Neurogenic Lower Urinary Tract Dysfunction in the First Year After Spinal Cord Injury: A Descriptive Study of Urodynamic Findings.

PURPOSE: We aimed to provide a real-world description of neurogenic lower urinary tract dysfunction within the first year after spinal cord injury with a focus on unfavorable urodynamic parameters that are associated with urological morbidity. MATERIALS AND METHODS: Urodynamic investigations from 97 patients with traumatic or ischemic acute spinal cord injury and managed according to the European Association of Urology Guidelines on Neuro-Urology were analyzed at a single university spinal cord injury center at 1 month, 3 months, 6 months, and 12 months after injury. Unfavorable urodynamic parameters were defined as detrusor overactivity in combination with detrusor sphincter dyssynergia, maximum storage detrusor pressure of 40 cm H2O or higher, bladder compliance less than 20 mL/cm H2O, and vesicoureteral reflux of any grade. RESULTS: One or more unfavorable urodynamic parameter was observed in 87 out of 97 patients (90%) within the first year after spinal cord injury. Eighty-eight percent of the patients showed detrusor overactivity with detrusor sphincter dyssynergia, 39% a maximum storage detrusor pressure of 40 cm H2O or higher, and 7% vesicoureteral reflux. No patient developed a low-compliance bladder. CONCLUSIONS: Using a standardized urodynamic follow-up schedule, we found unfavorable urodynamic parameters in a majority of the population within the first year after spinal cord injury. As early treatment based on urodynamic findings might reduce the risk of deterioration of upper and lower urinary tract function, thereby improving long-term outcomes, there is need for further research regarding recommendations for a urodynamic follow-up schedule during the first year after spinal cord injury.

Temporal development of unfavourable urodynamic parameters during the first year after spinal cord injury.

OBJECTIVES: To describe the temporal development of and risk factors for the occurrence of unfavourable urodynamic parameters during the first year after spinal cord injury (SCI). PATIENTS AND METHODS: This population-based longitudinal study used data from 97 adult patients with a single-event traumatic or ischaemic SCI who underwent video-urodynamic investigation (UDI) at a university SCI centre. The first occurrences of unfavourable urodynamic parameters (detrusor overactivity combined with detrusor sphincter dyssynergia [DO-DSD], maximum storage detrusor pressure ≥40 cmH2 O, bladder compliance <20 mL/cmH2 O, vesico-ureteric reflux [VUR] and any unfavourable parameter [composite outcome]) were evaluated using time-to-event analysis. RESULTS: The majority of the population (87/97 [90%]) had at least one unfavourable urodynamic parameter. Most unfavourable urodynamic parameters were initially identified during the 1- or 3-month UDI, including 92% of the DO-DSD (78/85), 82% of the maximum storage pressure ≥40 cmH2 O (31/38), and 100% of the VUR (seven of seven) observations. No low bladder compliance was observed. The risk of DO-DSD was elevated in patients with thoracic SCI compared to those with lumbar SCI (adjusted hazard ratio [aHR] 2.38, 95% confidence interval [CI] 1.16-4.89). Risk of maximum storage detrusor pressure ≥40 cmH2 O was higher in males than females (aHR 8.33, 95% CI 2.51-27.66), in patients with a cervical SCI compared to those with lumbar SCI (aHR 14.89, 95% CI 3.28-67.55), and in patients with AIS Grade B or C compared to AIS Grade D SCI (aHR 6.17, 95% CI 1.78-21.39). No risk factors were identified for the composite outcome of any unfavourable urodynamic parameter. CONCLUSIONS: The first UDI should take place within 3 months after SCI as to facilitate early diagnosis of unfavourable urodynamic parameters and timely treatment. Neuro-urological guidelines and individualised management strategies for patients with SCI may be strengthened by considering sex and SCI characteristics in the scheduling of UDIs.

Incidence and Risk Factors of Pneumonia in Individuals With Acute Spinal Cord Injury: A Multi-national, Multi-center, Prospective Cohort Study.

