Detecting subgroups in social participation among individuals living with spinal cord injury:a longitudinal analysis of community survey data

STUDY DESIGN: Longitudinal community survey. OBJECTIVES: To determine subgroups in social participation of individuals living with spinal cord injury (SCI). SETTING: Community. METHODS: Data were collected in 2012 and 2017 as part of the community survey of the Swiss Spinal Cord Injury cohort. Participation was assessed using the 33-item Utrecht Scale of Evaluation of Rehabilitation-Participation evaluating frequency of, restrictions in and satisfaction with productive, leisure, and social activities. Linear mixed-effects model trees were used to distinguish subgroups in participation associated with sociodemographic and lesion characteristics. RESULTS: In all, 3079 observations were used for the analysis, of which 1549 originated from Survey 2012, 1530 from Survey 2017, and 761 from both surveys. Participants were mostly male (2012: 71.5%; 2017: 71.2%), aged on average 50 years (2012: 52.3; 2017: 56.5), with an incomplete paraplegia (2012: 37.5%; 2017: 41.8%) of traumatic origin (2012: 84.7%; 2017: 79.3%). There was limited within-person variation in participation over the 5-year period. Participation varied with age, SCI severity, education, financial strain, number of self-reported health conditions (SHCs), and disability pension level. Among modifiable parameters, the number of SHCs and disability pension level emerged as the most frequent partitioning variables, while education was most informative for participation in productive, leisure, and social activities. CONCLUSIONS: Long-term rehabilitation management and clinical practice should target people most prone to decreased participation in major life domains. Our study indicates that the alleviation of SHCs, engagement in further education, or adjusting disability pension level are promising areas to improve participation of persons living with SCI

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

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

Urological Management at Discharge from Acute Spinal Cord Injury Rehabilitation: A Descriptive Analysis from a Population-based Prospective Cohort.

Background There is limited epidemiological evidence describing contemporary neuro-urological management of persons with acute spinal cord injury (SCI). Objective To describe neurogenic lower urinary tract dysfunction (NLUTD) management at discharge from SCI rehabilitation. Design setting and participants The population-based Swiss Spinal Cord Injury (SwiSCI) cohort study prospectively collected data from 602 adults undergoing specialized postacute SCI rehabilitation from 2013 to 2020. The management strategy was based on the European Association of Urology (EAU) Guidelines on Neuro-Urology. Outcome measurements and statistical analysis Data were collected at discharge using the International SCI Lower Urinary Tract Function Basic Data Set. Multivariable logistic regression adjusting for demographics, SCI characteristics, and center, with inverse probability weighting accounting for sampling bias, was used to produce prevalence estimates and identify predictors of lower urinary tract symptoms (LUTS) and NLUTD management outcomes. Results and limitations At discharge (median time after SCI: 5.0 mo [Q1-Q3: 3.0-7.2]), the prevalence of LUTS or managed NLUTD was 82% (95% confidence interval [CI]: 79-85%). SCI completeness was the main predictor of LUTS and managed NLUTD. The risk of urinary incontinence was elevated in females (odds ratio 1.98 [95% CI: 1.18-3.32]) and with complete lesions (odds ratio 4.71 [95% CI: 2.52-8.81]). Voiding dysfunction was most commonly managed with intermittent catheterization (prevalence 39% [95% CI: 35-42%]), followed by indwelling catheterization (prevalence 22% [95% CI: 18-25%]). The prevalence of antimuscarinic or mirabegron use was 29% (95% CI: 26-33%). Urodynamic and renal function data were not collected. Conclusions Our population-based description of urological management in Swiss SCI centers utilizing the EAU Guidelines on Neuro-Urology may be used as a reference for evaluation in other settings. Data further indicate a need for sex-specific neuro-urological management research. Patient summary At discharge from spinal cord injury (SCI) rehabilitation, a majority of patients have lower urinary tract problems, especially those with complete SCI. Women have a higher risk of urinary incontinence

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 (alpha = 0.90) and Satisfaction scales (alpha = 0.90), but not for the Frequency scale (alpha = 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

BMJ Open

Introduction Study drop-out and attrition from treating clinics is common among persons with chronic health conditions. However, if attrition is associated with adverse health outcomes, it may bias or mislead inferences for health policy and resource allocation. Methods This retrospective cohort study uses data attained through the Swiss Spinal Cord Injury (SwiSCI) cohort study on persons with spinal cord injury (SCI). Vital status (VS) was ascertained either through clinic medical records (MRs) or through municipalities in a secondary tracing effort. Flexible parametric survival models were used to investigate risk factors for going lost to clinic (LTC) and the association of LTC with subsequent risk of mortality. Results 1924 individuals were included in the tracing study; for 1608 of these cases, contemporary VS was initially checked in the MRs. VS was ascertained for 704 cases of the 1608 cases initially checked in MRs; of the remaining cases (n=904), nearly 90% were identified in municipalities (n=804). LTC was associated with a nearly fourfold higher risk of mortality (HR=3.62; 95% CI 2.18 to 6.02) among persons with traumatic SCI. Extended driving time (ie, less than 30 min compared with 30 min and longer to reach the nearest specialised rehabilitation facility) was associated with an increased risk of mortality (HR=1.51, 95% CI 1.02 to 2.22) for individuals with non-traumatic SCI. Conclusion The differential risk of LTC according to sociodemographic and SCI lesion characteristics underscores the importance of accounting for attrition in cohort studies on chronic disease populations requiring long-term care. In addition, given the associated risk of mortality, LTC is an issue of concern to clinicians and policy makers aiming to optimise the long-term survival of community-dwelling individuals with traumatic SCI. Future studies are necessary to verify whether it is possible to improve survival prospects of individuals LTC through more persistent outreach and targeted care

