Cohort Profile of the International Spinal Cord Injury Community Survey Implemented in 22 Countries

Objectives: To detail the methodological features of the first International Spinal Cord Injury (InSCI) Community Survey by describing recruitment and data collection procedures, and to report on the recruitment results and basic characteristics of participants by country and income setting. Design: Cross-sectional survey. Setting: Community setting in 22 countries representing all 6 World Health Organization regions. Participants: Individuals (N = 12,591) with traumatic or non-traumatic spinal cord injury (SCI) aged over 18 years. Interventions: Not applicable. Main Outcome Measures: Recruitment and data collection procedures, recruitment results, and basic sociodemographic and lesion characteristics of participants. Results: Eight countries used predefined sampling frames and 14 countries applied convenience sampling for recruitment. Most countries recruited participants through specialized rehabilitation facilities, patient organizations, or acute and general hospitals. Modes of approaching potential participants depended on the sampling strategy and multiple response modes were offered to maximize participation. Contact rates ranged from 33% to 98%, cooperation rates ranged from 29% to 90%, and response rates ranged from 23% to 54%. The majority of participants were men (73%), the median age was 52 years (interquartile range, 40-63y), 60% had a partner, 8% reported that they were born in another country than where they were currently residing, and the median length of education was 12 years (interquartile range, 9-15y). Paraplegia was the main diagnosis (63%), traumatic etiologies were the major cause of injury (81%), and the median time since injury (TSI) was 9 years (interquartile range, 4-19y). Compared with participants from lower income settings, participants from higher income settings were over-represented and, in general, were older, more often diagnosed with tetraplegia, had a longer TSI, higher education, and were more often born in a country different than their current residence country. Conclusions: The successful implementation of the InSCI survey enables the comparison of the situation of individuals with SCI around the world and constitutes a crucial starting point for an international learning experience. (C) 2020 by the American Congress of Rehabilitation Medicin

Cost-effectiveness of cognitive-behavioral group therapy for dysfunctional fear of progression in chronic arthritis patients

Background Anxiety disorders are widespread in patients with chronic diseases such as rheumatoid arthritis (RA). This paper targets the cost-effectiveness analysis of a cognitive-behavioral group therapy (CBT) in comparison to a client-centered, supportive-experiential group therapy (SET) in arthritis patients with dysfunctional fear of progression. Methods From the societal perspective, direct costs were compared with the reduction of fear of progression over time. Means, their 95% confidence intervals (95% CI), the incremental cost-effectiveness graphic and the acceptability curve were obtained using 1000 non-parametric bootstrap replications. Results A total of 174 RA patients were included in the economic evaluation. The estimated means (95% CI) of direct costs and reduction of fear of progression were, respectively, €7945.34 (5075.59; 11335.08) and 0.25 (−0.48; 0.99) for patients in the SET and 5619.25 € (3950.67; 7708.52) and 0.94 (0.29; 1.62) for patients in the CBT. As the majority of the cost-effect pairs after bootstrap analysis were located in the southeast quadrant of the cost-effectiveness plane, the CBT can be considered a dominant intervention. Conclusion The main result of our study is the higher cost-effectiveness of CBT in comparison to SET in RA patients with dysfunctional fear of progressio

Two decades of the International Classification of Functioning, Disability and Health (ICF) in health research: a bibliometric analysis.

Introduction: We conducted a twenty-year bibliometric analysis of scientific literature, focusing on the trends of The International Classification of Functioning, Disability and Health (ICF) use in health research. Methods: We retrieved 3'467 documents published between 2002 and 2022, sourced from the Web of Science Core Collection database. We used the Bibliometrix and VoSviewer tools for descriptive analyses and data visualization. Results: Our findings indicate a significant increase in ICF application since 2011, with an average annual growth rate of 13.19%. Prominent contributions were observed globally, with notable outputs from the U.S., Canada, Germany, the Netherlands, and Switzerland. The Ludwig Maximilian University Munich, Swiss Paraplegic Research, and McMaster University authored a quarter of the documents (24.6%). Collaboration networks of countries and institutions revealed robust partnerships, particularly between Germany and Switzerland. "Rehabilitation" was the most frequently occurring keyword, although a thematic shift towards epidemiology, aging, and health-related quality of life was observed post-2020. While rehabilitation remained the primary thematic focus, literature post-2020 highlighted epidemiology as a growing area of interest. Conclusions: A steady increase in ICF-based research mirrors the rising interest in a biopsychosocial and person-centered approach to healthcare. However, the literature is primarily produced by high-resource countries, with underrepresentation from low and middle-resource countries, suggesting an area of future research to address this discrepancy

