Application and use of the international classification of
functioning, disability and health (ICF) in rehabilitation
practice and research
–
an updated literature review
Stefanie Schulz
PROJECT DESCRIPTION
... - 2 -
Background... - 2 -
Objective... - 2 -
Target group... - 2 -
Design: method and database... - 2 -
Organisation... - 3 -
RESULTS
... - 3 -
1. INTRODUCTION
... - 4 -
2. LINKING HEALTH-STATUS MEASUREMENTS TO THE INTERNATIONAL
CLASSIFICATION OF FUNCTIONING, DISABILITY AND HEALTH (ICF)
... - 6 -
2.1. Linking rules... - 6 -
2.2. Content comparison... - 7 -
3. ICF CORE SETS: DEVELOPMENT, VALIDATION AND IMPLEMENTATION
... - 9 -
3.1. ICF Core Set developing protocol... - 9 -
3.1.1. Preliminary studies... 10
3.1.1.1. Systematic literature review... 10
3.1.1.2. Expert survey... 10
3.1.1.3. Multicentre study... 10
3.1.1.4. Qualitative approach... 11
-3.1.2. Consensus conferences... 11
-3.1.3. Validation studies... 12
-3.1.3.1. Multi-centre international validation study... 12
-3.1.3.2. Validation from the health professionals’ perspective... 12
3.1.3.3. Validation from the patients’ perspective... 13
-3.2. Experiences in implementing ICF Core Sets into rehabilitation practice... - 14 -
3.2.1. Reliability of ICF Core Sets... 14
-3.2.2. Implementation of ICF Core Sets into clinical practice... 14
-3.2.3. Qualitative considerations on implementing ICF Core Sets... 15
-3.3. Critical remarks on ICF Core Sets... - 15 -
3.5. Comments from the ICF Research Branch on ICF Core Set implementation... - 16 -
4. DEVELOPMENT OF NEW ICF-BASED ASSESSMENT INSTRUMENTS
... - 17 -
4.1. Assessment instruments... - 17 -
4.1.1. Generic instrument including all ICF domains... 18
-4.1.1.1. IRES-3... 18
-4.1.2. Disease specific instruments including all ICF domains... 18
-4.1.2.1. MSIP... 18
4.1.2.2. FAIM... 18
-4.1.3. Generic instruments at activity and participation domains... 19
-3.1.3.1. MOSES... 19
4.1.3.2. AMPAC... 19
-4.1.3.3. Mini-ICF-P... 19
-4.1.3.4. PIPP... 20
-4.1.3.5. The Participation Scale... 20
-4.1.4. Generic instruments at the environmental factor domain... 20
4.1.4.1. CHEC... 20
-4.1.4.2. Further instruments by the Enabling Mobility Centre (EMC)... 21
-5. SOME IMPORTANT ICF ACTORS IN REHABILITATION RESEARCH AND
PRACTICE
... - 23 -
5.1. German ICF actors... - 23 -
5.1.1. ICF Research Branch Munich... 23
-5.1.2. German Institute of Medical Documentation and Information (DIMDI)... 23
-5.1.3. German Pension Insurers... 24
-5.1.4. Federal Working Committee for Rehabilitation... 24
-5.2. International ICF actors... - 25 -
5.2.1. Institute of Physical Medicine of the University Hospital Zurich, Switzerland... 25
-5.2.2. Swiss Paraplegic Research Centre (SPR)... 26
-5.2.3. European Union of Medicine in Assurance and Social Security (EUMASS)... 26
-5.2.4. Measuring Health and Disability in Europe (MHADIE)... 26
-5.2.5. Rivm – National Institute for Public Health and the Environment of the Netherlands... 27
-5.2.6. Disability Italian Network (DIN)... 27
-5.2.7. Australian Institute of Health and Welfare... 28
-5.2.8. American Psychological Association... 28
-6. CONCLUSION
... - 29 -
7. INDEX OF FIGURES
... - 30 -
8. ANNEX
... - 30 -
PROJECT DESCRIPTION
Background
The International Classification of Functioning, Disability and Health (ICF) was officially endorsed by the World Health Organisation (WHO) and recommended for implementation within the WHO member states in 2001. ICF is considered to facilitate inter- and multidisciplinary work by providing a common language for the involved professions as well as patients and their proxies.
Many researchers and practitioners in various countries began to adapt ICF as a reference model mainly in the field of rehabilitation. However, to date no guidelines exist on how to use the ICF as a classification tool in practice. Therefore a variety of instruments are currently being developed and implemented by different national and international working groups. Some important activities are undertaken in European countries like Germany, Switzerland or Italy, but also in Australia and North America to name only a few examples.
Activities in Denmark are neither nationally coordinated nor internationally perceived. Presenting an overview about implementation strategies abroad and possibilities of applying ICF to rehabilitation practice might encourage practitioners in this country to further expand the use of ICF in their work and to participate in international research projects like e.g. the development and validation of ICF Core Sets coordinated by the ICF Research Branch in Munich.
Objective
The objective of this study is to present a survey of current projects using the ICF as a practicable tool in German and international rehabilitation research and practice.
The report shall reveal the most common activities in rehabilitation research and practice by describing them and collecting all relevant literature sources to enable readers to further self-study.
Target group
As the project is designed as a literature review about ICF in rehabilitation there is no particular target group. However, certain actors in research and practice will be presented with their projects. The report will be presented to Marselisborg Centret Århus and can be used as a foundation for further ICF research and developing work in Denmark.
Design: method and database
Two standardised literature reviews about ICF in rehabilitation are undertaken. The first one is done by a librarian in four databases:
PubMed, EMBASE, PsychInfo and Cochrane.
The search-items are defined as “ICF AND rehabilitation” with the following limits:
- articles published during the last three years (as there already exist three different literature reviews about ICF in rehabilitation [1-3] for the period before 2005)
- humans
- English and German language
- age: adults 19+years.
The search shows a varying amount of articles in the four databases:
- PubMed: 49
- EMBASE: 51
- Cochrane: 20
The second search is done by the author one day later with the same search-items (ICF in rehabilitation, articles published between 2005 and 2008 in German and English language) at the database of the German Institute of Medical Documentation and Information (DIMDI).
Here 15 databases are observed which render a total number of 487 articles in nine of the 15 databases.
After removing duplicates and incorrect articles
(ICF as the abbreviation for “intracortical facilitation” (ICF) or as the abbreviation for “Intermediate Care Facility” (ICF))
a total number of 236 articles is filtered out of the two standardised literature reviews.
The articles are then sorted by their titles and abstracts according to their relevance to the question of interest: ICF as an application tool in rehabilitation practice and research.
At the end 113 articles are sought out and grouped according to specific topics.
Additionally a non-standardised literature search is carried out by viewing the literature sources of ICF (overview) articles. Some articles published before 2005 are included because of their relevance as an introduction into the thematic field. While reading these articles other literature sources are detected such as the biannual Newsletter of the WHO Family of International Classification (FIC) published by rivm – National Institute for Public Health and the Environment. Another strategy consists in searching the internet for actors in the ICF field. Most working-groups also publish important literature on their homepages such as the ICF Research Branch in Munich, the Swiss Paraplegic Research Centre, DIMDI or the Measuring Health and Disability in Europe (MHADIE) team.
