International Classification of Functioning, Disability and Health as reference. Disabil Rehabil. 2012;34:1790-1801. Vargus-Adams JN, Martin LK. Domains of importance for parents, medical professionals and youth with cerebral palsy considering treatment outcomes. Child Care Health Dev. 2010;37:276-281. Martinuzzi A, Salghetti A, Betto S, et al. The International Classification of Functioning, Disability and Health, version for children and youth as a roadmap for projecting and programming rehabilitation in a neuropaediatric hospital unit. J Rehabil Med. 2010;42:49-55. Salghetti AM, Betto S, Russo E, et al. Projecting and programming rehabilitation based on ICF-CY format in a neuropediatric hospital unit. Disabil Rehabil. 2009;31(suppl 1):S55-S60. Adolfsson M, Granlund M, Bjorck-Akesson E, et al. Exploring changes over time in habilitation professionals’ perceptions and applications of the International Classification of Functioning, Disability and Health, version for Children and Youth (ICF-CY). J Rehabil Med. 2010; 42:670-680. Dos Santos AN, Pavao SL, De Campos AC, Rocha NA. International Classification of Functioning, Disability and Health in children with cerebral palsy. Disabil Rehabil. 2012;34:1051-1058. Majnemer A. Assessment tools for cerebral palsy: new directions. Future Neurol. 2006;1:755-763. Jelsma J, Scott D. Impact of using the ICF framework as an assessment tool for students in paediatric physiotherapy: a preliminary study. Physiotherapy. 2011;97:47-54. McDougall J, Wright V. The ICF-CY and goal attainment scaling: benefits of their combined use for pediatric practice. Disabil Rehabil. 2009;31:1362-1372. Darsaklis V, Snider LM, Majnemer A, Mazer B. Assessments used to diagnose developmental coordination disorder: do their underlying constructs match the diagnostic criteria? Phys Occup Ther Pediatr. 2013;33:186-198. Wright V, Majnemer A. A toolbox of outcome measures for children with cerebral palsy: why, what, and how to use. J Child Neurol. 2014;this issue XXXX. Seelman KD. Rehabilitation science. Technol Disabil. 2000;12: 77-83. Manns PJ, Darrah J. Linking research and clinical practice in physical therapy: strategies for integration. Physiotherapy. 2006;92:88-94.
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International Classification of Functioning, Disability and Health (ICF) as a Framework for Change: Revolutionizing Rehabilitation Jilda N. Vargus-Adams and Annette Majnemer J Child Neurol published online 21 May 2014 DOI: 10.1177/0883073814533595 The online version of this article can be found at: http://jcn.sagepub.com/content/early/2014/05/21/0883073814533595 A more recent version of this article was published on - Jul 20, 2014
Published by: http://www.sagepublications.com
Additional services and information for Journal of Child Neurology can be found at: Email Alerts: http://jcn.sagepub.com/cgi/alerts Subscriptions: http://jcn.sagepub.com/subscriptions Reprints: http://www.sagepub.com/journalsReprints.nav Permissions: http://www.sagepub.com/journalsPermissions.nav
Version of Record - Jul 20, 2014 >> OnlineFirst Version of Record - May 21, 2014 What is This?
Downloaded from jcn.sagepub.com at TEXAS SOUTHERN UNIVERSITY on October 27, 2014
Original Article
International Classification of Functioning, Disability and Health (ICF) as a Framework for Change: Revolutionizing Rehabilitation
Journal of Child Neurology 1-6 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/0883073814533595 jcn.sagepub.com
Jilda N. Vargus-Adams, MD, MSc1, and Annette Majnemer, OT, PhD2
Abstract The International Classification of Functioning, Disability and Health (ICF) utilizes domains of body functions and structures, activities and participation, as well as environmental and personal factors to fully encapsulate the concepts of health and disability. The International Classification of Functioning, Disability and Health provides a rich and holistic understanding of functioning that is particularly valuable in the setting of childhood disability and rehabilitation. With applicability that enhances a nuanced understanding of each child within their family, school, and community, the International Classification of Functioning, Disability and Health also ensures facile and meaningful communication between professionals. Use of the International Classification of Functioning, Disability and Health promotes improved treatment plans for individual children and for larger programmatic decisions. This article demonstrates how the International Classification of Functioning, Disability and Health has reinvented the language and understanding of childhood disability and rehabilitation. Keywords function, rehabilitation, disability, ICF Received April 07, 2014. Accepted for publication April 07, 2014.