Use of professional home care in persons with spinal cord injury in Switzerland: a cross-sectional study

BACKGROUND Persons with spinal cord injury (SCI) living in the community often require care. The boundaries between professional home care and informal care are blurred, and it is unclear who the typical user of home care is. The objective of this study was to describe the characteristics of persons with SCI using professional home care in Switzerland, determine the frequency of home care visits, and investigate the association of sociodemographic factors, SCI-specific characteristics, secondary health conditions, and functional independence with the use of home care. METHODS We used cross-sectional data from the 2017 community survey of the Swiss Spinal Cord Injury Cohort Study (SwiSCI). Out of 3,959 eligible individuals 1294 completed the questionnaire and were included in the analysis (response rate 33%). Using descriptive statistics, differences between home care users and non-users as well as the frequency of home care visits were investigated. The association between sociodemographic factors, SCI-specific characteristics, secondary health conditions, functional independence and the use of home care was analyzed using multivariable logistic regression. Multiple imputation was used to account for missing data. RESULTS Of 1,294 participants, 280 (22%) used professional home care. The median weekly professional home care duration was 6 h (Q1 = 2, Q3 = 12). More home care was used in persons with lower functional independence (Odds ratio (OR) 0.30 per 10 unit decrease in the Spinal Cord Independence Measure, 95%-Confidence interval (CI) 0.24-0.37), fewer secondary health conditions (OR 0.96 per unit Spinal Cord Injury Secondary Conditions Scale, 95%-CI 0.94-0.99), tetraplegia (OR 2.77, 95%-CI 1.92-4.00), women (OR 2.42, 95%-CI 1.70-3.43), higher age (OR 1.22 per 10 years increase, 95%-CI 1.06-1.39), living alone (OR 2.48, 95%-CI 1.53-4.03), and those receiving support from an informal caregiver (OR 1.88, 95%-CI 1.27-2.77). CONCLUSIONS This is the first study to examine the use of professional home care from the perspective of persons with SCI in Switzerland. Lower functional independence strongly predicts increased home care use. The findings showed that professional home care complements informal care and is more likely to be used by individuals with SCI who live alone, have tetraplegia, and are female

Does cardiometabolic risk profile differ among individuals with traumatic and non-traumatic spinal cord injury (SCI): the evidence from the multicenter SCI cohort in Switzerland (SwiSCI).

STUDY DESIGN Longitudinal study. OBJECTIVE To explore whether individuals with traumatic spinal cord injury (TSCI) and non-traumatic SCI (NTSCI) experience different trajectories in changes of cardiometabolic disease (CMD) factors during initial rehabilitation stay. SETTING Multicenter Swiss Spinal Cord Injury Cohort (SwiSCI) study. METHODS Individuals without history of cardiovascular diseases were included. CMD factors and Framingham risk score (FRS) were compared between TSCI and NTSCI. Linear mixed models' analysis was employed to explore the trajectory in CMD factors changes over rehabilitation period and a multivariate linear regression analysis was used at discharge from inpatient rehabilitation to explore factors associated with CMD risk profile in TSCI and NTSCI. We performed age and sex-stratified analyses. RESULTS We analyzed 530 individuals with SCI (64% with TSCI and 36% NTSCI). The median age was 53 years (IQR:39-64) with 67.9% (n = 363) of the study cohort being male. The median rehabilitation duration was 4.4 months (IQR 2.4-6.4). At admission to rehabilitation, FRS (9.61 vs. 5.89) and prevalence of hypertension (33.16% vs. 13.62%), diabetes (13.68% vs. 4.06%), and obesity (79.05% vs. 66.67%) were higher in NTSCI as compared to TSCI, No difference was observed in cardiometabolic syndrome between the groups (around 40% in both groups). Overall, we observed longitudinal increases in total cholesterol, HDL-C and HDL/total cholesterol ratio, and a decrease in fasting glucose over the rehabilitation period. No differences in longitudinal changes in cardiovascular risk factors were observed between TSCI and NTSCI. CONCLUSIONS There was no deterioration in cardiometabolic risk factors over rehabilitation period, at discharge from initial rehabilitation stay. Both TSCI and NTSCI experienced high burden of cardiometabolic syndrome components with NTSCI experiencing more disadvantageous risk profile. The effectiveness of therapeutic and lifestyle/behavioral strategies to decrease burden of cardiometabolic disease and its components in early phase should be explored in future studies

Physical activity and cardiometabolic risk factors in individuals with spinal cord injury: a systematic review and meta-analysis.

