Spinal Cord Injury Cohort Study Research Articles

Reciprocal association between pain and quality of life after newly acquired spinal cord injury.

Pain is highly prevalent in spinal cord injury (SCI) and a key determinant of quality of life (QoL). This is the first study to examine reciprocal associations between pain and QoL in patients undergoing their first inpatient rehabilitation after SCI. Longitudinal data, with three measurement time points (1month and 3months after SCI onset, and at discharge from inpatient rehabilitation) from the Inception Cohort of the Swiss Spinal Cord Injury Cohort Study. Participants were 381 individuals aged ≥ 16years with a newly diagnosed traumatic or non-traumatic SCI. 75.1% were male and the average age was 53.2years. Random intercept cross-lagged panel models were conducted to examine the reciprocal association between pain intensity and QoL, as measured with the International SCI QoL Basic Data Set three individual items (satisfaction with life, physical health, and psychological health) and total score (mean of the three individual items). Both item and total QoL scores increased over time. 1month: 5.3 (SD = 2.7), 3months: 5.9 (SD = 2.3), discharge: 6.6 (SD = 2.0). Participants reported relatively low levels of pain intensity that remained stable over the course of inpatient rehabilitation. 1month: 2.7 (SD = 2.3), 3months: 2.6 (SD = 2.4), discharge: 2.7 (SD = 2.5). There were no significant cross-lagged associations between QoL and pain intensity across time. Results indicate that pain intensity does not predict changes in QoL during first rehabilitation, and vice versa. Associations between pain intensity and QoL reported by previous studies may be attributable to individual characteristics and timely events that simultaneously influence pain and QoL.

Revisiting functioning recovery in persons with spinal cord injury undergoing first rehabilitation: Trajectory and network analysis of a Swiss cohort study.

Information about an individual's functioning and its longitudinal development is key to informing clinical rehabilitation. However, the description and understanding of the detailed longitudinal course of functioning, i.e., functioning trajectories, is rare in the current SCI literature. The aim of this study was to re-estimate previously identified functioning trajectories of individuals with spinal cord injury (SCI) undergoing initial rehabilitation in Switzerland using trajectory analysis, and to identify highly influential functioning domains that could become trajectory-specific targets for clinical interventions using network analysis. The study was based on data from the Swiss SCI Cohort Study and included individuals with SCI (N = 1099) who completed their rehabilitation in one of four collaborating centers between May 2013 and March 2022. For the trajectory analysis, functioning was operationalized using the total sum score of the Spinal Cord Independence Measure version III (SICM III), which was assessed at up to four time points (T1-T4) during rehabilitation. For the network analysis, individual SCIM III items were used to operationalize relevant functioning problems at T1 (admission) and T4 (discharge). The re-estimation of trajectory analysis confirmed the previously identified mean functioning trajectory classes of stable high functioning (N = 239; 21.75%), early (N = 33; 3.00%), moderate (N = 753; 68.52%), and slow (N = 74; 6.73%) functioning improvement. The network analysis revealed highly connected functioning problems at T1 for the moderate functioning improvement class, including "Feeding", "Dressing upper body", and "Dressing lower body", "Mobility in bed", and "Use of toilet". These functioning domains might indicate potential trajectory-specific targets for clinical interventions. This study has increased our knowledge about functioning trajectories of individuals with SCI undergoing initial rehabilitation in Switzerland and its findings may inform discussions about the application and use of functioning trajectories in clinical practice. Due to the exploratory nature of this study, further research is needed to confirm the findings presented.