A last source for single articles or general ICF information is a direct Email contact to several actors in the ICF research area namely Thomas Ewert from the ICF User Conference Committee from Munich Clinical Centre, Michaela Coenen from the ICF Research Branch in Munich (who comments on the implementation of ICF Core Sets), Erik Farin from the Psychological Department of the University Freiburg, Michael Linden from the Psychosomatic Rehabilitation Working Group of Charité Medical Department Berlin and Wim van Brakel from the Royal Tropical Institute in Amsterdam.
Organisation
The project is carried out in the period of April 1st til June 20th, 2008 at Marselisborg Centret Århus, bygning 1B, by the author with initial help of a librarian and in constant contact with two supervisors (Hanne Melchiorsen, ICF consulent and Claus Vinther Nielsen, head of research institute). The results will be presented on a conference (June 6th, 2008) and in the following written report listing all included literature sources.
RESULTS
The literature review shows that WHO prioritizes in three major projects of implementing ICF into rehabilitation practice and research:
1. mapping of existing generic and specific-specific health-status measurements to ICF-terminology (chapter 2)
2. development, validation and implementation of ICF-Core Sets (chapter 3)
3. development, validation and implementation of new ICF-based assessment instruments (chapter 4).
Furthermore a selection of nationally and internationally important actors in research and practice identified will be presented in chapter 5.
ICF is no longer only used as a philosophic reference model. Its practicability and with it its acceptance among practitioners has improved with the development of the here mentioned projects, tools and instruments.
1. INTRODUCTION
The ICF is WHO’s framework for measuring health and disability at both individual and population levels. It consists of three key components summarized under the umbrella terms functioning and
disability:
- body functions and structures referring to physiologic functions and anatomic parts, respectively loss or deviation from normal body functions and structures in the meaning of impairments
- activity as the execution of a task or an action by an individual, respectively activity limitation as difficulties in performing a task or an action
- and participation as the involvement in a life situation, respectively participation limitation as problems experienced with such an involvement.
The three components are related to and interact with the health condition of an individual and personal and environmental factor as can be seen in figure 1:
Figure 1: Framework of International Classification of Functioning, Disability and Health by the World Health Organization in 2001 [3]
The ICF classification was designed to uniform language, both internationally and interdisciplinary. Furthermore it should promote homogenous ways of evaluation in extremely different social health care contexts. It is meant to be exhaustive by its very nature but therefore becomes very complex for daily use. No practitioner can be asked to describe the functional status of a patient with approximately 1400 ICF-items in daily use.
However, any classification is only as good as it is used within practice. Therefore many approaches are undertaken to facilitate the application of ICF in rehabilitation practice. In the following report the main approaches of implementing and applying ICF into practice and research are described.
2. LINKING HEALTH-STATUS MEASUREMENTS TO THE INTERNATIONAL
CLASSIFICATION OF FUNCTIONING, DISABILITY AND HEALTH (ICF)
Already in 2002 the research group around Gerold Stucki and Alarcos Cieza from the ICF Research Branch of the German WHO Family of International Classifications (FIC) collaborating Centre in Munich became aware of the necessity to harmonize the hitherto widely used rehabilitation assessment tools to the commonly accepted conceptual framework of the ICF. It was expected that without the unification of items assessed by existing measurements to the ICF categories and terminology a concurrent use in the description of functioning and health in rehabilitation could hinder the common comprehension of evaluation of patients’ problems, intervention management and outcome. As it is important to understand the relationship between the concepts of ICF and health-status measurements the idea was born to define systematic linking rules [4].
2.1. Linking rules
A group of experts on quality of life measurement and ICF consisting of three psychologists, one psychometrian, one clinician and one health-services researcher identified 300 items from 20 generic and disease specific health-status measurements and established ten linking rules including corresponding examples. Reliability was tested in four generic instruments (SF-36, Sickness-Impact-Profile, EQ-5D and WHODAS-II) and four condition-specific health-status measurements (Pain Disability Index, Lumbar Spine-Baseline, Self-Rating Depression Scale and Hamilton Depression Scale).
The results showed that one item from an assessment can be linked to one or more ICF codes depending on the number of concepts contained in the item. However, some items have to be linked to “non definable” if they refer to concepts like general health or are not yet classified within ICF such as personal factors. Strong consensus could be discovered between ICF and WHODAS-II (which is not surprising as WHODAS-WHODAS-II has been developed on the basis of the ICF classification) but also between ICF and SF-36. The lowest agreement could be found with the Self-Rating Depression Scale.
The authors concluded that linking is not at all simple and straightforward especially when items have to be mapped that are not specified or not yet defined by the ICF classification.
Three years later, in 2005, an updated version of the linking-rules was published with a redefinition and simplification of the original rules [5].
The necessity to do so rose from the persistent indefinite use of concepts and categories within rehabilitation research and practice.
Therefore the working group beforehand presented a classification of existing types of outcome measures in research:
(1) technical measures including laboratory, imagining and electro-physical examination
(2) clinical measures including tests of physical and cognitive impairment and tests to assess activities like walking
(3) patient-oriented measures including patient- and proxy-self-reports on health-status, quality of life and health preferences.
Furthermore it is again underlined that ICF provides a distinct definition of often interchangeably applied concepts like
- functional status which according to ICF refers to limitations and restrictions related to a health problem
- quality of life which refers to how someone feels about these limitations and restrictions
- health preferences which refer to the personal value given to this limitations and restrictions.
To highlight what is assessed by the varying number of often competing condition-specific and generic instruments the previous linking rules have been updated to eight general ones and additionally three specific rules for health-status measures and one specific rule for technical and clinical measures.
As a simplification the categories “other specific” and “unspecific” are no longer used. Therefore the term “non definable” (nd) has been added with specifications as “non definable- general health” gh), “non definable – physical health” ph), “non definable – mental (emotional) health” (nd-mh) and “non definable – quality of life” (nd-qol). If the meaningful concept is not contained in the ICF it is assigned “not covered” (nc) while it is assigned as “personal factor” (pf) if it clearly belongs to this category. The last rule allocates meaningful concepts referring to a diagnosis or health condition to the category “health condition” (hc).
The application of linking rules is still limited to the content of outcome measures. Psychometric properties of the measurements can not be mapped or explained by the linking rules. The rules should only be applied to technical, clinical and health-status measurements and interventions. When used in other approaches like Delphie method or patient interviews the authors should be contacted beforehand. Furthermore causal relationships between concepts contained in an item can not be explained or shown by the linking rules and it is neither discriminated between the concepts of activity and participation nor between capacity and performance.
The WHO provides a website with previously released mappings of often used instruments in rehabilitation assessment: http://www.who.int/classifications/apps/icf/icfinstrumentmap/.
