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Revista Brasileira de Epidemiologia

Print version ISSN 1415-790X

Rev. bras. epidemiol. vol.17 no.2 São Paulo Apr./June 2014

http://dx.doi.org/10.1590/1809-4503201400020012ENG 

Original Articles

The International Classification of Functioning, Disability and Health: a systematic review of observational studies

Luciana CastanedaI 

Anke BergmannII 

Ligia BahiaI 

IInstitute for Studies in Public Health of the Universidade Federal do Rio de Janeiro - Rio de Janeiro (RJ), Brazil

IIAugusto Motta University Center; Instituto Nacional de Câncer - Rio de Janeiro (RJ), Brazil

ABSTRACT

Objective:

To systematically review the use of the International Classification of Functioning, Disability and Health (ICF) in observational studies.

Methods:

This study is a systematic review of articles that use the ICF in observational studies. We took into account the observational design papers available in databases such as PubMed, Lilacs and SciELO, published in English and Portuguese from January 2001 to June 2011. We excluded those in which the samples did not comprise individuals, those about children and adolescents, and qualitative methodology articles. After reading the abstracts of 265 identified articles, 65 met the inclusion criteria. Of these, 18 were excluded. The STROBE (Strengthening the Reporting of Observational Studies in Epidemiology) adapted Checklist, with 15 items needed for observational studies, was applied to the 47 remaining articles. Any paper that met 12 of these criteria was included in this systematic review.

Results:

29 articles were reviewed. Regarding the ICF application methodology, the checklist was used in 31% of the articles, the core set in 31% and the ICF categories in 31%. In the remaining 7%, it was not possible to define the applied methodology. In most papers (41%), qualifiers were used in their original format. As far as the area of knowledge is concerned, most of the studies were related to Rheumatology (24%) and Orthopedics (21%). Regarding the study design, 83% of the articles used cross-sectional studies.

Conclusion:

Results indicate a wide scientific production related to ICF over the past 10 years. Different areas of knowledge are involved in the debate on the improvement of information on morbidity. However, there are only a few quantitative epidemiological studies involving the use of ICF. Future studies are needed to improve data related to functioning and disability.

Key words: International Classification of Functioning, Disability and Health; Chronic disease; Review literature as topic; Data collection; Evidence-based practice

INTRODUCTION

The measurement of disability and functioning are topics of growing interest from the moment when chronic diseases have shown high prevalence and incidence, with the increase in life expectancy a characteristic phenomenon in modern societies. The inability, in particular, is a subjective and ambiguous category1. As a result, the World Health Organization (WHO), for about 30 years, has been developing models for the understanding and classification of the phenomena of functioning, disability and deficiency2.

In 1980, the WHO developed a classification to describe the consequences of adverse health conditions or diseases, called the International Classification of Impairments, Disabilities and Handicaps (ICIDH). The aim of this universal model was to provide a biopsychosocial representation of global health, including environmental, social, demographic and psychological contributions. The model consisted of three dimensions: impairment, described as loss or alteration in the organs and systems and in the body structure; disability, characterized as any restriction or loss of ability in the performance of basic tasks; and handicap (disadvantage), which reflects the individual's adaptation to the environment resulting from the disability and impairment3.

The design of a model of linear causal relation (in which the damage to a body structure or function leads to disability, and this determines a disadvantage for the achievement of social roles) began to suffer criticism and questioning. Among these, there was the progression of a fixed sequence of events based on clinical onsets. Faced with the need of adaptation of the model, several partners from the WHO, together with governmental and nongovernmental organizations, including groups of people with special needs, engaged to review the ICIDH. As a result, in 2001 the WHO approved the International Classification of Functioning, Disability and Health (ICF)4.

The ICF is a classification system which describes the functioning and disability related to health conditions, reflecting a new approach which fails to focus only on the consequences of the disease, but also classifies health by biological, individual and social perspective in a multidirectional relation5.

In this context, the ICF is a tool created to provide a common language for describing the phenomena related to the health status and it is the most recent and embracing taxonomic model of functioning and disability within a universal and unified perspective. The new model offers a different perspective on impairment and disability, thus overcoming the prevailing biomedical model6.

