Using the refined ICF Linking Rules to compare the content of existing instruments and assessments: a systematic review and exemplary analysis of instruments measuring participation.

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).

What makes the difference in people's lives when they have a mental disorder?

OBJECTIVES: The objective of this study was to identify which environmental factors are the most responsible for the disability experienced by persons with mental disorders and whether they differ (1) from those in cardiovascular diseases, chronic respiratory conditions, diabetes, and cancer, and (2) depending on the capacity level-a proxy for the impact of health conditions on the health state of individuals. METHODS: Nationally representative data from 12,265 adults in Chile collected in 2015 with the WHO Model Disability Survey was analyzed. RESULTS: The availability of personal assistance, frequency of receiving personal assistance, and assistive devices for mobility were the most important environmental factors across mental and other non-communicable diseases. Perception of discrimination and use of health services were also prominent factors. There was a huge overlap between the factors found relevant for mental and other non-communicable diseases, but a substantial variability depending on the intensity of difficulties in capacity. CONCLUSIONS: This study challenges the appropriateness of disease-specific approaches and suggests that considering intrinsic capacity levels is more informative than focusing on diagnosis alone when comparing needs and barriers that affect the performance in daily life of specific groups of individuals.

Which Environmental Factors Have the Highest Impact on the Performance of People Experiencing Difficulties in Capacity?

Disability is understood by the World Health Organization (WHO) as the outcome of the interaction between a health condition and personal and environmental factors. Comprehensive data about environmental factors is therefore essential to understand and influence disability. We aimed to identify which environmental factors have the highest impact on the performance of people with mild, moderate and severe difficulties in capacity, who are at risk of experiencing disability to different extents, using data from a pilot study of the WHO Model Disability Survey in Cambodia and random forest regression. Hindering or facilitating aspects of places to socialize in community activities, transportation and natural environment as well as use and need of personal assistance and use of medication on a regular basis were the most important environmental factors across groups. Hindering or facilitating aspects of the general environment were the most relevant in persons experiencing mild levels of difficulties in capacity, while social support, attitudes of others and use of medication on a regular basis were highly relevant for the performance of persons experiencing moderate to higher levels of difficulties in capacity. Additionally, we corroborate the high importance of the use and need of assistive devices for people with severe difficulties in capacity.

Setting up a cohort study of functioning: From classification to measurement.

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.

Metric properties of the Spinal Cord Independence Measure - Self Report in a community survey.

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.

Metric properties of the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) in persons with spinal cord injury living in Switzerland.

OBJECTIVE: To examine the metric properties of the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) in persons with spinal cord injury in Switzerland from a classical and item response theory perspective. DESIGN: Cross-sectional survey. SUBJECTS: Persons with spinal cord injury living in the Swiss community (n = 1,549). METHODS: Score distributions and internal consistency were evaluated using Classical Test Theory. The Restrictions and Satisfaction scales were subjected to Rasch analysis. Anchored analyses were performed to account appropriately for items with structural missing. RESULTS: Internal consistency was good for the Restrictions (α = 0.90) and Satisfaction scales (α = 0.90), but not for the Frequency scale (α = 0.65). Rasch analyses showed acceptable model fit for the Restrictions and Satisfaction scales after collapsing response categories of some items and merging some items into testlets. Differential item functioning was small. Anchoring allowed inclusion of the item work/education in the Restrictions scale and work/education and/or partner relationship in the Satisfaction scale. CONCLUSION: The Restrictions and Satisfaction scales of the USER-Participation showed satisfactory metric properties. The Frequency scale showed fewer optimal properties, but nonetheless provides important additional information regarding participation. Conversion tables were performed to transform USER-Participation raw scores into a 0-100 interval scale using Rasch-based ability estimates for use in epidemiological studies.

Toward standardized reporting for a cohort study on functioning: The Swiss Spinal Cord Injury Cohort Study.

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.

Perceived impact of environmental barriers on participation among people living with spinal cord injury in Switzerland.

