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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.
Institutional Ethnography
(2022)
Rehabilitation aims to enable people with disabilities or who are likely to experience disability to participate fully in their daily lives through a set of interprofessional and multimodal measures. Yet, rehabilitation services are embedded within social and healthcare systems that shape what individuals, who are active within these systems, can and may have to do. This chapter introduces Institutional Ethnography, a critical method of inquiry, which aims to explicate what people actually do and experience and how their doings and experiences become organized within textually mediated social relations. For rehabilitation practice and research, Institutional Ethnography is a powerful method to delineate which concepts are dominating institutional practices and to explicate whether these concepts are comprehensive enough to serve not only institutional purposes but account for and respond to the realities of people’s daily lives.
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.
The objective of this study was to catalog items from instruments used to measure functioning, disability, and contextual factors in patients with low back pain treated with manual medicine (manipulation and mobilization) according to the International Classification of Functioning, Disability and Health. This catalog will be used to inform the development of an International Classification of Functioning, Disability and Health-based assessment schedule for low back pain patients treated with manual medicine. In this scoping review, we systematically searched MEDLINE, Embase, PsycINFO, and CINAHL. We identified instruments (questionnaires, clinical tests, single questions) used to measure functioning, disability, and contextual factors, extracted the relevant items, and then linked these items to the International Classification of Functioning, Disability and Health. We included 95 articles and identified 1510 meaningful concepts. All but 70 items were linked to the International Classification of Functioning, Disability and Health. Of the concepts linked to the International Classification of Functioning, Disability and Health, body functions accounted for 34.7%, body structures accounted for 0%, activities and participation accounted for 41%, environmental factors accounted for 3.6%, and personal factors accounted for 16%. Most items used to measure functioning and disability in low back pain patient treated with manual medicine focus on body functions, as well as activities and participation. The lack of measures that address environmental factors warrants further investigation.
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.
Objectives: To identify classes of functioning trajectories in individuals with spinal cord injury (SCI) undergoing initial rehabilitation after injury and to examine potential predictors of class membership to inform clinical planning of the rehabilitation process.
Design: Longitudinal analysis of the individual's rehabilitation stay using data from the Inception Cohort of the Swiss Spinal Cord Injury Cohort Study (SwiSCI).
Setting: Initial rehabilitation in specialized centers in Switzerland.
Participants: Individuals with newly acquired SCI (N=748; mean age, 54.66±18.38y) who completed initial rehabilitation between May 2013 and September 2019. The cohort was primarily composed of men (67.51%), persons with paraplegia (56.15%), incomplete injuries (67.51%), and traumatic etiologies (55.48%).
Interventions: Not applicable.
Main Outcome Measures: Functioning was operationalized with the interval-based sum score of the Spinal Cord Independence Measure version III (SCIM III). For each individual, the SCIM III sum score was assessed at up to 4 time points during rehabilitation stay. The corresponding time of assessment was recorded by the difference in days between the SCIM III assessment and admission to the rehabilitation program.
Results: Latent process mixed model analysis revealed 4 classes of functioning trajectories within the present sample. Class-specific predicted mean functioning trajectories describe stable high functioning (n=307; 41.04%), early functioning improvement (n=39; 5.21%), moderate functioning improvement (n=287; 38.37%), and slow functioning improvement (n=115; 15.37%), respectively. Out of 12 tested factors, multinomial logistic regression showed that age, injury level, injury severity, and ventilator assistance were robust predictors that could distinguish between identified classes of functioning trajectories in the present sample.
Conclusions: The current study establishes a foundation for future research on the course of functioning of individuals with SCI in initial rehabilitation by identifying classes of functioning trajectories. This supports the development of specifically tailored rehabilitation programs and prediction models, which can be integrated into clinical rehabilitation planning.
Objective: The study aimed to explore existing prediction models of functioning in spinal cord injury (SCI).
Study design and setting: The databases PubMed, EBSCOhost CINAHL Complete, and IEEE Xplore were searched for relevant literature. The search strategy included published search filters for prediction model and impact studies, index terms and keywords for SCI, and relevant outcome measures able to assess functioning as reflected in the International Classification of Functioning, Disability and Health (ICF). The search was completed in October 2020.
Results: We identified seven prediction model studies reporting twelve prediction models of functioning. The identified prediction models were mainly envisioned to be used for rehabilitation planning, however, also other possible applications were stated. The method predominantly used was regression analysis and the investigated predictors covered mainly the ICF components of body functions and activities and participation, next to characteristics of the health condition and health interventions.
Conclusion: Findings suggest that the development of prediction models of functioning for use in clinical practice remains to be fully exploited. By providing a comprehensive overview of what has been done, this review informs future research on prediction models of functioning in SCI and contributes to an efficient use of research evidence.
Study design
Case study.
Objective
To present a framework for developing an International Classification of Functioning, Disability and Health (ICF)-based documentation system in spinal cord injury (SCI)-specific rehabilitation.
Setting
Data collection took place at Maharaj Hospital, Thailand. The preparatory studies and analysis were performed at Swiss Paraplegic Research, Switzerland.
Methods
Data collected from interviews and health records of four SCI cases across the continuum of care (acute, post-acute, early and late long term) were linked to ICF categories using established ICF linking rules. The resulting categories were compared with selected ICF sets (ICF Generic-30, ICF core sets for SCI and multiple sclerosis) to determine the extent of coverage. Furthermore, the context of applicable services was described systematically.
Results
Less than half of the ICF categories in the defined ICF sets were covered by clinical assessment tools. Low correspondence was found predominantly in acute and late long-term phase. Least well covered were categories of activities and participations and environmental factors. The correspondence of categories increased when considering the additional ICF categories identified from patient interviews. The description of rehabilitation services provided in each case classified according to the dimensions of service provider, funding, and service delivery.
Conclusions
There is a need to promote the systematic and standardized assessment of functioning among health professionals working in the field of SCI in developing countries. This study describes basic steps toward developing a standardized ICF-based system for assessing and reporting functioning outcomes in SCI rehabilitation and across the continuum of care.
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.
Impact of spasticity on functioning in spinal cord injury: an application of graphical modelling
(2020)
Abstract
Objective: To identify the impact of moderate-to-severe spasticity on functioning in people living with spinal cord injury.
Design: Secondary analysis of cross-sectional survey data using graphical modelling.
Subjects: Individuals (n = 1,436) with spinal cord injury aged over 16 years with reported spasticity problems.
Methods: Spasticity and 13 other impairments in body functions were assessed using the spinal cord injury Secondary Conditions Scale. Impairments in mental functions were assessed using the Mental Health subscale of the 36-item Short Form (SF-36). Independence in activities was measured with the Spinal Cord Injury Independence Measure Self-Report. Restrictions in participation were measured with the Utrecht Scale for Evaluation Rehabilitation – Participation.
Results: Fifty-one percent of participants reported moderate-to-severe spasticity. Graphical modelling showed that Chronic pain, Contractures, Tiredness, Doing housework, and Respiratory functions were associated with spasticity and were the top 5 potential targets for interventions to improve the experience of spasticity. The associations and intervention targets were dependent on the level and completeness of the lesion.
Conclusion: This is the first application of graphical modelling in studying spasticity in people living with spinal cord injury. The results can be used as a basis for studies aiming to optimize rehabilitation interventions in people with moderate-to-severe spasticity.
Lay Abstract
Spasticity is one of the most common complications of spinal cord injury. It influences limitations in functioning. Comprehensive evidence on the impact of spasticity on all domains of functioning may be beneficial to optimize rehabilitation interventions aimed at reducing the effects of spasticity. This is the first application of graphical modelling to study and visualize the impact of moderate-to-severe spasticity on functioning in people living with spinal cord injury. The results show that chronic pain, contractures, tiredness, doing housework, and respiratory functions were the functioning domains associated with spasticity. These are therefore the top 5 potential targets for interventions to improve the experience of spasticity. In addition, the level and completeness of lesions should be considered when studying spasticity in relation to all domains of functioning. These results should be used as a basis for studies aiming to optimize rehabilitation interventions in people with moderate-to-severe spasticity.
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.
Making one's own choices is an important part of leading a fulfilling life within society. However, people with IDs often face significant obstacles when making their own decisions. Article 12 (Equal recognition before the law) of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) aims to ensure firstly that people with IDs and others with compromised capacity are nonetheless recognized as legal individuals, and secondly that assistance is provided in the form of supported decision‐making in order to exercise this resulting legal capacity. It is unclear whether current national legislation in any country satisfies these requirements in practice. This study utilizes institutional ethnography to reveal how decision‐making is coordinated in practice for people with mild to moderate IDs living in supported residential environments in England, and to determine whether these processes are compliant with Article 12 of the CRPD. Data collection was based on observations, semi‐structured interviews, and documentary analysis, involving 29 participants including people with mild to moderate IDs. The results point to the complexity of supported decision‐making and identify three main categories of decision‐making: spontaneous decisions, mid‐term decisions, and strategic decisions. The data also show that people with mild to moderate IDs are able to exercise their legal capacity through support decision‐making in their everyday life. Immediate and informal supported decision‐making exists in daily practice for people with mild to moderate IDs living in supported residential environments. Although there are structures in place for implementing supported decision‐making, various barriers persist that limit the overall efficacy and consistency of the realization of supported decision‐making, for example, multiple use of mental capacity assessments. Such practices move away from the supported decision‐making model toward substituted decision‐making.
Background
Modification of the home environment, together with rehabilitative interventions, is important for maximizing the level of functioning after an individual with disability undergoes rehabilitation in the hospital.
Objectives
We developed a simple screening scale – the home environment checklist (HEC) – to identify any mismatch between an individual's abilities and their home environment to help clinicians monitor the appropriateness of the home environment to which individuals with disability will be discharged. We also examined the psychometric properties of the HEC.
Methods
The HEC was developed by a multidisciplinary panel of rehabilitation experts using information routinely collected in rehabilitation clinics before discharge. The reliability of the checklist was assessed in 60 individuals undergoing rehabilitation. The inter-rater agreement and internal consistency of the scale were assessed by weighted kappa statistics and Cronbach's alpha, respectively. Rasch analysis was performed with 244 rehabilitation individuals to evaluate the internal construct validity, and the known-groups validity was confirmed by a comparison of the daily activity levels of 30 individuals with disabilities under rehabilitation to the HEC score.