These examples have been developed by WHO and its’ Network of Collaborating Centres “in order to allow instrument users to streamline their crosswalk coding efforts to ICF codes with the goal of generating comparable clinical information efficiently”. So far the mapping of the commonly used instruments
- Barthel Index (BI)
- Functional Independence Measure (FIM)
- The Index of Independence in Activities of Daily Living (ADL)
- London Handicap Scale (LHS)
- Short Form 36 Health Survey (SF-36)
- WHO Disability Assessment Schedule II (WHODAS II) can be downloaded from this website.
2.2. Content comparison
Moreover working groups have begun to map condition specific measurements to the ICF mainly when initiating the development of the according ICF Core Set.
These so called “content comparisons” examine the heterogeneity and relationship between respective assessments and the ICF components of body functions (and sometimes also body structure), activity and participation and environmental factors. The results provide clinicians and researchers with new insight when selecting health-status measures for clinical studies. Yet it still has to be decided which assessment fits best to the purpose of the study and the population to be examined. The content comparison delivers no information about the instruments’ psychometric properties, response categories or practicability.
However, content comparison may help with the decision which assessments to choose with regard to its bandwidth, precision, fineness and specification and to avoid overlap between items of generic and condition specific tools.
Finally content comparison can reveal missing categories that should be added when creating new tools. Most often contextual and environmental factors such as attitudes of the family, significant others or support at work are so far scarcely represented in assessments.
On the other hand it was pointed out, that there is a need to further specify some ICF-categories like emotional functions and to classify personal factors within the ICF to allow a more concrete mapping.
Content comparisons have so far been published for the following conditions:
- health related quality of life (HRQOL) instruments [6]
- health related quality of life instruments used in stroke [7]
- health related quality of life instruments for COPD [8]
- low-back pain specific instruments [9]
- obesity specific instruments [10]
- occupation-based instruments in adult rheumatology and musculoskeletal rehabilitation [11]
- osteoporosis specific instruments [12]
- fibromyalgia specific instruments [13]
- head and neck cancer specific instruments [14]
- health related quality of life instruments used in obstructive sleep apnoea [15]
- hand osteoarthritis specific instruments [16].
Implied measurements and results of the content comparison can be seen in the annexed table 1. The definition of linking rules also represents an important preliminary step for establishing the development protocol for ICF Core Sets, which will be illustrated in the next chapter.
3. ICF CORE SETS: DEVELOPMENT, VALIDATION AND IMPLEMENTATION
The ICF Core Set project is a joint project of the University of Munich, namely the ICF Research Branch of the German WHO Family of International Classifications (FIC) collaborating Centre and the Classification, Assessment and Surveys (CAS) Team of the WHO. It was initiated in 2001 under the direction of Prof. Gerald Stucki and officially endorsed in 2002 on a WHO-conference in Triest as prior regarding the implementation of ICF into practice [17]. Presently the first versions of the ICF Core Sets for 12 chronic diseases are being validated. This validation phase will be finished in summer 2008. The results will be presented on a conference in Switzerland in the late autumn of this year.
ICF Core Sets are being developed as practice-friendly tools in order to reduce the complexity of the whole ICF classification. They present a list of ICF categories that are relevant to most patients with a specific health condition. For each ICF Core Sets two different versions are existent:
- a Comprehensive ICF Core Set to guide multidisciplinary assessments in the rehabilitation process. They contain as few categories as possible to be practical, but as many as necessary to be sufficiently comprehensive to describe in a multidisciplinary assessment the typical spectrum of problems in functioning of patients with a specific condition.
- Brief ICF Core Set are a minimal data set to be rated in all patients included in a clinical study. The Brief ICF Core Sets should fulfil the same task as the Comprehensive ICF Core Sets in clinical studies and possibly clinical encounters [18].
So far under the direction of Prof. Stucki and his team of 20 members there have been identified twelve ICF Core Sets for chronic health conditions from musculoskeletal [19-22], neurological [23-25] or internal medicine [26-30] areas , three ICF Core Sets for acute facilities [31-33] and four ICF Core Sets for early post-acute facilities [34-37].
Recently a number of projects have been initiated by the ICF Research Branch but also other study centres hosted e.g. in Austria, Switzerland, Spain, the Netherlands or New Zealand to identify further disease specific ICF Core Sets. For some of them the first versions have already passed the consensus conferences: one generic ICF Core Set for chronic conditions and several disease specific ICF Core Sets as spinal cord injuries (SCI) (consensus conference November 2007) [38], ankylosing spondylitis (consensus conference September 2007), multiple sclerosis
(consensus conference May 2008) [39] and oropharyngeal cancer (consensus conference November 2007) [40]. Other disease specific ICF Core Sets are under development [41], as for example for lupus erythomatodes (SLE) and systematic sclerosis (SSC) [42], psoriasis and psoriasis arthritis, sleep, bipolar disorders [43], visual impairment and manual medicine. For further information about existing or ICF Core Sets under process see the annexed table 2.
3.1. ICF Core Set developing protocol
The ICF Research Branch has generated a protocol for the development of ICF Core Sets based on a formal decision making and consensus conference process integrating evidence from preliminary studies and expert opinion [18]. Each Core Set developing process is scheduled to three years and contains three phases. In phase one nowadays four preliminary studies are undertaken:
1. systematic literature review 2. expert survey
3. empirical data collection
3.1.1. Preliminary studies
In the preliminary studies four different approaches are nowadays conducted according to the ICF Core Set development protocol.
3.1.1.1. Systematic literature review
The systematic literature reviews for the first twelve chronic conditions [44-48] represent the researchers’ perspective investigating study populations suffering from one of the specific conditions. The question of interest is: what problems of persons with specific impairment are measured and reported in the literature.
The reviews are conducted in a three-step study design by two independent reviewers. At first the researchers scan all randomised controlled studies (RCTs) within a certain time period that have been carried out within the specific diseases. Outcomes on clinical tests, single item measures on different domains, biochemical, physiological and imaging tests, biopsy and questionnaires are extracted. In the last step all the concepts contained in the outcome measures are linked to the corresponding of the ICF using the 10 linking rules [4;5]. Thereafter descriptive analyses are calculated to obtain only the categories with a frequency of ≥10%. Categories that are not transferable are linked to either “non definable” (“nd”) or “not covered” (“nc”). So far the ICF categories do not cover personal factors, aetiological concepts or concepts of patient satisfaction. In these reviews an important work of linking the items of existent generic or disease specific assessment instruments to ICF categories is conducted. Similar work but more explicitly described was done in the content comparison of disease specific or health-related quality of life instruments [6-16] that have already been presented in chapter 2.2.
