22 research outputs found
Setting up a cohort study of functioning: From classification to measurement
No full textOBJECTIVE: 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.<br/
Determining the most robust dimensional structure of ICF categories across subgroups of persons with spinal cord injury to build the basis for future clinical measures
No full textObjectivesTo 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 [1] lesion level, [2] health care context, [3] gender, [4] age, and [5] the countries’ resources.DesignA 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 the splits of the Activity and Participation component described in the ICF.SettingSecondary analysis of data from an international, cross-sectional, multi-centric study for the ‘Development of ICF Core Sets for Spinal Cord Injury’.Participants1048 persons with SCI from the early post acute and long term living context from 14 middle/low and high resource countries.Interventionsn.a.Main outcome MeasuresRatings of categories of the ICF relevant for SCI were analysed.Results5 Models were tested on the complete sample and the 5 subgroups. The overall reliability of all models as well as the reliability within dimensions of the unidimensional and bidimensional models was good to excellent. The ICF categories spread well along the disability scale. The model fit improvement from the unidimensional to the bidimensional and from the bidimensional to the tridimensional model was significant in all groups (p-values < 0.0001). The improvement, however, from a unidimensional to a bidimensional structure was markedly better than from a bidimensional to a tridimensional one.ConclusionWe propose, that a two dimensional structure separating body functions and body structures from activity and participation categories should serve as a basis for developing clinical measures in SCI in the future.<br/
Explanatory power does not equal clinical importance: study of the use of the Brief ICF Core Sets for Spinal Cord Injury with a purely statistical approach
No full textStudy design: Psychometric study analyzing the data of a cross-sectional, multicentric study with 1048 persons with spinal cord injury (SCI).Objective: To shed light on how to apply the Brief Core Sets for SCI of the International Classification of Functioning, Disability and Health (ICF) by determining whether the ICF categories contained in the Core Sets capture differences in overall health.Methods: Lasso regression was applied using overall health, rated by the patients and health professionals, as dependent variables and the ICF categories of the Comprehensive ICF Core Sets for SCI as independent variables.Results: The ICF categories that best capture differences in overall health refer to areas of life such as self-care, relationships, economic self-sufficiency and community life. Only about 25% of the ICF categories of the Brief ICF Core Sets for the early post-acute and for long-term contexts were selected in the Lasso regression and differentiate, therefore, among levels of overall health.Conclusion: ICF categories such as d570 Looking after one's health, d870 Economic self-sufficiency, d620 Acquisition of goods and services and d910 Community life, which capture changes in overall health in patients with SCI, should be considered in addition to those of the Brief ICF Core Sets in clinical and epidemiological studies in persons with SCI
PARADISE 24: a measure to assess the impact of brain disorders on people's lives
No full textObjective: 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.<br/
Determinants of psychosocial difficulties experienced by persons with brain disorders: towards a ‘horizontal epidemiology’ approach
No full textObjective: To test the hypothesis of ‘horizontal epidemiology’, i.e. that psychosocial difficulties (PSDs), such as sleep disturbances, emotional instability and difficulties in personal interactions, and their environmental determinants are experienced in common across neurological and psychiatric disorders, together called brain disorders.Study Design: A multi-method study involving systematic literature reviews, content analysis of patient-reported outcomes and outcome instruments, clinical input and a qualitative study was carried out to generate a pool of PSD and environmental determinants relevant for nine different brain disorders, namely epilepsy, migraine, multiple sclerosis, Parkinson’s disease, stroke, dementia, depression, schizophrenia and substance dependency. Information from these sources was harmonized and compiled, and after feedback from external experts, a data collection protocol including PSD and determinants common across these nine disorders was developed. This protocol was implemented as an interview in a cross-sectional study including a convenience sample of persons with one of the nine brain disorders. PSDs endorsed by at least 25% of patients with a brain disorder were considered associated with the disorder. PSD were considered common across disorders if associated to 5 out of the 9 brain disorders and if among the 5 both neurological and psychiatric conditions were represented.Setting: The data collection protocol with 64 PSDs and 20 determinants was used to collect data from a convenience sample of 722 persons in four specialized health care facilities in Europe.Results: 57 of the PSDs and 16 of the determinants included in the protocol were found to be experienced across brain disorders.Conclusion: This is the first evidence that supports the hypothesis of horizontal epidemiology in brain disorders. This result challenges the brain disorder-specific or vertical approach in which clinical and epidemiological research about psychosocial difficulties experienced in daily life is commonly carried in neurology and psychiatry and the way in which the corresponding health care delivery is practiced in many countries of the world.<br/
Determinants of psychosocial difficulties experienced by persons with brain disorders: towards a 'horizontal epidemiology' approach.
No full textPersons 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.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.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.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
Toward standardized reporting for a cohort study on functioning: The Swiss Spinal Cord Injury Cohort Study
No full textOBJECTIVE: 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.<br/
Psychometric properties of the Nottwil Environmental Factors Inventory Short Form
No full textObjectives: 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) (NZ1549). 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 (aZ.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
Quality of life in and after spinal cord injury rehabilitation : A longitudinal multicenter study
No full textPurpose: To investigate the changes in quality of life (QOL) in persons with spinal cord injury (SCI) and their close persons during the first 2 years post injury. Method: Longitudinal, multiple sample, multiple wave panel design. Data included 292 patients recruited from Austrian, British, German, Irish, and Swiss specialist SCI rehabilitation centers and 55 of their close persons. Questionnaire booklets were administered at 6 weeks, 12 weeks, 1 year, and 2 years after injury to both samples. Results: Study 1 investigated the WHOQOL-BREF domains in individuals with SCI and found differences mostly in the physical domain indicating that QOL increases for persons with SCI from onset. An effect of the culture was observed in the psychological and environmental domains with higher QOL scores in the German-speaking sample. Study 2 compared individuals with SCI to their close persons and found differences in the physical, environmental, and social domains over time. The scores on the psychological dimension did not significantly differ between the persons with SCI and their close persons over time. Conclusion: QOL measured by the WHOQOL-BREF shows that QOL changes during rehabilitation and after discharge. Apart from the physical dimension, the persons with SCI and their close persons seem to experience a similar change in QOL. Further longitudinal research is suggested to clarify the mutual adjustment process of people with SCI and their close persons and to explore cultural differences in QOL between English- and German-speaking countries.</p
Perceived impact of environmental barriers on participation among people living with spinal cord injury in Switzerland
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