ICF: Global Framework Mainstreams Disability, Creates Common Language for Healthcare
The International Classification of Functioning, Disability and Health (ICF), developed under the auspices of the World Health Organization (WHO), shines an entirely new light on disability. Instead of viewing disability as a category of a social minority, the ICF mainstreams it as a universal human experience. "[The ICF] acknowledges that every human being can experience a decrement in health and thereby experience some disability. Previously, disability began where health ended; once you were disabled, you were in a separate category," according to WHO. "By placing the capacity aspects of disability on a continuum with health, ICF makes it possible to measure health and disability with the same domains of functioning."
Practically speaking, this means that a broad, multidimensional classification framework now exists that can be used across different healthcare disciplines, countries, and cultures, giving them a common language and structure for a variety of purposes. "People may use the ICF across sectors including health, disability, community care, insurance, social security, employment, education, economics, social policy and legislation, and environmental design and modification," points out the Australian ICF Disability and Rehabilitation Research Program (AIDARRP). The ICF embraces implications and applications for the P&O profession in identifying and developing appropriate outcome measures for evidence-based practice as well as clinical care. "We used to talk about people being disabled; now we talk about the level of health and function," explains Stefania Fatone, PhD, BPO (Hons), research assistant professor, Northwestern University Feinberg School of Medicine, Department of Physical Medicine and Rehabilitation, Chicago, Illinois. "The ICF is a different way of looking at the problem and categorizing it. It takes a much broader view of the concept of health and function. You can have the same level of disability in two different people, and it can have a vastly different impact on what they do in society. So we are not looking at people as 'you're an amputee and so now you're in that box.' Now, we approach amputation as, 'you have an amputation, and now we need to figure out what that means in terms of your health and function and how we can address that.'"
Fatone participated in a session, "Do You Speak My Language? Use of the International Classification of Functioning, Disability, and Health (ICF) in Orthotics and Prosthetics," along with Friedbert Kohler, MD; Jacqueline Hebert, MD, FRCPC; and Robert Kistenberg, MPH, CP, LP, FAAOP, at the 2012 American Academy of Orthotists and Prosthetists Annual Meeting & Scientific Symposium in Atlanta, Georgia. Kohler is a professor in the South Western Sydney Clinical School, University of New South Wales, Australia, and also works with the Sydney South West Area Health Service/Western Zone and Braeside Hospital, Prairiewood, Australia; the ICF Research Branch; WHO; and the International Society for Prosthetics and Orthotics (ISPO). Hebert is an associate professor in the Division of Physical Medicine and Rehabilitation, Faculty of Medicine & Dentistry, University of Alberta, Canada, and clinical director of the Adult Amputee Program at Glenrose Rehabilitation Hospital in Edmonton, Alberta. Kistenberg is co-director of the master of science in prosthetics and orthotics (MSPO) program at the Georgia Institute of Technology (Georgia Tech), Atlanta, and president of the U.S. National Member Society of ISPO (US ISPO).
Why ICF Is Needed
More than one billion people-about one in seven-in the world today experience disability, according to the first World Report on Disability, which was published in 2011 and produced jointly by WHO and the World Bank. "People with disabilities have generally poorer health, lower education achievements, fewer economic opportunities, and higher rates of poverty than people without disabilities," the report points out. "This is largely due to the lack of services available to them and the many obstacles they face in their everyday lives.... People with disabilities are among the most marginalized groups in the world."
A medical model of disability is too narrow in scope, according to WHO. "Studies show that that diagnosis alone does not predict service needs, length of hospitalization, level of care, or functional outcomes. Nor is the presence of a disease or disorder an accurate predictor of receipt of disability benefits, work performance, return to work potential, or likelihood of social integration." A better model of disability is sorely needed to identify needs and channel often-limited resources to where they are most needed.
Surprisingly, data reveal that even in high-income countries, 20-40 percent of people with disabilities do not generally have their needs met for assistance with everyday activities. In the United States, 70 percent of adults rely on family and friends for assistance with daily activities.
The World Report on Disability includes "the best available evidence about what works to overcome barriers to healthcare, rehabilitation, education, employment, and support services, and to create the environments which will enable people with disabilities to flourish," according to WHO. It ends with a concrete set of recommended actions for governments and their partners, including adopting the ICF. (Author's note: To read the complete report, visit www.oandp.com/link/155)
How ICF Works
The ICF classification system incorporates a biopsychosocial model that views disability and functioning as interactions between health conditions, such as disease and trauma, and contextual factors. Contextual factors include environmental aspects such as social attitudes, legal and social structures, and climate and terrain; personal aspects such as age, gender, social background, coping styles, and overall behavior pattern; and other aspects that influence the individual's disability experience.
