Challenges and care strategies associated with the admission to nursing homes in Germany: a scoping review.

BACKGROUND: The admission to a nursing home is a critical life-event for affected persons as well as their families. Admission related processes are lacking adequate participation of older people and their families. To improve transitions to nursing homes, context- and country-specific knowledge about the current practice is needed. Hence, our aim was to summarize available evidence on challenges and care strategies associated with the admission to nursing homes in Germany. METHODS: We conducted a scoping review and searched eight major international and German-specific electronic databases for journal articles and grey literature published in German or English language since 1995. Further inclusion criteria were focus on challenges or care strategies in the context of nursing home admissions of older persons and comprehensive and replicable information on methods and results. Posters, only-abstract publications and articles dealing with mixed populations including younger adults were excluded. Challenges and care strategies were identified and analysed by structured content analysis using the TRANSCIT model. RESULTS: Twelve studies of 1,384 records were finally included. Among those, seven were qualitative studies, three quantitative observational studies and two mixed methods studies. As major challenges neglected participation of older people, psychosocial burden among family caregivers, inadequate professional cooperation and a lack of shared decision-making and evidence-based practice were identified. Identified care strategies included strengthening shared decision-making and evidence-based practice, improvement in professional cooperation, introduction of specialized transitional care staff and enabling participation for older people. CONCLUSION: Although the process of nursing home admission is considered challenging and tends to neglect the needs of older people, little research is available for the German health care system. The perspective of the older people seems to be underrepresented, as most of the studies focused on caregivers and health professionals. Reported care strategies addressed important challenges, however, these were not developed and evaluated in a comprehensive and systematic way. Future research is needed to examine perspectives of all the involved groups to gain a comprehensive picture of the needs and challenges. Interventions based on existing care strategies should be systematically developed and evaluated to provide the basis of adequate support for older persons and their informal caregivers.

Development of a clinical tool for rating the body function categories of the ICF generic-30/rehabilitation set in Japanese rehabilitation practice and examination of its interrater reliability.

BACKGROUND: The International Classification of Functioning, Disability, and Health (ICF) Generic-30 (Rehabilitation) Set is a tool used to assess the functioning of a clinical population in rehabilitation. The ICF Generic-30 consists of nine ICF categories from the component "body functions" and 21 from the component "activities and participation". This study aimed to develop a rating reference guide for the nine body function categories of the ICF Generic-30 Set using a predefined, structured process and to examine the interrater reliability of the ratings using the rating reference guide. METHODS: The development of the first version of the rating reference guide involved the following steps: (1) a trial of rating patients by several raters; (2) cognitive interviews with each rater to analyze the thought process involved in each rating; (3) the drafting of the rating reference guide by a multidisciplinary panel; and (4) a review by ICF specialists to confirm consistency with the ICF. Subsequently, we conducted a first field test to gain insight into the use of the guide in practice. The reference guide was modified based on the raters' feedback in the field test, and an inter-rater reliability test was conducted thereafter. Interrater agreement was evaluated using weighted kappa statistics with linear weights. RESULTS: The first version of the rating reference guide was successfully developed and tested. The weighted kappa coefficient in the field testing ranged from 0.25 to 0.92. The interrater reliability testing of the rating reference guide modified based on the field test results yielded an improved weighted kappa coefficient ranging from 0.53 to 0.78. Relative improvements in the weighted kappa coefficients were observed in seven out of the nine categories. Consequently, seven out of nine categories were found to have a weighted kappa coefficient of 0.61 or higher. CONCLUSIONS: In this study, we developed and modified a rating reference guide for the body function categories of the ICF Generic-30 Set. The interrater reliability test using the final version of the rating reference guide showed moderate to substantial interrater agreement, which encouraged the use of the ICF in rehabilitation practice.

Supporting the clinical use of the ICF in Japan - development of the Japanese version of the simple, intuitive descriptions for the ICF Generic-30 set, its operationalization through a rating reference guide, and interrater reliability study.

