Title page Harmonizing who’s International Classification of Diseases (icd) and the International Classification of Functioning, Disability and Health (icf): Importance and methods to link disease and functioning Authors
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Harmonizing WHO’s International Classification of Diseases (ICD) and the International Classification of Functioning, Disability and Health (ICF): Importance and methods to link disease and functioning Authors Reuben Escorpizo1,2,3*, Nenad Kostanjsek4, Cille Kennedy5, Molly Meri Robinson Nicol4, Gerold Stucki2,3,6, Tevfik Bedirhan Üstün4, On Behalf of the Functioning Topic Advisory Group (fTAG) of the ICD 11 Revision Affiliations: 1 Department of Physical Therapy, Louisiana State University Health Sciences Center, New Orleans LA USA 2 ICF Research Branch in cooperation with the WHO Collaborating Centre for the Family of International Classifications in Germany (DIMDI), Nottwil, (Switzerland) 3 Swiss Paraplegic Research (SPF), Nottwil, Switzerland 4 World Health Organization, Classifications, Terminologies and Standards, Geneva, Switzerland 5 US Department of Health and Human Services, Office of Health Policy Washington D.C., USA 6 Department of Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland
C Kennedy is an employee of the Office of the Assistant Secretary for Planning and Evaluation (ASPE), Department of Health and Human Services (HHS). This article was developed in her professional capacity and does not necessarily represent the views of ASPE or HHS.
Cille Kennedy: Cille.Kennedy@HHS.GOV Molly Meri Robinson Nicol: robinsonm@who.int Gerold Stucki: gerold.stucki@paraplegie.ch Tevfik Bedirhan Ustun: ustunb@who.int
* Correspondence: escorpizo.reuben@gmail.com Abstract Background: To understand the full burden of a health condition, we need the information on the disease and the information on how that disease impacts an individual’s functioning. The ongoing revision of the International Classification of Diseases (ICD) provides an opportunity to integrate functioning information through the International Classification of Functioning, Disability and Health (ICF). Discussion: Part of the ICD revision process includes adding information from the ICF by way of “functioning properties” to capture the impact of the disease on functioning. An ICD content model was developed to provide the structure and detail of information required for each ICD-11 disease entity and in which one component of the content model is functioning properties. In the ICD revision process, activities and participation domains as the value set of functioning properties from the ICF are to be included. Summary: The joint use of ICD and ICF could create an integrated health information system that would benefit the implementation of a standard language-based electronic health record to better capture and understand Keywords: International Classification of Diseases, ICF, classification, functioning, ICD revision, disability BackgroundThe true impact of a health condition, disease, illness or an injury can only be understood if functioning is taken into account. With the information on functioning, we are better able to understand the full burden of a health condition on the individual and on society in general (1, 2) in addition to what we already know about health condition (i.e. pure medical information). This burden may be in the form of societal cost, such as productivity loss, or costs associated with provision of health care or medical services. The individual with the health condition may experience burden by having restrictions and limitations preventing them from optimal participation in their life roles and activities. Therefore, there is an increasing need for a resource to understand and quantify the impact of a disease on a person’s functioning within the context of clinical care and medicine, reimbursement and public health. A good example of a resource is having an integrated health information system, which could be used as a basis for electronic health records. In a wide range of health care settings (i.e. post-acute care, rehabilitation, long-term care) the need for care is determined by the type and extent of functioning rather than the disease labels alone; hence, incorporating functioning-relevant information (i.e. functioning properties) in a health information system could enable case-mix applications to better explain reimbursement variance in health and social services, which could then benefit the delivery of health care services. Describing and understanding the relationship between disease and functioning requires the use of the World Health Organization’s two major classifications systems: the International Classification of Diseases (ICD) (3) and the International Classification of Functioning, Disability and Health (ICF) (4). The ICD classifies disease entities and other health problems to gather diagnostic information, while the ICF classifies domains of functioning in terms of body functions and structures or activities and participation at the body, person and societal levels. The only requirement of ICF is that functioning is associated with health. When individually used, the ICD and the ICF can document and code for diseases and functioning status data in clinical settings, respectively. Both the ICD and the ICF classification systems are intended by the WHO to complement each other so as to capture and provide the full picture of health or a health state of an individual. Currently, however, there is no standard platform or system in which the disease and its impact on functioning and disability are concurrently used in an integrated health information system (it’s just either the ICD or the ICF being used separately). Efforts to capture the impact of a disease in a structured and systematic way have so far been hampered by the failure to link the ICD and the ICF at a conceptual and operational level. The objective of this paper is to discuss the development of the linkage between the ICD and the ICF in the context of the ongoing ICD revision process so that the health community and various stakeholders are informed of the development and rationale of the revision. The specific aims of this paper are (1) to present the content model of the ICD-11 with a focus on functioning properties, and (2) to demonstrate how to link the ICD and the ICF by integrating functioning properties in the ICD-11 content model.