The information is organized into two parts, with two components each. Part 1 (Functioning and Disability) consists of the domains of Body Functions (b) and Body Structures (s) and Activities & Participation (d). Part 2 (Contextual Factors) is formed by Environmental Factors (e) and by the Personal Factors (not subject to rating yet). The description of functionality involves the presence of a qualifier (which runs on a general scale of 0 to 4 where 0 means no impairment and 4 is a complete failure). The qualifiers show the magnitude of the disability, limitation, restriction, barriers or facilitators of health conditions7.

The ICF complements the indicators which traditionally have their focus on deaths or diseases, but they do not adequately capture the impact and consequences of the disease on individuals and on populations. The concepts presented in the classification introduce a new paradigm for thinking and working on impairments and disabilities, perceived not only as a consequence of the conditions of health/disease, but also determined by the context of the physical and social environment, by the different cultural perceptions and attitudes towards disability, by the availability of services and legislation8. This model of understanding functioning and disability is essential for the clinical diagnosis of the consequences of health conditions, power assignments as well as the evaluation of the results of the treatment9.

Gaidhane et al.10 report that the use of ICF quantitatively, as a systematic coding scheme of the information about functioning, disability and handicap, has several advantages, such as: standardization of terminology; improvemnt of communication among health professionals; improvement of the data on the subject allowing comparisons among countries, disciplines and services throughout time; usage of the tool in order to identify the nature and magnitude of the multifactorial complex involved in the dimensions of disability and deficiency.

However, studies in Brazilian literature using the ICF quantitatively are scarce. Most of them deal with the concepts of classification and the importance of integration of the tool in the health field. In this sense, the present study aims at conducting a systematic review on the use of the ICF in observational studies. Furthermore, it is one of the objectives to describe how the classification has been used in the areas of knowledge and applied in clinical practice, the way on how to use the qualifiers and the main challenges for the implementation of the tool in clinical practice.

METHODOLOGY

A systematic review of the literature was conducted, considering, as an inclusion criteria, the publishing of articles with observational characteristics. Those whose sample did not consist on individuals, studies with children and adolescents, and articles on qualitative methodology (case report, focus group and methodology to link the ICF with measuring instruments) were excluded. Publications with the keyword "ICF", available on the data bases of PubMed (US National Library of Medicine), Latin American and Caribbean Literature Data on Health Sciences (LILACS) and Scientific Electronic Library Online (SciELO), published between January and June 2011, in English and Portuguese, were selected. The data were collected during the months of June and July 2011.

Of the 275 articles selected in the initial search, 65 of them were selected after the abstracts were read in full. Of these, 30 were excluded for not meeting the inclusion criteria. For the 35 selected articles, the adapted checklist for Strengthening the Reporting of Observational studies in Epidemiology (STROBE) was applied, an international initiative that encompasses recommendations for the improvement of the quality of the description of observational studies and which contains 15 items needed for these studies. The 29 articles that met 12 out of 15 of the criteria were included for analysis and discussion (Figure 1).

Figure 1 Criteria for identification of studies. 

RESULTS

This systematic review included 29 studies that met the eligibility criteria. Cross-sectional studies were performed by 83% of the articles, the remaining ones (17%) conducted prospective cohort studies. Most of them used additional tools for the classification of functioning and disability. Table 1 summarizes the general characteristics of the reviewed studies.

Table 1 Description of the results of the selected studies (n = 29).  