Labor Market Integration of People with Disabilities:Results from the Swiss Spinal Cord Injury Cohort Study

OBJECTIVES: We aimed to describe labor market participation (LMP) of persons with spinal cord injury (SCI) in Switzerland, to examine potential determinants of LMP, and to compare LMP between SCI and the general population. METHODS: We analyzed data from 1458 participants of employable age from the cross-sectional community survey of the Swiss Spinal Cord Injury Cohort Study. Data on LMP of the Swiss general population were obtained from the Swiss Federal Statistical Office. Factors associated with employment status as well as the amount of work performed in terms of full-time equivalent (FTE) were examined with regression techniques. RESULTS: 53.4% of the participants were employed at the time of the study. Adjusted odds of being employed were increased for males (OR = 1.73, 95% CI 1.33-2.25) and participants with paraplegia (OR = 1.78, 95% CI 1.40-2.27). The likelihood of being employed showed a significant concave relationship with age, peaking at age 40. The relation of LMP with education was s-shaped, while LMP was linearly related to time since injury. On average, employment rates were 30% lower than in the general population. Males with tetraplegia aged between 40 and 54 showed the greatest difference. From the 771 employed persons, the majority (81.7%) worked part-time with a median of 50% FTE (IRQ: 40%-80%). Men, those with younger age, higher education, incomplete lesions, and non-traumatic etiology showed significantly increased odds of working more hours per week. Significantly more people worked part-time than in the general population with the greatest difference found for males with tetraplegia aged between 40 and 54. CONCLUSIONS: LMP of persons with SCI is comparatively high in Switzerland. LMP after SCI is, however, considerably lower than in the general population. Future research needs to show whether the reduced LMP in SCI reflects individual capacity adjustment, contextual constraints on higher LMP or both

Spinal Cord

STUDY DESIGN: Observational, population-based cohort study. OBJECTIVES: To evaluate the origin and contribution to excess of survival differences following non-traumatic spinal cord injury (NTSCI) using etiology as proxy for variation in underlying health condition. SETTING: Specialized rehabilitation centers in Switzerland. METHODS: Medical record data collected by the Swiss Spinal Cord Injury cohort (SwiSCI) study were linked with mortality information from the Swiss National Cohort. Considering contemporary theory and empirical evidence, a directed acyclic graph (DAG) was developed to formally evaluate causal differences among NTSCI etiologies, relative to traumatic SCI (TSCI). Statistical inference was contingent on hazard ratios (HRs) and marginal survival differences, derived using flexible parametric modeling. RESULTS: 3643 individuals (NTSCI = 1357; TSCI = 2286) diagnosed with SCI between 1990 and 2011 were included, contributing a cumulative 41,344 person-years and 1323 deaths. Test statistics confirmed DAG-dataset consistency. As compared to TSCI, mortality was elevated in all NTSCI etiological groups; malignant etiologies had the highest HRs (10; 95% CI, 8.0 to 14) followed by infection (2.6; 1.8 to 3.6) and vascular (2.5; 2.0 to 3.2) etiology groups. At the attained age of 55, the estimated reduction in survival among non-malignant etiologies was 9.4% (5.8 to 13) at 5 years and 17% (11 to 23) at 20 years. CONCLUSIONS: Causal differences in survival among NTSCI etiological groups are likely a result of chronic variation in health conditions. This study supports the development of long-term interdisciplinary management and policy for individuals with NTSCI, specific to etiology

Mortality of Patients Lost to Follow-Up in Antiretroviral Treatment Programmes in Resource-Limited Settings: Systematic Review and Meta-Analysis

BACKGROUND: The retention of patients in antiretroviral therapy (ART) programmes is an important issue in resource-limited settings. Loss to follow up can be substantial, but it is unclear what the outcomes are in patients who are lost to programmes. METHODS AND FINDINGS: We searched the PubMed, EMBASE, Latin American and Caribbean Health Sciences Literature (LILACS), Indian Medlars Centre (IndMed) and African Index Medicus (AIM) databases and the abstracts of three conferences for studies that traced patients lost to follow up to ascertain their vital status. Main outcomes were the proportion of patients traced, the proportion found to be alive and the proportion that had died. Where available, we also examined the reasons why some patients could not be traced, why patients found to be alive did not return to the clinic, and the causes of death. We combined mortality data from several studies using random-effects meta-analysis. Seventeen studies were eligible. All were from sub-Saharan Africa, except one study from India, and none were conducted in children. A total of 6420 patients (range 44 to 1343 patients) were included. Patients were traced using telephone calls, home visits and through social networks. Overall the vital status of 4021 patients could be ascertained (63%, range across studies: 45% to 86%); 1602 patients had died. The combined mortality was 40% (95% confidence interval 33%-48%), with substantial heterogeneity between studies (P<0.0001). Mortality in African programmes ranged from 12% to 87% of patients lost to follow-up. Mortality was inversely associated with the rate of loss to follow up in the programme: it declined from around 60% to 20% as the percentage of patients lost to the programme increased from 5% to 50%. Among patients not found, telephone numbers and addresses were frequently incorrect or missing. Common reasons for not returning to the clinic were transfer to another programme, financial problems and improving or deteriorating health. Causes of death were available for 47 deaths: 29 (62%) died of an AIDS defining illness. CONCLUSIONS: In ART programmes in resource-limited settings a substantial minority of adults lost to follow up cannot be traced, and among those traced 20% to 60% had died. Our findings have implications both for patient care and the monitoring and evaluation of programmes