Associations with being physically active and the achievement of WHO recommendations on physical activity in people with spinal cord injury.

STUDY DESIGN: Secondary data analysis from the cross-sectional survey of the Swiss Spinal Cord Injury Cohort Study. OBJECTIVES: To explore associations with physical activity (PA) levels in people with spinal cord injury (SCI) with the specific aim to identify aspects that potentially explain being physically active (PHYS-ACT) and the achievement of the World Health Organization recommendations on PA. SETTING: Community sample (n=485). METHODS: Participants who completely answered four items of the Physical Activity Scale for Individuals with Physical Disabilities were included. Two outcome measures were defined: (1) being PHYS-ACT vs being completely inactive and (2) achieving WHO recommendations on PA (ACH-WHO-REC) (at least 2.5 h per week of at least moderate intensity) vs performing less. Independent variables were selected from the original questionnaire by applying the ICF framework. Multivariate logistic regression analyses were conducted. RESULTS: In the participants (aged 52.8±14.8; 73.6% male) older age decreased, but being a manual wheelchair user increased the odds of achieving both outcomes. Social support and self-efficacy increased the odds of being PHYS-ACT. Use of an intermittent catheter increased, whereas dependency in self-care mobility and coping with emotions decreased the odds for ACH-WHO-REC. Experiencing hindrances due to accessibility is associated with increased odds for ACH-WHO-REC. CONCLUSION: Being PHYS-ACT at all and achieving the WHO recommendations on PA are associated with different aspects. Applying the ICF framework contributes to a comprehensive understanding of PA behavior in people with SCI, which can tailor the development of interventions. Longitudinal studies should be initiated to test these associations for causal relationships.

Development of a health index in patients with ankylosing spondylitis (ASAS HI): final result of a global initiative based on the ICF guided by ASAS.

OBJECTIVES: The burden of disease in patients with ankylosing spondylitis (AS) can be considerable. However, no agreement has been reached among expert members of Assessment of SpondyloArthritis International Society (ASAS) to define severity of AS. Based on the International Classification of Functioning, Disability and Health (ICF), a core set of items for AS has been selected to represent the entire spectrum of possible problems in functioning. Based on this, the objective of this study was to develop a tool to quantify health in AS, the ASAS Health Index. METHODS: First, based on a literature search, experts' and patients' opinion, a large item pool covering the categories of the ICF core set was generated. In several steps this item pool was reduced based on reliability, Rasch analysis and consensus building after two cross-sectional surveys to come up with the best fitting items representing most categories of the ICF core set for AS. RESULTS: After the first survey with 1754 patients, the item pool of 251 items was reduced to 82. After selection by an expert committee, 50 items remained which were tested in a second cross-sectional survey. The results were used to reduce the number of items to a final set of 17 items. This selection showed the best reliability and fit to the Rasch model, no residual correlation, and absence of consistent differential item function and a Person Separation Index of 0.82. CONCLUSIONS: In this long sequential study, 17 items which cover most of the ICF core set were identified that showed the best representation of the health status of patients with AS. The ASAS Health Index is a linear composite measure which differs from other measures in the public domain.

[Can ICF core sets be helpful in preparing a social-medical expert report due to incapacity to work?--a first proposal]. / Können ICF Core Sets für die Erstellung von sozialmedizinischen Gutachten bei Anträgen auf Erwerbsminderungsrente hilfreich sein?--Ein erster Vorschlag.

INTRODUCTION: Social-medical expert reports from the German statutory pension insurance are essential for the German statutory pension regulatory authority to decide whether to grant services regarding participation as well as retirement pensions due to incapacity to work.The objective of this investigation is to determine whether the ICF Core Sets and other international approaches, such as the EUMASS Core Sets or ICF Core Set for vocational rehabilitation cover the content of the social-medical expert reports as well as to propose an approach how the ICF can be economically used by the social medicine practitioner when writing a social-medical expert report. METHOD: A retrospective quantitative study design was used to translate a total of 294 social-medical expert reports from patients with low back pain (LBP) or chronic widespread pain (CWP) into the language of the ICF (linking) by 2 independent health professionals and compare the results with the ICF Core Sets for specific health conditions and other international approaches. RESULTS: The content of social-medical expert reports was largely reflected by the condition specific brief ICF Core Sets, brief ICF Core Sets for vocational rehabilitation and EUMASS Core Sets. The weighted Kappa statistic for the agreement between the 2 health professionals who translated the expert reports were in CWP 0.69 with a bootstrapped confidence interval of 0.67-0.71 and in LBP 0.73 (0.71-0.74). DISCUSSION: The analyses show that the content of social-medical expert reports varies enormously. A combination of a condition specific brief ICF Core Set as well as vocational rehabilitation and EUMASS ICF Core Sets as well as all ICF-categories from the expert reports that were named at least in 50% of it can largely provide a basis for preparing expert reports. Within the scope of implementation the need for a specific ICF Core Set for expert reports of the German statutory pension insurance should be further analyzed and discussed.