Author, year Knowledge area Design of the study General goal Population of the study Sample
size
ICF Methodology (Spare cathegories, checklist or core set) Qualifiers (original or adapted) Aditional instruments
Almansa et al., 201111 Not definable Cross-sectional To assess whether the validity scales performance and capacity can be developed from the domains of activity and check list participation Patients with 11 different chronic conditions 1092 Checklist Original YRSM, HDRS, MIDAS, EDSS, MIF
Peyrin-Biroulet et al., 201112 Internal Medicine Cross-sectional To develop the first disability index for inflammatory bowel disease Patients with inflammatory bowel disease 192 Checklist Not definable x
Gojlar et al., 201113 Neurology Cohort To determine whether the ICF model is adequate for capturing the patterns of disability Patients who had a stroke 197 Checklist Original MIF
Pollard et al., 201114 Orthopedics Cross-sectional To examine the relationship between disability, limiting to activities and restriction to participation Patients with osteoarthritis in situation prior to the hip and ankle arthroplasty 413 Cathegories Adapted x
Virués-Ortega et al., 201115 Geriatrics Cross-sectional To report the prevalence of disability (mild, moderate, severe and extreme) Patients with more than 75 years of age 503 Not definable Original WHODAS II
Herrmann et al., 201116 Neurology Cross-sectional To identify and quantify the differences in functionality Patients with paraplegia and tetraplegia 1048 Not definable Adapted x
Gradinger et al., 201117 Neurology Cross-sectional To identify the most common problems in patients with any degree of disorder of sleep Patients with sleep disorders 99 Checklist Adapted x
Rogers et al., 201018 Oncology Cross-sectional To develop a self-administered questionnaire in order to obtain the patient’s vision over its content Patients with head and neck cancer 364 Core set Adapted UW-QOL
Rauch et al., 200919 Rheumatology Cross-sectional To identify similarities and differences in functionality
in patients with rheumatoid arthritis (RA) and ankylosing spondylitis (AS)
Patients with rheumatoid arthritis and ankylosing spondylitis 230 Core set Original x
Taylor et al., 201020 Rheumatology Cross-sectional To determine the categories of the checklist and the core set for RA and AS in patients with frequent psoriatic arthritis Patients with psoriatic arthritis 94 Checklist Original WHODAS II, PAR-PRO, SF-36, Psa-QOL, HAQ-DI
Cieza et al., 200921 Orthopedics Cross-sectional To explore the possibility of building clinical measures of functionality by integrating information from the categories of core set for osteoarthritis Patients with Osteoarthritis 437 Core set Original X
Tsutsui et al., 200822 Nephrology Cross-sectional Identify the most common problems in Japanese
patients on hemodialysis
Patients on hemodialysis 136 Checklist and cathegories Not definable x
Tschiesner et al., 200923 Oncology Cross-sectional To access the level of functionality in patients with head and neck cancer through the ICF Patients with head and neck cancer 145 Checklist and cathegories Original EORTC
Hilfiker et al., 200924 Orthopedics Cohort To evaluate the inter-rater (two raters) agreement using the core set for low back pain Patients with low back pain 61 Core set Adapted SF-36, SCQ
Rastogi et al., 200825 Orthopedics Cohort To quantify the level of importance on the areas of functionality Preoperative and postoperative patients 54 Cathegories Adapted NPRS, KOOS
Bautz-Holter et al., 200826 Orthopedics Cross-sectional To evaluate the Norwegian version of the core set for low back pain and to investigate the feasibility of application in clinical practice Patients with low back pain 118 Core set Original SF-36, SCQ, ODI
Xie et al., 200827 Orthopedics Cross-sectional To validate the abbreviated core set for osteoarthritis Patients with Osteoarthritis 122 Core set Not definable SF-36, SCQ
Uhlig et al 28 Rheumatology Cohort To investigate the responsiveness of the rheumatoid arthritis core set in clinical practice Patients with rheumatoid arthritis 46 Core set Adapted MHAQ, SF-36
Grill e Stucki, 200829 Not definable Cross-sectional To examine whether clinical assessments tomade with the ICF can be integrated into parametric scales Patients with musculoskeletal conditions 234 Core set Adapted X
Gaidhane et al., 200830 Infectology Cross-sectional To verify the perception of self-care in patients with HIV/AIDS Patients with HIV/AIDS 194 Cathegories Original X
Jonsson et al., 200831 Neurology Cross-sectional To describe, through the use of environmental factors of the ICF, the social groups that participate in the life of adults with cerebral palsy Patients with cerebral palsy 16 Cathegories Original X
Farin et al., 200732 Not definable Cross-sectional To develop a self-guided questionnaire for the categories of mobility and self-care based on ICF Patients with various conditions 1019 Cathegories Not definable X
Verhoef et al., 100733 Rheumatology Cohort To investigate whether the use of an instrument based on ICF improves clinical outcomes and patient satisfaction with the multidisciplinary team Patients with rheumatoid arthritis 165 Cathegories Not definable MACTAR, RaQol, DAS28
Grill et al., 200734 Not definable Cross-sectional To observe an agreement in description and classification using the ICF Patients with various conditions 25 Cathegories Adapted X
Echteld et al., 200635 Rheumatology Cross-sectional To identify the most common problems in patients with ankylosing spondylitis Patients with ankylosing spondylitis 111 Checklist Original SACQ, BASFI
Cieza et al., 200636 Not definable Cross-sectional To propose a method to select ICF categories when a large amount of data must be handled and to identify categories for a
generic core set
Not definable 1.039 Checklist Adapted SF-36
Zochling et al., 200637 Rheumatology Cross-sectional To identify the most common problems in patients with acute inflammatory arthritis Patients with acute inflammatory arthritis 130 Cathegories Adapted X
Riberto et al38 Rheumatology Cross-sectional Description of the results of the application of core sets for chronic widespread pain Patients with fibromyalgia 29 Core set Original X