ICD RevisionThe ICD is undergoing its 11th revision (i.e. ICD 11) (5) wherein part of the process is to add information from the ICF to the classification of diseases by adding the “functioning properties” (i.e. ICF domains or codes) to capture the impact of the disease on functioning. In this integrated system, we want to be able to use universal domains (functioning properties) that depict the functioning of an individual by way of the ICF and at the same time use information related to disease entities (codes from ICD). Sources of functioning properties Two previous papers published by Kostanjsek et al. (6, 7) showed the sources of ICF categories which can constitute the functioning properties, and how those properties are identified based on generic surveys such as the World Health Organization Disability Assessment Schedule 2.0 (WHO-DAS 2.0) (8), and the World Health Survey (9). Relevant ICF categories can also be referred based on the Generic Core Set and disease-specific ICF Core Sets (10). However, the illustration of the domains selected as part of a list to be integrated with each ICD code has not been presented yet. The WHO-DAS 2.0 captures the level of functioning and disability in six domains: understanding and communicating, getting around, self-care, getting along with people, life activities and participation in society (8). The World Health Survey (WHS) covers various areas such as demographics, health, risk factors and health care expenditures. The health status module captures the following domains: mobility, self-care, pain and discomfort, cognition, interpersonal activities, vision, sleep and energy and affect (9). The Generic Core Set consists of essential ICF categories to describe functioning for clinical and research settings in different populations. The development of the Generic Core Set was based on a psychometrics study of data from internationally derived ICF Core Sets for specific health conditions (11, 12), the German National Health Interview and Examination Survey 1998 (GHS98) (13) and the US National Health and Nutrition Examination Survey 2007/2008 (NHANES 05/06) (14). The ICF categories included in the Generic Core Set are b152 emotional functions, b130 energy and drive functions, b280 sensation of pain, d450 walking, d455 moving around, d230 carrying out daily routine, and d850 remunerative employment. ICF Core Sets (a short list of particularly relevant ICF categories) have been developed specific to a setting (e.g. spinal cord injury in early post-acute) or to a health condition (e.g. depression). Content model of the ICD-11 revisionVital to the revision process of the ICD, a content model was developed as a template for information (15). The content model provides the structure and details of information required for each ICD-11 code that will be included through the revision process. The content model is used to guide the development of ICD-11. It contains descriptive disease characteristics (such as title, hierarchy, inclusion and exclusion), clinical description (such as signs and symptoms, severity), and formal disease characteristics (such as etiology, genomic characteristics) (15, 16). This content model is presented in figure 1. This discussion paper will not go over all the properties of the content model, but rather focus on functioning properties [Place figure 1 here] Functioning Properties of the ICD-11 Content ModelIn the ICF, “functioning” is an encompassing terminology for body functions, body structures, and activities and participation. However, within the ICD Content Model, “functioning properties” includes the activities and participation component of the ICF. Activity is defined in the ICF as the “execution of a task or action by an individual”, while participation is defined as “involvement in a life situation” (4). Activities and participation is important in describing the impact of a disease because it captures the broad but relevant aspects of activity and involvement with society and life in general. Table 1 lists the ICF categories that are included in the value set for functioning properties. So in principle, a given ICD code would have a corresponding value set of functioning properties. The method for linking functioning properties with specific ICD disease entities was derived from the ICF Core Set methodology (10). This way, the disease-related information and functioning-related information are both captured in a single unified platform. [Place table 1 here] The task of populating the functioning properties in iCATBefore ICD-11 is completed, functioning properties will need to be populated as deemed to be relevant for each ICD code. This task of population is being done and coordinated using the electronic (web-based) International Collaborative Authoring Tool (iCAT) by content experts worldwide in three steps: (1) selection of functioning properties provided in iCAT (table 1), (2) if an additional domain or category needs to be added based on a published disease-specific ICF Core Set, then it is entered manually into the iCAT, and (3) use evidence from the literature (i.e. mini-review) by identifying the commonly used measures relevant to the disease of interest, and in those measures identify meaningful concepts of functioning with a focus on performance of daily activities and participation in life situations, and then subsequent linkage of the identified concepts