Results
The HEC was developed as a simple, 10-item checklist. The weighted kappa statistics ranged from 0.73 to 0.93, indicating excellent inter-rater reliability. Cronbach's alpha was 0.92, indicating high internal consistency. Rasch analysis with a testlet approach on 3 subscales demonstrated a good fit with the Rasch model (χ2 = 13.2, P = 0.153), and the demonstrated unidimensionality and absence of differential item functioning supported the internal construct validity of the HEC. HEC scores were significantly different (P < .01) among individuals with disability and 3 levels of restrictions in their activities (no limitation, home-bound, and bed-bound), which demonstrates the known-groups validity of the HEC.
Conclusions
The HEC has good reliability and validity, which supports its utility in rehabilitation clinics.
Living with spinal cord injury in Mongolia: A qualitative study on perceived environmental barriers
(2020)
Context: Environmental factors play a key role in the lives of individuals with a spinal cord injury (SCI). This study identifies environmental barriers and their impacts on daily lives as perceived by individuals living with SCI in Mongolia.
Design: A qualitative study with semi-structured interviews was conducted. A topic guide for the interviews was structured around the components of the International Classification of Functioning, Disability, and Health.
Setting: Urban and rural areas of Mongolia.
Participants: A purposive sample of 16 persons with traumatic SCI.
Interventions: Not applicable.
Outcome Measures: Not applicable.
Results: Seven categories of environmental barriers were mentioned, such as poor access to the physical environment, absence of wheelchair-friendly transportation, negative societal attitudes, inadequate health and rehabilitation services, lack of access to assistive devices and medicines, limited financial resources for healthcare, and inaccurate categorization of disabilities in laws. These barriers were claimed to have an impact on physical and psychological health, limit activities, and restrict participation in almost all areas of life.
Conclusion: This study contributes to the identification of targets for interventions aimed at improving the lived experience of persons with SCI in a low-resource context. The findings reveal that while the Mongolian government already has laws and policies in place to improve access to the physical environment, transportation, assistive devices and employment, much more has to be done in terms of enforcement. Specialized SCI care and rehabilitation services are highly demanded in Mongolia.
Objective: Functioning is an important outcome for rheumatoid arthritis (RA) management. 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 Non-Equivalent Groups Design (NEAT) with the Health Assessment Questionnaire (HAQ) as a common scale across data sets from various countries (incl. UK, Turkey and Germany) to establish a common metric. Other PROMs included are the Physical Function items of the Multidimensional Health Assessment Questionnaire (MDHAQ), Disabilities of Arm, Shoulder and Hand (DASH), Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC), World Health Organization Disability Assessment Schedule Version 2.0 (WHODAS 2.0), and four short forms (20, 10, 6, and 4 physical function items) from the Patient-Reported Outcomes Measurement Information System (PROMIS). As the HAQ includes mobility, self-care and domestic life items, this study focuses on these three domains. PROMs were described using Standard Error of Measurement (SEM) and Smallest Detectable Difference (SDD). Rasch Measurement model was used to create the common metric.
Results: Range of SEM is 0.2 (MDHAQ) to 7.4 (SF36-PF). SDD revealed a range from 9.7 % (WOMAC-RAT) to 33.5 % (WHODAS-PF). PROMs co-calibration revealed fit to the Rasch measurement model. A transformation table was developed to allow exchange between PROMs scores.
Discussion: Scores between the Daily Activity PROMs commonly used in RA can now be compared. Factors such as SEM and SDD help determine choice of PROM in clinical practice and research.
Keywords: Common metric; DASH; Disability and Health; HAQ; International Classification of Functioning; Multidimensional HAQ; PROMIS-SF; Rasch measurement model; Scale banking; WHODAS 2.0; WOMAC.
Abstract
Objectives: To develop a common reference metric of functioning, incorporating generic and health condition-specific disability instruments, and to test whether this reference metric is invariant across 2 health conditions.
Design: Psychometric study using secondary data analysis. Firstly, the International Classification of Functioning, Disability and Health (ICF) Linking Rules were used to examine the concept equivalence between the World Health Organization Disability Assessment Schedule (WHODAS 2.0), Health Assessment Questionnaire (HAQ), and Functional Independence Measure (FIMTM). Secondly, a scale-bank was developed using a reference metric approach to test-equating, based on the Rasch measurement model.
Participants: Secondary analysis was performed on data from 487 people; 61.4% with rheumatoid arthritis and 38.6% with stroke.
Results: Three sub-domains of the WHODAS 2.0 and all items of the HAQ and FIMTM motor mapped on to the ICF chapters d4 Mobility, d5 Self-care and d6 Domestic life. Test-equating of these scales resulted in good model fit, indicating that a scale bank and associated reference metric across these 3 instruments could be created.
Conclusion: This study provides a transformation table to enable direct comparisons among instruments measuring physical functioning commonly used in rheumatoid arthritis (HAQ) and stroke (FIMTM motor scale), as well as in people with disability in general (WHODAS 2.0).
Keywords: FIM; Functional Independence Measure; HAQ; Health Assessment Questionnaire; WHODAS 2.0; World Health Organization Disability Assessment Schedule; outcome assessment; rheumatoid arthritis; stroke; psychometrics.
Objective: Many different assessment tools are used to assess functioning in rehabilitation; this limits the comparability and aggregation of respective data. The aim of this study was to outline the development of an International Classification of Functioning, Disability and Health (ICF)-based interval-scaled common metric for 2 assessment tools assessing activities of daily living: the Functional Independence Measure (FIMTM) and the Extended Barthel Index (EBI), used in Swiss national rehabilitation quality reports.
Methods: The conceptual equivalence of the 2 tools was assessed through their linking to the ICF. The Rasch measurement model was then applied to create a common metric including FIMTM and EBI.
Subjects: Secondary analysis of a sample of 265 neurological patients from 5 Swiss clinics.
Results: ICF linking found conceptual coherency of the tools. An interval-scaled common metric, including FIMTM and EBI, could be established, given fit to the Rasch model in the related analyses.
Conclusion: The ICF-based and interval-scaled common metric enables comparison of patients and clinics functioning outcomes when different activities of daily living tools are used. The common metric can be included in a Standardized Assessment and Reporting System for functioning information in order to enable data aggregation and comparability.
Keywords: Barthel Index; Functional Independence Measure; Rasch Measurement Model; activities of daily living; outcome assessment (healthcare); psychometrics; quality in healthcare; rehabilitation.
The objective of this study was to catalogue items from instruments used to measure functioning, disability, and contextual factors in patients with low back pain (LBP) treated with manual medicine (manipulation and mobilization) according to the International Classification of Functioning, Disability and Health (ICF). This catalogue will be used to inform the development of an ICF-based assessment schedule for LBP patients treated with manual medicine. In this scoping review we systematically searched MEDLINE, Embase, PsycINFO and CINAHL. We identified instruments (questionnaires, clinical tests, single questions) used to measure functioning, disability and contextual factors, extracted the relevant items and then linked these items to the ICF. We included 95 articles and identified 1510 meaningful concepts. All but 70 items were linked to the ICF. Of the concepts linked to the ICF, body functions accounted for 34.7%, body structures accounted for 0%, activities and participation accounted for 41%, environmental factors accounted for 3.6%, and personal factors accounted for 16%. Most items used to measure functioning and disability in LBP patient treated with manual medicine focus on body functions, and activities and participation. The lack of measures that address environmental factors warrants further investigation.
Objective: Functioning is an important outcome for rheumatoid arthritis (RA) management. 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 Non-Equivalent Groups Design (NEAT) with the Health Assessment Questionnaire (HAQ) as a common scale across data sets from various countries (incl. UK, Turkey and Germany) to establish a common metric. Other PROMs included are the Physical Function items of the Multidimensional Health Assessment Questionnaire (MDHAQ), Disabilities of Arm, Shoulder and Hand (DASH), Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC), World Health Organization Disability Assessment Schedule Version 2.0 (WHODAS 2.0), and four short forms (20, 10, 6, and 4 physical function items) from the Patient-Reported Outcomes Measurement Information System (PROMIS). As the HAQ includes mobility, self-care and domestic life items, this study focuses on these three domains. PROMs were described using Standard Error of Measurement (SEM) and Smallest Detectable Difference (SDD). Rasch Measurement model was used to create the common metric.
Results: Range of SEM is 0.2 (MDHAQ) to 7.4 (SF36-PF). SDD revealed a range from 9.7 % (WOMAC-RAT) to 33.5 % (WHODAS-PF). PROMs co-calibration revealed fit to the Rasch measurement model. A transformation table was developed to allow exchange between PROMs scores.
Discussion: Scores between the Daily Activity PROMs commonly used in RA can now be compared. Factors such as SEM and SDD help determine choice of PROM in clinical practice and research.
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 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.
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.
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.
The International Classification of Functioning, Disability and Health (ICF) Generic- 30 Set (previously referred to as Rehabilitation Set) is a minimal set of ICF categories for reporting and assessing functioning and disability in clinical populations with different health conditions along the continuum of care. Recently, the Italian Society of Physical and Rehabilitation Medicine (SIMFER) developed an Italian modification of the simple and intuitive descriptions (SID) of these categories. This study was the first one to implement the use of the SID in practice.1)
To implement the use of the ICF in clinical practice and research among Italian Residents in PRM. 2) To verify if the SID made the application of ICF Generic 30 Set more user-friendly than the original descriptions. 3) To examine the prevalence of functioning problems of patients accessing Rehabilitation Services to serve as reference for the development of an ICF-based clinical data collection tool.Multicenter cross-sectional study.
Italian Physical Medicine and Rehabilitation (PRM) outpatient rehabilitation services. Patients referring to Italian PRM outpatient rehabilitation services and Italian Residents in PRM.Each School of Specialization involved, randomly, received the ICF Generic-30 Set with the original descriptions or with the SID.
Residents collected over a 4-month period (April-July 2016) patients data related to the ICF Generic-30 Set categories. Moreover, the residents self- assessed their difficulty in using the ICF Generic-30 Set with the original descriptions or with the SID, through a Numeric Rating Scale (NRS).Ninety-three residents collected functioning data of 864 patients (mean aged 57.7±19.3) with ICF Generic-30 Set: 304 with the original descriptions and 560 with SID. The difficulty in using the ICF Generic-30 Set with SID was rated as lower than using the original descriptions (NRS = 2.8±2.5 vs 3.5±3.1; p<0.001).