OBJECTIVE: To describe the impact of environmental barriers perceived by people living with spinal cord injury in the Swiss community and to compare this across subpopulations. DESIGN: Cross-sectional study. SUBJECTS: A total of 1,549 participants in the community survey of the Swiss spinal cord injury Cohort study. METHODS: The perceived impact of environmental barriers on participation was measured with the Nottwil Environmental Factors Inventory Short Form (NEFI-SF). Physical independence was measured with the Spinal Cord Independence Measure Self Report (SCIM-SR). Perceived barriers were compared across people with different demographic and lesion characteristics. Multivariable regression modelling applying fractional polynomials was used to evaluate the overall perceived impact of barriers in relation to demographics, spinal cord injury characteristics, and physical independence. RESULTS: Most perceived barriers were climatic conditions and inaccessibility of public and private infrastructure. Older participants, those with longer time since injury and participants with complete lesions indicated more problems with access. Females reported more attitudinal barriers. Approximately one-third of participants with complete tetraplegia reported obstacles related to assistance with personal care. A higher level of physical independence was associated with fewer perceived barriers. CONCLUSION: Despite living in a rich country with a well-developed social security system, many people with spinal cord injury in Switzerland experience participation restrictions due to environmental barriers; in particular women, people with non-traumatic spinal cord injury and limited physical independence.

Determinants of Psychosocial Difficulties Experienced by Persons with Brain Disorders: Towards a 'Horizontal Epidemiology' Approach.

BACKGROUND: Persons with brain disorders experience significant psychosocial difficulties (PSD) in daily life, e.g. problems with managing daily routine or emotional lability, and the level of the PSD depends on social, physical and political environments, and psychologic-personal determinants. Our objective is to determine a brief set of environmental and psychologic-personal factors that are shared determinants of PSD among persons with different brain disorders. METHODS: Cross-sectional study, convenience sample of persons with either dementia, stroke, multiple sclerosis, epilepsy, migraine, depression, schizophrenia, substance dependence or Parkinson's disease. Random forest regression and classical linear regression were used in the analyses. RESULTS: 722 subjects were interviewed in four European countries. The brief set of determinants encompasses presence of comorbidities, health status appraisal, stressful life events, personality changes, adaptation, self-esteem, self-worth, built environment, weather, and health problems in the family. CONCLUSIONS: The identified brief set of common determinants of PSD can be used to support the implementation of cross-cutting interventions, social actions and policy tools to lower PSD experienced by persons with brain disorders. This set complements a recently proposed reliable and valid direct metric of PSD for brain disorders called PARADISE24.

PARADISE 24: A Measure to Assess the Impact of Brain Disorders on People's Lives.

OBJECTIVE: To construct a metric of the impact of brain disorders on people's lives, based on the psychosocial difficulties (PSDs) that are experienced in common across brain disorders. STUDY DESIGN: Psychometric study using data from a cross-sectional study with a convenience sample of 722 persons with 9 different brain disorders interviewed in four European countries: Italy, Poland, Spain and Finland. Questions addressing 64 PSDs were first reduced based on statistical considerations, patient's perspective and clinical expertise. Rasch analyses for polytomous data were also applied. SETTING: In and outpatient settings. RESULTS: A valid and reliable metric with 24 items was created. The infit of all questions ranged between 0.7 and 1.3. There were no disordered thresholds. The targeting between item thresholds and persons' abilities was good and the person-separation index was 0.92. Persons' abilities were linearly transformed into a more intuitive scale ranging from zero (no PSDs) to 100 (extreme PSDs). CONCLUSION: The metric, called PARADISE 24, is based on the hypothesis of horizontal epidemiology, which affirms that people with brain disorders commonly experience PSDs. This metric is a useful tool to carry out cardinal comparisons over time of the magnitude of the psychosocial impact of brain disorders and between persons and groups in clinical practice and research.

Psychometric properties of the Nottwil Environmental Factors Inventory Short Form.