Overview of the Classification The International Classification of Functioning, Disability and Health (ICF) reinvented our understanding of health and disability1 and standardized language to facilitate communication. Endorsed by the World Health Organization in 2001 as the international standard to describe and measure these concepts, the International Classification of Functioning, Disability and Health is a classification system that addresses each individual’s status in a holistic framework. This framework is a new paradigm that considers the human experience as an evershifting state of degrees of health and disability. The International Classification of Functioning, Disability and Health includes domains of Body Functions and Structures as well as Activities and Participation. These domains are complemented by the contextual factors of Environmental and Personal Factors (Figure 1). With this rubric, the International Classification of Functioning, Disability and Health moves beyond disability as a merely biologic or medical phenomenon and instead looks at the impact of disability across a person’s functioning and life experience. The specifics of the International Classification of Functioning, Disability and Health domains are straightforward. Functioning (what one does) is counterbalanced by disability (how one is limited) and these concepts together embody health. Body Functions and Structure refers to physiology (including
psychological functions) and anatomy of the body respectively and abnormalities of these are referred to as impairments, examples of which would include muscle weakness, poor attention span, periventricular leukomalacia or joint contracture. Body functions and structures are often the target of medical interventions in efforts to improve overall health. Activity is defined as the execution of a task or action, such as walking, and any difficulty that cannot be ascribed to typical development is called an activity limitation, such as inability to walk up stairs, drink from a cup or read a story. Participation is the involvement of an individual in a life situation and difficulties in this arena are termed participation restriction, such as not attending school or engaging in leisure activities. As with all
1
Departments of Pediatrics and Neurology & Rehabilitation Medicine, Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH, USA 2 School of Physical & Occupational Therapy, Department of Pediatrics and Neurology & Neurosurgery, McGill University, Montreal Children’s Hospital, McGill University Health Centre, Montreal, Quebec, Canada Corresponding Author: Jilda N. Vargus-Adams, MD, MSc, Division of Pediatric Rehabilitation MLC 4009, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH 45229-3039, USA. Email: [email protected]
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Figure 1. The International Classification of Functioning, Disability and Health.
domains, limitations are norm-referenced for age- and developmental-appropriateness. For many people, participation is the ultimate goal, acknowledging that optimal involvement with life situations is what truly matters, above and beyond how well the body works.2 Activities and participation are categorized together in the International Classification of Functioning, Disability and Health, and categorized in topical groups (eg, communication; learning and applying knowledge; mobility; community, social, and civic life). The International Classification of Functioning, Disability and Health also includes 2 contextual factors (personal and environmental) representing the social and societal fabric of disablement. Environmental factors are external to the person and arise from the individual’s physical situation, community, government, institutions, and/or cultural milieu. These can include, for example, physical barriers to accessing buildings, societal or provider attitudes, access to treatment, and cost of assistive technologies that promote function. Personal factors are intrinsic to the individual, including everything from gender and race to coping styles and lifestyle preferences. These contextual factors can either facilitate or hinder functional and health, and are therefore important to consider as they are often potentially modifiable. All interventions can be considered changes in environmental factors, but distinctions are readily made between a medical model wherein the underlying aims of interventions concern improving Body Structures and Function and the International Classification of Functioning, Disability and Health model’s focus on improving Activities and Participation. The International Classification of Functioning, Disability and Health is particularly attractive as a means to understand cerebral palsy.3 Medical models of understanding health were generally linear and emphasized etiologies and specific treatments. For example, streptococcal pharyngitis begins with an exposure to bacteria that leads to fever and sore throat but can be ameliorated with antibiotics that also greatly reduce the risk of more severe sequelae. These largely medical models are useful in many conditions, but fall short in nuanced situations like cerebral palsy wherein causation is not necessarily clear, interventions seldom resolve underlying medical issues, and