The most common disease was the back pain (9.6%) and the most common altered ICF categories were b280 (76.3%) and b710 (72.9%).This multicenter cross-sectional study shown that the ICF Generic-30 Set is a valuable instrument for reporting and assessing functioning and disability in clinical populations with different health conditions and along the continuum of care and that SID facilitate the understanding of the ICF categories and therefore their use in clinical practice.
This National survey, improving the knowledge of ICF among Italian PRM residents, represents an important step towards the system-wide implementation of ICF in the healthcare system.
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.
Background: The Extended Barthel Index (EBI), consisting of the original Barthel Index plus 6 cognitive items, provides a tool to monitor patients’ outcomes in rehabilitation. Whether the EBI provides a unidimensional metric, thus can be reported as a valid sum-score, remains to be examined.
Objective: To examine whether the EBI can be reported as unidimensional interval-scaled metric for neurological and musculoskeletal rehabilitation.
Methods: Rasch analysis of a calibration sample of 800 cases from neurological or musculoskeletal rehabilitation in 2016 in Switzerland.
Results: In the baseline analysis no fit to the Rasch Model was achieved. When accommodating local dependencies with a testlet approach satisfactory fit to the Rasch Model was achieved, and an interval scale transformation table was created.
Conclusion: The results support the reporting of adapted EBI total scores for both rehabilitation groups by applying the interval scaled transformation table presented in this study.
Background
Limitations in upper limb functioning are common in Musculoskeletal disorders and the Disabilities of the Arm, Shoulder and Hand scale (DASH) has gained widespread use in this context. However, various concerns have been raised about its construct validity and so this study seeks to examine this and other psychometric aspects of both the DASH and QuickDASH from a modern test theory perspective.
Methods
Participants in the study were eligible if they had a confirmed diagnosis of Rheumatoid Arthritis (RA). They were mailed a questionnaire booklet which included the DASH. Construct validity was examined by fit to the Rasch measurement model. The degree of precision of both the DASH and QuickDASH were considered through their Standard Error of Measurement (SEM).
Results
Three hundred and thirty-seven subjects with confirmed RA took part, with a mean age of 62.0 years (SD12.1); 73.6% (n = 252) were female. The median standardized score on the DASH was 33 (IQR 17.5–55.0). Significant misfit of the DASH and QuickDASH was observed but, after accommodating local dependency among items in a two-testlet solution, satisfactory fit was obtained, supporting the unidimensionality of the total sets and the sufficiency of the raw (ordinal or standardized) scores.
Conclusion
Having accommodated local response dependency in the DASH and QuickDASH item sets, their total scores are shown to be valid, given they satisfy the Rasch model assumptions. The Rasch transformation should be used whenever all items are used to calculate a change score, or to apply parametric statistics within an RA population.
Significance and innovations
Most previous modern psychometric analyses of both the DASH and QuickDASH have failed to fully address the effect of a breach of the local independence assumption upon construct validity.
Accommodating this problem by creating ‘super items’ or testlets, removes this effect and shows that both versions of the scale are valid and unidimensional, as applied with a bi-factor equivalent solution to an RA population.
The Standard Error of Measurement of a scale can be biased by failing to take into account the local dependency in the data which inflates reliability and thus making the SEM appear better (i.e. smaller) than the true value without bias.
Abstract
Objective: Since the 1990s the Functional Independence Measure (FIM™) was believed to measure 2 different constructs, represented by its motor and cognitive subscales. The practice of reporting FIM™ total scores, together with recent developments in the understanding of the influence of locally dependent items on fit to the Rasch model, raises the question of whether the FIM™ 18-item version can be reported as a unidimensional interval-scaled metric.
Design: Rasch analysis of the FIM™ using testlet approaches to accommodate local response dependency.
Patients: A calibration sample containing 946 cases of data from 11,103 patients undergoing neurological or musculoskeletal rehabilitation in Switzerland in 2016.
Results: Baseline analysis and the traditional testlet approach showed no fit with the Rasch model. When items were grouped into 2 testlets, fit to the Rasch model was achieved, indicating unidimensionality across all 18 items. A transformation table to convert FIM™ raw ordinal scores to the corresponding Rasch interval scaled values was created.
Conclusion: This study provides evidence that FIM™ total scores represent a unidimensional set of items, supporting their use in clinical practice and outcome reporting when applying the respective transformation table. This provides a basis for standardized reporting of functioning.
Lay Abstract
The aim of this study was to look in detail at the FIM™, an assessment tool often used for patients undergoing rehabilitation. Some users report the FIM™ as 2 scores: one related to motor tasks, the other to cognitive tasks; others recommend reporting it as a single score including both motor and cognitive tasks. This study explored whether it is statistically meaningful to sum all the points into a single FIM™ total score. The results support the current practice of summing the points into a single total score for patients undergoing musculo-skeletal and neurological rehabilitation. The results also allowed an interval scale to be derived from the FIM™, enabling a broad range of calculations to be made using the FIM™ score, such as calculating the change in FIM™ outcomes from the time a patient is admitted to a rehabilitation clinic until their discharge.
Background: The International Classification of Functioning, Disability and Health is the international standard for describing and monitoring functioning. While the categories, the units of the classification, were not designed with measurement in mind, the hierarchical structure of the classification lends itself to the possibility of summating categories into some higher order domain. Focusing on the chapters of d4 Mobility, d5 Self-Care and d6 Domestic Life, this study seeks to ascertain if qualifiers rating of categories (0-No problem to 4-Complete problem) within those chapters can be summated, and whether such derived measurement is consistent with estimates obtained from well-known instruments which purport to measure the same constructs.
Methods: The current study applies secondary analysis to data previously collected in the context of validating Core Sets for stroke, rheumatoid arthritis, and osteoarthritis. Data included qualifier-based ratings of the categories in the Core Sets, and the physical functioning sub-scale of the Short-Form 36, and the World Health Organization Disability Assessment Schedule 2.0. To examine qualifier-comparator scale item agreement Kappa statistics were used. To identify whether appropriate gradients of the comparator scales were observed across qualifier levels, an Independent Sample Median Test of the ordinal scores was deployed. To investigate the internal validity of the summated ICF categories, the Rasch model was applied.
Results: Data from 2,927 subjects from Europe, Australasia, Middle East and South America were available for analysis; 36.3% had experienced a stroke, 35.8% osteoarthritis, and 27.9% had rheumatoid arthritis. The items from the Short-Form 36 could not match directly the qualifier categories as the former had only 3 response options. The Kappa between World Health Organization Disability Assessment Schedule 2.0 items and categories was low. For all qualifiers, a significant (<0.001) overall gradient was observed across the comparator scales. Only in few of the World Health Organization Disability Assessment Schedule 2.0 items could no discrete level be detected. The aggregation of the qualifiers at the Chapter and higher order levels mostly revealed fit to the Rasch model. Almost all ICF qualifiers showed ordered thresholds suggesting that the current structure and response options of the qualifiers worked as intended.
Conclusions: The findings of this study provide supporting evidence for the use of the professionally rated categories and associated qualifiers to measure functioning.
Implication for Rehabilitation
- This study provides evidence that functioning data can be collected directly with the International Classification of Functioning, Disability and Health (ICF) by using the ICF categories as items and the ICF qualifiers as rating scale.
- The findings of this study show the aggregated ratings of ICF categories from the chapters d4 Mobility, d5 Self-care, and d6 Domestic life capture a broader spectrum of the construct than the corresponding summated items from the SF36-Physical Function sub-scale and the corresponding items of the World Health Organization Disability Assessment Schedule 2.0.
- This study illustrates the potential of building quantitative measurement by aggregating ICF categories and their qualifier ratings into meaningful domains.
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.
Purpose: To illustrate how routinely written narrative admission and discharge reports of a rehabilitation program for eight youths with chronic neurological health conditions can be transformed to the International Classification of Functioning, Disability and Health.
Methods: First, a qualitative content analysis was conducted by building meaningful units with text segments assigned of the reports to the five elements of the Rehab-Cycle®: goal; assessment; assignment; intervention; evaluation. Second, the meaningful units were then linked to the ICF using the refined ICF Linking Rules.
Results: With the first step of transformation, the emphasis of the narrative reports changed to a process oriented interdisciplinary layout, revealing three thematic blocks of goals: mobility, self-care, mental, and social functions.
The linked 95 unique ICF codes could be grouped in clinically meaningful goal-centered ICF codes. Between the two independent linkers, the agreement rate was improved after complementing the rules with additional agreements.
Conclusions: The ICF Linking Rules can be used to compile standardized health information from narrative reports if prior structured. The process requires time and expertise. To implement the ICF into common practice, the findings provide the starting point for reporting rehabilitation that builds upon existing practice and adheres to international standards.
Implications for Rehabilitation
This study provides evidence that routinely collected health information from rehabilitation practice can be transformed to the International Classification of Functioning, Disability and Health by using the “ICF Linking Rules”, however, this requires time and expertise.
The Rehab-Cycle®, including assessments, assignments, goal setting, interventions and goal evaluation, serves as feasible framework for structuring this rehabilitation program and ensures that the complexity of local practice is appropriately reflected.
The refined “ICF Linking Rules” lead to a standardized transformation process of narrative text and thus a higher quality with increased transparency.
As a next step, the resulting format of goal codes supplemented by goal-clarifying codes could be validated to strengthen the implementation of the International Classification of Functioning, Disability and Health into rehabilitation routine by respecting the variety of clinical practice.
Background: Existing instruments measuring participation may vary with respect to various aspects. This study aimed to examine the comparability of existing instruments measuring participation based on the International Classification of Functioning, Disability and Health (ICF) by considering aspects of content, the perspective adopted and the categorization of response options.
Methods: A systematic literature review was conducted to identify instruments that have been commonly used to measure participation. Concepts of identified instruments were then linked to the ICF following the refined ICF Linking Rules. Aspects of content, perspective adopted and categorization of response options were documented.