OBJECTIVES: To examine the psychometric properties of the Nottwil Environmental Factors Inventory Short Form using Rasch analysis; to determine its construct validity and internal consistency; and to develop a metric for scoring. DESIGN: Cross-sectional psychometric study. Construct validity of the Nottwil Environmental Factors Inventory Short Form, including model fit, person and item fit, local item dependence, dimensionality, and differential item functioning (DIF), was investigated with Rasch analysis. Internal consistency was assessed with Cronbach alpha and item-total correlations. SETTING: Community. PARTICIPANTS: Swiss residents aged >16 years and living with traumatic or nontraumatic spinal cord injury (SCI) (N=1549). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: The Nottwil Environmental Factors Inventory Short Form, a 14-item questionnaire developed to assess perceived impact of environmental barriers on participation. RESULTS: Local dependencies between items addressing a similar content could be solved by creating a testlet. With 1 testlet there was strong evidence for unidimensionality of the Nottwil Environmental Factors Inventory Short Form. Although person-item targeting revealed a floor effect, indicating few perceived environmental barriers to participation in the Swiss SCI population, the item fit was good. Only a few items presented DIF. The Nottwil Environmental Factors Inventory Short Form showed good internal consistency (α=.82). CONCLUSIONS: This psychometric analysis supports the use of the Nottwil Environmental Factors Inventory Short Form to evaluate perceived environmental barriers to participation in persons with SCI living in the community.

Determining the most robust dimensional structure of categories from the international classification of functioning, disability and health across subgroups of persons with spinal cord injury to build the basis for future clinical measures.

OBJECTIVE: To determine the most robust dimensional structure of the International Classification of Functioning, Disability and Health (ICF) categories relevant to spinal cord injury (SCI) across subgroups of lesion level, health care context, sex, age, and resources of the country. DESIGN: A multidimensional between-item response Rasch model was used. The choice of the dimensions was conceptually driven using the ICF components from the functioning chapters and splits of the activity and participation component described in the ICF. SETTING: Secondary analysis of data from an international, cross-sectional, multicentric study for the Development of ICF Core Sets for Spinal Cord Injury. PARTICIPANTS: Persons with SCI (N=1048) from the early postacute and long-term living context from 14 middle/low- and high-resource countries. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Ratings of categories of the ICF relevant for SCI were analyzed. RESULTS: Five models were tested on the complete sample and 5 subgroups. The overall reliability of all models and reliability within dimensions of the unidimensional and 2-dimensional models were good to excellent. The ICF categories spread well along the disability scale. The model fit improvement from the unidimensional to the 2-dimensional and from the 2-dimensional to the 3-dimensional model was significant in all groups (P<.0001). The improvement, however, from a unidimensional to a 2-dimensional structure was markedly better than from a 2-dimensional to a 3-dimensional one. CONCLUSIONS: We propose that a 2-dimensional structure separating body functions and body structures from the activity and participation categories should serve as a basis for developing clinical measures in SCI in the future.

Towards the development of clinical measures for spinal cord injury based on the International Classification of Functioning, Disability and Health with Rasch analyses.

OBJECTIVES: To determine whether the International Classification of Functioning, Disability and Health (ICF) categories relevant to spinal cord injury (SCI) can be integrated in clinical measures and to obtain insights to guide their future operationalization. Specific aims are to find out whether the ICF categories relevant to SCI fit a Rasch model taking into consideration the dimensionality found in previous investigations, local item dependencies, or differential item functioning. DESIGN: All second-level ICF categories collected in the Development of ICF Core Sets for SCI project in specialized centers within 15 countries from 2006 through 2008. SETTING: Secondary data analysis. PARTICIPANTS: Adults (N=1048) with SCI from the early postacute and long-term living context. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Two unidimensional Rasch analyses: one for the ICF categories from body functions and body structures components and another for the ICF categories from the activities and participation component. RESULTS: Results support good reliability and targeting of the ICF categories in both dimensions. In each dimension, few ICF categories were subject to misfit. Local item dependency was observed between ICF categories of the same chapters. Group effects for age and sex were observed only to a small extent. CONCLUSIONS: The validity of ICF categories to develop measures of functioning in SCI for clinical practice and research is to some extent supported. Model adjustments were suggested to further improve their operationalization and psychometrics.