BACKGROUND: The World Health Organization developed the International Classification of Functioning, Disability, and Health (ICF) in 2001 and has been in the process of implementing it in clinics since then. Current international efforts to implement ICF in rehabilitation clinics include the implementation of ICF Core Sets and the development of simple, intuitive descriptions for the ICF Generic-30 Set (also called Rehabilitation Set). The present study was designed to operationalize these ICF tools for clinical practice in Japan. This work included 1) the development of the Japanese version of the simple, intuitive descriptions for the ICF Generic-30 Set, 2) the development of a rating reference guide for Activity and Participation categories, and 3) the examination of the interrater reliability of rating Activity and Participation categories. METHODS: The Japanese version of the simple, intuitive descriptions for the ICF Generic-30 Set was developed following the process employed to develop the Chinese and Italian versions. For further operationalization of this ICF Set in practice, a rating reference guide was developed. The development of the rating reference guide involved the following steps: 1) a trial of rating patients by several raters, 2) cognitive interviewing of the raters to analyse the thinking process involved in rating, 3) drafting of the rating reference guide, and 4) review by ICF specialists to confirm consistency with the original ICF concepts. After the rating reference guide was developed, interrater reliability of the rating with the reference guide was determined. Interrater reliability was examined using weighted kappa statistics with linear weight. RESULTS: Through the pre-defined process, the Japanese version of the simple, intuitive descriptions for 30 categories of the ICF Generic-30 Set and the rating reference guides for 21 Activity and Participation categories were successfully developed. The weighted kappa statistics ranged from 0.61 to 0.85, showing substantial to excellent agreement of the ratings between raters. CONCLUSIONS: The present study demonstrates that ICF categories can be translated into clinical practice. Collaboration between clinicians and researchers would further enhance the implementation of the ICF in Japan.

Correction: Examining the complexity of functioning in persons with spinal cord injury attending first rehabilitation in Switzerland using structural equation modelling.

An amendment to this paper has been published and can be accessed via a link at the top of the paper.

Examining the complexity of functioning in persons with spinal cord injury attending first rehabilitation in Switzerland using structural equation modelling.

STUDY DESIGN: Cross-sectional. OBJECTIVES: To examine the associations between activities, body structures and functions, and their relationship with aetiology, age and sex in persons with spinal cord injury (SCI) at discharge from first rehabilitation. SETTING: Swiss SCI Cohort Study (SwiSCI). METHODS: The study included 390 participants with newly acquired SCI and the International Classification of Functioning, Disability and Health (ICF) as conceptual frame of reference. Body structures were represented by injury level and severity; body functions by cardiovascular, pulmonary, skin, bowel and urinary functions and pain; mental functions by anxiety, depression, optimism and self-esteem; and activities by independence in performing activities of daily living (ADL). Using structural equation modelling (SEM), indirect effects of body structures and functions on independence in performing ADL through mental functions were tested for each mental function separately. For each structural model, fit was assessed using several indices and differences in aetiology, age and sex groups were explored. RESULTS: The structural model about optimism showed good fit in all indices; the models about anxiety, depression and self-esteem showed conflicting fit indices, respectively. Within all models, effects on independence in performing ADL were mainly direct. Pain showed significant (P < 0.05) indirect effects on independence in performing ADL within the depression, optimism and self-esteem models. The model about anxiety showed differences in aetiology groups. CONCLUSIONS: Using an ICF-based modelling approach, this study presents an attempt towards a more comprehensive understanding of functioning in first rehabilitation of persons with SCI, which might be fundamental for rehabilitation planning.

The influence and added value of a Standardized Assessment and Reporting System for functioning outcomes upon national rehabilitation quality reports.