Results: Out of 315 instruments identified in the full-text screening, 41 instruments were included. Concepts of six instruments were linked entirely to the ICF component Activities and Participation; of 10 instruments still 80% of their concepts. A descriptive perspective was adopted in most items across instruments (75%), mostly in combination with an intensity rating. An appraisal perspective was found in 18% and questions from a need or dependency perspective were least frequent (7%).
Conclusion: Accounting for aspects of content, perspective and categorization of responses in the linking of instruments to the ICF provides detailed information for the comparison of instruments and guidance on narrowing down the choices of suitable instruments from a content point of view.
Implications for Rehabilitation
For clinicians and researchers who need to identify a specific instrument for a given purpose, the findings of this review can serve as a screening tool for instruments measuring participation in terms of the following:
• Their content covered based on the ICF.
• The perspective adopted in the instrument (e.g., descriptive, need/dependency or appraisal).
• The categorization of their response options (e.g., intensity or frequency).
Purpose
The content of and methods for collecting health information often vary across settings and challenge the comparability of health information across time, individuals or populations. The International Classification of Functioning, Disability and Health (ICF) contains an exhaustive set of categories of information which constitutes a unified and consistent language of human functioning suitable as a reference for comparing health information.
Methods and results In two earlier papers, we have proposed rules for linking existing health information to the ICF. Further refinements to these existing ICF Linking Rules are presented in this paper to enhance the transparency of the linking process. The refinements involve preparing information for linking, perspectives from which information is collected and the categorization of response options. Issues regarding the linking of information not covered or unspecified within the ICF are also revisited in this paper.
Conclusion:
The ICF Linking Rules are valuable for enhancing comparability of health information to ensure that information is available in a consistent manner to serve as a foundation for evidence-based decision-making across all levels of health systems. The refinements presented in this paper enhance transparency in, and ultimately reliability of the process of, linking health information to the ICF.
Implications for Rehabilitation
The International Classification of Functioning, Disability and Health (ICF) constitutes a unified and consistent language of human functioning suitable as a reference for comparing health information.
Comparability of information is essential to ensure that the widest range of information is available in a consistent manner for any decision-maker at all levels of the health system.
The refined ICF Linking Rules presented in this article outline the method to establish comparability of health information based on the ICF.
Functioning information constitutes a relevant component for determining patients’ service needs and respective resource use. Diagnosis-Related Group (DRG) systems can be optimized by integrating functioning information.
First steps toward accounting for functioning information in the German DRG (G-DRG) system have been made; yet, there is no systematic integration of functioning information. The G-DRG system is part of the health system; it is embedded in and as such dependent on various stakeholders and vested interests.
This study explores the stakeholder’s perspective on integrating functioning information in the G-DRG system. A qualitative interview study was conducted with national stakeholders in 4 groups of the G-DRG system (health policy, administration, development, and consultations).
Interviews were analyzed using inductive thematic analysis. In total, 14 interviews were conducted (4 administration and 10 consultation group). Three main themes were identified: (1) functioning information in the G-DRG system: opportunities and obstacles, (2) general aspects concerning optimizing G-DRG systems by integrating additional information, and (3) ideas and requirements on how to proceed.
The study offers insights into the opportunities and obstacles of integrating functioning information in the G-DRG system. The relevance of functioning information was evident. However, the value of functioning information for the G-DRG system was seen critically. Integrating functioning information alone does not seem to be sufficient and a systems approach is needed.
Objective Specifying the content in electronic health records (EHRs) through standardized headings based on international reference classifications will facilitate their semantic interoperability. The objective of this study was to specify potential chapter headings for EHRs aligned with the World Health Organization's (WHO) International Classification of Functioning, Disability, and Health (ICF) based on the perspectives of people living with chronic health conditions, carers, and professionals.
Methods A multistage process was established including (1) a patient workshop, (2) an online survey of both patients and carers, and (3) an online consultation with patient and professional bodies. The ICF served as a starting point. Based on the first stage, a first draft of the headings was developed and further refined based on the feedback at each stage. We examined in a fourth step whether items from existing assessment tools support the operationalization of the identified headings. Therefore, we used the WHO Disability Assessment Schedule 2.0 (WHODAS2.0), a patient-reported instrument, and interRAI, a clinician-administered instrument.
Results The first workshop was attended by eight people, the survey was completed by 250 persons, and the online consultation received detailed feedback by 18 professional bodies. This study resulted in 16 potential chapter headings for EHRs which capture aspects related to the body, such as emotions, motivation, sleep, and memory or thoughts, to being involved in social life, such as mobility, social activities, and finances, as well as to the care process, such as understanding of health issues and treatment or care priorities and goals. When using the WHODAS2.0 and interRAI together, they capture all except one of the proposed headings.
Conclusion The identified headings provide a high level structure for the standardized recording, use, and sharing of information. Once implemented, these headings have the potential to facilitate the delivery of personalized care planning for patients with long-term health problems.
Objective: To examine the use of the term ‘metric’ in health and social sciences’ literature, focusing on the interval scale implication of the term in Modern Test Theory (MTT).
Materials and methods: A systematic search and review on MTT studies including ‘metric’ or ‘interval scale’ was performed in the health and social sciences literature. The search was restricted to 2001–2005 and 2011–2015. A Text Mining algorithm was employed to operationalize the eligibility criteria and to explore the uses of ‘metric’. The paradigm of each included article (Rasch Measurement Theory (RMT), Item Response Theory (IRT) or both), as well as its type (Theoretical, Methodological, Teaching, Application, Miscellaneous) were determined. An inductive thematic analysis on the first three types was performed.
Results: 70.6% of the 1337 included articles were allocated to RMT, and 68.4% were application papers. Among the number of uses of ‘metric’, it was predominantly a synonym of ‘scale’; as adjective, it referred to measurement or quantification. Three incompatible themes ‘only RMT/all MTT/no MTT models can provide interval measures’ were identified, but ‘interval scale’ was considerably more mentioned in RMT than in IRT.
Conclusion: ‘Metric’ is used in many different ways, and there is no consensus on which MTT metric has interval scale properties. Nevertheless, when using the term ‘metric’, the authors should specify the level of the metric being used (ordinal, ordered, interval, ratio), and justify why according to them the metric is at that level.
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.
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.
The Impact of Missing Values and Single Imputation upon Rasch Analysis Outcomes: A Simulation Study
(2018)
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.
Objectives: To examine metric properties and responsiveness of the International Classification of Functioning, Disability and Health (ICF) Generic Set when used in routine clinical practice to assess functioning.
Design: Prospective multicentre study.
Setting: 50 hospitals from 20 provinces of Mainland China.
Participants: 4510 adult inpatients admitted to the departments of Pulmonology, Cardiology, Neurology, Orthopaedics, Cerebral Surgery or Rehabilitation Medicine.
Main outcome measures: The ICF Generic Set (ICF Generic 6 Set) applied with an 11-point numeric rating scale (0-no problem to 10-complete problem) was fit to the Partial Credit Model (PCM) to create an interval score of functioning.
Results: PCM assumptions were found to be fulfilled after accounting for Differential Item Functioning. With an average improvement by 7.86 points of the metric ICF Generic 6 score (95% CI 7.53 to 8.19), the ICF Generic 6 Set proved sensitive to change (Cohen’s f2=0.41). Ceiling and floor effects on detecting change in functioning were cancelled or reduced by using the metric score.
Conclusion: The ICF Generic 6 Set can be used for the assessment of functioning in routine clinical practice and an interval score can be derived which is sensitive to change.
Background: Current health systems are increasingly challenged to meet the needs of a growing number of patients living with chronic and often multiple health conditions. The primary outcome of care, it is argued, is not merely curing disease but also optimizing functioning over a person’s life span. According to the World Health Organization, functioning can serve as foundation for a comprehensive picture of health and augment the biomedical perspective with a broader and more comprehensive picture of health as it plays out in people’s lives. The crucial importance of information about patient’s functioning for a well-performing health system, however, has yet to be sufficiently appreciated.
Methods: This paper argues that functioning information is fundamental in all components of health systems and enhances the capacity of health systems to optimize patients’ health and health-related needs.
Results and conclusion: Beyond making sense of biomedical disease patterns, health systems can profit from using functioning information to improve interprofessional collaboration and achieve cross-cutting disease treatment outcomes.
- Implications for rehabilitation
- Functioning is a key health outcome for rehabilitation within health systems.
- Information on restoring, maintaining, and optimizing human functioning can strengthen health system response to patients’ health and rehabilitative needs.
- Functioning information guides health systems to achieve cross-cutting health outcomes that respond to the needs of the growing number of individuals living with chronic and multiple health conditions.
- Accounting for individuals functioning helps to overcome fragmentation of care and to improve interprofessional collaboration across settings
Background
The International Classification of Functioning, Disability and Health (ICF) can serve as reference for standardized documentation of health in clinical practice.
Purpose
This study aims to bridge the gap between the ICF and occupational therapy specific concepts, represented by occupational therapy models and their derived assessments.
Method
Occupational therapy assessments in relation to their models were systematically linked to the ICF, and a compatibility analysis was conducted. To strengthen reliability of the linkings, feedback from the respective assessment hosts was obtained.
Findings
Linking tables were developed for the Assessment of Motor and Process Skills, the Canadian Occupational Performance Measure, and the Model of Human Occupation Screening Tool. Similarities and differences between the ICF and the three assessments and their associated models show how they differ from and complement each other.
Implications
The findings of this study lay the foundation for standardized documentation in occupational therapy and enhance the practicability of the ICF.
BACKGROUND: In clinical practice and research a variety of clinical data collection tools are used to collect information on people’s functioning for clinical practice and research and national health information systems. Reporting on ICF-based common metrics enables standardized documentation of functioning information in national health information systems. The objective of this methodological note on applying the ICF in rehabilitation is to demonstrate how to report functioning information collected with a data collection tool on ICF-based common metrics. We first specify the requirements for the standardized reporting of functioning information. Secondly, we introduce the methods needed for transforming functioning data to ICF-based common metrics. Finally, we provide an example.
METHODS: The requirements for standardized reporting are as follows: 1) having a common conceptual framework to enable content comparability between any health information; and 2) a measurement framework so that scores between two or more clinical data collection tools can be directly compared. The methods needed to achieve these requirements are the ICF Linking Rules and the Rasch measurement model. Using data collected incorporating the 36-item Short Form Health Survey (SF-36), the World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0), and the Stroke Impact Scale 3.0 (SIS 3.0), the application of the standardized reporting based on common metrics is demonstrated.
