Christine Fekete

Design of the Swiss Spinal Cord Injury Cohort Study.

The overall goal of the Swiss Spinal Cord Injury Cohort Study (SwiSCI) is to gain a better understanding of how to support functioning, health maintenance, and quality-of-life of persons with spinal cord injury (SCI) along the continuum of care, in the community, and along their life span. The purpose of this study was to present the SwiSCI study design. SwiSCI is composed of three complementary pathways and will include Swiss persons 16 yrs or older who have diagnoses of traumatic or nontraumatic SCI. Pathway 1 is a retrospective study of medical files of patients admitted to one of the collaborating SCI centers between 2005 and 2009. Pathway 2 is a nationwide survey of persons with chronic SCI. Pathway 3 is an inception cohort study including persons with newly acquired SCI. SwiSCI is conducted in collaboration with the Swiss Paraplegic Association and the major specialized rehabilitation centers in Switzerland. Measurement instruments that are to be used in Pathway 2 and 3 cover body structures and functions, activities, participation, life satisfaction, and personal and environmental factors. SwiSCI is a prospective cohort study that will contribute to a comprehensive understanding of the lived experience of persons with SCI.

Development and validation of a self-report version of the Spinal Cord Independence Measure (SCIM III)

Study design:Cross-sectional validation study.Objectives:To develop and validate a self-report version of the Spinal Cord Independence Measure (SCIM III).Setting:Two SCI rehabilitation facilities in Switzerland.Methods:SCIM III comprises 19 questions on daily tasks with a total score between 0 and 100 and subscales for ‘self-care’, ‘respiration & sphincter management’ and ‘mobility’. A self-report version (SCIM-SR) was developed by expert discussions and pretests in individuals with spinal cord injury (SCI) using a German translation. A convenience sample of 99 inpatients with SCI was recruited. SCIM-SR data were analyzed together with SCIM III data obtained from attending health professionals.Results:High correlations between SCIM III and SCIM-SR were observed. Pearson’s r for the total score was 0.87 (95% confidence interval (CI) 0.82–0.91), for the subscales self-care 0.87 (0.81–0.91); respiration & sphincter management 0.81 (0.73–0.87); and mobility 0.87 (0.82–0.91). Intraclass correlations were: total score 0.90 (95% CI 0.85–0.93); self-care 0.86 (0.79–0.90); respiration & sphincter management 0.80 (0.71–0.86); and mobility 0.83 (0.76–0.89). Bland–Altman plots showed that patients rated their functioning higher than professionals, in particular for mobility. The mean difference between SCIM-SR and SCIM III for the total score was 5.14 (point estimate 95% CI 2.95–7.34), self-care 0.89 (0.19–1.59), respiration & sphincter management 1.05 (0.18–2.28 ) and mobility 3.49 (2.44–4.54). Particularly patients readmitted because of pressure sores rated their independence higher than attending professionals.Conclusion:Our results support the criterion validity of SCIM-SR. The self-report version may facilitate long-term evaluations of independence in persons with SCI in their home situation.

All talk, no action?: the global diffusion and clinical implementation of the international classification of functioning, disability, and health.

ObjectiveWe aimed to review the global diffusion and clinical implementation of the International Classification of Functioning, Disability, and Health (ICF) endorsed by the World Health Assembly in 2001. DesignFirst, we analyzed the diffusion process of the ICF, with a special focus on clinical rehabilitation. This was done by researching the spread of ICF-related terms in Pubmed and Google from 2001 to 2010. Second, we examined the clinical implementation of the ICF in rehabilitation settings by a systematic review of the literature in the databases Pubmed and Embase. Eligible were studies evaluating the current application and impact of the ICF in the daily practice of clinical rehabilitation. ResultsWe found that the diffusion of the ICF as a mere term and concept in the area of rehabilitation is successful. However, the implementation in clinical rehabilitation practice is highly idiosyncratic and rarely evaluated appropriately. The question arises whether this idiosyncratic implementation can be regarded as a process toward standardization at all. Evidence of concrete benefits of a clinical ICF implementation for team members or even patients is at best weak. ConclusionsWe suggest more comprehensive and comparable multicenter studies to solve the urgent need for best practice recommendations on ICF implementation in clinical rehabilitation.

Swiss national community survey on functioning after spinal cord injury: Protocol, characteristics of participants and determinants of non-response.