3.1.1.2. Expert survey
In an international expert survey via email a three-round Delphie-method was used to identify the most typical and relevant ICF categories within the twelve chronic conditions by the health professionals that treat them [49]. These categories were again linked to the ICF by two trained researchers. When discordance between them appeared, a third health professional was asked to make an informed decision. The degree of consensus was then calculated by descriptive statistics. As a result twelve different interim ICF Core Sets could be presented. The authors suggested additionally the identification of a Generic ICF Core Set for all chronic conditions as a great consensus in a variety of ICF categories within all conditions could be observed. Within the twelve interim Core Sets the greatest diversity could be found between the component body structure due to the different body parts that are impaired. The greatest consensus, however, could be found within the health conditions at the components activity and participation and environmental factors. The differing numbers of relevant ICF categories in the disease specific ICF Core Sets reflect the different burden of conditions. For example as a result from the consensus conferences the 1st version Comprehensive ICF Core Set for stroke contains the highest number of 2nd level items (130) due to the great variability and complexity of stroke, whereas the 1st version Comprehensive ICF Core Set for osteoarthritis only consists of 55 items.
3.1.1.3. Multi-centre study
The third preliminary study collected data through a multi-centre, cross-sectional study [50] between July 2001 and March 2003. 33 rehabilitation centres in Germany (30 inpatient, two outpatient and one with both facilities) participated. Physicians and other health professionals trained in a structured one-day ICF-workshop examined and questioned the study population (N=1044) consisting of convenient samples of patients with one of the twelve diagnoses in inpatient or outpatient rehabilitation. Age, gender, the WHODAS-II and SF-36 questionnaire, the Self-Administered Comorbidity-Questionnaire and the ICF-checklist were measured. As a conclusion the identification of ICF Core Sets was considered as essential as there is a need to address all components of the ICF when assessing functioning and health in patients with chronic diseases.
3.1.1.4. Qualitative approach
The qualitative approach [51] using focus groups as the fourth method of the preliminary studies was added later on to this phase of the developing process. Originally it was a part of phase II – the validation and testing phase. After a pilot-study the formal protocol for the patient interviews could be fixed and be recommended for the use during the preparatory phase.
One main purpose in adopting this method already to the preliminary phase – besides adding more evidence - is to strengthen the patients’ perspective. The patients themselves are experts for their own living situation and can describe at the best the impact of their health condition to daily life. Two different approaches of focus group designs were tested:
- an open approach in which patients were asked to name their problems on the ICF-domains including environmental factors as barriers or facilitators
- an ICF-based approach confronting patients with open-ended questions to each of the represented categories from the Comprehensive Core Sets. Afterwards missing items were added.
The focus groups usually consisted of a sample size of seven persons according to the qualitative factor of maximum variation strategy. The number of focus group sessions was determined by saturation. After an introduction by the focus group leader and his assistant to focus-group guidelines and the ICF model open-ended questions were presented to the participants via Power Point. The following discussion was journalized and the resulting conclusions given back to the patients at the end of the procedure.
The focus group leader and his assistant analyzed the data with a qualitative interpretation technique, f.e. the meaning condensation method and linked all categories to the ICF according to the ten a priori linking rules. Again in case of disagreement a third ICF-trained researcher made an informed decision.
Comparing the two different approaches it could be shown in the study with rheumatoid patients that only within the ICF-based approach sensitive issues like urination functions or sexual functions were mentioned, whereas issues concerning mood, disease management and coping were only brought up in the open approach. The authors concluded that the ICF-based approach turned out to be the most appropriate approach for validation approval which does not seem to be astonishing at all. Presenting the patients a certain amount of items he / she has a connecting factor to start his / her considerations from. On the other hand additional categories emerged from the open approach that should be checked and taken into account whether to add them to the list of possible ICF Core Set items. It could be shown in a study with patients from an other sociocultural context than western European that some problems of importance to patients might be omitted when using structured questions based on the ICF Core Sets [52].
3.1.2. Consensus conferences
The collected data of the preliminary studies were edited by the ICF Research Branch and presented to the invited participants on the three consensus conferences of musculoskeletal diseases including low back pain, osteoarthritis, osteoporosis and rheumatoid arthritis. It took place on April 26th -29th, 2002. The 2nd one on neurological diseases including chronic wide spread pain, depression, stroke and obesity took place on January 31st to February 3rd, 2003, and the last one on internal diseases including breast cancer, diabetes mellitus, obstructive pulmonary diseases and chronic ischemic heart diseases was held on May 30th to June 2nd, 2003 [18].
A half-day training workshop familiarized the participants with the ICF framework and classification. An iterative decision-making process based on the gathered evidence from the preliminary studies included debate and voting and lead to the passing of the first version Comprehensive and Brief ICF Core Sets for twelve chronic conditions.
3.1.3. Validation studies
By entering phase II the testing and validation of the first versions of ICF Core Sets began. Again different approaches have been applied both under direct direction of the ICF Research Branch and many partner organisations worldwide.
The most well-described validation methods are
- the multi-center international validation study
- validation from the health professionals’ perspective
- validation from the patients’ perspective.
3.1.3.1. Multi-centre international validation study
The aim of the multi-centre international validation study is to “examine the validity of the ICF Core Sets in specific populations and to identify candidate categories for the brief ICF Core Sets to be used in all clinical studies in a specific population” [53]. The data collection will be completed in summer 2008. So far 119 study centres specialized in one of the 12 chronic conditions from all over the world, but with a strong European representation of 76%, participated in the validation studies [54]. To harmonize data collection and guarantee reliability detailed training material including an introductive video and case studies is provided to all study centres. It can be
downloaded on the ICF Research Branch homepage:
http://www.inif.org/research/validationstudy.htm#validationsummary. 3.1.3.2. Validation from the health professionals’ perspective
The ICF Research Branch has exemplified a possible validation approach for the Comprehensive ICF Core Set for rheumatoid arthritis (RA) from the health professionals’ perspective, in that case the perspective of Physical Therapists [55]. A three-round Delphie-study was undertaken with 82 physical therapists from 12 different countries. In the first round they were asked to name all the intervention goals while treating patients with RA. The goals were then classified, frequencies calculated and the feedback of individual and group answers sent back to the professionals. In the second round the therapists should estimate the relevance of each named goals. After a last calculation of frequencies the professionals should reconsider concerning their own answers and the group answers, whether the residual goal was relevant treating patients with RA or not.
The conclusions of this study support the necessity of considering all four domains of the ICF when describing functioning from a physical therapists’ point of view. Most of the existing categories of the Comprehensive Core Set could be confirmed but also new categories emerged. This shows the need for further investigation and likely adaptation of the first version Core Set from the physical therapists’ or other health professionals’ perspective. However, it was again shown, that ICF Core Sets only propose what to measure and not how to measure. They should be used to complement profession-specific classification systems (in this example the “Guide to Physical Therapist Practice”). Core Sets as a bundling of relevant categories could act as a common platform from which different professions start their assessment and interventions and to which they return when discussing the treatment of patients and common intervention goals.
There have already been a number of international Delphie-surveys performed, which can be seen in figure 1. So far only one other study has been published [56].
Figure 2: Surveys with experts [54]
3.1.3.3. Validation from the patients’ perspective
Exemplarily for the Core Set of rheumatoid arthritis the ICF Research Branch started a pilot-study to generate a protocol for the validation from the patients’ perspective. As this approach later on became a part of the preliminary studies it has already been explained in chapter 3.1.1.4.