The Swiss Spinal Cord Injury Cohort Study (SwiSCI) biobank: from concept to reality

ObjectivesTo describe the concept, establishment and the operationalization of the biobank of the Swiss Spinal Cord Injury Cohort Study (SwiSCI), the available biosamples, and demographic and clinical characteristics of study participants.SettingThe SwiSCI biobank is a platform for research within SwiSCI. It collects and processes serum, plasma, PBMCs, RNA, DNA, and urine from three rehabilitation centers. Samples are collected at admission to first rehabilitation and at discharge. Additionly, the biobank provides services to projects nested in SwiSCI or otherclinical trials among Spinal Cord Injury population.MethodsDescriptive statistics were used for an overview of available biosamples, study participant characteristics, and comparison of the participating centers.ResultsBetween the SwiSCI biobank establishment on June 27th, 2016, and October 19th, 2023, the SwiSCI Study has obtained informed consent from 524 individuals. Of these, 315 (60.1%) have agreed to donate biospecimens to the biobank. The average age of the contributors was 54 years (range: 38–65), with the majority being male (80%). Most participants suffered from traumatic injuries (66%) and were classified as paraplegic (64%). Approximately 80% presented with motor and sensory-incomplete SCI. The median Spinal Cord Independence Measure (SCIM) score was 31 (Interquartile Range: 19–58). The proportion of individuals providing paired biosamples at two distinct time points ranged from 63% (for RNA) to 65% (for urine and urine sediment).ConclusionsThe SwiSCI biobank is a unique platform designed to serve as a basis for collaborative SCI research, including multi-omics approaches. The longitudinal collection of biospecimens and cryopreservation of multiple aliquots for each participant are fundamental for scrutinizing the temporal associations, ensuring research reproducibility, and achieving an adequate sample size for future investigations.

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

BackgroundPersons 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.MethodsWe 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.ResultsOf 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).ConclusionsThis 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.

The Most Important Assistive Devices for Persons with Spinal Cord Injury in Switzerland: A Cross-Sectional Study

Persons with spinal cord injury (SCI) rely significantly on the use of assistive devices (ADs) to increase independence and enhance participation. This study aimed to determine the most important ADs for persons with SCI living in Switzerland and to identify design features of potentially novel ADs greatly facilitating persons with SCI in performing the tasks of daily life. Descriptive statistics were used to analyze cross-sectional data (N = 1294 participants) from the Swiss Spinal Cord Injury Cohort Study 2017. Open-ended questions regarding the importance of ADs and desirable novel ADs were manually coded and assigned to categories. The results showed that the most important ADs for persons with SCI were a manual wheelchair (61%), an adapted car (46%), and a wheelchair tractor (20%). The importance of ADs varied with gender, age, and SCI severity. While none of the participants indicated a desire for a completely novel AD, over one-fifth described specific design features of novel ADs or adaptions of existing ADs, which were most often related to facilitating transfer (12%), walking support (10%), and facilitating access (9%). These findings have implications for the design and development of ADs to better meet the needs of persons with SCI, improve their quality of life, and promote their independence and participation in daily activities.

Perceived job quality among persons with spinal cord injury: The contribution of sociodemographic characteristics, health-related factors, and person-job match

Context/Objective Perceived job quality is a key indicator of sustainable work among persons with spinal cord injuries (PwSCI). This study aimed at (a) describing three indicators of perceived job quality (i.e. job satisfaction, job performance, and work stress) among working PwSCI, and (b) identifying whether and how different person-job match dimensions (i.e. interest congruence, demands-abilities fit, needs-supplies fit, and effort-reward imbalance) as well as sociodemographic and health-related factors (e.g. age, sex, SCI-related characteristics, pain problems, and depressive symptoms) are associated with perceived job quality. Design Cross-sectional, self-report survey. Setting Community. Participants 549 working-age PwSCI who participated in the 2017 community survey of the Swiss Spinal Cord Injury Cohort study and reported being engaged in paid work. Outcome measures Job satisfaction, job performance, and work stress. Results Higher interest congruence, better needs-supplies fit and lower effort-reward imbalance, as well as female sex, were associated with higher job satisfaction, while higher effort-reward imbalance, poorer demands-abilities fit (underqualification), and – surprisingly – better needs-supplies fit were associated with higher work stress. Moreover, underqualification, worse needs-supplies fit as well as pain, depressive symptoms, and language region were associated with lower job performance. Conclusion Integrating individuals in jobs that match their abilities, interests and needs, and which adequately reward their efforts may contribute to better job quality among PwSCI. Beyond that, common secondary health conditions and comorbidities such as pain and depressive symptoms should receive particular attention in interventions that aim to promote job quality and ultimately sustainable work in the SCI population.