OBJECTIVE: To demonstrate the influence and added value of a Standardized Assessment and Reporting System (StARS) upon the reporting of functioning outcomes for national rehabilitation quality reports. A StARS builds upon an ICF-based (International Classification of Functioning, Disability and Health) and interval-scaled common metric. DESIGN: Comparison of current ordinal-scaled Swiss national rehabilitation outcome reports including an expert-consensus-based transformation scale with StARS-based reports through descriptive statistical methods and content exploration of further development areas of the reports with relevant ICF Core Sets. SETTING: Swiss national public rehabilitation outcome quality reports on the clinic level. PARTICIPANTS: A total of 29 Swiss rehabilitation clinics provided their quality report datasets including 18 047 patients. INTERVENTIONS: Neurological or musculoskeletal rehabilitation. MAIN OUTCOME MEASURES: Functional Independence Measure™ or Extended Barthel Index. RESULTS: Outcomes reported with a StARS tended to be smaller but more precise than in the current ordinal-scaled reports, indicating an overestimation of achieved outcomes in the latter. The comparison of the common metric's content with ICF Core Sets suggests to include 'energy and drive functions' or 'maintaining a basic body position' to enhance the content of functioning as an indicator. CONCLUSIONS: A StARS supports the comparison of outcomes assessed with different measures on the same interval-scaled ICF-based common metric. Careful consideration is needed whether an ordinal-scaled or interval-scaled reporting system is applied as the magnitude and precision of reported outcomes is influenced. The StARS' ICF basis brings an added value by informing further development of functioning as a relevant indicator for national outcome quality reports in rehabilitation.

System-wide Clinical Assessment of Functioning Based on the International Classification of Functioning, Disability and Health in China: Interrater Reliability, Convergent, Known Group, and Predictive Validity of the ICF Generic-6.

OBJECTIVE: To validate the International Classification of Functioning, Disability and Health (ICF) Generic-6 in daily routine clinical practice in Mainland China. Specific objectives were to analyze (1) interrater reliability, (2) convergent validity, (3) known group validity, and (4) predictive validity of the ICF Generic-6. DESIGN: Multicenter prospective cohort study. SETTING: Fifty hospitals from 20 provinces of Mainland China. PARTICIPANTS: A total of 4510 patients from departments of rehabilitation, orthopedics, neurology, cardiology, pneumology, and cerebral surgery of the participating hospitals with different health conditions were included in this study. INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: The assessment was undertaken by nurses with ICF Generic-6 in combination with a numeric rating scale. Interrater reliability was evaluated with intraclass correlation coefficients (ICC). Convergent validity was evaluated with Spearman correlation coefficients between ICF Generic-6 and Medical Outcomes Short Form (SF)-12 items. Known group validity was examined by comparing discharge scores between different discharge destinations. Predictive validity was determined by using ICF Generic-6 baseline scores for estimating length of hospital stay with a loglogistic survival model with gamma shared frailty and cost of in-hospital treatment with a mixed effects generalized linear regression model of the gamma family. RESULTS: The interrater reliability of items and score of ICF Generic-6 was good with ICCs ranging from 0.67-0.87. ICF Generic-6 items were further correlated with respective SF-12 items. Discharge scores of patients differed significantly by discharge destination. The ICF Generic-6 admission score was a significant predictor of length of stay and treatment cost. CONCLUSIONS: The ICF Generic-6 administered in combination with a 0-10 numeric rating scale is a reliable and valid tool for the collection of minimal information on functioning across various clinical settings.

Overview of quality management models for inpatient healthcare settings. A scoping review.