OBJECTIVE: To describe the occurrence of pneumonia in individuals with acute spinal cord injury (SCI) and identify its key predictors. DESIGN: Multi-centric, longitudinal cohort study. SETTING: 10 specialized SCI rehabilitation units in Europe and Australia. PARTICIPANTS: Eligible were 902 men and women with acute SCI, aged 18 years or older, with cervical or thoracic lesions and not dependent on 24-hour mechanical ventilation; 503 participated in the study (N=503). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: We assessed demographics and lesion related parameters at study entry, and any pneumonia events throughout inpatient rehabilitation. Respiratory function, decubitus, and urinary tract infections were assessed at 1, 3, and 6 months post injury as well as at discharge from inpatient rehabilitation. Time to event (pneumonia) analyses were done using the Kaplan-Meier method, and potential predictors for pneumonia were analyzed with multivariable survival models. RESULTS: Five hundred three patients with SCI were included, with 70 experiencing at least 1 pneumonia event. 11 participants experienced 2 or more events during inpatient rehabilitation. Most events occurred very early after injury, with a median of 6 days. Pneumonia risk was associated with tetraplegia (hazard ratio [HR]=1.78; 95% confidence interval [CI] 1.00-3.17) and traumatic etiology (HR=3.75; 95% CI 1.30-10.8) American Spinal Injury Impairment Scale (AIS) A (HR=5.30; 95% CI 2.28-12.31), B (HR=4.38; 95% CI 1.77-10.83), or C (HR=4.09; 95% CI 1.71-9.81) lesions. For every 10 cmH2O increase in inspiratory muscle strength, pneumonia risk was reduced by 13% (HR=0.87; 95% CI 0.78-0.97). CONCLUSION: Pneumonia is a major complication after SCI with the highest incidence very early after injury. Individuals with traumatic or AIS A, B, or C tetraplegia are at highest risk for pneumonia.

Unplanned hospital admissions due to secondary health conditions after spinal cord injury: a population-based description of determinants of length of stay.

STUDY DESIGN: Population-based prospective study. OBJECTIVES: To provide a population-based description of length of stay (LOS) and person-related risk factors following unplanned hospital admission due to a secondary health condition (SHC) in persons with spinal cord injury (SCI). SETTING: Specialized SCI hospital and rehabilitation center in Switzerland. METHODS: Descriptive analysis of LOS using routine clinical data of persons with SCI, who were acutely hospitalized between 01.01.2017-30.06.2018. Multivariable regression analysis was used to derive marginal predictions of LOS by acute SHCs and person characteristics. RESULTS: The study included 183 persons, 83% were male, and the median age was 57 years (interquartile range, IQR, 49-67 years). SCI cause was traumatic in 160 (88.4%) cases, 92 (50.3%) were persons with tetraplegia, 147 (80.3%) were classified as motor complete lesions (American Spinal Injury Association Impairment Scale (AIS) A or B) and median time since injury (TSI) was 24 (IQR 13-34) years. Median LOS was 19 (IQR 9-39) days, varying from 74 (IQR 39-92) days for pressure ulcers, 13 (IQR 8-24) days for urinary tract infections (UTI), to 27 (IQR 18-47) days for fractures. LOS was prolonged in persons with multiple co-morbidities or those developing complications during hospitalization. Sex, SCI etiology and lesion level were not associated with LOS. CONCLUSIONS: This population-based description identified substantial variation in LOS between acute SHCs and clinical complications as the main, potentially modifiable, person-related risk factors for extended hospital stay.

Sex differences in urological management during spinal cord injury rehabilitation: results from a prospective multicenter longitudinal cohort study.

STUDY DESIGN: Prospective, multicenter, longitudinal cohort study. OBJECTIVES: To describe female-male differences in first-line urological management during spinal cord injury (SCI) rehabilitation. SETTING: Inpatient specialized post-acute SCI rehabilitation in Switzerland. METHODS: Data on bladder storage medication (antimuscarinic and beta-3 agonist) use, suprapubic catheter placement, demographic and SCI characteristics was collected within 40 days of SCI and at rehabilitation discharge from May 2013-September 2021. Prevalence and indicators of bladder storage medication and suprapubic catheter use at discharge were investigated with sex-stratified descriptive and logistic regression analyses. RESULTS: In 748 patients (219 females, 29%), bladder storage medication use at discharge had a prevalence of 24% (95% CI: 18-29%) for females and 30% (95% CI: 26-34%) for males and was indicated by cervical AIS grade A, B, C and traumatic SCI in both sexes. Thoracic AIS grade A, B, C SCI (males), and lumbar/sacral AIS grade A, B, C SCI (females) predicted higher odds of bladder storage medication use (SCI characteristic*sex interaction, p < 0.01). Prevalence of suprapubic catheter use at discharge was 22% (95% CI: 17-28%) for females and 17% (95% CI: 14-20%) for males. Suprapubic catheter use was indicated by cervical AIS grade A, B, C SCI, and age >60 in both sexes. Females with thoracic grade A, B, C SCI tended to have higher odds of suprapubic catheter use (SCI characteristic*sex interaction, p = 0.013). CONCLUSIONS: We identified sex differences in urological management especially in persons with AIS grade C or higher sub-cervical SCI. There is scope for well-powered, female-specific research in SCI in order to understand the underlying mechanisms and support patient-tailored management.