to a specific domain in the ICF (17). The ongoing activity is populating all diagnoses in the ICD with the appropriate functioning properties. When a diagnosis is to be populated, content experts should be able to identify the different dimensions that are to be addressed and to be included in fully describing a disease entity. The process of revising the ICD is coordinated through individual Topic Advisory Groups (TAGs), each of which is responsible for different groups of diseases. Responsible for the appropriate integration of the functioning properties is the functioning Topic Advisory Group (fTAG), which consults with each of the other TAGs regarding how to deal with functioning properties in their respective ICD codes. Because of the high number of diagnoses, another task is to prioritize which disease entities are to be populated first. As a starting point, it would be logical that a short list of 100 particularly burdensome diseases be considered initially. Finally, another task is to determine the level of granularity or specificity to which functioning properties will be populated once a disease entity is selected. The choice of granularity might depend according to disease groups. For example, greater granularity of functioning would be documented for the nervous system when it comes to diseases affecting the nervous system, or for functioning related to the psychological makeup of the individual given a mood/affective disorder. DiscussionThe ICD is currently undergoing a revision process towards ICD-11. It has been more than 20 years since the World Health Assembly endorsed the current ICD-10. With the growing demand of healthcare stakeholders including patients to better capture information on diseases and their impact and to better inform clinical care and medicine, the revision towards the new ICD-11, which incorporates functioning properties, is a step in the right direction. The novelty of this approach is that we are now able to focus on building operational linkages between classification systems towards data standardization by combining disease and functioning information. With this paper, we are looking forward that it will stimulate discussion and collaboration within the scientific and clinical communities to make the ICD revision a success. Obtaining information about disease entities and their impact on functioning is not entirely new in the field of medicine or among other health professionals. While the consideration of the disease and its impact on functioning has been in place, or at least acknowledged, for a long time, (18) there remain prevailing issues, such as the lack of wide dissemination and implementation extending beyond the level of simple awareness (19, 20). Moreover, the operationalization of integrated disease-and-functioning models currently varies, and is perhaps more commonly observed in healthcare systems with medium to advanced infrastructures and access to resources. We can do a better job to facilitate an integrated disease-and-functioning model across systems- may it be high resource or low resource countries. Moreover, the ongoing ICD revision would make the assessment and documentation of a comprehensive set of information about a disease entity as broad and as inclusive as possible; at the same time utilizing a standard and common language on functioning. This information will consist of biomedical and biopsychosocial aspects of the disease, thus providing clinicians and users alike an integrated and unified ICD-ICF platform, which will be helpful in interdisciplinary communication towards a concerted planning of care. This unified platform will allow healthcare professionals to provide their input on the patient case independently while forging a coordinated and collaborative care within an interdisciplinary setting, ultimately benefiting the patients, particularly those who are most vulnerable such as the elderly and those with complex health conditions (21, 22). Although the interdisciplinary team approach to care already considers the combined disease and functioning of the patient, the ICF provides a model of the interaction of the health condition and functioning and defines the concepts of functioning and disabilities within the model to facilitate clear communication across health disciplines. In this paper, we have discussed the ways to interface disease entities with the ICF in the context of ICD-11. There is a lengthy list of health conditions where joint ICD-ICF use needs to be demonstrated. Hence, at this point, it may be prudent, for the purpose of prioritization, to look initially at the identified shortlist of 100 health conditions with significant burden. Efforts are currently underway to accomplish this. We see a dramatic change in paradigm and framework after the ICD-11 with the addition of the ICF has been implemented. Alzheimer’s disease, for example, would not be seen simply as memory loss, alone, but could be assessed and documented in terms of the inability of the individual to feed oneself or inability to communicate with one’s own child. Low back pain is another example where evidence on psychosocial aspects and how it affects an individual’s activities and societal participation can be used alongside the disease information, such as an etiology of spinal stenosis or spinal osteoarthritis. However, it is difficult to have no linguistic overlap whatsoever