PURPOSE: This scoping review aimed to generate an overview of existing quality management (QM) models for inpatient healthcare published in peer-reviewed literature. DATA SOURCES: Peer-reviewed publications published until June 2016 were retrieved from the databases Medline, PubMed, CINAHL and Cochrane Library using search terms related to QM and models. STUDY SELECTION: Publications mentioning a QM model for general application in healthcare or inpatient care in their title or abstract were included. Languages considered were: English, French, German, Italian and Spanish. DATA EXTRACTION: Data extraction was 3-fold. First, publication characteristics were summarized. Second, the frequency of each identified model was documented and the publications were divided into conceptual and implementation publications. Third, relevant QM models were identified and information regarding the model, including content and relationship with other models, was extracted. RESULTS OF DATA SYNTHESIS: Of 925 retrieved publications, 213 were included. The included publications reported on 64 different QM models that were suitable for or used in inpatient care. Seventeen models were identified as being relevant. The 17 models were then categorized into three different levels: conceptual quality improvement models, concrete application models and country specific adaptations. CONCLUSION: This scoping review provides an overview of 17 existing QM models for inpatient care and their relationships with each other. Various types of models with differing aspects and components exist. In searching for QM models, many different concepts like QM system, accreditation or methodologies appeared. For future investigation, concepts of interest should be clarified.

Content comparison of the Spinal Cord Injury Model System Database to the ICF Generic Sets and Core Sets for spinal cord injury.

STUDY DESIGN: Mapping of the National Spinal Cord Injury Model System (SCIMS) Database (NSCID) to the International Classification of Functioning, Disability and Health (ICF). OBJECTIVES: To link the content of the latest two versions of the NSCID to the ICF; more specifically (1) to compare the content of the current NSCID 2016-2021 version to its predecessor (NSCID 2011-2016) using the ICF as a neutral reference framework, and (2) to compare the content contained in the NSCID 2016-2021 version with relevant ICF Sets. SETTING: The forms of the NSCID 2016-2021 and 2011-2016 versions were linked to the ICF and contrasted. Comparability of the current version of the NSCID with the ICF Core Set for Spinal Cord Injury (SCI) in the post-acute and long-term context and the two generic ICF sets- ICF Generic-7 and ICF Generic-30 was then examined. METHODS: ICF Linking Rules and descriptive statistics. RESULTS: The current NSCID 2016-2021 version covers functioning as classified in the ICF with 8 ICF categories more comprehensively than its predecessor does. More than 50% of ICF categories contained in the two ICF Generic Sets were covered. The coverage of the brief ICF Core Sets for SCI by the NSCID 2016-2021 was more than 50%, but the coverage of the comprehensive core sets was low. Results showed the best coverage in the ICF component Activities and Participation. CONCLUSIONS: This study emphasizes how the ICF and its Sets can serve as a reference framework to foster comparability of existing data sets from both clinical practice and research.

Describing Functioning in People Living With Spinal Cord Injury in Switzerland: A Graphical Modeling Approach.

OBJECTIVE: To describe functioning in people living with spinal cord injuries (SCI) in Switzerland. DESIGN: Secondary analysis of cross-sectional survey data. SETTING: Community, Switzerland. PARTICIPANTS: Individuals (N=1549) 16 years of age or older with a history of traumatic or nontraumatic SCI and permanently residing in Switzerland. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Functioning was operationalized through 4 domains: (1) impairments in body functions; (2) impairments in mental functions; (3) independence in performing activities; and (4) performance problems in participation. RESULTS: Univariate analysis indicated a high prevalence of problems in 5 areas: (1) housework; (2) climbing stairs; (3) tiredness; (4) spasticity; and (5) chronic pain. Graphical modeling showed a strong association among the four domains of functioning. Moreover, we found that the differences in the dependence structures were significant between the paraplegia SCI population and the tetraplegia SCI population. CONCLUSIONS: This study is a first study in the epidemiology of functioning of people living with SCI in Switzerland. Using univariate and graphical modeling approaches, we proposed an empirical foundation for developing hypotheses on functioning in each domain and category that could inform health systems on people's health needs.

Improving quality of care through patient-reported outcome measures (PROMs): expert interviews using the NHS PROMs Programme and the Swedish quality registers for knee and hip arthroplasty as examples.