OBJECTIVE To detail the protocol, recruitment, study population, response, and data quality of the first population-based community survey of the Swiss Spinal Cord Injury (SwiSCI) Cohort Study. DESIGN The survey consisted of 3 successive modules administered between September 2011 and March 2013. The first two modules queried demographics, lesion characteristics and key domains of functioning. The third module collected information on psychological personal factors and health behaviour; work integration; or health services and aging. PARTICIPANTS Community-dwelling persons with chronic spinal cord injury in Switzerland. METHODS Descriptive analyses of the recruitment process, participant characteristics, and correspondence between self-reported and clinical data. Determinants for participation and the impact of non-response on survey results were assessed. RESULTS Out of 3,144 eligible persons 1,549 participated in the first two modules (cumulative response rate 49.3%). Approximately three-quarters of participants were male, with a median age of 53 years, and 78% had traumatic spinal cord injury. Record-linkage with medical records demonstrated substantial agreement with self-reported demographic and lesion characteristics. A minimal non-response bias was found. CONCLUSIONS The community survey was effective in recruiting an unbiased sample, thus providing valuable information to study functioning, health maintenance, and quality of life in the Swiss SCI community.

Health conditions in people with spinal cord injury: Contemporary evidence from a population-based community survey in Switzerland.

BACKGROUND Health conditions in people with spinal cord injury are major determinants for disability, reduced well-being, and mortality. However, population-based evidence on the prevalence and treatment of health conditions in people with spinal cord injury is scarce. OBJECTIVE To investigate health conditions in Swiss residents with spinal cord injury, specifically to analyse their prevalence, severity, co-occurrence, and treatment. METHODS Cross-sectional data (n = 1,549) from the community survey of the Swiss Spinal Cord Injury (SwiSCI) cohort study, including Swiss residents with spinal cord injury aged over 16 years, were analysed. Nineteen health conditions and their self-reported treatment were assessed with the spinal cord injury Secondary Conditions Scale and the Self-Administered Comorbidity Questionnaire. Prevalence and severity were compared across demographics and spinal cord injury characteristics. Co-occurrence of health conditions was examined using a binary non-metric dissimilarity measure and multi-dimensional scaling. Treatment rates were also examined. RESULTS Number of concurrent health conditions was high (median 7; interquartile range 4-9; most frequent: spasticity, chronic pain, sexual dysfunction). Prevalence of health conditions increased with age and was higher in non-traumatic compared with traumatic spinal cord injury. Spinal cord injury specific conditions co-occurred. Relative frequencies of treatment were low (median 44%, interquartile range 25-64%), even for significant or chronic problems. DISCUSSION A high prevalence of multimorbidity was found in community-dwelling persons with spinal cord injury. Treatment for some highly prevalent health conditions was infrequent.

How to Measure What Matters Development and Application of Guiding Principles to Select Measurement Instruments in an Epidemiologic Study on Functioning

The purpose of this article was to describe and to apply a comprehensive set of guiding principles in the selection of measurement instruments for a longitudinal epidemiologic study focusing on functioning using the International Classification of Functioning, Disability, and Health (ICF) as reference framework. Based on the literature, the ICF linkage rules, and the definition of ICF categories to be measured, the following guiding principles for selecting measurement instruments are defined: redundancy, efficiency, level of detail of information, comparability, feasibility, and truth and discrimination. Examples illustrate that the application of guiding principles allows for a systematic and reasoned process of measurement instrument selection and thus offers a potential solution for the multifaceted challenges that one encounters in the selection of measurement instruments. It is transparently demonstrated how the ICF linkage rules enable researchers to address issues such as efficiency, comparability, and redundancy and how the definition of a set of ICF categories to be measured allows assessing inefficiencies in measurement instruments. Because of the ICF linkage rules and the definition of ICF categories to be measured, new guiding principles for selecting measurement instruments emerge. The main challenges lie in the difficulty to quantify and prioritize the applicability of guiding principles and the fact that they strongly interact. Notably, the prioritization and application of guiding principles must be defined considering the specific characteristics and aims of the specific study.

Is financial hardship associated with reduced health in disability? The case of spinal cord injury in Switzerland.