The ICF includes about 1,600 categories, Kistenberg explains, and is based on three levels of functioning: (1) body functions and structures; (2) activities; and (3) participation; and three parallel levels of disability: (1) impairments; (2) activity limitations; and (3) participation restrictions. These are classified in domains that are appropriate to each level, such as organ system functions for the body function and structure level.
ICF categories include more detailed subcategories under each domain. The ICF uses an alphanumeric system in which the letters b, s, d, and e are used to denote body functions, body structures, activities and participation, and environmental factors, respectively. These letters are followed by a numeric code that starts with a one-digit chapter number, followed by another digit each for second, third, and fourth levels as needed.
The list of ICF domains becomes a classification when qualifiers are used. Qualifiers record the presence and severity of a problem in functioning at the body, person, and societal levels. (Author's note: For an in-depth look at the ICF structure and other information, visit www.oandp.com/link/156 and www.oandp.com/link/157)
Clinical and Research Application via Core Sets
ICF Core Sets facilitate the use of the ICF in clinical practice and research. Core Sets provide a list of selected categories from the entire classification that can serve as minimal standards for the assessment and documentation of functioning and health in clinical studies, clinical encounters, and multidisciplinary comprehensive assessment, explains the Swiss Paraplegic Centre (SPC), Nottwil, Switzerland (www.icf-casestudies.org). Core Sets are generally agreed-upon lists of ICF categories relevant for specific diseases or for different healthcare contexts. Brief Core Sets can be used in clinical studies and health statistics; Comprehensive Core Sets can guide multidisciplinary assessments to rate the level of functioning of persons with health conditions.
Both Brief Core Sets and Comprehensive Core Sets include as few categories as possible in order to be practical but as many as necessary to sufficiently describe the typical spectrum of problems in functioning of patients with that specific condition. However, Brief Core Sets are intended for clinical encounters and clinical studies, while Comprehensive Core Sets are used for multidisciplinary assessment. The SPC points out, "Since the categories of the Brief ICF Core Set for a specific condition are meant to serve as a minimum data set to be documented in every clinical study that can comparably describe the burden of disease across studies, the list needs to be as short as possible." For multidisciplinary assessment purposes, "this list must obviously be considerably longer than the Brief ICF Core Set."
A Brief Core Set might have ten-20 categories; a Comprehensive Core Set might have 70-150, Kistenberg notes. Although development of a Core Set for amputation is well under way, Kistenberg says he does not foresee a Core Set for orthosis application per se. "A Core Set would have to be developed for a diagnosis such as cerebral palsy or spina bifida with orthotic interventions as part of the treatment."
Amputation Core Set
Kohler, along with various interested clinicians, began the ICF Core Set development project for persons following an amputation.
"The project is following the well-established process for developing ICF Core Sets that includes four preliminary studies (systematic literature review, qualitative study, expert survey, and multicenter cross-sectional study) concluding in a formal, iterative decision-making and consensus process which integrates the results from the four preparatory studies," according to a report posted on the ICF Research Branch website (www.icf-research-branch.org). The report notes that the systematic literature review is now complete and the survey of clinical experts is currently in progress. For the qualitative study, the first patient focus groups, mainly in Australia and China, are expected to be conducted this year, as is the last preliminary study, the multicenter cross-sectional study.
Kohler, et al. published an article regarding the systematic literature review in the September 2011 special ICF issue of ISPO's journal, Prosthetics and Orthotics International, and Kohler touched on some findings during his 2012 Academy presentation. "To develop a condition-specific Core Set requires identification of the concepts measured in current clinical practice," the article explains. For the study, the concepts of published clinical and outcome measures used in individuals with a lower-limb amputation were extracted and linked to ICF categories. The 113 outcome measures identified in the literature search contained 2,210 functional concepts. Of the identified concepts, nearly 90 percent could be linked to ICF categories. The identified concepts linked to 44 categories in the domain of body functions and structures, 56 categories in the domain of activities and participation, and 30 categories in the domain of environment. The article points out, "Improving the usefulness of the classification for clinicians will assist in standardizing clinical practice and in comparison of outcomes nationally and internationally."
