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- Barthel Index; Functional Independence Measure; Rasch Measurement Model; activities of daily living; outcome assessment (healthcare); psychometrics; quality in healthcare; rehabilitation. (1)
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- Common metric; DASH; Disability and Health; HAQ; International Classification of Functioning; Multidimensional HAQ; PROMIS-SF; Rasch measurement model; Scale banking; WHODAS 2.0; WOMAC. (1)
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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.
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.
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.
Study design
Cross-sectional.
Objectives
To examine the associations between activities, body structures and functions, and their relationship with aetiology, age and sex in persons with spinal cord injury (SCI) at discharge from first rehabilitation.
Setting
Swiss SCI Cohort Study (SwiSCI).
Methods
The study included 390 participants with newly acquired SCI and the International Classification of Functioning, Disability and Health (ICF) as conceptual frame of reference. Body structures were represented by injury level and severity; body functions by cardiovascular, pulmonary, skin, bowel and urinary functions and pain; mental functions by anxiety, depression, optimism and self-esteem; and activities by independence in performing activities of daily living (ADL). Using structural equation modelling (SEM), indirect effects of body structures and functions on independence in performing ADL through mental functions were tested for each mental function separately. For each structural model, fit was assessed using several indices and differences in aetiology, age and sex groups were explored.
Results
The structural model about optimism showed good fit in all indices; the models about anxiety, depression and self-esteem showed conflicting fit indices, respectively. Within all models, effects on independence in performing ADL were mainly direct. Pain showed significant (P < 0.05) indirect effects on independence in performing ADL within the depression, optimism and self-esteem models. The model about anxiety showed differences in aetiology groups.
Conclusions
Using an ICF-based modelling approach, this study presents an attempt towards a more comprehensive understanding of functioning in first rehabilitation of persons with SCI, which might be fundamental for rehabilitation planning.
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.
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.
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.
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.
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.
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.