Setting up a cohort study on functioning: deciding what to measure.

The objectives of this article were to (1) answer the question of what to measure in a cohort study in which the main focus is the understanding of functioning over time for a specific population and to (2) describe the process of determining what to measure using a theory-informed selection of domains of functioning based on the International Classification of Functioning, Disability and Health (ICF). The Swiss Spinal Cord Injury Cohort Study, a cohort study being carried out in Switzerland for a population of persons with spinal cord injury, was used as an example. A set of domains for the Swiss Spinal Cord Injury Cohort Study was identified demonstrating the application of the methodology. This set consisted of 45 categories of the ICF. Defining what to measure using the ICF is a valuable technique for the cohort researcher because it guarantees comparability of data and comprehensiveness of scope, enhancing the prospects of the study results being understood and is consequently used by health professionals as well as in other contexts, such as in health and social policy.

A systematic literature review of outcome measures for upper extremity function using the international classification of functioning, disability, and health as reference.

OBJECTIVE: To provide information regarding the (1) responsiveness and reliability of different outcome measures used with persons who have impairments in upper extremity function and (2) their content validity based on the International Classification of Functioning, Disability, and Health (ICF). DATA SOURCES: MEDLINE, CINAHL, PsycINFO, and EMBASE databases were systematically searched for studies on outcome measures used to evaluate upper extremity function; only studies written in English and published between July 1997 and July 2010 were considered. STUDY SELECTION: One investigator reviewed titles and abstracts of the identified studies to determine whether the studies met predefined eligibility criteria (eg, study design, age <18 years). Another investigator did the same for 70% of the studies. DATA EXTRACTION: All types of outcome measures in the included studies were extracted, and the information retrieved from these outcome measures was linked to the ICF by 2 independent investigators who used standardized linking rules. In addition, studies reporting the clinical responsiveness, interrater reliability, and test-retest reliability of the outcome measures were identified. DATA SYNTHESIS: From among the 894 studies that were included in this review, 17 most frequently used outcome measures in the different study populations were identified. Five were patient-reported outcome measures and 12 were clinical outcome measures. The outcome measures show large variability with regard to the areas of functioning and disability addressed. Reliability and responsiveness data are missing for a few outcome measures or for certain populations for which they have been used. CONCLUSION: This systematic review provides an overview of the outcome measures used to address functioning and disability as they are related to the upper extremity. The results of this study may help clinicians and researchers select the most appropriate outcome measure for their clinical population or research question according to ICF-based content validity, and additional information on the reliability and responsiveness of the measures is provided. Our findings also can provide directions for further research.

Visual perception and appraisal of persons with impairments: a randomised controlled field experiment using photo elicitation.

PURPOSE: Visual cues from persons with impairments may trigger stereotypical generalisations that lead to prejudice and discrimination. The main objective of this pilot study is to examine whether visual stimuli of impairment activate latent prejudice against disability and whether this connection can be counteracted with priming strategies. METHODS: In a field experiment, participants were asked to rate photographs showing models with mental impairments, wheelchair users with paraplegia, and persons without any visible impairment. Participants should appraise the models with regard to several features (e.g. communicativeness, intelligence). One hundred participants rated 12 photo models yielding a total of 1183 observations. One group of participants was primed with a cover story introducing visual perception of impairment as the study's gist, while controls received neutral information. RESULTS: Photo models with mental impairments were rated lowest and models without visible impairment highest. In participants who did not have prior contacts with persons with impairments, priming led to a levelling of scores of models with and without impairment. Prior contacts with persons with impairments created similar effects as the priming. Unexpectedly, a pattern of converse double discrimination to the disadvantage of men with mental impairments was revealed. CONCLUSION: Signs of stereotypical processing of visual cues of impairment have been found in participants of the Swiss general population. Personal contact with persons with impairments as well as priming participants seems to reduce stereotyping.