YRSM: Young Rating Scale of Mania

HDRS: Hamilton Depression Rating Scale

MIDAS: Migraine Disability Assessment Questionnaire

EDSS: Expanded Disability Status Scale

MIF: Medida de Independência Funcional

WHODAS II: WHO Disability Assessment Schedule II

SF-36: Medical Outcomes Study Short-Form 36

PsA-QOL: PsA-Specific QOL Iinstrument

HAQ-DI: Health Assessment Questionnaire Damage Index

SQC: Social Communication Questionnaire

ODI: Oswestry Disability Index

MHAQ: Modified Health Assessment Questionnaire

BASFI: Bath Ankylosing Spondylitis Functional Index

SACQ: Self-Administered Comorbidity Questionnaire

UW-QOL: University of Washington Quality of Life

NPRS: Numeric Pain Rating Scale

KOOS: Knee Injury and Osteoarthritis Outcome Scale

MACTAR: McMaster Toronto Arthritis Patient Preference Disability Questionnaire

RaQol: Rheumatoid Arthrits Quality of life questionnaire

DAS28: Disease Activity Score

Regarding the method of the ICF use, 31% of the studies used the checklist, 31% the corsets and 31% the ICF categories. In the other (7%) it was not possible to define the used method (Figure 2). The qualifiers, in their original form, were used by 41% of the studies (Figure 3).

Figure 2 Methodology used in the articles of the International Classification of Functioning included in the systematic review (n = 29). 

Figure 3 Qualifiers frequency used in the articles of the International Classification of Functioning included in the systematic review (n = 29). Note: Qualifier was considered adapted when the study did not use it in the original form. The original scale ranges from 0 to 4, and in adaptations, the original scale was categorized dichotomously. Example: Ranked disability as present or absent.  

Analysing the studies by their knowledge areas, most of them related to the areas of Rheumatology (24%) and orthopedics (21%) (Figure 4).

Figure 4 Kowledge areas of the articles of the International Classification of Functioning (n = 29). 

DISCUSSION

The ICF appears on the world scenary of rehabilitation as a promising, with high potential of applicability and compliance, tool19. Almansa et al.11 point out that a major goal of the classification is the systematic recording of information regardless of the method used in order to obtain or access these information. They also evidence that the classification should not be restricted only to the qualitative and/or conceptual use, but it should also be used as a statistical and epidemiological tool. The aim of this study was to conduct a review of the studies which used the ICF quantitatively.

Some years after the publication of the ICF, the WHO has identified that the classification (in their original format, with approximately 1,500 categories) was impractical for everyday use. Thus, it was suggested the development short lists of relevant concepts to specific health conditions and chronic situation. There are two versions of core sets: comprehensive (recommended for research purposes) and abbreviated (for use in clinical practice). Models for stroke, chronic obstructive pulmonary disease, obesity, coronary heart disease, orthopedic conditions, among others have been published and some are still in development38. However, the use of core sets is not fully accepted by the scientific community due to the possibility of returning to the biomedical model (focus on the disease and not the functionality).