RESULTS: A subset of items from the three tools linked to common chapters of the ICF (d4 Mobility, d5 Self-care and d6 Domestic life), were entered as “super items” into the Rasch model. Good fit was achieved with no residual local dependency and a unidimensional metric. A transformation table allows for comparison between scales, and between a scale and the reporting common metric.
CONCLUSIONS: Being able to report functioning information collected with commonly used clinical data collection tools with ICF-based common metrics enables clinicians and researchers to continue using their tools while still being able to compare and aggregate the information within and across tools.
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.
Background: The International Classification of Functioning, Disability and Health (ICF) is the World Health Organization’s standard for describing health and health-related states. Examples of how the ICF has been used in Electronic Health Records (EHRs) have not been systematically summarized and described yet.
Objectives: To provide a systematic review of peer-reviewed literature about the ICF’s use in EHRs, including related challenges and benefits.
Methods: Peer-reviewed literature, published between January 2001 and July 2015 was retrieved from Medline®, CINAHL®, Scopus®, and ProQuest® Social Sciences using search terms related to ICF and EHR concepts. Publications were categorized according to three groups: Requirement specification, development and implementation. Information extraction was conducted according to a qualitative content analysis method, deductively informed by the evaluation framework for Health Information Systems: Human, Organization and Technology-fit (HOT-fit).
Results: Of 325 retrieved articles, 17 publications were included; 4 were categorized as requirement specification, 7 as development, and 6 as implementation publications. Information regarding the HOT-fit evaluation framework was summarized. Main benefits of using the ICF in EHRs were its unique comprehensive perspective on health and its interdisciplinary focus.
Main challenges included the fact that the ICF is not structured as a formal terminology as well as the need for a reduced number of ICF codes for more feasible and practical use.
Conclusion: Different approaches and technical solutions exist for integrating the ICF in EHRs, such as combining the ICF with other existing standards for EHR or selecting ICF codes with natural language processing.
Though the use of the ICF in EHRs is beneficial as this review revealed, the ICF could profit from further improvements such as formalizing the knowledge representation in the ICF to support and enhance interoperability.
In this methodological note on applying the ICF in rehabilitation, we introduce suitable tools that allow us to document comprehensively and systematically the lived experience of health to guide clinical practice, the management of services, evidence-informed policy and scientific inquiry.
The objective of this methodological note is to present the currently available tools with respect to four questions: 1) what ICF domains to document; 2) what perspective to take; 3) what data collection tools to apply; and 4) which approach to use for reporting. The application of these tools is illustrated using the Swiss Spinal Cord Injury (SwiSCI) Cohort Study.
Existing ICF Sets provide a practical approach for identifying the domains to document. One can document from the perspective of biological health, lived health, and appraised health. For identifying suitable data collection tools, either existing tools can be linked to the ICF or available ICF-based data collection tools can be used.
For reporting, an interval scale metric is suggested. The four step approach presented provides users with a logical sequence to follow when planning the documentation of functioning using the ICF as a health information reference system in practice and research.
Introduction: Two widely used outcome measures to assess functioning in neurological rehabilitation are the Functional Independence Measure (FIM™) and the Barthel Index.
The current study aims to establish the equivalence of the total score of the FIM™ motor scale and the Barthel Index through the application of the International Classification of Functioning, Disability and Health, and Rasch measurement theory.
Methods: Secondary analysis of a large sample of patients with stroke, spinal cord injury, and multiple sclerosis, undergoing rehabilitation was conducted. All patients were assessed at the same time on both the FIM™ and the Barthel Index. The International Classification of Functioning, Disability and Health Linking Rules were used to establish conceptual coherency between the 2 scales, and the Rasch measurement model to establish an exchange of the total scores.
Results: Using the FIM™ motor scale, items from both scales linked to the International Classification of Functioning, Disability and Health d4 Mobility or d5 Self-care chapters. Their co-calibration satisfied the assumptions of the Rasch model for each of 3 diagnostic groups. A ceiling effect was observed for the Barthel Index when contrasted against the FIM™ motor scale.
Conclusion: Having a Rasch interval metric to transform scores between the FIM™ motor scale and Barthel Index is valuable for monitoring functioning, meta-analysis, quality audits and hospital benchmarking.
As part of international efforts to develop and implement national models including the specification of ICF-based clinical data collection tools, the Italian rehabilitation community initiated a project to develop simple, intuitive descriptions of the ICF Rehabilitation Set, highlighting the core concept of each category in user-friendly language.
This paper outlines the Italian experience in developing simple, intuitive descriptions of the ICF Rehabilitation Set as an ICF-based clinical data collection tool for Italy.Consensus process.Expert conference.
Multidisciplinary group of rehabilitation professionals.The first of a two-stage consensus process involved developing an initial proposal for simple, intuitive descriptions of each ICF Rehabilitation Set category based on descriptions generated in a similar process in China.
Stage two involved a consensus conference. Divided into three working groups, participants discussed and voted (vote A) whether the initially proposed descriptions of each ICF Rehabilitation Set category was simple and intuitive enough for use in daily practice.
Afterwards the categories with descriptions considered ambiguous i.e. not simple and intuitive enough, were divided among the working groups, who were asked to propose a new description for the allocated categories. These proposals were then voted (vote B) on in a plenary session.
The last step of the consensus conference required each working group to develop a new proposal for each and the same categories with descriptions still considered ambiguous.
Participants then voted (final vote) for which of the three proposed descriptions they preferred.Nineteen clinicians from diverse rehabilitation disciplines from various regions of Italy participated in the consensus process. Three ICF categories already achieved consensus in vote A, while 20 ICF categories were accepted in vote B.
The remaining 7 categories were decided in the final vote.The findings were discussed in light of current efforts toward developing strategies for ICF implementation, specifically for the application of an ICF-based clinical data collection tool, not only for Italy but also for the rest of Europe.
Promising as minimal standards for monitoring the impact of interventions and for standardized reporting of functioning as a relevant outcome in rehabilitation.
Clinical assessment schedule (CLAS) is a core part of the ICF-based implementation of functioning reporting across health conditions and along the continuum of care.
The Physical and Rehabilitation Medicine Section and Board of the European Union of Medical Specialists (UEMS PRM) workshop held in January 2016 aimed to develop and specify a CLAS within the context of rehabilitation services.
UEMS PRM Workshop in Nottwil, Switzerland, January 2016.PRM physicians representatives from 12 European countries, as well as Israel and Japan, mostly delegates of UEMS PRM Section and Board, and experts with other rehabilitation professional backgrounds.Participants were divided into 6 working groups and asked to specify what functioning aspects would be essential to document using the available ICF sets for the identified rehabilitation services contained in the newly developed service classification (ICSO-R): acute, post-acute and long-term rehabilitation services.
The 7 ICF Generic and 23 Rehabilitation Set categories were confirmed as well as specific health condition categories for acute rehabilitation services (mobile team), for postacute rehabilitation services (general outpatient rehabilitation, musculoskeletal and neurological rehabilitation, as well as specialized SCI rehabilitation), and for long-term rehabilitation services (day clinic and rehabilitation provided in the community). While general principles of the CLAS were defined, the need to align the CLAS for a specific service, as well as across services along the continuum of care was highlighted.
All groups deliberated on this topic; however, no conclusive statement was presented yet.The groups recognized a need for a systematic effort to identify data collection tools currently used.CLASs will serve in the future to ensure that functioning information is systematically and consistently collected across services, and thus respond also to various global reports and initiatives which stress the need for improving data collection on people's functioning.
The International Spinal Cord Injury (InSCI) community survey has been developed to collect internationally comparable data on the lived experience of persons with spinal cord injury (SCI) in all 6 WHO regions.
The InSCI survey provides a crucial first step to generate evidence on functioning, health maintenance, and subjective well-being in persons with SCI globally.
A major challenge in setting up the InSCI community survey was to develop a data model and questionnaire that comprehensively captures what matters to people and, at the same time, is feasible and parsimonious in terms of participant’s burden.
This paper outlines the components of the InSCI data model and presents the question selection to operationalize the data model along the 4 guiding principles of efficiency, feasibility, comparability, and truth and discrimination.
The data model consists of 6 components operationalized with 125 questions including functioning (n = 28 body functions and structures; n = 42 activities and participation), contextual factors (n = 26 environmental; n = 19 personal factors), lesion characteristics (n = 2), and appraisal of health and well-being (n = 8).
The InSCI questionnaire presents an efficient and feasible solution with satisfying comparability to other populations; however, its validity and reliability still needs to be confirmed.
Growing evidence shows interrelations of psychological factors, neurological and immunological processes. Therefore, constructs like a balance of activities, the so called “occupational balance”, could also have biological correlates. The aim of this study was to investigate potential associations between occupational balance, functioning, cytokines and C-reactive protein (CRP) in patients suffering from a chronic inflammatory disease like rheumatoid arthritis (RA) and healthy people. Moreover, we wanted to explore potential differences in gender and employment status.
A descriptive study in patients with RA and healthy people was conducted using the Occupational Balance-Questionnaire (OB-Quest) and the Short-Form 36 Health Survey (SF-36). Serum levels of cytokines, such as interleukin 6 (IL-6) and 8 (IL-8), interferon alpha (INFα), tumour necrosis factor alpha (TNFα), rheumatoid factor (RF) and of CRP were measured. Descriptive statistics, as well as Mann-Whitney U tests and Spearmen's rank correlation coefficients (rs) were calculated.
One-hundred-thirty-two patients with RA and 76 healthy people participated. Occupational balance was associated with functioning, cytokines and CRP. The strongest associations were identified in the unemployed healthy-people sample with cytokines and CRP being within the normal range. For example, the OB-Quest item challenging activities was associated with IL-8 (rs = − 0.63, p = 0.04) and the SF-36 sub-scale bodily pain was associated with IFNα (rs = − 0.69, p = 0.02). The items rest and sleep (rs = − 0.71, p = 0.01) and variety of different activities (rs = − 0.74, p < 0.01) correlated with the SF-36 sub-scale social functioning. Employed and unemployed people differed in their age and CRP levels. Additionally, gender differences were found in two OB-Quest items in that fewer women were able to adapt their activities to changing living conditions and fewer men were overstressed. In conclusion, we found preliminary biological evidence for the link between occupation and health in that the concepts encompassed in the construct of occupational balance were associated with functioning, cytokines and CRP.