"Once we have the Core Set for amputation, there will be a consistent path of assessment tools to assess patients for expected outcomes," Kistenberg says. "As patients' ability to participate in different activities changes as a result of getting a prosthesis, we can classify that; thus, these tools can provide a basis for decisions by insurance payers." He adds, "We have the K-levels now, but they are somewhat open to interpretation. ICF is more specific, taking into account not only medical conditions and impairments but also activities and participation, along with environmental and personal factors. Across the board, the ICF Core Set enables us to provide a more consistent description of the person who needs a prosthesis."
Outcome Measures and the ICF
Evidence-based research is moving ahead to both develop and identify best-practice standards in P&O and to document results of interventions and treatment to justify reimbursement. The ICF framework helps clinicians not only to identify and map treatment goals for individual patients but also to identify the appropriate outcome tool to measure how well the treatment or intervention is working, Fatone and Hebert explain.
The ICF also identifies gaps where no outcome measurement tools exist or are inadequate.
"We need to figure out how to measure, describe, [and] evaluate all these different interactions that are possible and take them into account," Fatone says. "That's the challenge now. At the very minimum, the ICF allows us to consider our clinical practice and to better define and classify what we do. Since we don't have the necessary tools at every point, we have to develop those tools."
"From a clinical care perspective, considering a person's overall function and participation, as well as proper biomechanics, we can actually measure how effective we are with that intervention-how effectively that person functions before and after we apply the intervention or treatment," Hebert says.
Hebert gives an example of how outcome measures can produce an inaccurate picture of the success or failure of a prosthetic intervention, thus underscoring the need for understanding and selecting appropriate outcome tools: A dysvascular amputee with claudication pain in his contralateral limb may only be able to walk ten meters after being fitted with a new prosthesis. Even though the socket fit and biomechanics are excellent, he still only can walk the same distance due to the limitations of his remaining leg. If you look only at walking distance as the outcome, there seems to be no improvement. However, if the prosthesis fits well and is comfortable so that the person with amputation can participate more in family and community activities and be more independent in his home, the intervention has actually been a success, even though walking distance did not change.
On the other hand, a young, healthy person who suffers a lower-limb amputation due to a workplace accident may be too traumatized psychologically to return to work, even though with a prosthesis he can now run, jump, and engage in sports. In this case, the intervention is successful for return to recreation activities, but not for return to productive employment. Recording this could help to identify that treatment or intervention from another member of the multidisciplinary team, such as a psychologist or social worker, is needed to improve that individual's vocational participation.
Hebert is involved in outcomes research with the collaborative Amputation Evidence Based Review group (AmpEBR project), a multicenter collaboration on amputee research. Among other goals, the project aims to develop a guide for clinicians in selecting the most appropriate outcome instruments as well as working toward a national consensus on outcome measurement.
ICF: Today and Future
Is use of the ICF increasing? Hebert answers, "I think we're at a turning point. We're realizing that there is not a lot of consistency in all the outcome measures being used." She notes that since the patient population is small at each center and varying outcome measures are being used, moving ahead in developing evidence-based practice has been difficult. "We're at the tipping point now where people are realizing that this is a problem and that we need to be communicating on the same page in order to pool our data and results." ICF Core Sets are becoming more easily implemented and can provide this common communication channel, she believes.
A 2011 literature review supports the conclusion that ICF is increasing in use and impact internationally ("Systematic Literature Review on ICF from 2001 to 2009: Its Use, Implementation and Operationalisation," Milda Cerniauskaite, et al., Disability and Rehabilitation, 2011; 33(4):281-309). The study analyzed 672 papers from 34 countries and 211 different journals. The majority of publications (30.8 percent) were conceptual papers or papers reporting clinical and rehabilitation studies (25.9 percent). One-third of the papers were published in 2008 and 2009.
"The ICF contributed to the development of research on functioning and on disability in clinical rehabilitation as well as in several other contexts, such as disability eligibility and employment," the article notes. "Diffusion of ICF research and use in a great variety of fields and scientific journals is proof that a cultural change and a new conceptualization of functioning and disability is happening."
However, despite the work of the joint U.S.-Canada North American Collaborating Center (NACC) involving the ICF, along with other entities and individuals, the United States has been slow to integrate the ICF into healthcare policy, legislation, research, and clinical applications. But as more healthcare professionals and organizations recognize the potential benefits offered by the ICF and urge its use in U.S. healthcare, its influence is growing, including within the P&O profession, according to Fatone. "It's exciting to see P&O starting to have this conversation [about the ICF] because it challenges us to think about what we do in a different way, which I think will improve our patient care," she says. "It's a much better approach to healthcare."
Miki Fairley is a freelance writer based in southwest Colorado. She can be reached at