Participation in sport in persons with spinal cord injury in Switzerland.

STUDY DESIGN: Secondary data analysis of a questionnaire-based, cross-sectional survey in persons with spinal cord injury (SCI) in Switzerland. OBJECTIVE: To describe the frequency of participation in sport (PiS) and to identify correlates for PiS in persons with SCI in Switzerland. SETTING: Community sampleMethods:Frequency of PiS was assessed retrospectively for the time before the onset of SCI and the time of the survey using a single-item question. A comprehensive set of independent variables was selected from the original questionnaire. Descriptive statistics, bivariate analyses and ordinal regressions were carried out. RESULTS: Data from 505 participants were analyzed. Twenty independent variables were selected for analyses. PiS decreased significantly from the time before the onset of SCI to the time of the survey (P<0.001). Sport levels were significantly lower in women than men for the time of the survey (P<0.001), whereas no difference was observed before onset of SCI (P=0.446). Persons with tetraplegia participated significantly less often in sport than persons with paraplegia (P<0.001). Lesion level, active membership in a club, frequency of PiS before the onset of SCI and the subjective evaluation of the importance of sport correlate with PiS. When controlling for gender differences, only the subjective importance of sport for persons with SCI determines PiS, particularly among women. CONCLUSIONS: Persons with tetraplegia and women need special attention when planning interventions to improve PiS. Furthermore, the subjective importance of sport is important for PiS, particularly among women, whereas most other factors were only weakly associated with PiS.

[Development of an ICF-based clinical practice guideline for the assessment of function in head and neck cancer]. / Entwicklung eines ICF-basierten Leitfadens für die Beurteilung funktioneller Aspekte bei Kopf-Hals-Tumoren.

BACKGROUND: Functional outcome following head and neck cancer is not regularly assessed in a standardized way in clinical practice. Clinical trials assessing functional outcome apply many different instruments. Therefore, results are not always comparable and have limited clinical implications. Aim of this study was the identification, interdisciplinary evaluation, and recommendation of functional outcome instruments for use in clinical practice and clinical trials in patients with HNC. MATERIAL: Preparatory studies came up with a shortlist of outcome instruments on the basis of previously determined criteria. An interdisciplinary expert group evaluated these instruments and decided on which ones can be recommended for use in 3 application areas: screening, therapy evaluation/planning, and clinical trials. Decision making health professionals included physicians (ENT and maxillofacial surgeons, radiotherapists, oncologists), medical psychologists, speech and language therapists, physiotherapists, and social workers. RESULTS: 98 instruments were presented at the consensus conference. Altogether 21 participants recommended for each of the 3 application areas a basic set of measures for the evaluation of impairment in 6 functional domains: follow-up therapy monitoring, pain, ingestion, voice/speaking, other organic problems, and psychosocial problems. CONCLUSION: A multi-professional expert's pool discussed and adopted recommendations for the use of functional outcome instruments in clinical praxis and/or in research. The re-commended instruments are now available for use in clinical routine.

Psychological resources in spinal cord injury: a systematic literature review.