Our results demonstrate that a large number of articles used the core set in their methodology (31%), both in the comprehensive and short versions. It was also observed that no author used the ICF in its full version and that the articles which used spare ICF categories, mostly, used these categories for assembling questionnaires and clinical assessment scales.

There are some difficulties in implementing the ICF in clinical practice, since this classification does not indicate the instruments needed for the assessment of disability and functionality. The proper use of the instrument depends on the user and the purpose, and there will always be many measurement options, although refinements and changes in classification are necessary. In this sense, Grill et al.32 emphasize that the ICF has no psychometric characteristics with defined objective, thus compromising its properties of reliability and validity. It is also noteworthy that the basis for the ICF application, both in clinical practice and in the research field, takes place through the use of practical tools such as core sets.

In a recent review of the implementation and operationalization of ICF since its publication, it was noted that there is an ongoing scientific activity surrounding the spread of classification through theoretical publications in the fields of education, social security and labor. However, only 26% of publications are related to the clinical practice and/or rehabilitation. The authors conclude that the greater the availability of tools guided by the ICF, the better the data on population health within the information systems39. However, such review was qualitative and its results should be interpreted with caution. The results demonstrated the predominance of cross-sectional studies (83%). This, points to the difficulty of introducing the ICF in longitudinal epidemiological studies.

In another systematic review, Jelsma 40 concluded that the ICF, over the past few years, made a big impact on how data on deficiency and disability are conceptualized, collected and processed. He stressed that the classification has been used in various disciplines, health conditions, sectors and settings, and that the use of the ICF in developing countries should be encouraged. The results show a small scientific production using the ICF in Latin America. This can be explained by the fact that the number of studies identified on the basis of Lilacs was much lower than the number identified in the PubMed database.

Another limiting issue is that the fact qualifiers require standardization and that they present some difficulty in their psychometric characteristics. Goljar et al.13 highlight that the use of the ICF qualifiers is not yet fully operationalized, although many attempts have been made towards the validation of the use of operational scales. However, such difficulties and obstacles will only be solved if there is adherence by professionals and a practical use of the ICF. Our results indicate that about 35% of the studies used the qualifiers in an adapted way, which goes against the difficulties found by many authors. These authors usually adapt the qualifiers for dichotomous response option, thus providing a prevalence measure of the disability and not an analysis of the phenomenon of gravity. This adaptation is not consistent with the original model of the ICF.

The objective of this systematic review was to demonstrate how the ICF has been used in observational studies, however, a limitation of this study is the fact that the quality of the articles was not analyzed. In an attempt to reduce this problem, an adapted version of the STROBE was used. The checklist of the initiative is not an evaluative document, however, the choice of using it was an attempt to elect the authors with better methodological quality. The adapted document consisted of 15 questions and articles that reached 12 positive responses were included. The cutoff point chosen was subjective.

The results found in this review may be a starting point for future discussions involving the quantitative aspects of the ICF. Questions about the methodology involving or not the use of core sets, psychometric properties of the qualifiers and areas of knowledge yet with little participation can be explored in future studies.

CONCLUSION

The results indicate a wide scientific production related to the International Classification of Functioning, Disability and Health over the past 10 years. Several knowledge areas and sectors of the health field are involved in the debate on the improvement of information on morbidity. However, the quantitative epidemiological studies involving the use of ICF in clinical practice are few, if compared to the qualitative studies. Future studies are needed in order to improve the secondary data related to functioning and disability.

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Received: August 28, 2012; Revised: October 07, 2013; Accepted: January 16, 2014

Corresponding author: Luciana Castaneda Avenida Brigadeiro Trompowisky s/n Praça da Prefeitura da Cidade Universitária CEP: 21949-900, Rio de Janeiro, RJ, Brasil E-mail: lucianacastaneda@yahoo.com.br

Conflict of interests: nothing to declare

Financial source: none.

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