between ICD and ICF. The “mirror coding“ exercise that the fTAG has undertaken identification of instances in which there are both linguistic and conceptual overlap between ICD and ICF. The goal is to reduce the overlap without major disruption in the transition from ICD-10 to ICD-11 from the user’s point of view. We see further work and development efforts in the area of measuring and capturing functioning properties. One way would be to assess functioning properties as they are (as single items) and another way would be using a standard measurement instrument or questionnaire to assess a functioning property provided that there are sound psychometric properties to the measurement instrument. Because there is no straightforward one-to-one conversion yet of a score derived from standard measurement instruments, a global clinical judgment based on the clinician expert can be done at this time, with interpretation of such “score” subject to caution. We anticipate more developments in the area of measuring functioning properties as we pursue innovative studies in the coming years. The revision process will improve the current state of affairs because both the electronic and paper versions of the ICD-11 will contain a link to the ICF. Thus, the health professional will be prompted to specify the associated level of functioning that is related to the patient’s health condition. The ICD-11 is due to be launched in 2015, and steps toward that goal are being implemented. Certainly there are challenges on our way, but there are also opportunities that are presented for users in the clinical and research communities to actively contribute in this huge endeavor by the WHO and collaborators worldwide. The unified ICF-ICD in the ICD-11 will allow for consistent terminologies to be used and harmonized across ICD and ICF and will provide holistic information about a disease entity and its impact on the individual’s functioning. Efforts are also currently being taken to facilitate the identification of the overlaps for ICD-11 disease entities and their titles with their conceptual equivalent in the ICF towards harmonization of ICD and ICF. This paper is the first of a series of steps toward the realization of ICF integration in ICD-11. Examples have been presented to concretize the application of the ICF in light of health conditions. However, we have primarily focused on a single property of the content model where the ICF plays a significant role, and that is in functioning properties. The joint use of the ICD and ICF which could virtually create an integrated health information model would, in our opinion, benefit medicine and public health in general and would support the push for the implementation of a standard language-based electronic health record system towards better health care services planning and reimbursement.
List of abbreviationsfTAG Functioning Topic Advisory GroupiCAT International Collaborative Authoring ToolICD International Classification of DiseasesICF International Classification of Functioning, Disability and HealtgTAG Topic Advisory GroupWHO World Health OrganizationWHODAS 2.0 World Health Organization Disability Assessment Schedule 2.0WHS World Health SurveyCompeting interest The authors declare that they have no competing interests. Authors’ contributions All authors provided concept/idea, consultation, and writing, and reviewed the manuscript before submission. Authors’ information RE is Assistant Professor, Department of Physical Therapy, School of Allied Health Professions Louisiana State University Health Sciences Center, New Orleans LA USA; adjunct research scientist at the ICF Research Branch in cooperation with the WHO Collaborating Centre for the Family of International Classifications in Germany (DIMDI), Nottwil, (Switzerland); and the Swiss Paraplegic Research (SPF), Nottwil, Switzerland. NK is technical officer at World Health Organization, Classification, Terminology and Standards (CTS), Department of Health Statistics and Informatics (HSI), Geneva, Switzerland. CK is with the US Department of Health and Human Services, Office of Health Policy Washington D.C., USA. * An employee of the Office of the Assistant Secretary for Planning and Evaluation (ASPE), Department of Health and Human Services (HHS). This article was developed in her professional capacity, but does not necessarily represent the views of ASPE or HHS. MMRN is technical officer at World Health Organization, Classification, Terminology and Standards (CTS), Department of Health Statistics and Informatics (HSI), Geneva, Switzerland. GS is director of the ICF Research Branch in cooperation with the WHO Collaborating Centre for the Family of International Classifications in Germany (DIMDI), Nottwil, (Switzerland) and the Swiss Paraplegic Research (SPF), Nottwil, Switzerland; is Professor and Chair at the Department of Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland TBU is head of WHO’s Family of International Classifications, Geneva, Switzerland. Acknowledgements Special thanks to Melissa Selb, ICF Research Branch coordinator in Nottwil, Switzerland and members of the functioning Topic Advisory Group. References1. United States Joint and Bone Decade: The Burden of Musculoskeletal Diseases in the United States. 2008; Available from: http://www.boneandjointburden.org/. 2. World Health Organization. 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