Furthermore researchers from various study centres in the world currently conduct validation studies in different cultural contexts. One group already published its results regarding the relevance of Core Sets for knee-osteoarthritis within Singaporean patients [52].
The validation-study targeted at
(1) observing the content validity of both Core Sets (Comprehensive and Brief) within a differing sociocultural context (three local ethnic groups of Chinese, Malay and Indian patients) and
(2) measuring inter-rater reliability while linking the concepts found in the focus groups interviews to ICF categories.
Comparing the identified concepts from the focus group interviews with the two ICF Core Sets, the Comprehensive Core Set showed good content validity (74 reported items could be linked to ICF
participants) needs to be supported by more empirical evidence in various sociocultural contexts. In this study especially the items religion and spirituality were considered as highly relevant to the mainly Muslim group of Malay patients’ which were not included in the Brief ICF Core Set.
In general a very good inter-observer agreement could be reached between two researchers: 95% on second level items with the exception of 88% second level body functions and 78% third level body functions . Compared to other studies concerning the inter-rater reliability [57;58] this is a very good result.
3.2. Experiences in implementing ICF Core Sets into rehabilitation practice
Below some published experiences in implementing the ICF Core Sets will be reported.
3.2.1. Reliability of ICF Core Sets
A Norwegian research group conducted a reliability study for the ICF Core Set of rheumatoid arthritis [59]. The aim was to test the inter- and intra-rater reliability (by calculating raw agreement and weighted kappa statistics) and to examine the metric of the ICF qualifier scale (by exploring the Rasch model for ordered response level). Therefore two ICF-trained interviewers with two different professional backgrounds (physical and occupational therapists) examined a sample of 25 patients with RA at two different time points. By applying the original qualifier scale of the ICF classification only low to moderate inter-rater (47%) and intra-rater (59%) agreement could be achieved. Rasch analyses suggested the collapsing of qualifiers from 0 - 4, 8, 9 within body functions , body structure and activity and participation to only 3 values and from -4 - +4, 8,9 within
environmental factors to also only 3 values. Thereafter intra-rater reliability reached a score of 72%, inter-rater reliability increased to 61%.
As ICF categories are not self-assessed but have to be interpreted by patients’ report and thereafter scored by health professionals they are very vulnerable for discrepancy. Reliability is even harder to achieve within differing health professions especially within the environmental factors (as they may act both at the same time as facilitator or barrier). The authors concluded an improvement of reliability when collapsing the qualifiers but recommended further research within different contexts and a bigger sample size. To minimize the time consume of ICF Core Set implementation the compilation of a training manual and clarification of the ICF concepts would be helpful.
3.2.2. Implementation of ICF Core Sets into clinical practice
So far mainly two implementation proposals of ICF Core Sets are described in the literature.
The first approach suggests an integration of ICF Core Sets into the Rehab-CYCLE Model of assessment, assignment, intervention and evaluation [3;60-62] which will be further described in chapter 5.2.1. In this approach ICF Core Sets are just one of a number of specially designed ICF tools. They may be used during the assessment phase in combination with an ICF Assessment Sheet to document all items of a specific condition relevant to the patient. This serves as the basis for the creation of other ICF tools like the ICF Categorical Profile, the ICF Intervention Table and the ICF Evaluation Display [63].
The second approach is part of the multi-centre validation study composed by the ICF Research Branch in Munich. Detailed training-material including a demonstrative video how the multi-centre studies should be conducted is available as download-files on the Research Branch’s homepage:
http://www.inif.org/research/validationstudy.htm#video_ra. All participating partner organisations are asked to use the Case Report Form as a protocol to collect patients’ data within clinical observation. The Case Report Form is provided in two versions: one filled in by health professionals after questioning the patients and one by the patients themselves. Besides sociodemographic data of the patients and disease related diagnosis the sheet is structured like the ICF Core Sets and contains the ICF code with verbal expression and detailed explanation as well as the ICF qualifiers including the values “8” for “not specified”, “9” for “not applicable” and “C” in case of “comorbidity”.
Some results in applying the ICF Core Sets into rehabilitation practice with the help of Case Report Forms are published in the following source.
3.2.3. Qualitative considerations on implementing ICF Core Sets
While undertaking the multi-centre validation study of four different ICF Core Sets (chronic wide spread pain, osteoporosis, obstructive pulmonary disease and stroke) an Italian research group additionally collected qualitative data from the performing health professionals [64]. Problems emerged mainly within the operationalisation of ICF categories into understandable questions for patients especially with lower education or some kind of cognitive impairment. This process was both time consuming and affected by the different professional backgrounds of the interviewers as they put emphasize on the meaning of diverse ICF dimensions. As shown in the last study health professionals from all disciplines reported problems in assigning the qualifiers in a reliable way. Especially within the domains activity and participation and the environmental factors incertitude emerged depending on the professionals’ background. Furthermore interviewers were not totally clear about whether the qualifiers should be assigned based on the patients’ perspective or their own consideration.
The authors propose the need to clarify ICF Core Set categories to provide a common operationalisation for patients and health professionals in different sociocultural settings. Therefore interviewers should be offered a continuous training on ICF implementation and linking.
3.3. Critical remarks on ICF Core Sets
There have certainly been critical remarks on the ICF Core Set development process and consensus conference procedure [65]. First of all it can be of a general risk to identify disease specific Core Sets as they might be entrenched within a medical model once again and therefore hinder their generic use in interdisciplinary rehabilitation. The credit of the ICF classification can be seen to have shifted away from the medically biased view concerning functioning. Now, especially with the overrepresentation of physicians in the developing and consensus process a strong emphasis on body functions and for this reason neglect of activity, participation and environmental factors could be anticipated. In reality, however, approximately 20% of Core Set content is
environmental factor. This represents the strategic change of the developing protocol, f.e. with the implementation of patients’ focus groups already in the preliminary phase.
In case of patients with multimorbidity more than one ICF Core Set has to be taken into account which undermines the originale rationale for developing disease specific ICF Core Sets.
As personal factors have not yet been classified in the ICF it is also difficult to address central issues such as coping strategies or pain beliefs in the current versions of the ICF.
With regard to the international validity and applicability of ICF Core Sets it has to be queried how relevant they will be in developing countries where there is no luxury of disease-specific services. As most of the ICF Core Sets so far have been developed in the context of Western European and mainly German speaking settings the international multicenter study has to reveal the utilization in other cultural settings.
Altogether, other health professionals and members of self-help groups should be better represented in the consensus conferences as it had been the case in the developing process of the ICF classification. A holistic view of functioning can only be achieved within multidisciplinary (including patients and their proxies as experts of their own living-situation) and intercultural collaboration.
3.4. Benefits of ICF Core Sets
Even though ICF Core Sets are usually generated for a specific health condition the developing process can contribute to a holistic documentation of the complex interplay between biological, social and psychological factors of ones living situation. Therefore it is absolutely essential to consider all ICF-domains.