mediators of outcomes are wide-ranging. The International Classification of Functioning, Disability and Health illuminates the interactions of the child with cerebral palsy in the world at large and demonstrates how disability is a 2-way street of each person’s capacities and performance (body structures, function, activities) intersecting with his or her community. The community represents some of the environmental factors that are key to understanding function and distinguish this model from others. With the International Classification of Functioning, Disability and Health, different things become important to understand including the desires of each child and family and their individual lived experience. In addition, the International Classification of Functioning, Disability and Health requires a thoughtful regard for the environment and provides multiple options for supporting each person in achieving their highest functioning and health.4 For example, using a medical model, a child with cerebral palsy would receive spasticity management with a goal of a more effective gait pattern. It might be considered that this intervention could, in turn, help a child with cerebral palsy walk faster and thereby possibly allow the child to keep up with her peers on a school field trip, although these participation domains (ie, mobility, interpersonal interactions and relationships, learning and applying knowledge) are not necessary in the medical model. The International Classification of Functioning, Disability and Health model allows for a unidirectional association of effects (spasticity reduction improves walking) but also allows for a broader approach to examine effects across dimensions (if the child engages more with her recreational soccer team, maybe that would improve her endurance and produce similar results) or effects that are extrinsic to the child (providing her with a mobility device for the field trip). Where the medical model emphasizes each individual’s deficits and direct mechanisms to alleviate those deficits, the International Classification of Functioning, Disability and Health model is value-neutral and embraces the full range of positive and negative factors intrinsic and extrinsic to the individual. With this inclusive focus, each component of health is potentially modifiable with personal and environmental factors. The International Classification of Functioning, Disability and Health is a conceptual model as well as a lengthy document that assigns specific codes to virtually every conceivable concept of health and disability with modifiers that reflect severity; moreover a parallel International Classification of Functioning, Disability, and Health–Children and Youth Version (ICF-CY) is also available.5 In clinical practice, utilizing International Classification of Functioning, Disability and Health codes to classify children is not practical, but the International Classification of Functioning, Disability and Health model can provide a unifying perspective for understanding health and disability and can guide the evaluation and care of patients.6 With this basic understanding, we will consider how the International Classification of Functioning, Disability and Health informs clinical rehabilitation practice regarding children with cerebral palsy. The International Classification of Functioning, Disability and Health is particularly valuable as
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Table 1. Application of the International Classification of Functioning, Disability and Health to 2 Children With Cerebral Palsy. Patient
Body structures and functions
Destiny, Weakness, age 10 spasticity, contractures Hip subluxation Poor attention
Liam, age 3
Weakness, spasticity, contractures Dysphagia Poor weight gain/low body mass index Hearing impairment/ intellectual dysfunction
Activities and participation
Environmental factors
Personal factors
Limited independent mobility, cannot write Physical barriers (stairs), Eager to improve, goal to use her legibly, cannot attend birthday parties laws do not mandate walker always at school because of accessibility accessibility – Available, skilled Anxious about surgery surgeon Special education aide at With age, her behavior is more distinct Poor participation in learning along with from her peers and less acceptable in school is on medical classmates the classroom leave Doesn’t engage in play with classmates (who find her disruptive) No independent mobility, dependent in dressing, cannot explore independently
Physical and societal barriers
Poor safety awareness
Anxious, with oral aversion Unable to feed orally, does not participate in Enteral feeding is family mealtimes covered by insurance Grandmother is afraid of his gastrostomy tube Nonverbal, cannot understand speech, Cochlear implant team Chronic otitis media, very shy and unable to participate in conversation available introverted
a means to conceptualize the many ways in which children can achieve their goals and do what they find meaningful.7 We will provide a practical overview of how this model can be applied by developing 2 vignettes.