Physical inactivity in individuals with spinal cord injury (SCI) has been suggested to be an important determinant of increased cardiometabolic disease (CMD) risk. However, it remains unclear whether physically active SCI individuals as compared to inactive or less active individuals have truly better cardiometabolic risk profile. We aimed to systematically review and quantify the association between engagement in regular physical activity and/or exercise interventions and CMD risk factors in individuals with SCI. Four medical databases were searched and studies were included if they were clinical trials or observational studies conducted in adult individuals with SCI and provided information of interest. The Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach was applied to rate the certainty of evidence. Of 5816 unique citations, 11 randomized clinical trials, 3 non-randomized trial and 32 cross-sectional studies comprising more than 5500 SCI individuals were included in the systematic review. In meta-analysis of RCTs and based on evidence of moderate certainty, physical activity in comparison to control intervention was associated with: (i) better glucose homeostasis profile [WMD of glucose, insulin and Assessment of Insulin Resistance (HOMA-IR) were - 3.26 mg/dl (95% CI - 5.12 to - 1.39), - 3.19 μU/ml (95% CI - 3.96 to - 2.43)] and - 0.47 (95% CI - 0.60 to - 0.35), respectively], and (ii) improved cardiorespiratory fitness [WMD of relative and absolute oxygen uptake relative (VO2) were 4.53 ml/kg/min (95% CI 3.11, 5.96) and 0.26 L/min (95% CI 0.21, 0.32) respectively]. No differences were observed in blood pressure, heart rate and lipids (based on evidence of low/moderate certainty). In meta-analysis of cross-sectional studies and based on the evidence of very low to low certainty, glucose [WMD - 3.25 mg/dl (95% CI - 5.36, - 1.14)], insulin [- 2.12 μU/ml (95% CI - 4.21 to - 0.03)] and total cholesterol [WMD - 6.72 mg/dl (95% CI - 13.09, - 0.34)] were lower and HDL [WMD 3.86 mg/dl (95% CI 0.66, 7.05)] and catalase [0.07 UgHb-1 (95% CI 0.03, 0.11)] were higher in physically active SCI individuals in comparison to reference groups. Based on limited number of cross-sectional studies, better parameters of systolic and diastolic cardiac function and lower carotid intima media thickness were found in physically active groups. Methodologically sound clinical trials and prospective observational studies are required to further elaborate the impact of different physical activity prescriptions alone or in combination with other life-style interventions on CMD risk factors in SCI individuals

Understanding the impact of brain disorders: Towards a 'horizontal epidemiology' of psychosocial difficulties and their determinants

Objective 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 patientreported 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 Objective 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 patientreported 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-sectionalThe PARADISE project is supported by the Coordination Theme 1 (Health) of the European Community’s FP7, Grant Agreement No. HEALTHF2- 2009-241572

Labor market costs for long-term family caregivers: the situation of caregivers of persons with spinal cord injury in Switzerland

Abstract Background Family members are key in the provision of care to persons facing disability. To undertake the role as caregivers, they face many costs, being the setback in the labor market one of the most relevant. Methods We analyze comprehensive data from long-term family caregivers of persons with spinal cord injury (SCI) in Switzerland. Using information about their working situation before and after becoming caregivers, we estimated the reduction in working hours and the associated income loss. Results On average, family caregivers reduced their working hours by about 23% (8.4 h per week), which has a monetary value of CHF 970 per month (EUR 845). Women, older caregivers, and less educated caregivers have a much higher opportunity cost in the labor market: CHF 995 (EUR 867), CHF 1,070 (EUR 932), and CHF 1,137 (EUR 990) respectively. In contrast, family members who care for a person that works have a much lower impact on their working status, CHF 651 (EUR 567). Interestingly, the reduction in their working time is only a third of the extra work they face as caregivers. Conclusion Health and social systems rely on the unpaid work of family caregivers. To guarantee their long-term involvement, family caregivers need to be recognized for their work and potentially compensated. Without family caregivers, it is very unlikely societies can cope with the increasing need for care, as professional services are limited and expensive