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.

Latent Class Factor Analysis of the Functional Independence Measure confirmed four distinct dimensions in patients undergoing neurological rehabilitation.

AIM: The FIM instrument is broadly applied in varying rehabilitation services for outcome assessment. Thus, it is important to examine its applicability for services which may differ from the situations and patients for which it was originally developed. The aims of the present study were to examine 1) whether the four FIM dimensions "activities of daily living", "sphincter management", "mobility", and "executive function" can be retrieved by Latent Class Factor Analysis (LCFA); and 2) whether the four dimensions show floor effects in patients with acquired brain injuries undergoing intensive post-acute rehabilitation. METHODS: We analyzed the FIM data of 269 patients with acquired brain injuries undergoing intensive post-acute rehabilitation. To examine the dimensional structure of the FIM instrument we carried out LCFA. Cronbach's alpha was used to measure the internal consistency. We examined the distribution of the dimension scores to identify floor effects. RESULTS: LCFA confirmed the postulated four dimensions. The explained variance of items assigned to the four dimensions ranged from 46% to 89%. Cronbach's alpha coefficients of the four subscales ranged from 0.94 to 0.96. The percentage of patients scoring the minimum possible score in each of the retrieved dimensions ranged from 22.3% to 47.9%. CONCLUSION: When applying the FIM instrument to patients undergoing intensive neurological rehabilitation its dimensionality should be kept in mind. For some patients this outcome measure might not be discriminative enough due to floor effects.

Outcome parameters in spinal cord injury research: a systematic review using the International Classification of Functioning, Disability and Health (ICF) as a reference.

OBJECTIVES: This study is part of the development of an International Classification of Functioning, Disability and Health (ICF) Core Set for spinal cord injury (SCI). Its specific objectives were to identify outcome parameters reported in published studies on individuals with SCI in the early post-acute and chronic situation, and to identify and quantify the concepts of the reported parameters using the ICF as a reference. METHODS: Electronic searches of Medline, EMBASE, PsycINFO and CINAHL from 2001 to 2005 were carried out. All outcome parameters and their underlying concepts were retrieved from the included studies. These concepts were linked to categories of the ICF using standardized rules. RESULTS: From the 6681 abstracts retrieved, 2205 were randomly selected (33.0%) and 281 studies met the inclusion criteria (12.7%). A total number of 5217 concepts were retrieved from standardized and non-standardized measures, of which 4049 (77.6%) could be linked to 175 different ICF categories: 56 out of 114 Body Functions, 19 out of 56 Body Structures, 62 out of 118 Activities and Participation and 38 out of 74 Environmental Factors categories. Second-level categories reported in >20% of all studies were pain, remunerative employment, health services, systems and policies, school education and higher education. CONCLUSION: The ICF provides a valuable reference to identify and quantify the concepts of measures focusing on SCI in the early post-acute and chronic situation. The findings show a great diversity in the consequences of SCI and underscore the importance of social participation and environment for people with SCI.

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.

Identification of the most common problems in functioning of individuals with spinal cord injury using the International Classification of Functioning, Disability and Health.

STUDY DESIGN: Cross-sectional, multicenter study. OBJECTIVES: To identify the most common problems of individuals with spinal cord injury (SCI) in the early post-acute and the long-term context, respectively, using the International Classification of Functioning, Disability and Health (ICF) as a frame of reference. SETTING: International. METHODS: The functional problems of individuals with SCI were recorded using the 264 ICF categories on the second level of the classification. Prevalence of impairment was reported along with their 95% confidence intervals. Data were stratified by context. RESULTS: Sixteen study centers in 14 countries collected data of 489 individuals with SCI in the early post-acute context and 559 in the long-term context, respectively. Impairments in thirteen ICF categories assigned to Body functions and Body structures were more frequently reported in the long-term context, whereas limitations/restrictions in 34 ICF categories assigned to Activities and Participation were more frequently found in the early post-acute context. Eleven ICF categories from the component Environmental Factors were more frequently regarded as barriers, facilitators or both by individuals with SCI in the early post-acute context as compared with individuals with SCI in the long-term context. Only two environmental factors were more relevant for people with SCI in the long-term context than in the early post-acute context. CONCLUSION: The study identified a large variety of functional problems reflecting the complexity of SCI and indicated differences between the two contexts. The ICF has potential to provide a comprehensive framework for the description of functional health in individuals with SCI worldwide.

International Classification of Functioning, Disability and Health (ICF) Core Set for patients with acute arthritis.

OBJECTIVE: The aim of this consensus process was to construct a preliminary version of the ICF Core Set for acute inflammatory arthritis. METHODS: The development of the ICF Core Set involved a formal decision-making and consensus process, integrating evidence gathered from preliminary studies including focus groups of health professionals, a systematic review of the literature, and empiric data collection from patients. RESULTS: Thirty-three experts selected a total of 79 second-level categories for the Comprehensive Core Set and 40 second-level categories for the Brief Core Set. The largest number of categories was selected from the ICF component Activities and Participation (28 categories or 35%). Eighteen (23%) of the categories were selected from the component Body Functions, 13 (16%) from the component Body Structures, and 20 (25%) from the component Environmental Factors. CONCLUSION: The ICF Core Set for acute arthritis is a clinical framework designed to comprehensively assess patients in acute care hospitals and early post-acute rehabilitation facilities. This preliminary version of the ICF Core Set will be further tested through empiric studies in German-speaking countries and internationally.