It has already been proved, that Core Sets contribute to the clarification of roles in multidisciplinary teams. They also helped to reveal differing clinical reasoning that lead to differing intervention goals between distinct professions [66].
ICF Core Sets propose appropriate categories to measure for clinical or epidemiological studies about a specific health condition by naming the most relevant domains.
They have already reached great importance for education of physicians, physiotherapists and other professions by providing a common language for a better understandning of the ICF concepts and an improved multidisciplinary work.
Last but not least they may improve the communication between health professionals and patients by providing a common language and understanding of functioning
Researchers and practicioners from all over the world are now expecting the results of the validation studies and the final versions of the ICF Core Sets for chronic conditions to include these ICF tools into their daily practice or research work. However, proposals on how to implement and score the items of the Core Sets still have to be developed and examined.
On enquiry the ICF Research Branch concluded the following:
3.5. Comments from the ICF Research Branch on ICF Core Set implementation
The official intention of the ICF Core Sets by the ICF Research Branch and the WHO for a future benefit and gain for rehabilitation practice and research is the definition of relevant areas to measure in patients with a distinct health condition. The implementation is still under discussion with WHO and will depend to what extent WHO insists on the application of the proposed qualifier scale. The ICF Research Branch therefore considers establishing a distinct scale for the ICF categories, to simplify the linking between existing clinical assessments and ICF categories.
So far the ICF Research Branch opines that concerning the implementation in rehabilitation practice ICF Core Sets only constitute what to measure and not how to measure. Hence every practitioner or researcher applying the first version Core Set is asked to be creative in choosing the appropriate measurement for his or her clinical evaluation or study depending on the aim of the study and the patient population. Measuring instruments can be clinical testing, questionnaires, self-ratings of patients or clinical decision using rating-scales.
However, the results from the validation studies of the first twelve ICF Core Sets for chronic conditions will have to be interpreted carefully with regard to a possible application of the ICF qualifiers. A potentially modified version could provide reliable and valid data for each category. Therefore further analysis and research are essential.
Yet, in current research projects each category of an ICF Core Set can be assessed using the qualifiers form 0-4 in terms of a clinical evaluation. Another possibility would be to preliminarily define which category should be covered by which assessment or questionnaire and how to apply this instrument. Preliminary work should be conducted by linking the contemplable instruments and items. Currently the ICF Research Branch is working on an update to the linking rules [4;5] and contacts all researchers that have so far been working with the to-date linking rules.
4. DEVELOPMENT OF NEW ICF-BASED ASSESSMENT INSTRUMENTS
In clinical research and practice reliable and valid assessment tools and outcome measures are needed. Nowadays a widely varying taxonomy exists with regard to the definition of constructs as
functioning, disability and health. Many competing or complementary assessment instruments for generic use or specific diseases to be applied in different settings are existent partially unknown to practitioners or researchers. Due to this fact comparison or even understanding of rehabilitation studies is often hampered. Therefore the systematic use of a common framework like the ICF taxonomy and ICF-based standards in planning, conducting and evaluating rehabilitation studies and interventions may contribute importantly to their quality, readability and comparability [3] . Alone from an economical point of view it is also reasonable to link existing measurements to ICF categories. However, many of the currently used measurements have been developed from a condition oriented perspective [62]. Therefore it is necessary to bridge existing gaps with the creation of functioning-oriented tools based on the ICF as the classification provides taxonomy to operationalize measurements [67].
As ICF Core Sets - as an example for practice-friendly ICF tools - only define what to measure and not how to measure some research groups have started to develop new assessment instruments for various fields in rehabilitation.
Some of the published instruments are for generic use, others for disease specific use. Some cover only one domain of the ICF or single category-groups from one domain, others contain items from several ICF domains. Most of the instruments, however, are constructed as patient questionnaires whereas few are conducted as observer rating tools.
Below the development process of some published assessments will be described in detail to give an impression in which way researchers realize their claim to create an ICF-based tool. Further information about theses questionnaires can be reached from the annexed table 3. The presented list of recently developed ICF-based instruments does not claim to be exhaustive.
4.1. Assessment instruments
Generally it can be distinguished between two types of assessment instruments: generic and disease-specific ones.
Generic instruments are not specific to any particular disease and are therefore most commonly used for general survey research on health allowing comparisons between disease states.
In contrast, disease-specific questionnaires which are necessary in order to focus on domains most relevant to a particular disease are thought to be more sensitive than generic instruments following therapeutic interventions.
4.1.1. Generic instrument including all ICF domains
So far one generic instrument including all ICF domains can be identified in the literature. 4.1.1.1. IRES-3
A generic instrument covering items from all four ICF domains is the revised patient questionnaire
“Indicators of Rehabilitation Status – IRES-3” [68]. It can be used for diagnosis and evaluation purposes to measure psychosocial consequences of diseases and occupational functioning. The authors have conducted a general revision of the former IRES-2 questionnaire by taking into account new aspects of a theoretical model of rehabilitation based on the ICF. The components of the ICF are moreover complemented through other categories not contained within the ICF, e.g. personal factors like coping, health behaviour of psychosocial factors. In this case rather the ICF framework was used as a basis of developing a new tool than the single ICF-items. Both the instrument (http://skl14b.ukl.uni-freiburg.de/aqms/live/IRES-online.html) and the manual (http://skl14b.ukl.uni-freiburg.de/aqms/live/IRES-online/Handbuch.html) can be downloaded free of charge.
4.1.2. Disease specific instruments including all ICF domains
The following two instruments are developed as disease specific instruments covering items from all ICF domains.
4.1.2.1. MSIP
The “Multiple Sclerosis Impact Profile (MSIP)” [69] is a disease specific patient questionnaire covering the ICF domains of body function, activities and participation as well as the environmental factors. Patients, their proxies and professionals treating multiple sclerosis patients selected relevant items from the complete ICF classification. Every chosen item was then formulated as a question while the complementary ICF codes have been added to ease the connection to the source. For some questions illustrative examples have been annexed to ensure adequate response. Each specific ICF domain has its own qualifier scale. The body functions ’ degree of impairment can be measured in a five-point scale according to the ICF qualifiers from 0-4 and additionally 9 for “I am not able to judge”. Activity items in terms of capacity are scored on a four-point scale with response options representing the need for personal assistance or assistive device in executing a task or an action. The participation items operationalized as performance qualifiers are scored with a five-point scale to evaluate the presence and degree of restriction in participation in life situations caused by obstacles in the current environment. For the environmental factor only a three-point scale was chosen to score the extent to which an environmental factor acts as a barrier or facilitator to execute tasks or actions or to participate in life situations. The preliminary version of the questionnaire had to undergo both several reliability and validation studies and psychometric evaluation and is now ready for use. A copy of the questionnaire is annexed to the published article [69].