Untangling the role of social relationships in the association between caregiver burden and caregiver health: an observational study exploring three coping models of the stress process paradigm.

BACKGROUND: Caregivers health is often at risk due to the detrimental effects of caregiver burden. It is therefore vital to identify strategies and resources, which ensure the safeguarding of caregivers' health, whilst also enabling caregivers to continue providing high quality long-term care to care-receivers. The objective of this study is therefore to examine the moderating and mediating role of different social relationship constructs (social networks, social support, relationship quality, and loneliness) in the relationship between subjective caregiver burden and health, by exploring different coping models of the stress process paradigm, namely the stress buffering, social deterioration and counteractive models. METHODS: Longitudinal survey data from 133 couples of caregiving romantic partners and persons with spinal cord injury, living in Switzerland were used. We employed multivariable regression analysis with the inclusion of interaction terms to explore moderation effects of social relationships (i.e. stress buffering model), and path analysis to explore mediation effects (i.e. social deterioration vs. counteractive model) of social relationships on the association between subjective caregiver burden and health. Health was operationalised using the following outcomes: mental health, vitality, bodily pain and general health. RESULTS: Social support and relationship quality were found to buffer the negative effects of subjective caregiver burden on mental health. Mediating effects of social relationships were observed for mental health (indirect effect -0.25, -0.42- -0.08) and vitality (indirect effect -0.20, -0.37- -0.03), providing support for the deterioration model. Loneliness was found to be a particularly important construct on the pathway from caregiver burden to health. CONCLUSION: Our study highlights the potential of social support and relationship quality to override the negative consequences of caregiver burden on mental health and vitality. Our evidence thus supports the advance of interventions that seek to improve qualitative aspects of social relationships, especially in caregivers experiencing a high subjective caregiver burden.

Labor market participation of individuals with spinal cord injury living in Switzerland: determinants of between-person differences and counterfactual evaluation of their instrumental value for policy.

STUDY DESIGN: Longitudinal, population-based survey. OBJECTIVE: To examine determinants of between-person differences in labor market participation of individuals with spinal cord injury (SCI) living in Switzerland and their potential importance for policy. SETTING: Community. METHODS: Longitudinal information on labor market participation (i.e., paid work or not) was obtained from 1198 and 1035 individuals of working-age participating in the 2012 and 2017 SwiSCI community survey, respectively. Determinants of between-person variation in labor market participation were examined using mixed effects logistic regression, controlling for within-person variation. Employment rates were predicted using counterfactual data for modifiable determinants. RESULTS: The employment rate was 56% for the 2012 and 61% for the 2017 survey. Labor market participation was affected mostly by static (sex, nationality, SCI severity), temporal (age), dynamic (education level, functional independence, chronic pain), and policy-related (general pension, disability pension level) determinants. Counterfactual (what-if) predictions indicated the highest improvement of employment rates for strategies that increase functional independence (up to 6% increase), foster education (5%), reduce chronic pain (2%), or promote a shift to partial disability pensions (15%). CONCLUSIONS: Between-person variation in labor market participation of persons with SCI is influenced by various temporal, static, dynamic, and policy-related determinants. Our results suggest that policy strategies aimed at enhancing the employment rate of the Swiss SCI population may particularly invest in programs promoting functional independence, education, and partial pension levels that are more adequate for ensuring sustainable employment.

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.

Etiology-specific variation in survival following non-traumatic spinal cord injury: a causal inference approach using data from a population-based cohort.

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.

Self-reports of treatment for secondary health conditions: results from a longitudinal community survey in spinal cord injury.