STUDY DESIGN: Systematic literature review. OBJECTIVES: The purpose of this study was to gain a systematic overview of the role of psychological resources in the adjustment to spinal cord injury (SCI). METHODS: A systematic literature review was performed. The literature search was conducted in the databases Pubmed, PsycINFO, the Social Sciences Citation Index, the Education Resources Information Center, Embase and the Citation Index of Nursing and Allied Health Literature. The assessed variables, measurement instruments, results and the methodological quality of the studies were extracted, summarized and evaluated. RESULTS: A total of 83 mainly cross-sectional studies were identified. Psychological resources were categorized into seven groups: self-efficacy (SE), self-esteem, sense of coherence (SOC), spirituality, optimism, intellect and other personality characteristics. SE and self-esteem were consistently associated with positive adjustment indicators such as high well-being and better mental health. Interrelations between psychological resources and key rehabilitation outcome variables such as participation were rarely studied. Only a few interventions, which were aimed at strengthening psychological resources were identified. Longitudinal studies suggested that SE, SOC, spirituality and purpose in life were potential determinants of adjustment outcomes in the long term. CONCLUSION: Research on psychological resources in SCI is broad, but fragmented. Associations of psychological resources with mental health and well-being were frequently shown, while associations with participation were rarely studied. Further development of resource-based interventions to strengthen persons with SCI is indicated. This review can serve as guide for clinical practice and can add to the design of future SCI research.

The role of social support and social skills in people with spinal cord injury--a systematic review of the literature.

STUDY DESIGN: Systematic literature review. OBJECTIVES: To examine the current knowledge of how social support and social skills are associated with aspects of health, functioning and quality of life of persons living with spinal cord injury (SCI). METHODS: A systematic literature review was conducted. The literature search was carried out in Pubmed, PsycINFO, ERIC (Educational Resources Information Centre), CINAHL (Cumulative Index to Nursing and Allied Health Literature), Embase and SSCI (Social Sciences Citation Index). Publications were identified according to predefined eligibility criteria; study qualities were evaluated, study results extracted and a narrative synthesis was compiled. RESULTS: In all, 58 publications about social support and SCI were included. Social support was positively related to physical and mental health, pain, coping, adjustment and life satisfaction. Social skills were assessed in 11 studies: social problem solving (n=7), assertiveness (n=3), verbal communication (n=1) and self-monitoring (n=1) were examined. Effective problem-solving skills were related to better mental health outcomes, health prevention behavior and less secondary conditions. Assertiveness was related to higher depression in rehabilitation setting. Interventions targeted at social support or social skills were scarcely studied. Only one study examined the relationship between social skills and social support in SCI. CONCLUSION: Social support is associated with better health and functioning in individuals with SCI. However, the full range of social skills has not yet been studied in people with SCI. Furthermore, the role of social skills in relation to social support, health and functioning remains unclear. Better understanding of social skills and social support in SCI could facilitate the development of targeted and effective interventions to enhance functioning of people with SCI.

Explanatory power does not equal clinical importance: study of the use of the Brief ICF Core Sets for Spinal Cord Injury with a purely statistical approach.

STUDY DESIGN: Psychometric study analyzing the data of a cross-sectional, multicentric study with 1048 persons with spinal cord injury (SCI). OBJECTIVE: To shed light on how to apply the Brief Core Sets for SCI of the International Classification of Functioning, Disability and Health (ICF) by determining whether the ICF categories contained in the Core Sets capture differences in overall health. METHODS: Lasso regression was applied using overall health, rated by the patients and health professionals, as dependent variables and the ICF categories of the Comprehensive ICF Core Sets for SCI as independent variables. RESULTS: The ICF categories that best capture differences in overall health refer to areas of life such as self-care, relationships, economic self-sufficiency and community life. Only about 25% of the ICF categories of the Brief ICF Core Sets for the early post-acute and for long-term contexts were selected in the Lasso regression and differentiate, therefore, among levels of overall health. CONCLUSION: ICF categories such as d570 Looking after one's health, d870 Economic self-sufficiency, d620 Acquisition of goods and services and d910 Community life, which capture changes in overall health in patients with SCI, should be considered in addition to those of the Brief ICF Core Sets in clinical and epidemiological studies in persons with SCI.

Differences in functioning of individuals with tetraplegia and paraplegia according to the International Classification of Functioning, Disability and Health (ICF).