BACKGROUND: Patient reported outcome measures (PROMs) have been integrated in national quality registries or specific national monitoring initiatives to inform the improvement of quality of care on a national scale. However there are many unanswered questions, such as: how these systems are set up, whether they lead to improved quality of care, which stakeholders use the information once it is available. The aim of this study was to examine supporting and hindering factors relevant to integrating patient-reported outcome measures (PROMs) in selected health information systems (HIS) tailored toward improving quality of care across the entire health system. METHODS: First, a systematic search and review was conducted to outline previously identified factors relevant to the integration of PROMs in the selected HIS. A social network analysis was performed to identify networks of experts in these systems. Second, expert interviews were conducted to discuss and elaborate on the identified factors. Directive content analysis was applied using a HIS Evaluation Framework as the frame of reference. This framework is structured into four components: Organization, Human, Technology, and Net benefits. RESULTS: The literature review revealed 37 papers for the NHS PROMs Programme and 26 papers for the SHPR and SKAR: Five networks of researchers were identified for the NHS PROMs Programme and 1 for the SHPR and SKAR. Seven experts related to the NHS PROMs Programme and 3 experts related to the SKAR and SHPR participated in the study. The main themes which revealed in relation to Organization were Governance and Capacity building; to Human: Reporting and Stakeholder Engagement; to Technology: the Selection and Collection of PROMs and Data linkage. In relation to Net benefits, system-specific considerations are presented. CONCLUSION: Both examples succeeded in integrating PROMs into HIS on a national scale. The lack of an established standard on what change PROMs should be achieved by an intervention limits their usefulness for monitoring quality of care. Whether the PROMs data collected within these systems can be used in routine clinical practice is considered a challenge in both countries.

Administration of assessment instruments during the first rehabilitation of patients with spinal cord injury: a retrospective chart analysis.

STUDY DESIGN: Retrospective chart analysis. OBJECTIVES: To examine which professionals administered which assessment instruments in which patient in clinical practice during first rehabilitation after newly acquired spinal cord injury (SCI) and the differences in the frequencies of different assessments between patient groups. SETTING: Specialized SCI acute care and rehabilitation clinic. METHODS: Patients after SCI, aged 18 years and above, admitted for first rehabilitation between December 2014 and December 2015 were analyzed. Descriptive statistics of 54 selected assessments. p values based on the χ 2 test were calculated for assessments used in both paraplegic and tetraplegic patients. RESULTS: One hundred and nineteen patients were screened. Forty-one assessments were administered, of which 10 on average more than once per patient. The most frequently used assessments were Spinal Cord Independence Measure III (7.7 times per patient), Skin Assessment (3.6 times), and Manual Muscle Test (3.2 times for Lower Extremities; 2.5 times for Upper Extremities). The American Spinal Injury Association Impairment Scale was administered on average 1.9 times per patient. More variation in the number of assessments per patient was observed in patients with complete and incomplete lesions compared to patients with paraplegia and tetraplegia. CONCLUSION: Assessments covering neurological functioning, mobility, and self-care are used in clinical practice during first rehabilitation of patients with SCI, while others covering autonomic functioning, pain, participation, or quality of life are still missing. Based on these observations and national and international requirements, a meaningful standard for an assessment toolkit, applicable in general and in specific subgroups, needs to be defined and implemented.

The Impact of Missing Values and Single Imputation upon Rasch Analysis Outcomes: A Simulation Study.

Imputation becomes common practice through availability of easy-to-use algorithms and software. This study aims to determine if different imputation strategies are robust to the extent and type of missingness, local item dependencies (LID), differential item functioning (DIF), and misfit when doing a Rasch analysis. Four samples were simulated and represented a sample with good metric properties, a sample with LID, a sample with DIF, and a sample with LID and DIF. Missing values were generated with increasing proportion and were either missing at random or completely at random. Four imputation techniques were applied before Rasch analysis and deviation of the results and the quality of fit compared. Imputation strategies showed good performance with less than 15% of missingness. The analysis with missing values performed best in recovering statistical estimates. The best strategy, when doing a Rasch analysis, is the analysis with missing values. If for some reason imputation is necessary, we recommend using the expectation-maximization algorithm.