Case Vignette 1 Destiny is 10 years old. She was born at 26 weeks gestational age and had a complicated and prolonged neonatal intensive care course. Her brain magnetic resonance imaging shows bilateral moderate periventricular white matter injury. Ultimately, she did well and she has no medical issues besides Gross Motor Function Classification System III spasticdystonic diparetic cerebral palsy and mild attention-deficit hyperactivity disorder (ADHD). Destiny lives with her parents and 2 younger, typically developing siblings and attends public school in the fourth grade. When viewed through the lens of the International Classification of Functioning, Disability and Health, Destiny (described in part in Table 1) is more than her immediately visible mobility impairments. Traditional medical approaches with children like Destiny would focus on interventions aimed at the body structures and functions level. Destiny would receive medication and therapy (environmental changes) to address her spasticity and weakness (body structure and function) with the aim of improving her walking (activity), even though walking was not specifically targeted. Similarly, she would be prescribed medication and her family and school would receive education on how to manage her attention problems. She might be enrolled in a hip surveillance program to ensure that she had regular x-rays to evaluate her degree of subluxation and to
facilitate appropriate referrals to specialist providers when indicated. These interventions have a solid evidence base and are arguably very appropriate, but their effects on Destiny’s overall level of functioning and health might not be substantial. Destiny’s cerebral palsy cannot be cured in that the primary impairments of her brain structure and function are not, at present, reversible and the manifestations of spasticity, weakness, and impaired motor control are only partially amenable to intervention. Even when the domains of body structures and functions demonstrate improvement, ‘‘downstream’’ improvement in activities or participation is not guaranteed.8 For individuals like Destiny, the International Classification of Functioning, Disability and Health challenges us to revisit our conceptualization of available interventions. This means that our emphasis shifts from fixing a deficit at the level of body structures and functions to exploring options for leveraging far greater environmental impacts and individual strengths. The scope of vision widens to consider how to achieve the fullest participation possible. Now, Destiny might access all the treatments already described, but her providers might also explore ways to advocate for better accessibility in her community so that she can use her walker to join her friends at the bowling alley. Because optimal participation requires that Destiny’s goals are incorporated in a meaningful way, perhaps her therapist would work on prioritizing goals based on Destiny’s personal preferences and needs to take advantage of her determination, a positive personal factor. The larger picture of her possible poor response to stimulant medication and the extent of expertise with attention problems among school personnel become key environmental factors in any treatment plan that aims to aid her success in school and
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restore her relationships with her peers and thereby maximizing her participation. When Destiny’s providers consider her cerebral palsy and other conditions in the broad context of the International Classification of Functioning, Disability and Health, the range of potential mechanisms to improve her functioning and health expand as well. For Destiny and her providers, important ‘‘treatments’’ might lie outside the medical arena and can be best addressed by public policy, which can vary markedly internationally.