STUDY DESIGN: Cross-sectional, multicenter study. OBJECTIVES: To identify and quantify the differences in functioning of individuals with tetraplegia versus paraplegia using the International Classification of Functioning, Disability and Health (ICF) as a frame of reference. SETTING: International. METHODS: Functional problems of 1048 participants with spinal cord injury in 16 study centers in 14 countries were recorded using ICF categories. The level of significance and odds ratios (OR) for experiencing each of these functional problems were reported for individuals with tetraplegia and paraplegia. Regression models were adjusted for age, age squared, early post-acute or long-term context, gender and for world regions. RESULTS: Persons with tetraplegia are more at risk than persons with paraplegia to have difficulties in 36.4% categories of the component body functions. In the component body structures, 40% of the categories show significant differences. Individuals with tetraplegia indicate problems in three categories, whereas individuals with paraplegia are more likely to indicate problems in one category. Most categories indicating difficulties (56.6%) for persons with tetraplegia were found for the component activities and participation. The component with the highest congruency was the environmental factors. Overall, 3.7% categories (of the persons with tetraplegia as experienced, 2.4% of the categories as barriers, whereas 4.9% were experienced to be facilitators) obtained OR, indicating individuals with tetraplegia having more difficulties. CONCLUSION: The logistic regression analysis identified a variety of differences in functional problems in individuals with tetraplegia compared with individuals with paraplegia. The ICF has the potential to indicate the differences in health conditions.

The comprehensive ICF core sets for spinal cord injury from the perspective of physical therapists: a worldwide validation study using the Delphi technique.

OBJECTIVE: To validate the International Classification of Functioning, Disability and Health (ICF) Core Set for individuals with spinal cord injury (SCI) in the early post-acute and long-term context from the perspective of physical therapists. SETTING: International. METHODS: Physical therapists experienced in the treatment of SCI were asked about problems, resources and aspects of the environment treated by them, in a three-round electronic mail survey using the Delphi technique. Responses were linked to the ICF by two researches; κ-coefficient was calculated as statistical measure of agreement. RESULTS: In all, 81 experts from 27 countries named 3694 concepts. They were linked to 187 ICF categories for the early post-acute context. Three ICF categories from the component body function, five ICF categories from the component body structures and two ICF categories from the component activities and participation were not represented in the ICF Core Set for the early post-acute context. In all, 207 ICF categories were linked for the long-term context. Four ICF categories from the component body function, five ICF categories from the component body structures and two ICF categories from the component activities and participation were not represented in the ICF Core Set for the long-term context. CONCLUSION: Physical therapists addressed a vast variety of problems that they take care of in their interventions in patients with SCI. The Comprehensive ICF Core Sets covered a high percentage of these problems. Further research is necessary on several responses not covered in the ICF.

The comprehensive ICF core sets for spinal cord injury from the perspective of occupational therapists: a worldwide validation study using the Delphi technique.

OBJECTIVE: To validate the International Classification of Functioning, Disability and Health (ICF) core sets for individuals with spinal cord injury (SCI) in the early post-acute and long-term context from the perspective of occupational therapists (OTs). SETTING: International. METHODS: OTs experienced in the treatment in SCI were asked about problems, resources and aspects of the environment treated by them, in a three-round electronic mail survey using the Delphi technique. Responses were linked to the ICF by two researchers; kappa coefficient was calculated as statistical measure of agreement. RESULTS: In total, 67 experts from 27 countries named 2586 different concepts. For the early post-acute context, 223 concepts were linked to ICF categories. Three ICF categories from the component body function, three ICF categories from the component body structures and five ICF categories from the component activities and participation were not represented in the ICF core set for the early post-acute context with an expert agreement of more than 75%. For the long-term context, 205 concepts were linked to ICF categories. Two ICF categories from the component body function, four ICF categories from the component body structures and two ICF categories from the component activities and participation were not represented in the ICF core set with an expert agreement of more than 75%. CONCLUSION: OTs addressed a vast variety of problems that they take care of in their interventions in persons with SCI. The Comprehensive ICF core sets covered a high percentage of these problems. Further research is necessary on a few aspects that are not included in the ICF core sets for SCI.

The individual experience of functioning and disability in Switzerland--patient perspective and person-centeredness in spinal cord injury.