Toward the International Classification of Functioning, Disability and Health (ICF) Rehabilitation Set: A Minimal Generic Set of Domains for Rehabilitation as a Health Strategy.

OBJECTIVE: To develop a comprehensive set of the International Classification of Functioning, Disability and Health (ICF) categories as a minimal standard for reporting and assessing functioning and disability in clinical populations along the continuum of care. The specific aims were to specify the domains of functioning recommended for an ICF Rehabilitation Set and to identify a minimal set of environmental factors (EFs) to be used alongside the ICF Rehabilitation Set when describing disability across individuals and populations with various health conditions. DESIGN: Secondary analysis of existing data sets using regression methods (Random Forests and Group Lasso regression) and expert consultations. SETTING: Along the continuum of care, including acute, early postacute, and long-term and community rehabilitation settings. PARTICIPANTS: Persons (N=9863) with various health conditions participated in primary studies. The number of respondents for whom the dependent variable data were available and used in this analysis was 9264. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: For regression analyses, self-reported general health was used as a dependent variable. The ICF categories from the functioning component and the EF component were used as independent variables for the development of the ICF Rehabilitation Set and the minimal set of EFs, respectively. RESULTS: Thirty ICF categories to be complemented with 12 EFs were identified as relevant to the identified ICF sets. The ICF Rehabilitation Set constitutes of 9 ICF categories from the component body functions and 21 from the component activities and participation. The minimal set of EFs contains 12 categories spanning all chapters of the EF component of the ICF. CONCLUSIONS: The identified sets proposed serve as minimal generic sets of aspects of functioning in clinical populations for reporting data within and across heath conditions, time, clinical settings including rehabilitation, and countries. These sets present a reference framework for harmonizing existing information on disability across general and clinical populations.

Capturing patients' needs in casemix: a systematic literature review on the value of adding functioning information in reimbursement systems.

BACKGROUND: Contemporary casemix systems for health services need to ensure that payment rates adequately account for actual resource consumption based on patients' needs for services. It has been argued that functioning information, as one important determinant of health service provision and resource use, should be taken into account when developing casemix systems. However, there has to date been little systematic collation of the evidence on the extent to which the addition of functioning information into existing casemix systems adds value to those systems with regard to the predictive power and resource variation explained by the groupings of these systems. Thus, the objective of this research was to examine the value of adding functioning information into casemix systems with respect to the prediction of resource use as measured by costs and length of stay. METHODS: A systematic literature review was performed. Peer-reviewed studies, published before May 2014 were retrieved from CINAHL, EconLit, Embase, JSTOR, PubMed and Sociological Abstracts using keywords related to functioning ('Functioning', 'Functional status', 'Function*, 'ICF', 'International Classification of Functioning, Disability and Health', 'Activities of Daily Living' or 'ADL') and casemix systems ('Casemix', 'case mix', 'Diagnosis Related Groups', 'Function Related Groups', 'Resource Utilization Groups' or 'AN-SNAP'). In addition, a hand search of reference lists of included articles was conducted. Information about study aims, design, country, setting, methods, outcome variables, study results, and information regarding the authors' discussion of results, study limitations and implications was extracted. RESULTS: Ten included studies provided evidence demonstrating that adding functioning information into casemix systems improves predictive ability and fosters homogeneity in casemix groups with regard to costs and length of stay. Collection and integration of functioning information varied across studies. Results suggest that, in particular, DRG casemix systems can be improved in predicting resource use and capturing outcomes for frail elderly or severely functioning-impaired patients. CONCLUSION: Further exploration of the value of adding functioning information into casemix systems is one promising approach to improve casemix systems ability to adequately capture the differences in patient's needs for services and to better predict resource use.

Strengthening quality of care through standardized reporting based on the World Health Organization's reference classifications.