Developing core sets for persons with spinal cord injuries based on the International Classification of Functioning, Disability and Health as a way to specify functioning.

OBJECTIVE: The objective of this paper is to outline the proposed development process for the ICF Core Sets for Spinal Cord Injury (SCI) and to invite clinical and consumer experts to actively participate in this process. ICF Core Sets are selections of categories of the International Classification of Functioning, Disability and Health (ICF) that are relevant to persons with a specific condition or in a specific setting. METHOD: The project is a cooperation between the ICF Research Branch of the World Health Organization (WHO) Collaboration Centre of the Family of International Classifications (DIMDI, Germany), the Classification, Assessment and Terminology (CAT) team and the Disability and Rehabilitation (DAR) team at WHO, the International Spinal Cord Society (ISCoS) and International Society for Physical and Rehabilitation Medicine (ISPRM) and partner institutions across the world. The project will consist of four worldwide studies to be conducted from 2006 to 2007 with a proposed ICF Core Set Consensus Conference to be held in 2007. ICF categories relevant for SCI are to be identified by means of (I) an empirical study, (II) a systematic review of outcomes and measures used in SCI research (III) an expert survey and (IV) focus groups and semistructured interviews with persons with SCI. Consensus about items that have to be part of a Comprehensive and of a Brief ICF Core Set for SCI will be reached in a final ICF Core Set Consensus Conference. Subsequent field testing will be necessary to validate this first version of ICF Core Sets for SCI. INVITATION FOR PARTICIPATION: The development of ICF Core Sets is an inclusive and open process. Anyone who wishes to actively participate in this process is invited to contact the project coordinator (Monika.Scheuringer@med.uni-muenchen.de or http://www.icf-research-branch.org/research/spinalcord-injuries.htm). Individuals, institutions and associations can be formally associated as partners of the project.

Identification of health problems in patients with acute inflammatory arthritis, using the International Classification of Functioning, Disability and Health (ICF).

OBJECTIVES: To identify the most common health problems experienced by patients with acute inflammatory arthritis using the International Classification of Functioning, Disability and Health (ICF), and to provide empirical data for the development of an ICF Core Set for acute inflammatory arthritis. METHODS: Cross-sectional survey of patients with acute inflammatory arthritis of two or more joints requiring admission to an acute hospital. The second level categories of the ICF were used to collect information on patients' health problems. Relative frequencies of impairments, limitations and restrictions in the study population were reported for the ICF components Body Functions, Body Structures, and Activities and Participations. For the component Environmental Factors absolute and relative frequencies of perceived barriers or facilitators were reported. RESULTS: In total, 130 patients were included in the survey. The mean age of the population was 59.9 years (median age 63.0 years), 75% of the patients were female. Most had rheumatoid arthritis (57%) or early inflammatory polyarthritis (22%). Fifty-four second-level ICF categories had a prevalence of 30% or more: 3 (8%) belonged to the component Body Structures and 10 (13%) to the component Body Functions. Most categories were identified in the components Activities and Participation (19; 23%) and Environmental Factors (22; 56%). CONCLUSION: Patients with acute inflammatory arthritis can be well described by ICF categories and components. This study is the first step towards the development of an ICF Core Set for patients with acute inflammatory arthritis.

[Inpatient health care utilization for musculoskeletal disorders and injuries: a forecast study for Germany up to 2010]. / Stationäre Inanspruchnahme bei muskuloskelettalen Erkrankungen und Verletzungen: Vorausberechnung für Deutschland bis zum Jahr 2010.

BACKGROUND: The study is part of the project "Orthopaedics 2010 -- evaluation of the demand for the orthopaedic work force in the year 2010", initiated by the professional association of orthopaedists (BVO). The aim is to estimate the prospective number of orthopaedists for the sufficient medical care of musculoskeletal disorders and injuries. METHODS: The main data source was the official statistics of discharge rates from 1994 to 1999 and the German population forecasts from 1994 to 2010 of the Federal Office of Statistics, Wiesbaden, Germany. An univariate forecasting analysis was done using the Granger and Newbold method. RESULTS: All diagnostic categories of musculoskeletal disorders (arthropathies, dorsopathies, rheumatism, osteopathies) will increase up to four-fold from 1994 to 2010. Three of the four diagnostic categories of injuries (dislocations, sprains and strains; contusion; injuries and open wounds) will decrease by up to 15 percent, the diagnostic category of fractures will increase (10 percent). The stratified analyses by gender and age reveal that women and persons over 65 years old are more often affected by musculoskeletal disorders and injuries. CONCLUSIONS: Both demographic changes and changes in the utilization of inpatient care will lead to a substantial increase of hospital cases up to 2010. The presented results should be looked at together with their confidence limits as interval estimations. In addition, there are independent external factors such as the new prospective payment system (G-DRGs) that will influence the hospital admission rates as well.