4.1.2.2. FAIM
The Functional Assessment in Migraine Questionnaire (FAIM) [70] is a disease specific patient reported outcome instrument to measure the impact of migraine on mental functioning, activity and participation. Focus groups with migraine patients from the United States and Germany have been interviewed. The reported items were then categorized by the ICF system. A set of 22 mental functioning and 28 activity and participation items that rated highly on frequency weighted importance and showed strong psychometric properties was piloted to determine a final item set. After reliability and validity testing the final version now includes 9 mental functioning items measuring the dimensions of attention / thought (5 items) and perception (4 items). The perception items can just as well be omitted if a shorter version of the questionnaire is desired. Moreover the patients are offered a list of 28 items from the activity and participation domain from which they are supposed to choose the five items most relevant to them.
4.1.3. Generic instruments at activity and participation domains
So far most instruments have been developed for the activity and participation domains of the ICF classification. Some assessments refer to only one of these concepts and do discriminate between
activity as the execution of a task or an action by an individual and participation as the involvement in a life situation. Other tools claim to measure both concepts at a time referring to some items as a description for activity and others for participation. As there is no recommendation in the ICF classification how to use items from this domain it is absolutely essential to explain the underlying definition of activity and / or participation in the particular assessment. Furthermore there is a possibility of distinguishing between the concepts of capacity as the ability of an individual to carry out a task or an action in a standard environment and performance as actions that individuals are capable of doing in their real environment which even stresses the above mentioned necessity. 3.1.3.1. MOSES
The MOSES questionnaire [71;72] provides another generic instrument measuring activity in the areas of mobility, self-care and domestic-life. Altogether four different versions are existent: an adaptive patient-questionnaire and an observer-rating-version both to be applied at rehabilitation onset and ending to define therapy goals and evaluate rehabilitation outcomes respectively within quality assurance. For each four-digit-item of the ICFs’ mobility, self-care and domestic-life categories one item was created, altogether achieving 60 items on twelve scales. It has to be scored on a five-point Likert-scale. The instrument has been tested by Rasch-scalability, practicability, reliability and construct-validity and is now available in German language free of charge from the corresponding author on request: [email protected].
4.1.3.2. AM-PAC
The Activity Measure for Postacute Care (AM-PAC) [73] is based on a patient report. As it has been tested in samples of neurological, musculoskeletal and medical complex patients in different postacute settings (e.g. hospital, transitional care units, ambulatory services and home care) it can be categorized as generic. The developing process included the construction of activity items which are performed in multiple postacute settings (excluding those which can only be performed in inpatient or outpatient facilities). This was undertaken through a review by ten measurement and content experts and suggestions from focus group interviews. The 58 item Core Set was then validated in interviews with consumers about the relevance to their perceived recovery of function. Final analyses lead to item reduction and tested reliability and validity. The manual of the PC version of the 41 item instrument on the three scales of (1) applied cognition, (2) personal care & instrumental activities and (3) physical & movement activities scored with a five-point scale can be downloaded free of charge at: http://www.crecare.com/AM_PAC_CAT_manual_5.1.07.pdf.pdf. (Note: the research group has furthermore developed a generic instrument to measure participation in post-acute care (PM-PAC) [74], which is annexed to the published article. Permission to use the instrument can be obtained by contacting the first author at the Health Assessment Lab: [email protected].)
4.1.3.3. Mini-ICF-P
The Mini-ICF-Rating for Mental Disorders (Mini-ICF-P) [75] is an observer rating instrument of disability assessment with special regard to occupational functioning which in consequence can lead to participation restriction. Although it has been created within a disease specific purpose the authors refer to a possible adaptation to other diseases. All ICF items from the activity domains (1) general tasks and demands, (2) self-care, (3) domestic-life, (4) interpersonal interactions and relationships, (5) community, social and civil life and additionally items from the categories (6) mobility, (7) learning and applying knowledge (intelligence) and (8) communication (speech disorders) have been taken into consideration while creating the 12 items of the assessment. After a scoring on a five-point scale a total sum score can be computed which in some cases is helpful to practitioners. According to their study outcomes the authors conclude that the Mini-ICF-P is a reliable, practice-friendly, valid and economic tool for the measuring of activity impairments that
lead to participation restriction mainly in the occpupational area. Therefore it can especially be of use within sociomedical expertise. The instrument can be received in German and English language free of charge from the corresponding author on request: [email protected] . 4.1.3.4. PIPP
The Perceived Impact of Problem Profile (PIPP) [76;77] has been designed as a generic patient-questionnaire to overcome some of the weaknesses of patient-generated instruments. It should measure both the impact and distress caused by the health conditions from the individuals perspective. The item selection was inspired by the ICF classification, a review of existing measures and qualitative interviews. Besides categories from the ICF-activity and -participation domain individual psychological well-being (including independence and autonomy) is being measured on the sub-domains (1) self-care, (2) mobility, (3) participation, (4) relationships (5) psychological well-being and additionally environmental factors. Rasch-analysis and validation-studies among patients with disability impairment provide support for the psychometric properties of the PIPP as clinical and research measurement. The 23 items are so far scored on a six-point-scale. Considerations to change the qualifier scale into a three-point or four-point scale have to be proved in further studies. The instrument is available free of charge from the corresponding author:
4.1.3.5. The Participation Scale
Another generic ICF-based instrument is proposed by the Participation Scale [78;79]. It is espeacially suitable in countries with low- and middle-income as it had been generated in a cross-continental study in Nepal, India and Brazil. It claims to be client-perceived, generic in nature and suitable for non-professional interviewers. Patients are asked to name their level of participation and restriction in comparison to a peer without the disease or disability. Items had been collected thorugh field-observation, key informant and focus group discussions. After item-reduction they have been converted into questions and psychometrically tested. To guarantee international reliablity it has been back-translated into english after establishing the five translations in Portuguese, Hindi, Bengali, Telugu and Tamil. So far the 18 items on the 8 participation domains (1) learning and applying knowledge, (2) communication, (3) mobility, (4) self-care, (5) domestic-life, (6) interpersonal relationships, (7) major life-areas and (8) community, social and civil life have proved reliablitiy and validity in patients suffering from leprosy or disability. Validation for other stigmatised conditions has still to be examined but is expected.
4.1.4. Generic instruments at the environmental factor domain
The fewest instruments have so far been developed at the environmental factor domain. However, a research group from the Washington University in St. Louis, Enabling Mobility Centre (EMC), specialized on establishing tools assessing contextual factors as the head of the working group was also a member of the Environmental Task Force during the ICF classification developing process.
4.1.4.1. CHEC
So far in the standardized literature review only one assessment to measure exclusively environmental factors could be identified. In the Community Health Environment Checklist(CHEC)
patients evaluate physical features of public buildings according to the influence on their ability to participate in community activities [80]. Within qualitative interviews 25 patients with mobility impairments defined features to be assessed by the CHEC. After focus group approaches 22 physical features which were described in detail and 16 key destinations to examine, such as government buildings, stores, transportation, health care and service providers etc. could be identified. The list of items and buildings was then presented to a panel of four experts: one research architect, one psychologist, one industrial designer and one occupational therapist who were asked to develop practice-friendly terms. The 22 features have been organized in five sections: (1) entering the building, (2) using the building, (3) restrooms, (4) amenities and (5) usability and area of rescue assistance. The scoring is carried out dichotomously describing the
absence or presence of the feature. Furthermore the 22 features are weighted based on a ranking of “importance” of items. Therefore 17 patients ranked each feature according to the direction “imagine the most accessible place for you…”. Weights were then transformed monotonically to yield the range of a destination score to be from 0 to 100. Each facility obtains a total building score and four sub scores for entering, inside, restrooms and amenities in comparison to the desired standard of 100%.