QUALITY ISSUE: Responding to person's health and related needs requires the availability of health information that reflects relevant aspects of a health condition and how this health condition impacts on a person's daily life. INITIAL ASSESSMENT: Health information is routinely collected at different time points by diverse professionals, in different settings for various purposes with varying methods. Consequently, health information is not always comparable, posing a challenge to the regular monitoring of quality. CHOICE OF SOLUTION: The World Health Organization's (WHO) International Classification of Diseases (ICD), International Classification of Functioning, Disability and Health (ICF), and International Classification of Health Interventions (ICHI; under development) are complementary and serve as meaningful reference classifications for comparing data on persons' health and related interventions across health systems. IMPLEMENTATION: We developed a systematic approach of translating routinely collected information into a standardized report based on the three WHO reference classifications and the Rehab-Cycle®. Subsequently, we have demonstrated its application using five random case records of individuals attending a rehabilitation program. EVALUATION: All identified concepts were able to be linked to WHO's reference classifications. The ICF served as a tool to standardize information on rehabilitation goals and their achievement. The ICHI served as the basis for reporting the interventions that were documented in the case records, including the intervention targets that were derived from the ICF codes. LESSONS LEARNED: Our experience shows that, it is possible to translate routinely collected information into standardized reports by linking existing narrative records with WHO's reference classifications.

The EULAR Outcome Measures Library: development and an example from a systematic review for systemic lupus erythematous instruments.

OBJECTIVES: Patient reported outcomes (PROs) are relevant in rheumatology. Variable accessibility and validity of commonly used PROs are obstacles to homogeneity in evidence synthesis. The objective of this project was to provide a comprehensive library of "validated PROs". METHODS: A launch meeting with rheumatologists, PROs methodological experts, and patients, was held to define the library's aims and scope, and basic requirements. To feed the library we performed systematic reviews on selected diseases and domains. Relevant information on PROs was collected using standardised data collection forms based on the COSMIN checklist. RESULTS: The EULAR Outcomes Measures Library (OML), whose aims are to provide and to advise on PROs on a user-friendly manner albeit based on scientific grounds, has been launched and made accessible to all. PROs currently included cover any domain and, are generic or specifically target to the following diseases: rheumatoid arthritis, osteoarthritis, spondyloarthritis, low back pain, systemic lupus erythematosus, gout, osteoporosis, juvenile idiopathic arthritis, and fibromyalgia. Up to 236 instruments (106 generic and 130 specific) have been identified, evaluated, and included. The systematic review for SLE, which yielded 10 specific instruments, is presented here as an example. The OML website includes, for each PRO, information on the construct being measured and the extent of validation, recommendations for use, and available versions; it also contains a glossary on common validation terms. CONCLUSIONS: The OML is an in progress library led by rheumatologists, related professionals and patients, that will help to better understand and apply PROs in rheumatic and musculoskeletal diseases.

Development of a new occupational balance-questionnaire: incorporating the perspectives of patients and healthy people in the design of a self-reported occupational balance outcome instrument.

BACKGROUND: Self-reported outcome instruments in health research have become increasingly important over the last decades. Occupational therapy interventions often focus on occupational balance. However, instruments to measure occupational balance are scarce. The aim of the study was therefore to develop a generic self-reported outcome instrument to assess occupational balance based on the experiences of patients and healthy people including an examination of its psychometric properties. METHODS: We conducted a qualitative analysis of the life stories of 90 people with and without chronic autoimmune diseases to identify components of occupational balance. Based on these components, the Occupational Balance-Questionnaire (OB-Quest) was developed. Construct validity and internal consistency of the OB-Quest were examined in quantitative data. We used Rasch analyses to determine overall fit of the items to the Rasch model, person separation index and potential differential item functioning. Dimensionality testing was conducted by the use of t-tests and Cronbach's alpha. RESULTS: The following components emerged from the qualitative analyses: challenging and relaxing activities, activities with acknowledgement by the individual and by the sociocultural context, impact of health condition on activities, involvement in stressful activities and fewer stressing activities, rest and sleep, variety of activities, adaptation of activities according to changed living conditions and activities intended to care for oneself and for others. Based on these, the seven items of the questionnaire (OB-Quest) were developed. 251 people (132 with rheumatoid arthritis, 43 with systematic lupus erythematous and 76 healthy) filled in the OB-Quest. Dimensionality testing indicated multidimensionality of the questionnaire (t = 0.58, and 1.66 after item reduction, non-significant). The item on the component rest and sleep showed differential item functioning (health condition and age). Person separation index was 0.51. Cronbach's alpha changed from 0.38 to 0.57 after deleting two items. CONCLUSIONS: This questionnaire includes new items addressing components of occupational balance meaningful to patients and healthy people which have not been measured so far. The reduction of two items of the OB-Quest showed improved internal consistency. The multidimensionality of the questionnaire indicates the need for a summary of several components into subscales.