Case Vignette 2 Liam is 3 years old. He was born at term but had seizures that began in the nursery and was found to have congenital cytomegalovirus infection. His brain magnetic resonance imaging (MRI) scan demonstrates diffuse parenchymal volume loss, porencephalic cleft, migrational abnormalities, as well as extensive calcifications. Liam has many ongoing medical issues including epilepsy, profound hearing loss, intellectual disability, dysphagia, and Gross Motor Function Classification System level V spastic quadriparetic cerebral palsy, all of which can be understood as limitations in body structures and functions. Liam lives with his mother and grandmother and attends preschool inconsistently, which are pertinent environmental factors for him. Liam has many medical issues. These issues have profound effects on his health and well-being, but his health and functioning is also influenced by Liam’s status in his family and community. In a traditional medical model, his providers would focus on finding the right medications, feeding mechanisms, equipment, and therapy to address his underlying deficits. With the expanded ideas of the International Classification of Functioning, Disability and Health, it becomes possible to reduce Liam’s disability by evaluating the ways in which his personal situation and environment facilitate or hinder his functioning. While no known intervention could be expected to make Liam walk independently in that his underlying body structures and function cannot be repaired, Liam could still be provided the opportunity to try powered mobility, and his home and school could be adapted to be accessible and safe for him. His family could receive education and support to improve their effectiveness in caring for Liam and in advocating for his needs. These interventions that alter his environment do not treat Liam’s body structures or functions, but they could result in improved participation for Liam and in this way affect his functioning and health. Similarly, if he can’t swallow safely and is underweight, the International Classification of Functioning, Disability and Health model reminds us to consider how Liam can still participate in family mealtimes if he doesn’t eat by mouth and how to ensure his caregivers are able to provide him with adequate feeding. The responsibility is still to help Liam achieve his very best health, but the options for interventions are greatly expanded, with a focus on modifying tasks and the environment to promote autonomy and engagement in meaningful activities.
Many thoughtful providers had an International Classification of Functioning, Disability and Health perspective long before the International Classification of Functioning, Disability and Health was codified and published. These individuals consider wide-ranging impacts and concerns for their patients and then harness individual strengths and leverage community progress for the aid of their patients. These approaches have found a raison d’etre with the International Classification of Functioning, Disability and Health. With the International Classification of Functioning, Disability and Health framework, health is a holistic and ever-rebalancing state.
International Classification of Functioning, Disability and Health Applications to Rehabilitation Practice Holistic View of the Child Rehabilitation focuses on enhancing an individual’s abilities to perform tasks and participate meaningfully in everyday activities. This is achieved through the use of training and remediation techniques to acquire or improve skills and/or through adaptive and compensatory strategies that aim to modify the task or environment so as to promote functioning and independence.9 As such, the International Classification of Functioning, Disability and Health framework is readily integrated within rehabilitation approaches, to characterize the child’s functioning and health in the context of relevant personal and environmental factors that can facilitate (enable) or hinder (disable) performance. Therefore, the rehabilitation specialist not only considers the child’s medical condition and associated impairments, activity limitations, and participation restrictions but also recognizes that the disabilities experienced are, in part, socially created (eg, physical barriers, attitudes of others, lack of resources and supports).10,11 All these components are evaluated as part of a holistic view of the child’s functioning. Furthermore, the International Classification of Functioning, Disability and Health framework differentiates the child’s capacity (what they can do in optimal circumstances) versus performance (what they actually do in the real life context). This is important to differentiate in clinical practice, so as to address the obstacles to performance in the child’s home, school and community environments.12 The terminology used in the International Classification of Functioning, Disability and Health is not discipline-specific and therefore provides a common language in which health professionals can work as a team to describe the spectrum of a child’s functioning and health.11 In reality, the uptake and use of the International Classification of Functioning, Disability and Health framework in clinical practice is highly variable. Some centers are familiar with International Classification of Functioning, Disability and Health concepts; however, there are no formal structures in place to ensure its applications to interdisciplinary care.13 For other centers, assessment strategies and domains evaluated consistently cover the International Classification of Functioning, Disability and Health spectrum of body structures and