The CHEC provides a short objective instrument (10-20 minutes) of the physical environment features important to persons with disabilities. It is existent as paper and computer survey form including a rulebook and glossary.
4.1.4.2. Further instruments by the Enabling Mobility Centre (EMC)
On a one-day guest lecture and workshop with the author team of the CHEC more information about their research work could be gained by the participants. It was pointed out, that the CHEC is only one part of a battery of assessment tools to measure social participation and impairment developed by the Enabling Mobility Centre (EMC) of the Washington University in St. Louis, Programme in Occupational Therapy (http://enablemob.wustl.edu/EMC/emc.htm).
Their mainly computer-based measurments are integrated into two complementary systems: (1) inidvidual participation assessment system and
(2) community assessmentsystem.
In the first section three tools are included which can be both filled in paperwise or with the help of a computer:
- Characteristics of Respondents (CORE) as a self-report measure to collect demographic characteristics of the participants
- Facilitator and Barriers Survey (FABS) [81] as a self-report measure of facilitators and barriers experienced during home and community participation
- Participation Survey (PARTS) [82] as a self-report measure of participation in major life activities.
In combination of these three tools a valid self-reported description of the subjective level of participation can be assessed.
The CORE provides information about the demographic data, diagnostic and secondary health conditions, mobility device use and transportation services of a person.
In the FABS people identify and score the level of facilitator or barrier in a variety of domains as primary mobility device, home built features (stairs, carpets, doors), community built and nature features, community destination access, community facilities access domains (restroom, transportation) or community support network (doctor, therapist, stores). All these items are linked to ICF codes and are scored by 0 to 100 on the three qualifiers (1) helps total, (2) has no effect and (3) limits total.
The PART assesses all domains of the ICF activity and participation dimension except for chapter 1 (learning and applying knowledge) and chapter 2 (general tasks and demands). In a much elaborated schema of questions participants are asked to name
- the frequency of their participation in a certain domain
- the level of participation limitation
- their level of choice in participation
- the level of satisfaction with participation
- the level of importance of participation
- the level of help required for participation
- the persons helping to achieve participation
The results from these three tools can be used to evaluate personal assistance services, mobility devices or outcomes of employment and physical training programmes.
In the second area of Community Assessment Systems besides the development of the CHEC a
Survey of Participation and Receptivity in Communities (SPARC) is conducted in terms of a self-reported measure of the receptivity of community sites. People with mobility impairment may contest in the web based survey at http://emc.wustl.edu/NCMRRstudyAd.htm.
Both the site accessibility and the perception of people at the community site is assessed in a temporal, personal and evaluative manner. The results can be used to identify further places and sites people with mobility impairments use and how they are able or restricted in their participation. The subjective SPARC results will be compared with the objective findings of the CHEC and may serve as an inspiration to initiate projects for participation improvement.
As shown a variety of projects is being initiated to uniform language in the area of ICF-based assessment instruments. Future rehabilitation research and practice will reveal which of these tools are going to win recognition. This depends on aspects like practicability, economic and content validity, reliability and other qualitative and quantitative quality factors.
As long as all newly developed instruments refer to the common framework of the ICF classification an international, intercultural and interdisciplinary understanding of the concepts of functioning, disability and health can be guaranteed.
5. SOME IMPORTANT ICF ACTORS IN REHABILITATION RESEARCH AND
PRACTICE
As it is recommended by the WHO more and more institutions and research groups have started to deal with ICF implementation and application in rehabilitation practice and research. The selection presented does not claim to be exhaustive but somehow reflects the great variety of distinct groups in distinct areas working with the ICF.
5.1. German ICF actors
As in the systematic literature review only articles published in English and German language are included a variety of German projects have appeared that shall be reported below.
5.1.1. ICF Research Branch Munich
One of the presently most active working groups in the ICF area is the ICF Research Branch (http://www.inif.org/index.htm) in cooperation with the Classification, Assessment and Survey Team (CAS) of the WHO. On the homepage their mission is described as:
“At the ICF Research Branch, WHO FIC Collaborating Center (DIMDI), Institute for Health and Rehabilitation Sciences, Ludwig-Maximilian University in Munich, we seek a better understanding of disability through multidisciplinary research. We develop, evaluate, and disseminate tools and models of functioning and health for different groups of patients and settings. We strive for the promotion of health, the restoration of functioning and the prevention of disability by applying the International Classification of Functioning, Disability and Health (ICF) of the World Health Organization.”
Their projects have already been described in the chapters 2 and 3. Many partner organisations worldwide participate in the Core Set study and help to develop and validate the first versions during the multi-centre study and validation from health professionals’ and patients’ perspective. Besides coordinating the development process of ICF Core Sets the ICF Research Branch acts as an information pool to contact in matters of ICF research.
Intensive training material including a demonstrative video has been elaborated and can be downloaded from the ICF Research Branches homepage:
http://www.inif.org/research/validationstudy.htm.
Regular training workshops on the methods to be followed for Development of ICF Core Sets are held in English language at the Institute for Health and Rehabilitation Sciences in Munich. The attendance is free of charge. Further information can be achieved by Alicia Garza
Moreover a detailed updated ICF-publication list is provided by the ICF Research Branch:
http://www.inif.org/publications/publications.htm
In a newly released newsletter constant information about the ICF Research Branches’ activities can be adapted:
http://www.inif.org/material/2008/ICF%20Research%20Branch_Newsletter_Vol1.pdf.
The ICF Research Branch cooperates with many national and international significant organisations. Some of them will be presented with regard to their role in ICF research or practice.
5.1.2. German Institute of Medical Documentation and Information (DIMDI)
On behalf of the German Federal Ministry of Health (BMG) the German Institute of Medical Documentation and Information (DIMDI) edits official classifications as ICD-10 and IDF. It acts furthermore as WHO-cooperation centre for the system of international classifications and is therefore official contact partner in all questions concerning ICF [17].
The ICF Research Branch was funded as a supplement institute with special regard to ICF research.
The official German language edition is based on the translation of a group of experts from Germany, Austria and Switzerland, who were already involved in the translation of the preceding versions, ICIDH-2 beta1 and beta2, and in the work on the final version of ICF. The group was headed by Dr. Schuntermann, Association of German Pension Insurers (Verband Deutscher Rentenversicherungsträger, VDR) and was funded by the Federal Ministries for Health, for Employment and by the VDR. Copyright on the German translation of this group was transferred to the Federal