Measuring functioning in people with fibromyalgia (FM) based on the international classification of functioning, disability and health (ICF)--a psychometric analysis.

OBJECTIVES: Instruments to assess functioning in patients with FM vary considerably in their content and are often symptom-specific. This study aimed to examine whether it is feasible to construct a psychometric-sound clinical instrument to measure functioning in FM based on the Brief ICF-Core-Set for chronic widespread pain (CWP). METHODS: Two hundred and fifty six people with FM completed the Brief ICF-Core-Set. The Rasch model was used for analysis. Once ordering of response options of ICF categories was ensured, the following properties were studied: fit of the ICF categories to the Rasch model, the targeting between ICF categories and a person's abilities, unidimensionality, and reliability. RESULTS: Six ICF categories were rescored due to disordered thresholds. Five ICF categories were removed due to high model-misfit and differential item functioning (DIF) for gender. Scores from 46 participants were excluded due to extreme scores. The ICF categories included display consistency with an underlying unidimensional construct, are free of DIF for age, disease duration and gender, display excellent overall reliability, and cover a range of functioning difficulties. CONCLUSIONS: This study illustrates that it is possible to measure functioning as a unidimensional construct based on selected ICF categories from the components body functions, as well as activities and participation of the Brief ICF-Core-Set for CWP in patients with FM.

Scale Banking for Patient-Reported Outcome Measures That Measure Functioning in Rheumatoid Arthritis: A Daily Activities Metric.

OBJECTIVE: Functioning is an important outcome for the management of rheumatoid arthritis (RA). Heterogeneity of respective patient-reported outcome measures (PROMs) challenges direct comparisons between their results. This study aimed to standardize reporting of such PROMs measuring functioning in RA to facilitate comparability. METHODS: Common-item nonequivalent group design with the Health Assessment Questionnaire (HAQ) as a common scale across data sets from various countries (including the UK, Turkey, and Germany) to establish a common metric was used. Other PROMs included are the physical function items of the Multidimensional HAQ (MDHAQ), the Disabilities of the Arm, Shoulder, and Hand questionnaire, the Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC), the World Health Organization Disability Assessment Schedule II (WHODAS II), the Medical Outcomes Study Short Form 36 (SF-36) health survey, and 4 short forms (20, 10, 6, and 4 physical function items) from the Patient-Reported Outcomes Measurement Information System. As the HAQ includes mobility, self-care, and domestic life items, this study focuses on these 3 domains. PROMs were described using standard error of measurement (SEM) and smallest detectable difference (SDD). A Rasch measurement model was used to create the common metric. RESULTS: The range of the SEM was 0.2 (MDHAQ) to 7.4 (SF-36 health survey physical functioning domain). The SDD revealed a range from 9.7% (WOMAC rating scale) to 33.5% (WHODAS physical functioning domain). PROMs co-calibration revealed fit to the Rasch measurement model. A transformation table was developed to allow exchange between PROM scores. CONCLUSION: Scores between the daily activity PROMs commonly used in RA can now be compared. Factors such as SEM and SDD help to determine the choice of a PROM in clinical practice and research.