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functions, activities and participation, and environmental factors, and these processes are a particular focus for occupational therapists and physical therapists.14,15 One center developed a ‘‘road-map’’ or clinical structure to promote integration of the International Classification of Functioning, Disability and Health into practice. Although providers voiced concern regarding the additional workload and organizational requirements of using this framework, with time they no longer felt constrained by this application and indicated that use improved communication between team members and with families16,17 Formal implementation of this International Classification of Functioning, Disability and Health–grounded framework is still a ‘‘work in progress,’’ although it is acknowledged that use optimizes collaborative goal setting and interdisciplinary communication, and a more global view of the child’s rehabilitation needs to promote functioning and health in all relevant environments. In particular, the International Classification of Functioning, Disability and Health focus encourages greater emphasis on aspects of participation, felt to be important to the child’s well-being.18 In contrast, there has been widespread uptake of the International Classification of Functioning, Disability and Health by rehabilitation researchers.7,19
Selection of Measures As reviewed above, the International Classification of Functioning, Disability and Health provides a useful framework in which to consider all relevant aspects of the child’s functioning while also evaluating contextual factors that can positively or negatively influence functioning.20 The International Classification of Functioning, Disability and Health is part of university curricula in rehabilitation professional programs and supports students’ clinical reasoning skills and a holistic approach to care.21 In addition to selecting more traditional outcome measures associated with aspects of the child’s functioning (body functions such as spasticity and motor coordination; activities such as walking and dressing), attributes across all components, but especially contextual factors that can influence these primary outcomes could also be considered or even measured. In particular, these personal and environmental factors could interact within the context of therapy programs to modify outcomes. As a result, the rehabilitation provider can choose to focus on a number of contextual factors such as mastery motivation (level of persistence in performing challenging tasks), the priority goals for the child or caregiver (family preferences), and environmental barriers. To do so, appropriate assessments need to be selected such as the Canadian Occupational Performance Measure or Goal Attainment Scaling to identify child/family priority areas of concern, as well as other measures of personal attributes and environmental factors to identify areas for intervention.22 In recent years, investigators are linking specific items on standardized assessment tools to determine which areas of the International Classification of Functioning, Disability and Health are best aligned or represented with these measures.23 An in-depth overview of the
factors to consider in the selection of measures for children and youth with cerebral palsy appears in this issue.24
Program Planning and Interventions In recent years, there is a gradual shift in rehabilitation efforts, focusing not only on minimizing the child’s impairments in sensory, motor, and cognitive functions but also increasingly on modifying or adapting activities and the environmental attributes to optimize functioning, in spite of impairments.9,25 The biopsychosocial framework of the International Classification of Functioning, Disability and Health readily fits within this broadened approach to intervention. Treatment not only is directed at ‘‘fixing deficits’’ (eg, spasticity, muscle weakness, limited attention span, disuse of affected limb) or minimizing secondary complications (eg, contractures and deformities), but is also focused on health promotion strategies (eg, fitness and recreation, social engagement activities). Moreover, treatment can be directed at the child but also on the environment. For the latter, the contextual personal and environmental factors become particularly important in prioritizing preferred activities that can be adapted to enable participation.12 There is less emphasis on promoting ‘‘normal’’ or typical developmental patterns as traditional medical models had often pursued, but rather, finding solutions through training and adaptation to enable the child to be autonomous and functional, in activities that are age appropriate and meaningful, even in the face of significant limitations of body structure or function. In summary, the International Classification of Functioning, Disability and Health thinking has ensured that interventions are more multidimensional, focusing on skill development and adaptation in all relevant environments.26 The International Classification of Functioning, Disability and Health represents a powerful, accessible and meaningful framework to understand and describe disability and health. In the realm of childhood disability, the International Classification of Functioning, Disability and Health promotes key goals of understanding each child holistically, facilitating efficient and robust professional communication and guiding effective treatment and program planning. The International Classification of Functioning, Disability and Health should figure prominently for every professional working with children with developmental disabilities.
Key Take Home Messages
Application of the International Classification of Functioning, Disability and Health in the conceptualization of children with cerebral palsy broadens the focus from the disability (impairments and limitations the child experiences) to the broader life experience, to include consideration of personal and environmental factors that can positively or negatively influence health and functioning. The International Classification of Functioning, Disability and Health framework encourages a holistic view in
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the selection of outcomes measures and in medical and rehabilitation program planning to optimize functioning in all environments. The International Classification of Functioning, Disability and Health uses a common language understood by all health disciplines that encourages interdisciplinary collaboration to promote child health.
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11. 12.
Authors Contributions Both authors contributed equally to writing and editing this manuscript.
13.
Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors received no financial support for the research, authorship, and/or publication of this article.
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