STUDY DESIGN: Qualitative, multi-center study. OBJECTIVES: The objective of this study is to explore the aspects of functioning and disability that are relevant to individuals with spinal cord injury (SCI), using a comprehensive approach based on the International Classification of Functioning, Disability and Health (ICF). METHODS: Forty-nine people with SCI from early post-acute and long-term rehabilitation settings participated in nine focus groups. Five open-ended questions based on the ICF were used to initiate discussion about relevant Body Functions and Structures, Activities and Participation, Environmental and Personal Factors. The focus groups were audiotaped and the recording was transcribed verbatim. Qualitative analyses included the identification, extraction and coding of meaningful concepts from the transcribed dialogue. Concepts were coded according to established rules using ICF categories and were summarized semi-quantitatively. RESULTS: In the analysis, 1582 different concepts were identified. For coding one concept, an average of 1.4 ICF categories was used. This resulted in 2235 concept-ICF category links, 1068 in the early post-acute and 1167 in the long-term context, respectively. For the coding, 274 out of the 1454 categories contained in the ICF were used. CONCLUSION: The ICF coding showed the broad range of relevant aspects in the functioning experience of persons with SCI. Besides body limitations (especially paralysis and pain), the most relevant concepts covered mainly barriers in physical environment, assistive devices and social support, as well as the impact on everyday life regarding leisure and work. The resulting list of ICF categories can be helpful in facilitating person-centered clinical care and research.

ASAS/WHO ICF Core Sets for ankylosing spondylitis (AS): how to classify the impact of AS on functioning and health.

OBJECTIVE: To report on the results of a standardised consensus process agreeing on concepts typical and/or relevant when classifying functioning and health in patients with ankylosing spondylitis (AS) based on the International Classification of Functioning and Health (ICF). METHODS: Experts in AS from different professional and geographical backgrounds attended a consensus conference and were divided into three working groups. Rheumatologists were selected from members of the Assessment of SpondyloArthritis international Society (ASAS). Other health professionals were recommended by ASAS members. The aim was to compose three working groups with five to seven participants to allow everybody's contribution in the discussions. Experts selected ICF categories that were considered typical and/or relevant for AS during a standardised consensus process by integrating evidence from preceding studies in alternating working group and plenary discussions. A Comprehensive ICF Core Set was selected for the comprehensive classification of functioning and a Brief ICF Core Set for application in trials. RESULTS: The conference was attended by 19 experts from 12 countries. Eighty categories were included in the Comprehensive Core Set, which included 23 Body functions, 19 Body structures, 24 Activities and participation and 14 Environmental factors. Nineteen categories were selected for the Brief Core Set, which included 6 Body functions, 4 Body structures, 7 Activities and participation and 2 Environmental factors. CONCLUSION: The Comprehensive and Brief ICF Core Sets for AS are now available and aim to represent the external reference to define consequences of AS on functioning.

Functioning and disability in spinal cord injury from the consumer perspective: an international qualitative study using focus groups and the ICF.

STUDY DESIGN: Qualitative, multi-center study. OBJECTIVES: To examine the lived experiences of persons with spinal cord injury (SCI) in both the early post-acute and the long-term context using the International Classification of Functioning, Disability and Health (ICF) as a frame of reference. SETTING: International study sites representing the six World Health Organization world regions. METHODS: A qualitative study using focus groups methodology was conducted. Sample size was determined by saturation. The focus groups were digitally recorded and transcribed verbatim. The meaning condensation procedure was used for the data analysis. The resulting meaningful concepts were linked to ICF categories according to established linking rules. RESULTS: Forty-nine focus groups with 230 participants were performed. Saturation was reached in four out of the six world regions. A total of 3122 and 4423 relevant concepts were identified in the focus groups for the early post-acute and the long-term context, respectively, and linked to a total of 171 and 188 second-level categories. All chapters of the ICF components Body functions, Activities and participation and Environmental factors were represented by the linked ICF categories. In all, 36 and 113 concepts, respectively, are not classified by the ICF and 306 and 444, respectively, could be assigned to the ICF component Personal Factors, which is not yet classified. CONCLUSION: A broad range of the individual experiences of persons with SCI is covered by the ICF. A large number of experiences were related to Personal Factors.

Identification of problems in individuals with spinal cord injury from the health professional perspective using the ICF: a worldwide expert survey.