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.
Objective: Cohort studies are an appropriate method for the collection of population-based longitudinal data to track people's health and functioning over time. However, describing and understanding functioning in its complexity with all its determinants is one of the biggest challenges faced by clinicians and researchers.
Design: This paper focuses on the development of a cohort study on functioning, outlining the relevant steps and related methods, and illustrating these with reference to the Swiss Spinal Cord Injury Cohort Study (SwiSCI).
Methods and results: In setting up a cohort study the initial step is to specify which variables are to be included, i.e. what to assess. The International Classification of Functioning, Disability and Health (ICF) is valuable in this process. The second step is to identify how to assess the specified ICF categories. Existing instruments and assessments can then be linked to the ICF.
Conclusion: The methods outlined here enable the development of a cohort study to be based on a comprehensive perspective of health, operationalized through functioning as conceptualized and classified in the ICF, yet to remain efficient and feasible to administer.
Objective: To test subgroups of a community-based sample of individuals with spinal cord injury, categorized by the application of current recommendations by the International Spinal Cord Society.
Design: Community survey.
Participants: Individuals with traumatic and non-traumatic spinal cord injury residing in Switzerland.
Methods: Recommended subgroups of age, gender, years since injury, severity of injury and aetiology were tested against the following criteria: (i) distribution of participants across categories; (ii) within- and between-group variability with regard to selected outcomes of functioning and quality of life.
Results: Data-sets for 1,549 participants (28.5% women; mean age 52 ± 15 years) were available for analyses. There was a number of participants in every subgroup, yet numbers were relatively small in the group with the shortest time since injury (< 1 year; n = 23) and in the oldest age group (≥76; n = 94). A high variability in some outcomes was detected between categories. All variables were predictive for most of the endpoints investigated.
Conclusion: Recommended categorization could well fit the present sample. A minor concern was the low numbers of participants in some subgroups.
Metric properties of the Spinal Cord Independence Measure - Self Report in a community survey
(2016)
Objective: The Spinal Cord Independence Measure – Self Report (SCIM-SR) is a self-report instrument for assessing functional independence of persons with spinal cord injury. This study examined the internal construct validity and reliability of the SCIM-SR, when administered in a community survey, using the Rasch measurement model.
Methods: Rasch analysis of data from 1,549 individuals with spinal cord injury who completed the SCIM-SR.
Results: In the initial analysis no fit to the Rasch model was achieved. Items were grouped into testlets to accommodate the substantial local dependency. Due to the differential item functioning for lesion level and degree, spinal cord injury-specific sub-group analyses were conducted. Fit to the Rasch model was then achieved for individuals with tetraplegia and complete paraplegia, but not for those with incomplete paraplegia. Comparability of ability estimates across sub-groups was attained by anchoring all sub-groups on a testlet.
Conclusion: The SCIM-SR violates certain assumptions of the Rasch measurement model, as shown by the local dependency and differential item functioning. However, an intermediate solution to achieve fit in 3 out of 4 spinal cord injury sub-groups was found. For the time being, therefore, it advisable to use this approach to compute Rasch-transformed SCIM-SR scores.
Objective: Functioning is an important outcome to measure in cohort studies. Clear and operational outcomes are needed to judge the quality of a cohort study. This paper outlines guiding principles for reporting functioning in cohort studies and addresses some outstanding issues.
Design: Principles of how to standardize reporting of data from a cohort study on functioning, by deriving scores that are most useful for further statistical analysis and reporting, are outlined. The Swiss Spinal Cord Injury Cohort Study Community Survey serves as a case in point to provide a practical application of these principles.
Methods and Results: Development of reporting scores must be conceptually coherent and metrically sound. The International Classification of Functioning, Disability and Health (ICF) can serve as the frame of reference for this, with its categories serving as reference units for reporting. To derive a score for further statistical analysis and reporting, items measuring a single latent trait must be invariant across groups. The Rasch measurement model is well suited to test these assumptions.
Conclusion: Our approach is a valuable guide for researchers and clinicians, as it fosters comparability of data, strengthens the comprehensiveness of scope, and provides invariant, interval-scaled data for further statistical analyses of functioning.
Objective: To evaluate the metric properties of distinct measures of psychological personal factors comprising feelings, beliefs, motives, and patterns of experience and behaviour assessed in the Swiss Spinal Cord Injury Cohort Study (SwiSCI), using Rasch methodology.
Methods: SwiSCI Pathway 2 is a community-based, nationwide, cross-sectional survey for persons with spinal cord injury (SCI) (n = 511). The Rasch partial credit model was used for each subscale of the Positive Affect Negative Affect Scale (PANAS), Appraisal of Life Events Scale (ALE), Purpose in Life test – Short Form (PIL-SF), and the Big Five Inventory-K (BFI-K).
Results: The measures were unidimensional, with the exception of the positive affect items of the PANAS, where pairwise t-tests resulted in 10% significant cases, indicating multidimensionality. The BFI-K subscale agreeableness revealed low reliability (0.53). Other reliability estimates ranged between 0.61 and 0.89. Ceiling and floor effects were found for most measures. SCI-related differential item functioning (DIF) was rarely found. Language DIF was identified for several items of the BFI-K, PANAS and the ALE, but not for the PIL-SF.
Conclusion: A majority of the measures satisfy the assumptions of the Rasch model, including unidimensionality. Invariance across language versions still represents a major challenge.
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.
Objective
Our aim was to specify the requirements of an architecture to serve as the foundation for standardized reporting of health information and to provide an exemplary application of this architecture.
Methods
The World Health Organization’s International Classification of Functioning, Disability and Health (ICF) served as the conceptual framework. Methods to establish content comparability were the ICF Linking Rules. The Rasch measurement model, as a special case of additive conjoint measurement, which satisfies the required criteria for fundamental measurement, allowed for the development of a common metric foundation for measurement unit conversion. Secondary analysis of data from the North Yorkshire Survey was used to illustrate these methods. Patients completed three instruments and the items were linked to the ICF. The Rasch measurement model was applied, first to each scale, and then to items across scales which were linked to a common domain.
Results
Based on the linking of items to the ICF, the majority of items were grouped into two domains, Mobility and Self-care. Analysis of the individual scales and of items linked to a common domain across scales satisfied the requirements of the Rasch measurement model. The measurement unit conversion between items from the three instruments linked to the Mobility and Self-care domains, respectively, was demonstrated.
Conclusions
The realization of an ICF-based architecture for information on patients’ functioning enables harmonization of health information while allowing clinicians and researchers to continue using their existing instruments. This architecture will facilitate access to comprehensive and consistently reported health information to serve as the foundation for informed decision-making.
Objective
Functioning is an important outcome in hand osteoarthritis (OA). The heterogeneity of patient‐reported outcome measures (PROMs) available challenges the direct comparability of information collected by these instruments. This study aimed to examine whether it is possible to achieve metric equivalence of PROMs commonly used to measure functioning in people with hand OA.
Methods
A secondary analysis of data from 253 persons who participated in the Vienna Hand Osteoarthritis Cohort Study was conducted applying the Rasch measurement model. Participants completed the Health Assessment Questionnaire, the Australian/Canadian Index for Hand Osteoarthritis, the Functional Index for Hand Osteoarthritis (FIHOA), and the Cochin Scale. The assumptions of stochastic ordering, local independence, unidimensionality, and invariance were tested for each scale independently before the scales were co‐calibrated onto a common metric.
Results
Except for the FIHOA, all measures indicated issues of local dependency in the initial analyses. After accommodating those with testlets, all scales satisfied the assumptions of the Rasch model (χ2 > 0.05). Marginal misfit in 2 items was found in the FIHOA, but this did not disturb person estimates. As the 4 scales form a common metric that satisfies the assumptions of the Rasch model, the scores can be equated.
Conclusion
The scores of the 4 hand function measures can be transformed to a common 0–100 metric, such that scores can be interchanged. A user‐friendly transformation table enables clinicians and researchers to have access to the common metric by simply adding up the total score for each instrument and identifying the corresponding transformed score on the common metric.
Objective: A national, multi-phase, consensus process to develop simple, intuitive descriptions of International Classification of Functioning, Disability and Health (ICF) categories contained in the ICF Generic and Rehabilitation Sets, with the aim of enhancing the utility of the ICF in routine clinical practice, is presented in this study.
Methods: A multi-stage, national, consensus process was conducted. The consensus process involved 3 expert groups and consisted of a preparatory phase, a consensus conference with consecutive working groups and 3 voting rounds (votes A, B and C), followed by an implementation phase. In the consensus conference, participants first voted on whether they agreed that an initially developed proposal for simple, intuitive descriptions of an ICF category was in fact simple and intuitive.
Results: The consensus conference was held in August 2014 in mainland China. Twenty-one people with a background in physical medicine and rehabilitation participated in the consensus process. Four ICF categories achieved consensus in vote A, 16 in vote B, and 8 in vote C.
Discussion: This process can be seen as part of a larger effort towards the system-wide implementation of the ICF in routine clinical and rehabilitation practice to allow for the regular and comprehensive evaluation of health outcomes most relevant for the monitoring of quality of care.
In 2011 the Chinese leadership in rehabilitation, in collaboration with the International Classification of Functioning, Disability and Health (ICF) Research Branch, embarked on an effort towards the system-wide implementation of the ICF in the healthcare system in China. We report here on the lessons learned from the pilot phase of testing the ICF Generic Set, a parsimonious set of 7 ICF categories, which have been shown to best describe functioning across the general population and people with various health conditions, for use in routine clinical practice in China. The paper discusses whether classification and measurement are compatible, what number of ICF categories should be included in data collection in routine practice, and the usefulness of a functioning profile and functioning score in clinical practice and health research planning. In addition, the paper reflects on the use of ICF qualifiers in a rating scale and the particularities of certain ICF categories contained in the ICF Generic Set when used as items in the context of Chinese rehabilitation and healthcare. Finally, the steps required to enhance the utility of system-wide implementation of the ICF in rehabilitation and healthcare services are set out.