Objective To investigate socioeconomic inequalities in a comprehensive set of health indicators among persons with spinal cord injury in a wealthy country, Switzerland. Methods Observational cross-sectional data from 1549 participants of the Swiss Spinal Cord Injury Cohort Study (SwiSCI), aged over 16 years, and living in Switzerland were analyzed. Socioeconomic circumstances were operationalized by years of formal education, net equivalent household income and financial hardship. Health indicators including secondary conditions, comorbidities, pain, mental health, participation and quality of life were used as outcomes. Associations between socioeconomic circumstances and health indicators were evaluated using ordinal regressions. Results Financial hardship was consistently associated with more secondary conditions (OR 3.37, 95% CI 2.18–5.21), comorbidities (OR 2.88, 95% CI 1.83–4.53) and pain (OR 3.32, 95% CI 2.21–4.99), whereas mental health (OR 0.23, 95% CI 0.15–0.36), participation (OR 0.30, 95% CI 0.21–0.43) and quality of life (OR 0.22, 95% CI 0.15–0.33) were reduced. Persons with higher education reported better mental health (OR 1.04, 95% CI 1.00–1.07) and higher quality of life (OR 1.06, 95% CI 1.02–1.09); other health indicators were not associated with education. Household income was not related to any of the studied health indicators when models were controlled for financial hardship. Conclusions Suffering from financial hardship goes along with significant reductions in physical health, functioning and quality of life, even in a wealthy country with comprehensive social and health policies.

Participation in physical activity in persons with spinal cord injury: A comprehensive perspective and insights into gender differences

BACKGROUND To prevent secondary conditions and to improve and maintain health, regular physical activity is recommended as an important component of a health-promoting lifestyle for persons with spinal cord injury (SCI). However, participation in physical activity is low in persons with SCI, especially in women. OBJECTIVE The objective of this study is to identify (1) categories of functioning, the environment and personal factors that influence participation in physical activity in persons with SCI and (2) gender differences within identified factors. METHODS An explorative qualitative study design using both focus groups and individual interviews based on a semi-structured interview guide was used. Statements were linked to categories or chapters of the four components of functioning (body structures, body functions, activities and participation) and of the environment included in the International Classification of Functioning, Disability and Health (ICF) and a recently developed list of personal factors. An in-depth analysis of the statements was performed to identify relevant associations and gender differences. RESULTS Twenty-six persons (13 female, 13 male) participated in the study. Sixty-seven categories and four chapters from all components of functioning and environmental factors included in the ICF and 33 subdivisions of personal factors were found to be associated with physical activity in persons with SCI. Gender differences could be assigned to areas of gender roles, social support, athletic identity, interests, and general behavioral patterns. CONCLUSION This study contributes to a comprehensive understanding of participation in physical activity in persons with SCI and presents a first step toward the identification of gender differences. The results should be validated by further quantitative research.

Social Inequalities of Functioning and Perceived Health in Switzerland–A Representative Cross-Sectional Analysis

Many people worldwide live with a disability, i.e. limitations in functioning. The prevalence is expected to increase due to demographic change and the growing importance of non-communicable disease and injury. To date, many epidemiological studies have used simple dichotomous measures of disability, even though the WHOs International Classification of Functioning, Disability, and Health (ICF) provides a multi-dimensional framework of functioning. We aimed to examine associations of socio-economic status (SES) and social integration in 3 core domains of functioning (impairment, pain, limitations in activity and participation) and perceived health. We conducted a secondary analysis of representative cross-sectional data of the Swiss Health Survey 2007 including 10,336 female and 8,424 male Swiss residents aged 15 or more. Guided by a theoretical ICF-based model, 4 mixed effects Poisson regressions were fitted in order to explain functioning and perceived health by indicators of SES and social integration. Analyses were stratified by age groups (15–30, 31–54, ≥55 years). In all age groups, SES and social integration were significantly associated with functional and perceived health. Among the functional domains, impairment and pain were closely related, and both were associated with limitations in activity and participation. SES, social integration and functioning were related to perceived health. We found pronounced social inequalities in functioning and perceived health, supporting our theoretical model. Social factors play a significant role in the experience of health, even in a wealthy country such as Switzerland. These findings await confirmation in other, particularly lower resourced settings.

Study Protocol of the International Spinal Cord Injury (InSCI) Community Survey

Objective The Learning Health System for Spinal Cord Injury (LHS-SCI) is an initiative embedded in the World Health Organizations (WHOs) Global Disability Plan and requires the statistical collection of data on the lived experience of persons with SCI to consequently formulate recommendations and policies. The International Spinal Cord Injury (InSCI) community survey has been developed as an initial step to gain information about the lived experience of persons with SCI within and across diverse nations. Design InSCI is a multinational community survey based on the International Classification of Functioning, Disability and Health Core Sets for SCI and involves 28 countries from all six WHO regions. The study will be implemented in 2017. Overall aims, guiding principles on sampling strategies, data collection modes, and reminder management are described. Conclusions InSCI will be the first survey to be conducted simultaneously in many countries and in all six WHO world regions that identifies the factors associated with functioning, health, and well-being of persons living with SCI. Expected results of the survey will be used for the basis of conducting stakeholder dialogs for policy reforms designed to improve the functioning, health maintenance, and well-being of persons with SCI.