STUDY DESIGN: Worldwide Internet survey. OBJECTIVES: The specific aims of the study were (1) to identify problems of individuals with SCI in the early post-acute and the long-term context, respectively, addressed by health professionals and (2) to summarize these problems using the ICF. SETTING: International. METHODS: Physicians, nurses, physical therapists, occupational therapists, social workers and psychologists were asked for problems in the functioning and contextual factors of individuals with SCI using open-ended questions. All answers were translated ('linked') to the ICF based on established rules. Absolute and relative frequencies of the linked ICF categories were reported stratified by the context. RESULTS: Out of 243 selected experts, 144 (59.3%) named 7.650 different themes, of which 78.8% could be linked to ICF categories. In the early post-acute context, 30.7% of the 88 categories belonged to the component Body Functions, 14.8% to Body Structures, 30.7% to Activities and Participation and 23.9% to Environmental Factors. In all, 16 ICF categories were unique for the early post-acute context. In the long-term context, 27.2% of the 92 categories belonged to the component Body Functions, 13.0% to Body Structures, 35.9% to Activities and Participation and 23.9% to Environmental Factors. A total of 20 ICF categories were unique for the long-term context. CONCLUSION: Health professionals identified a large variety of functional problems reflecting the complexity of SCI. Unique aspects of functioning exist for the early post-acute and the long-term context, respectively. The ICF provided a comprehensive framework to integrate answers from different professional backgrounds and different world regions.

ICF Core Sets for individuals with spinal cord injury in the long-term context.

STUDY DESIGN: A formal decision-making and consensus process integrating evidence gathered from preparatory studies was followed. OBJECTIVES: The objective of the study was to report on the results of the consensus process to develop the first version of a Comprehensive International Classification of Functioning, Disability and Health (ICF) Core Set, and a Brief ICF Core Set for individuals with spinal cord injury (SCI) in the long-term context. SETTING: The consensus conference took place in Switzerland. Preparatory studies were performed worldwide. METHODS: Preparatory studies included an expert survey, a systematic literature review, a qualitative study and empirical data collection involving people with SCI. Relevant ICF categories were identified in a formal consensus process by international experts from different backgrounds. RESULTS: The preparatory studies identified a set of 595 ICF categories at the second, third or fourth level. A total of 34 experts from 31 countries attended the consensus conference (12 physicians, 6 physical therapists, 5 occupational therapists, 6 nurses, 3 psychologists and 2 social workers). Altogether, 168 second-, third- or fourth-level categories were included in the Comprehensive ICF Core with 44 categories from body functions, 19 from body structures, 64 from activities and participation and 41 from environmental factors. The Brief Core Set included a total of 33 second-level categories with 9 on body functions, 4 on body structures, 11 on activities and participation and 9 on environmental factors. CONCLUSION: A formal consensus process integrating evidence and expert opinion based on the ICF led to the definition of the ICF Core Sets for individuals with SCI in the long-term context. Further validation of this first version is needed.

ICF Core Sets for individuals with spinal cord injury in the early post-acute context.

STUDY DESIGN: A formal decision-making and consensus process integrating evidence gathered from preparatory studies was followed. OBJECTIVES: The aim of this study was to report on the results of the consensus process to develop the first version of a Comprehensive International Classification of Functioning, Disability and Health (ICF) Core Set and a Brief ICF Core Set for individuals with spinal cord injury (SCI) in the early post-acute context. SETTING: The consensus conference took place in Switzerland. Preparatory studies were performed worldwide. METHODS: Preparatory studies included an expert survey, a systematic literature review, a qualitative study and empirical data collection involving people with SCI. ICF categories were identified in a formal consensus process by international experts from different backgrounds. RESULTS: The preparatory studies identified a set of 531 ICF categories at the second, third and fourth levels. From 30 countries, 33 SCI experts attended the consensus conference (11 physicians, 6 physical therapists, 5 occupational therapists, 6 nurses, 3 psychologists and 2 social workers). Altogether 162 second-, third- or fourth-level categories were included in the Comprehensive ICF Core Sets with 63 categories from the component Body Functions, 14 from Body Structures, 53 from Activities and Participation and 32 from Environmental Factors. The Brief Core Set included a total of 25 second-level categories with 8 on Body Functions, 3 on Body Structures, 9 on Activities and Participation, and 5 on Environmental Factors. CONCLUSION: A formal consensus process-integrating evidence and expert opinion based on the ICF led to the ICF Core Sets for individuals with SCI in the early post-acute context. Further validation of this first version is needed.

Responsiveness of the International Classification of Functioning, Disability and Health (ICF) Core Set for rheumatoid arthritis.