Objective: The aims of this study were to evaluate the feasibility of using the International Classification of Functioning, Disability and Health (ICF) Generic Set in routine clinical practice, and of creating a functioning score based on it, and, subsequently, to examine its sensitivity to change.
Methods: In this prospective cohort study, data from 761 adult inpatients from 21 Chinese hospitals were analysed. Each patient was assessed at admission and discharge. Feasibility was evaluated by analysing mean assessment time. The Rasch model was used to create a metric of functioning. Sensitivity to change was analysed with mixed-effects regression and by calculating standardized effect size based on Cohen's f2.
Results: Mean duration of assessment was 5.3 min, with a significant decrease between admission and discharge. After removal of the item remunerative employment, the remaining ICF Generic Set categories fitted the Rasch model well. With a mean improvement in functioning of 12.1 (95% confidence interval (95% CI): 11.5–12.6), this metric proved sensitive to change, both in terms of statistical significance (p < 0.001) and standardized effect size (Cohen's f2 = 2.35).
Discussion: The ICF Generic Set is feasible for use in routine clinical practice and is promising to serve as the basis for the development of a functioning score that is sensitive to change.
The occupational therapy community has been receptive to the World Health Organisation's International Classification of Functioning, Disability and Health (ICF) published in 2001. Building upon results of a survey (2008–2009) and subsequent workshop (2010) conducted by the World Federation of Occupational Therapists on the use and utility of the ICF for occupational therapists, this paper addresses some of the opportunities and challenges to strengthening the use of the ICF in occupational therapy practice. Attaining further clarity on the relationship of occupational therapy concepts and the ICF and developing crosswalk tables to exemplify linkages between occupational therapy terminology and the ICF will strengthen utility of the ICF for occupational therapy. Enhanced clarity about the concepts within occupational therapy that correspond to the ICF will ultimately assist other professions and disciplines in their understanding about occupational therapy and occupational therapists’ roles in health and related systems.
Objective: To explore patients’ and health professionals’ views of outpatient rehabilitation services for patients with rheumatoid arthritis in 3 different rheumatology sites across Europe.
Methods: A qualitative multi-method study was conducted with patients and health professionals in Vienna (Austria), Gothenburg (Sweden) and Leeds (UK). Data collection was carried out during focus groups with patients and health professionals. Patients’ hospital records were integrated into the analysis. Data were analysed for site and findings were compared across sites.
Results: A total of 20 patients and 20 health professionals participated in 12 focus groups. Although the 3 sites were all publicly funded university clinics, there were differences between sites regarding the structure and content of rehabilitation services. The themes that emerged in the focus groups were: referrals; continuity in rehabilitation; information provided to patients; patients’ organizations; documentation and communication amongst health professionals; interface between primary and specialist care; and prescription practices. Most themes were addressed at all 3 sites, but there were variations in the specifics within themes.
Conclusion: Integration of patients’ and health professionals’ views on how rehabilitation services are coordinated and how (parts of) processes are set up elsewhere provide valuable information for the further optimization of rehabilitation services.
Institutional ethnographers and occupational scientists share a common interest in studying what people do in their daily lives. Institutional ethnographers start inquiry at the standpoint of people as they are situated in the actualities of everyday life and then turn their gaze from the individual to the social. We aim to outline in this paper some key tenets of institutional ethnography to argue its relevance for studying human occupation. More specifically, we posit that institutional ethnography provides a promising social theory and method to further understandings of the situated nature of human occupation.
Objective:
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.
Conclusion:
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.
Negotiating disability in everyday life: Ethnographical accounts of women with rheumatoid arthritis
(2014)
Purpose: Drawing on data from a larger study, the aim of this paper is to illuminate how the everyday doings of women with disabilities are coordinated to and shaped by organizational processes and social context, particularly as these relate to the potential of being labelled disabled.
Methods: An institutional ethnography was conducted with seven Austrian women diagnosed with rheumatoid arthritis (RA). Interviews and participant observations were conducted, and texts about the historical development of disability policies were identified. Data analysis included grouping similar doings of participants together to subsequently explore links between what the women did and how their doings are shaped by disability policies and the social context.
Results: The women, who participated in this study, spent time and effort to keep the disease invisible, resist disability and negotiate a disability pass. By drawing upon the historical development of Austrian disability policies, the interpretation reveals how this development infiltrates into participants’ lives and shapes their everyday doing.
Conclusion: This study furthers understanding of how broader policies and practices, shaped over historical time, infiltrate into the daily lives of women with disabilities. It illustrates how full participation may not necessarily be a lived reality for people with disabilities at this point in Austria.
Implications for Rehabilitation
Maximising full participation for people with rheumatoid arthritis is important.
This requires focusing not only on the bodily health of people with rheumatoid arthritis but also on their interaction with the social, cultural and political context in their daily lives.
This requires also understanding how knowledge about disability is passed on from previous generations.
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.
Introduction:
Occupation-based approaches are a hallmark of excellence in occupational therapy practice. This article focuses on the disjuncture between how women with rheumatoid arthritis go about their daily lives, that is to say their occupations, and what is addressed during routine visits at a specialized rheumatology outpatient clinic.
Method:
Institutional ethnography was employed as a method of inquiry to identify the occupations and related issues that were or were not accounted for in health records and addressed within institutional processes. Interviews and participant observations were conducted with seven women with rheumatoid arthritis who were mothers. Hospital records were analysed as texts mediating between the women's daily lives and the rheumatology outpatient clinic.
Findings:
The analysis revealed that despite the diversity in the ways that the women managed their daily lives, the things that they did were viewed, understood, and addressed only within the boundaries of the standardizing relations that ruled practice in this clinical setting. Institutional processes grounded in biomedical concepts such as functional status or disease activity, as well as clinical assessments that depict these concepts, both shape and limit opportunities for occupational therapists to advance and enact occupation-based practice.
Conclusion:
In this setting, the complexity of the participants' daily lives and the occupations they engage in remain unaddressed.
The paper demonstrates how institutional ethnography provides a way forward for occupational scientists to understand how social policies shape and infiltrate people's daily lives and work. Institutional ethnography is a method of inquiry that starts in individual's experiences and from there traces how their experiences are coordinated to and become shaped within particular organizational processes and social relations. In this paper, we are specifically interested in how social policies, as higher order texts, shape the organizational processes and service agents' work at Labor Market Offices, and enter into the organization of people's everyday activities. We want to make visible how particular policies enter into the organization of the daily lives of women with rheumatoid arthritis who apply for unemployment benefits and ‘regulate’ what they can or may have to do, even though higher order policy texts are not immediately visible or actively referred to in the setting. We learn from the experiences of two women, who are of employable age, have been diagnosed with rheumatoid arthritis, and live in a mid-sized city in Austria.
Occupational science has been discussed in terms of its relation to occupational therapy, its philosophical and theoretical foundations, and its international and interdisciplinary character over the past years. The disciplinary identity of occupational science in non-English speaking countries has not yet been debated in the literature. The aim of this article is to discuss occupational science as an emergent discipline in Austria, a German-speaking country. The discussion is divided into two parts. In the first part we engage in critical reflexivity to explicate the current development of occupational science in Austria by reviewing the disciplinary and historical context of occupational science and the related profession of occupational therapy, the educational and institutional influences as well as the influence of language. In the second part, we illustrate that occupational science is an emerging discipline in Austria by drawing on an ongoing research project: the Gender, Occupational Balance, and Immunology Study. By making explicit how occupational science has emerged, from our insider perspective, we aim to contribute to the further development of the disciplinary identity of occupational science nationally and internationally.
Introduction:
Occupational therapists' intention of enabling women with rheumatoid arthritis to participate in everyday life is fraught with challenges in everyday practice.
Method:
Inspired by institutional ethnography, this paper aims to make explicit how the work of occupational therapists in an outpatient rheumatology hospital setting is governed within invisible, ruling relations. An analytical description of the first author's clinical experience was a standpoint from which to explicate how occupational therapy is coordinated to the ruling relations of the Austrian health care system.
Findings:
Occupational therapy practice and research are ruled within a positivist, body-focused, medical apparatus, which renders largely invisible occupational therapists' knowledge of enabling people to engage in occupations that are meaningful to them.
Conclusion:
Occupational therapists have professional power that can be asserted by strategically using occupational therapy specific knowledge and language in textually mediated practices, from assessments and case files to media images, to give greater visibility and influence to the profession's work of enabling occupation.
Objectives: The purpose of this article is to share the details, outcomes and deliverables from an international workshop on work transitions in London, Ontario, Canada. Participants: Researchers, graduate students, and community group members met to identity ways to advance the knowledge base of strategies to enhance work participation for those in the most disadvantaged groups within society.
Methods: A participatory approach was used in this workshop with presentations by researchers and graduate students. This approach included dialogue and discussion with community members. In addition, small group dialogue and debate, world cafe discussions, written summaries of group discussion and reflection boards were used to bring new ideas to the discussion and to build upon what we know.
Findings: Two research imperatives and six research recommendations were identified to advance global dialogue on work transitions and to advance the knowledge base. Occupational justice can be used to support future research directions in the study of work transitions.
Conclusions: Moving forward requires a commitment of community of researchers, clinicians and stakeholders to address work disparities and implement solutions to promote participation in work.
Objective: Research has shown that comparatively few adults with Asperger Syndrome (AS) participate in the competitive work force. The purpose of this study was to gain in-depth knowledge about contextual factors, which contribute to successful labor market participation in some adults with AS. Participants: This study was conducted by indepth-interviewing six adults with AS working in the competitive job market in Switzerland. Methods: A developmental and hermeneutic narrative approach was used for data collection and analysis. Two in-depth narrative interviews were conducted with each participant. A narrative analysis according to the theories of Paul Ricoeur was performed. Results: Results showed that participants received pre-vocational requisites during their childhood through parents and friends that provided a feeling of security in social contexts. For participants, a supportive school setting resulted in academic achievements. The narratives reveal participants' capacities for understanding and adapting to social norms. Participants' understanding of their own needs was essential to the successful labor market participation. However, disclosure is rare and social stigma is still present. Conclusions: This study showed that successful labor participation of adults with AS can be enhanced through adequate social support already in the early stages of an individual's lifetime.