STUDY DESIGN: Longitudinal community survey. OBJECTIVES: To describe the treatment for secondary health conditions as reported by individuals living with spinal cord injury (SCI) and to identify potential predictors of treatment. SETTING: Community (people with SCI living in Switzerland). METHODS: Data on the frequency, severity, and treatment of 14 common health conditions (HCs) in the past three months were collected in two surveys by the Swiss Spinal Cord Injury (SwiSCI) cohort study, in 2012 and 2017. Variation in treatment was analyzed using descriptive statistics, by survey period and severity of HC. Conditional multilevel random-effects logistic regression was used to describe differences in self-reported treatment with respect to sociodemographic and socioeconomic factors in addition to SCI characteristics and severity and number of HCs. RESULTS: Severe or chronic autonomic dysreflexia and sleep problems showed in the self-report as the HCs with the lowest occurrence/frequency of treatment. Across all HCs, higher age, shorter time since injury, the total number of HCs, and level of severity were associated with a higher propensity for reporting treatment. Individuals with severe financial difficulties additionally had 1.40 greater odds of receiving treatment (95% CI 1.09-1.80). CONCLUSIONS: This study identified systematic differences in the report of HCs and their treatment within the Swiss SCI community. This study thus provides a basis to guide future research on identifying targets of intervention for long-term clinical management of SCI.

Optimizing clinical trial design using prospective cohort study data: a case study in neuro-urology.

STUDY DESIGN: Simulations using data from a prospective cohort study. OBJECTIVES: To illustrate how prospective cohort data can be employed in randomized controlled trial (RCT) planning to assess feasibility and operational challenges, using TASCI (Transcutaneous tibial nerve stimulation in patients with Acute Spinal Cord Injury to prevent neurogenic detrusor overactivity: a nationwide randomized, sham-controlled, double-blind clinical trial) as a case study. SETTING: Spinal cord injury (SCI) rehabilitation centers in Switzerland. METHODS: TASCI is nested in the multicenter Swiss Spinal Cord Injury Cohort Study (SwiSCI), which prospectively includes patients with acute SCI. In simulations, data from 640 patients, collected by SwiSCI, were used to investigate different scenarios of patient eligibility and study consent, as well as the performance of the randomization list. Descriptive analysis was used to describe the population of interest and the simulation results; multivariable logistic regression analysis was performed to identify predictors of discharge within the TASCI intervention time period. RESULTS: The recruitment target of 114 patients is obtainable within the originally envisioned 3-year time period under the most favorable recruitment scenario examined. The distribution of the primary prognostic factor produced imbalance in the randomization lists and informed further discussion of the cut-off values used in stratification. Influxes of patients resulted in overlapping intervention periods for multiple participants, which guided resource allocation. Early discharge was related to the primary prognostic factor and study center, but is only anticipated in about 8% of participants. CONCLUSIONS: Prospective cohort data are a very valuable resource for planning RCTs.

Poor adherence to influenza vaccination guidelines in spinal cord injury: results from a community-based survey in Switzerland.

STUDY DESIGN: Cross-sectional survey. OBJECTIVES: To evaluate the annual influenza vaccination coverage rate (IVCR) among community-dwelling individuals with spinal cord injury (SCI). SETTING: SCI community in Switzerland. METHODS: Participants were responders to the influenza vaccination question (n = 492) in the 2012 community survey of the Swiss Spinal Cord Injury (SwiSCI) cohort study. IVCR of SwiSCI participants were compared to the normative Swiss population, sampled in the Swiss Health Survey of 2012 using direct standardization, logistic regression standardization, and a genetic matching approach to control for differences in age, sex, and quarterly period of survey response. RESULTS: Individuals with SCI showed higher crude (26%, 95% confidence interval (CI): 22-30%) and age- and sex-standardized (24%, CI: 23-24%) IVCR than observed in the general population (15% CI, 14-15%). The adjustment for age and sex as well as quarterly period of survey response showed that the standardized IVCR of individuals with SCI (17%; CI: 12-23%) approached that of the general population. Low IVCR of about 10% were found among individuals with SCI younger than 45 years. IVCR were similar between men and women and between individuals with incomplete and complete paraplegia and tetraplegia. CONCLUSION: The IVCR in individuals with chronic SCI was not higher than in the general population and much lower than guidelines recommend. The improvement of the IVCR is an important target of health policy in SCI in Switzerland as to reduce the evidenced excess burden in respiratory-disease related morbidity and mortality.

Does engagement in productive activities affect mental health and well-being in older adults with a chronic physical disability? Observational evidence from a Swiss cohort study.