BACKGROUND: The comprehensive International Classification of Functioning, Disability and Health (ICF) Core Set for rheumatoid arthritis (RA) is a selection of 96 categories from the ICF, representing relevant aspects in the functioning of patients with RA. OBJECTIVES: To study the responsiveness of the ICF Core Set for RA in rheumatological practice. METHODS: A total of 46 patients with RA (72% women, mean (SD) age 53.6 (12.6) years, disease duration 6.3 (8.0) years) were interviewed at baseline and again after 6 months treatment with a disease-modifying antirheumatic drug (DMARD), applying the ICF Core Set for RA with qualifiers for problems on a modified three-point scale (no problem, mild/moderate, severe/complete). Patient-reported outcomes included Modified Health Assessment Questionnaire (MHAQ) and Short-Form 36 (SF-36) health survey, and disease activity was calculated. Responsiveness was measured as change in qualifiers in ICF categories, and was also compared with change in patient-reported outcomes. RESULTS: After 6 months of DMARD treatment, improvement by at least one qualifier was seen in 20% of patients (averaged across all ICF categories), 71% experienced no change and 9% experienced worsening symptoms. Findings were similar across the different aspects of functioning. Mainly moderate effect sizes were seen for 6-month changes in the ICF Core Set for RA, especially in patients with improved health status, with similar effect size for disease activity. The components in the ICF Core Set for RA were only weakly associated with patient-reported outcomes and disease activity. CONCLUSIONS: The ICF Core Set for RA demonstrated moderate responsiveness in this real-life setting of patients where minor changes occurred during treatment with DMARDs.

Validation of the International Classification of Functioning, Disability and Health (ICF) core set for diabetes mellitus from the patient perspective using focus groups.

AIMS: The Comprehensive ICF Core Set for diabetes mellitus (DM) is a specific application of the International Classification of Functioning, Disability and Health (ICF) of the World Health Organization for clinical and research purposes involving the disorder. It represents the typical spectrum of functional problems in patients with DM. The objective of the study was to validate the Comprehensive ICF Core Set for DM from the perspective of patients. The specific aims were to explore the aspects of function and health important to patients with DM using focus group methodology and to examine to what extent these aspects are represented by the Comprehensive ICF Core Set for DM. METHODS: A qualitative study using focus group methodology was conducted. Sampling of patients followed the maximum variation strategy. Sample size was determined by saturation. The focus group discussions were digitally recorded and transcribed verbatim. The meaning condensation procedure was used for data analysis. The resulting meaningful concepts were linked to ICF categories according to established linking rules. RESULTS: Forty patients participated in eight focus groups. Seventy-five of the 85 ICF categories contained in the Comprehensive ICF Core Set for DM were identified by the patients. Forty-seven additional categories that are not covered by the Comprehensive ICF Core Set for DM were identified. CONCLUSIONS: The Comprehensive ICF Core Set for DM could be largely confirmed by the focus groups. Categories currently not covered by the Comprehensive ICF Core Set for DM should be investigated further.

Identification of similarities and differences in functioning in persons with rheumatoid arthritis and ankylosing spondylitis using the International Classification of Functioning, Disability and Health (ICF).

OBJECTIVE: The objective of this study is to identify similarities and differences in functioning in AS and RA using the ICF as the framework for the description of functioning. METHODS: The Comprehensive ICF Core Sets for RA and AS were compared qualitatively regarding their content. A comparison study of common second-level ICF categories from both ICF Core Sets collected in two different cross-sectional studies in the Netherlands was performed. Significant differences regarding the level of impairments, limitations or restrictions were analyzed within the Mann-Whitney U-Test. To study whether the common ICF categories have different meaning for the two populations the Rasch model for dichotomous response option was used. RESULTS: The Comprehensive ICF Core Set for AS includes 74 ICF categories in 19 chapters and the Comprehensive ICF Core Set for RA includes 96 ICF categories in 22 chapters. Interviews among 87 patients with AS and 143 patients with RA on 24 of the common ICF categories revealed significant differences regarding the extent of problems. DIF analyses reflect that the meaning of some ICF categories, such as 'd410 Changing basic body positions' is different in relation to functioning depending on the health condition. CONCLUSION: This study was the first to compare functioning in AS and RA based on the ICF. The results confirmed to a large extend the experiences well known from other studies and thereby showed that the ICF is useful to describe and compare functioning. Some aspects could be identified which are not easy to understand with existing evidence and need to be explained in the future.