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.
Objectives: A historical review of the editorial board and the founding editor of WORK: A Journal of Prevention, Assessment and Rehabilitation was conducted to examine the understanding of the editorship and contributions of this team to the knowledge in WORK.
Participants: The team of four authors worked together to identify an approach to evaluate the contributions and impact of WORK's editorial board (EB) on the journal's scholarship. The editor-in-chief (EIC) and editorial board members were participants in this evaluation.
Methods: Informative and formative evaluations were used to investigate how knowledge was shaped through the development of an epistemic community of scholars in the field of work. Metrics of the EB composition and participation in the journal as well as surveys and interviews with the board and the editor-in-chief were analyzed.
Results: The EB represents an international community of scholars with a common interest in work and who contribute academically both within WORK and beyond. The epistemic community that has evolved through the editorial board represents a pluralistic perspective on work that is needed to inform practice, and knowledge.
Conclusion: Future directions to continue to advance knowledge through WORK's editorial board and EIC are elaborated.
Introduction: The aim of this review was to gain an understanding of the first 20 years of contributions to WORK within the assessment domain and to reflect on the perspectives underscoring this knowledge base.
Method: A narrative review of assessment articles using the WORK ARTicle database was conducted. Assessment articles were searched using issues from 1990 to 2009. Descriptive data was analyzed to examine historical trends of the specific types and dimensions of articles, the regional location of the contributions, and the methodological accordance. A reflective process was used by an editorial board member of WORK to inductively interpret perspectives and contextual issues that underpinned the evolution of the assessment domain in WORK.
Results: Over half of N= 108 of the articles on assessment in WORK focused on establishing or reporting reliability and validity of assessments used in clinical practice or evaluation research. The majority of the assessment articles were predominantly focused on the person. Contributions of articles were from 5 regions: North America, Europe, Australia, Asia and Africa.
Conclusions: Assessment articles in WORK have contributed to the development of evidence to support assessment of the worker. These articles represent a knowledge base that emphasizes evidence-based assessments to evaluate what a person can and cannot do to participate in work. Efforts are needed to expand knowledge generation in assessment to include more evaluations on the workplace and occupation dimensions, and that also considers the worker in context.
Objective: Many studies published in the journal WORK in the recent decades have discussed work and employment trends. However, the dimensions of these contributions over time have not been reviewed. The main objective of this study was to investigate the knowledge development in regard to work-related rehabilitation in WORK over the last two decades.
Methods: A scoping review was conducted using the following five stages: (i) identifying research question, (ii) identifying relevant studies, (iii) study selection, (iv) charting, summarizing, and collating the data, and (v) reporting the results. Studies were selected from the WORK Article Database.
Results: Seventy-five relevant studies were identified. The findings reflect that WORK has published papers from across the world, with most of the studies from the United States, Sweden, Canada, and Hong Kong. The complexity and multi-factorial nature of work-related rehabilitation was reflected in the application of quantitative, qualitative, and mixed method research approaches, as well as case studies. Study participants were characterized by work, and non-work related injuries, systematic diseases/chronic illness, fulfilled certain socio-demographic characteristic, and represented various stakeholders. Fewer studies drew on secondary resources. In the findings one re-occurring theme has been noted: 'maintaining/obtaining/returning to secure and stable employment/work'.
Conclusions: Four key-reflections evolved from this scoping review that provide potential avenues for future research. These key-reflections include (i) the national, transnational and international dimension of the reviewed studies, (ii) the various societal levels informing work-related rehabilitation practices, (iii) the diversity of methodologies applied in current research, and (iv) the variability of terminology used within the reviewed studies. The journal WORK has published a variety of research over the last two decades and contributed significantly to our current understanding of work-related rehabilitation. However, further research in these reflective areas would expand the current knowledge base.
The aim of this secondary analysis is to explicate taken-for-granted practices in the health care system in which the life stories of six women with rheumatoid arthritis (RA) are embedded. A secondary analysis of life stories of six women with RA, which were assigned to a typology named "rheumatoid arthritis as a source for new challenges" (STAMM et al., 2008) in the primary narrative study, was conducted. The theoretical framework applied for the analysis was informed by feminist standpoint theory and feminist philosophy. In the present analysis, each of the women challenged established health care practices and the cognitive authority of medicine at a certain point in their life story reflections. Becoming more conscious about health care practices enabled the women to acknowledge their own knowledge and to make choices about their health. The findings challenge health care providers to engage in critical reflexivity to become conscious about and to transform taken-for-granted practices as embedded in larger systems and to create health care environments that enable dialogue between clients and health care providers.
Objective: The aim of the present study was to explore how contextual factors affect the everyday activities of women and men with rheumatoid arthritis (RA), as evident in their life stories.
Methods: Fifteen people with RA, who had retired early due to the disease, were interviewed up to three times, according to a narrative biographic interview style. The life stories of the participants, which were reconstructed from the biographical data and from the transcribed ‘told story’ were analysed from the perspective of contextual factors, including personal and environmental factors. The rigour and accuracy of the analysis were enhanced by reflexivity and peer‐review of the results.
Results: The life stories of the participants in this study reflected how contextual factors (such as gender, the healthcare system, the support of families and social and cultural values) shaped their everyday activities. In a society such as in Austria, which is based on traditional patriarchal values, men were presented with difficulties in developing a non‐paid‐work‐related role. For women, if paid work had to be given up, they were more likely to engage in alternative challenging activities which enabled them to develop reflective skills, which in turn contributed to a positive and enriching perspective on their life stories. Health professionals may thus use some of the women's strategies to help men.
Conclusion: Interventions by health professionals in people with RA may benefit from an approach sensitive to personal and environmental factors.
Purpose: This study aimed to gain knowledge about environmental factors (EFs) that impact work and social life participation of people with multiple sclerosis (MS) in Austria and Switzerland to extend the knowledge of participation and to identify key areas for measuring participation.
Method: A three-round Delphi study was conducted defining patients as experts. In the 1st round, qualitative data was gathered through questionnaires, analyzed with content analysis, and factors were assigned to EFs as classified in the ICF. In the 2nd and 3rd round, experts judged EFs according to its relevance to obtain consensus (cut-off 75%). Categories were ranked on a scale from mostly important to important.
Results: One hundred and twelve Austrian and 109 Swiss experts were recruited. The content analysis revealed 768 EFs. The study resulted in a list of 176 consensus factors for Austria and 177 Switzerland. Five categories revealed to be highly important, 12 moderately important, 6 fairly important, and 10 important.
Conclusions: This study indicates that participation in work or social life is influenced by physical, social, attitudinal, and policy factors. Consensus factors afford insights into areas for consideration in the development of participation outcome measurements and support a comprehensive and inclusive rehabilitation approach.
Objective
To identify the most important and relevant concepts of daily functioning from the perspective of patients with systemic lupus erythematosus (SLE).
Methods
We conducted a consensus‐building, 3‐round, electronic mail survey with SLE patients using the Delphi technique. The Delphi technique is a structured communication process with 4 key characteristics: anonymity, iteration with controlled feedback, statistical group response, and informed input. The concepts contained in the answers of the patients were extracted and linked to the International Classification of Functioning, Disability and Health (ICF).
Results
Of the total 225 participants, 194 (86.2%) completed the questionnaires from all 3 Delphi rounds. In total, after the third Delphi round, 307 concepts were identified. Ninety concepts (55 in the domain body functions and structures, 16 in activities and participation, and 19 in environmental factors) were considered relevant by at least 50% of the participants in the third round and linked to the ICF. Twelve concepts were considered important by at least 75% of the participants.
Conclusion
The high number of concepts resulting from this large‐scale patient Delphi approach underlines the great variety of SLE patients' problems in daily functioning. The results of this patient Delphi project supplement the findings of our focus‐group study in establishing a comprehensive overview of the patient perspective in SLE.
Objective: To explore whether the concepts important to patients with hand osteoarthritis (OA) are covered by the most commonly used instruments measuring functioning.
Method: A qualitative multicentre study using a focus group technique was performed in five European countries: Austria, The Netherlands, Norway, Sweden and the United Kingdom. The qualitative data analysis followed a modified form of “meaning condensation” and used the International Classification of Functioning, Disability and Health (ICF) as a theoretical framework. Finally, the concepts from the focus groups were compared with the content of the most commonly used instruments which had been identified in an earlier theoretical analysis.
Results: Fifty-six people (51 women, mean (SD) age 62.7 (7.9) years) with hand OA participated in this study in two focus groups per centre. 63 concepts were extracted from the focus groups. Twenty-one (33%) of the 63 concepts were covered by at least one instrument. Psychological consequences, different qualities of pain, aesthetic changes and leisure activities are important concepts from the focus groups which were not covered by the instruments. The qualitative analysis revealed detailed descriptions of pain-concerning sensations, levels and a certain relation to activity, none of which were fully represented in the instruments routinely used.
Conclusion: It was possible to combine the concepts of the focus groups from each centre into a common qualitative analysis. The concepts important to people with hand OA are not fully represented in the most commonly used instruments.
Objective
To analyze the content of outcome measures commonly used to assess health in patients with fibromyalgia (FM) by linking the items of the instruments with the International Classification of Functioning, Disability and Health (ICF) in order to evaluate the adequacy of currently used measures.
Methods
Questionnaires used in FM were identified in a structured literature search. All concepts included in the items of the questionnaires were linked to ICF categories, according to previously published linking rules, by 2 independent health professionals. The percentages of linked ICF categories addressing the different ICF components were calculated.
Results
Generic and symptom‐specific instruments were included. From the 296 items contained in all 16 instruments, 447 concepts were extracted and then linked to 52 ICF categories of the component body functions, 1 category of the component body structure, 40 categories of the component activities and participation, and 9 categories of the component environmental factors. More than half of the concepts identified were linked to body function, fewer were linked to activities and participation, and only concepts of 4 instruments were linked to the ICF component environmental factors.
Conclusion
Many concepts were linked to the categories in the ICF component body functions. While linking to the broad category, purportedly similar instruments often covered widely varying areas of function at more fine‐grained levels of detail. Some categories, such as environmental factors, were barely covered by any of the instruments and might constitute an important aspect of health deserving better coverage and future development.