Objectives: To investigate type and load of productive activities as potential determinants of mental health and well-being in elderly persons with a physical disability.Methods: We used data from a Swiss population-based sample of 314 adults at or past the legal retirement age (65 for men, 64 for women) who live with a chronic physical disability, spinal cord injury. Engagement in housework, volunteering, and paid work were dichotomized (no; some engagement) and three groups of engagement types were constructed (none; housework only; volunteering and/or paid work). Load of engagement was appraised using a sumscore on the overall frequency as well as the total number of performed activities. We used regression modelling to draw causal inference regarding the associations of type and load of engagement with general mental health (Mental Health Inventory, SF-36), self-reported depression (Self-Administered Comorbidity Questionnaire, SCQ), and well-being (WHOQoL-BREF items).Results: Engagement in volunteering was positively related to well-being. Persons engaged only in housework reported better well-being and lower prevalence of depression than non-engaged persons, however, persons engaged in volunteering or paid work reported the highest well-being and the lowest prevalence of depression. The productivity sumscore tertiles and the number of performed activities were both positively linked to well-being and negatively linked to depression, while their association with general mental health was less pronounced.Conclusion: Strengthening the engagement in productive activities among the elderly with a chronic physical disability is suggested as a promising strategy to promote well-being and reduce the prevalence of depression.

Comparison of All-Cause and Cause-Specific Mortality of Persons with Traumatic Spinal Cord Injuries to the General Swiss Population: Results from a National Cohort Study.

BACKGROUND: Traumatic spinal cord injuries (TSCI) are a neurological condition associated with reduced well-being, increased morbidity and reductions in life expectancy. Estimates of all-cause and cause-specific mortality can aid in identifying targets for prevention and management of contributors for premature mortality. OBJECTIVES: To compare all-cause and cause-specific rates of mortality to that of the Swiss general population; to identify differentials in risk of cause-specific mortality according to lesion characteristics. METHODS: All-cause and cause-specific standardized mortality ratios (SMRs) were calculated using data from the Swiss Spinal Cord Injury cohort study. Cause-specific subhazard ratios were estimated within a competing risk framework using flexible parametric survival models. RESULTS: Between 1990 and 2011, 2,492 persons sustained a TSCI, of which 379 died. Persons with TSCI had a mortality rate more than 2 times higher than that of the Swiss general population (SMR 2.32; 95% CI 2.10-2.56). Tetraplegic lesions were associated with an increased risk of mortality due to respiratory and cardiovascular diseases, infections, and accidents. Cause-specific SMRs were notably elevated for SCI-related conditions such as urinary tract infections (UTIs) and septicemia. CONCLUSIONS: Elevated SMRs due to cardiovascular disease, UTIs and septicemia-related mortality suggest the need for innovation when managing associated secondary health conditions.

Bladder emptying method is the primary determinant of urinary tract infections in patients with spinal cord injury: results from a prospective rehabilitation cohort study.

OBJECTIVE: To understand the occurrence of and risk factors for urinary tract infections (UTIs) in patients with spinal cord injury (SCI) undergoing specialized SCI rehabilitation in Switzerland. PATIENTS AND METHODS: This study used data collected from 369 patients, who participated in a nationwide rehabilitation cohort for SCI in Switzerland between 2013 and 2017. Information on UTIs as well as their potential determinants, including demographics, lesion characteristics, and time-updated data on functional independence and bladder management, was used. Multivariable regression methods were applied to perform a time-updated evaluation of determinants of UTI risk. RESULTS: The crude incidence rate (IR) of UTIs was 0.55 UTIs per 100 person-days (95% confidence interval [CI] 0.49-0.62), the cumulative IR was 43%, and the median length of stay was 122 days. The bladder emptying method at discharge was largely determined by 28 days after admission. Among those using indwelling or assisted intermittent catheterization (IC), the likelihood of self-IC at discharge was positively related to the level of self-care independence, negatively related to age at injury, and lower in women than men. Catheter users consistently had higher adjusted IRs for UTI than spontaneous voiders. The IR ratios were: indwelling catheter: 5.97 (95% CI 2.63-13.57); assisted IC: 6.05 (95% CI 2.63-13.94); self-IC: 5.16 (95% CI 2.31-11.52); test for differences across catheter groups: P = 0.82. Lesion severity and previous UTI had additional but smaller effect sizes. CONCLUSIONS: Bladder emptying method was identified as the main risk factor for UTI in patients with SCI. As spontaneous voiders had the lowest UTI rate, further research is warranted to reduce voiding dysfunction, for instance using neuromodulation procedures.

Social inequalities in the burden of care: a dyadic analysis in the caregiving partners of persons with a physical disability.

BACKGROUND: Socioeconomic position (SEP) is an important contextual factor in the Stress Process Model of caregiving. However, the basic assumption that low SEP is associated with greater caregiver burden has so far lacked empirical support. The objective of this study was to investigate social inequalities in the caregiver burden among caregiving partners of persons with a physical disability, i.e., spinal cord injury (SCI), applying a dyadic approach. More specifically, we investigated 1) the association of the caregivers' SEP with caregiver burden ('actor effect'); 2) the association of the care-receivers' SEP with caregiver burden ('partner effect'), and 3) potential mediators of the association between SEP and caregiver burden. METHODS: Cross-sectional survey data from 118 couples of persons with SCI and their partners living in Switzerland was used. We firstly employed logistic regression to investigate the actor and partner effects of SEP on objective (hours of caregiving) and subjective caregiver burden (Zarit Burden Interview). We additionally used structural equation modelling to explore whether unfulfilled support needs, psychosocial resources and the care-receivers health status mediated the association between SEP and caregiver burden. SEP was operationalized by household income, education, subjective social position, financial strain and home ownership. RESULTS: We observed a consistent trend towards higher objective and subjective burden in lower SEP groups. Caregivers with higher subjective social positon and home ownership indicated lower subjective burden, and caregivers with higher education and absence of financial strain reported lower objective burden. Further evidence suggested a partner effect of SEP on caregiver burden, whereby objective caregiver burden was reduced in couples where the care-receiver had a higher educational level. The negative association between SEP and subjective burden was partially mediated by the unfulfilled support needs and deprived psychological resources of the caregiver, and the poor health status of the care-receiver. Similar mediation effects were not supported for objective burden. CONCLUSIONS: Our study, in the context of SCI, provides support for the contextual role of SEP in the Stress Process Model of caregiving. To reduce subjective caregiver burden, policy programs may target the strengthening of psychosocial resources, or the improvement of access to support services for caregivers with low SEP.

Participation in People Living With Spinal Cord Injury in Switzerland: Degree and Associated Factors.

OBJECTIVE: To describe different domains of participation such as productive, leisure and social activities and describe sociodemographic and spinal cord injury (SCI)-related characteristics that are associated with participation in these domains in a large sample of community-dwelling individuals with SCI in Switzerland. DESIGN: Cross-sectional population-based survey within the Swiss Spinal Cord Injury Cohort Study. Participation in major life domains was measured by the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation). Univariable unconditional analysis and unbiased recursive partitioning were used to identify the predominant associations of sociodemographic and SCI-related characteristics with multiple dimensions of participation. SETTING: Community. PARTICIPANTS: Swiss residents aged 16 years or older and living with traumatic or nontraumatic SCI (N=1549). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: The USER-Participation, a 32-item self-report questionnaire with 3 scales (Frequency, Restrictions, and Satisfaction) to assess key domains of participation (productive, leisure, social). RESULTS: Frequency (median 34.5 out of 100) in productive, outdoor leisure, and social activities was reduced with distinctive perceived restrictions in work and education, sports, and partner relationships. Domestic leisure activities (65.4%) and maintaining social relationships (76.1%) were those activities most often performed and with least perceived restrictions. Participants were generally satisfied with their current daily life activities. Lower scores across all participation scales were associated with more severe SCI, higher age, being female, not having a partner, and lower level of education. CONCLUSIONS: This study provides a thorough analysis of participation in major life domains of individuals with SCI in Switzerland. Different risk groups for reduced levels in participation in productive, leisure, and social activities were identified. This population-based evidence is instrumental to the better targeting of rehabilitation and policy interventions that aim to improve community participation.

Differential survival after traumatic spinal cord injury: evidence from a multi-center longitudinal cohort study in Switzerland.

STUDY DESIGN: Observational cohort study. OBJECTIVES: To understand differentials in the force of mortality with increasing time since injury according to key spinal cord injury (SCI) characteristics. SETTING: Specialized rehabilitation centers within Switzerland. METHODS: Data from the Swiss Spinal Cord Injury (SwiSCI) cohort study were used to model mortality in relation to age, sex, and lesion characteristics. Hazard ratios (HRs) and adjusted survival curves were estimated using flexible parametric survival models of time since discharge from first rehabilitation to death or 30 September 2011, whichever came first. RESULTS: 2 421 persons were included that incurred a new TSCI between 1990 and 2011, contributing a total time-at-risk of 19,604 person-years and 376 deaths. Controlling for attained age, sex, decade, and etiology, there was more than a four-fold higher risk of mortality for complete tetraplegia compared to incomplete paraplegia (HR = 4.27; 95% CI 2.72 to 6.69). Survival estimates differed according to SCI characteristics, with differentials steadily increasing with time since injury. CONCLUSION: This study provides evidence of disparities in mortality and survival outcomes according to SCI characteristics that increases with increasing time since injury. These results lend support to the hypothesis of a progressive and disproportionate accumulation of allostatic load according to SCI characteristics. Future research should investigate cause-specific mortality for insight into potentially modifiable secondary health conditions contributing to these disparities.

Mortality and longevity after a spinal cord injury: systematic review and meta-analysis.

BACKGROUND/AIMS: Mortality and longevity studies of spinal cord injury (SCI) are essential for informing healthcare systems and policies. This review evaluates the current evidence among people with SCIs worldwide in relation to the WHO region and country income level; demographic and lesion characteristics; and in comparison with the general population. METHODS: A systematic review of relevant databases for original studies. Pooled estimates were derived using random effects meta-analysis, restricted to traumatic SCI. RESULTS: Seventy-four studies were included. In-hospital mortality varied, with pooled estimates of 24.1% (95% confidence interval (CI) 14.1-38.0), 7.6% (95% CI 6.3-9.0), 7.0% (95% CI 1.5-27.4), and 2.1% (95% CI 0.9-5.0) in the WHO regions of Africa, the Americas, Europe and Western Pacific. The combined estimate for low- and middle-income countries was nearly three times higher than for high-income countries. Pooled estimates of first-year survival were 86.5% (95% CI 75.3-93.1), 95.6% (95% CI 81.0-99.1), and 94.0% (95% CI 93.3-94.6) in the Americas, Europe and Western Pacific. Pooled estimates of standardized mortality ratios in tetraplegics were 2.53 (2.00-3.21) and 2.07 (1.47-2.92) in paraplegics. CONCLUSION: This study found substantial variation in mortality and longevity within the SCI population, compared to the general population, and between WHO regions and country income level. Improved standardization and quality of reporting is needed to improve inferences regarding the extent to which mortality outcomes following an SCI are related to healthcare systems, services and policies.

Participation rates, response bias and response behaviours in the community survey of the Swiss Spinal Cord Injury Cohort Study (SwiSCI).

BACKGROUND: Surveying persons with disabilities is challenging, as targeted subjects may experience specific barriers to survey participation. Here we report on participation rates and response behaviour in a community survey of people with spinal cord injury (SCI) in Switzerland. The cross-sectional survey was implemented as part of the Swiss Spinal Cord Injury Cohort Study (SwiSCI) and represents the largest population-based SCI survey in Europe including nearly 2000 persons. Design features to enhance participation rates included the division of the questionnaire volume over three successive modules; recurrent and mixed-mode reminding of non-responders; and mixed-mode options for response. METHODS: We describe participation rates of the SwiSCI community survey (absolute and cumulative cooperation, contact, response, and attrition rates) and report on response rates in relation to recruitment efforts. Potential non-response bias and the association between responders' characteristics and response behaviour (response speed: reminding until participation; response mode: paper-pencil vs. online completion) were assessed using regression modelling. RESULTS: Over the successive modules, absolute response rates were 61.1, 80.6 and 87.3% which resulted in cumulative response rates of 49.3 and 42.6% for the second and third modules. Written reminders effectively increased response rates, with the first reminder showing the largest impact. Telephone reminders, partly with direct telephone interviewing, enhanced response rate to the first module, but were essentially redundant in subsequent modules. Non-response to the main module was related to current age, membership of Swiss Paraplegic Association (SPA) and time since injury, but not to gender, lesion level and preferred language of response. Response speed increased with household income, but was not associated to other sociodemographic factors, lesion characteristics or health indicators. We found significant associations between online completion and male gender, younger age, higher education, higher income, SPA membership, tetraplegia, longer time since injury, higher quality of life, and more participation restrictions. CONCLUSION: In this sample with little non-response bias, recurrent and mixed-mode reminding and mixed-mode options for response were key features of optimizing survey design.