The effect of the general practitioner as the first point of contact for care on the satisfaction with health care services in persons living with chronic spinal cord injury: A cross-sectional study

ObjectiveThe primary objective of this study was to investigate the effect of having a general practitioner (GP) as a first point of contact for care on the satisfaction with care services in persons with spinal cord injury (SCI), and how this effect is related to socio-demographic and health-related factors. MethodsThis is a cross-sectional survey conducted within the framework of the Swiss Spinal Cord Injury Cohort Study Community Survey 2017. Outcome measures comprised three aspects of care (treatment with respect, understandability of explanations, and involvement in decision-making) and satisfaction with GP care and SCI centres. Information was grouped by first contact of care (GP or SCI specialist) and compared using the Mann–Whitney U test and logistic regression analysis. ResultsOut of 3,959 invitees, 1,294 participants (33%) completed the survey. No significant association was found between the three aspects of care and the first contact of care. Persons who first contacted a GP and lived within a 10-minute travel distance to the GP practice were significantly less likely to be satisfied with their GP care (–5.7 percentage points, CI 95% = –10.7, –0.7), as compared to those living farther away. Persons who first contacted a GP rather than an SCI specialist were more likely to be satisfied with their GP care if married (7.1 percentage points, CI 95% = 1.4, 12.7), employed (6.6 percentage points, CI 95% = 0.9, 12.3), had a high social status (11.0 percentage points, CI 95% = 2.0, 20.1), or had tetraplegia (10.8 percentage points, CI 95% = 3.6, 18.1). For the same group, satisfaction with SCI centres was significantly higher in persons with good (10.1 percentage points, CI 95% = 0.1, 20.1) or very good health (8.2 percentage points, CI 95% = 1.0, 15.4), as compared to those with poor health. ConclusionThe majority of participants were satisfied with the services offered by their first contact point for care, with variations due to factors endogenous to the participants. Socio-demographic and health-related factors should be integrated into health care planning strategies and improvement initiatives to ensure equitable access and better quality of health care services.

The risk of malnutrition in patients with spinal cord injury during inpatient rehabilitation-A longitudinal cohort study.

Patients with spinal cord injury (SCI) show an increased risk of malnutrition. Studies found that about 50% of patients with a recent SCI are affected by malnutrition when they enter a rehabilitation institution. However, there is a lack of data during the course and at discharge of initial rehabilitation as well as missing knowledge about the factors promoting such a risk. The aim of this study was to assess the risk of malnutrition in individuals with SCI 3 months post injury and at the end of inpatient rehabilitation and to identify factors associated with a high risk of malnutrition. Retrospective, monocentric, longitudinal cohort study, using the data set of the Swiss Spinal Cord Injury Cohort Study and additional data from the patients' medical records. Individuals with SCI were assessed for the risk of malnutrition using the Spinal Nutrition Screening Tool 3 months post injury and at discharge from initial inpatient rehabilitation. Odds ratios (OR) for potential risk parameters were calculated. Of the 252 participants included, 62% were at risk for malnutrition 3 months post injury and 40% at discharge (p = 0.000). Moderate to high risk of malnutrition was found regardless of age and BMI. The highest odds for an increased risk at 3 months post injury was identified in ventilator-dependent persons (OR 10.2). At discharge from inpatient rehabilitation, pressure injury (OR 16.3) was the most prominent risk factor. In the population with SCI the risk of malnutrition is widespread during inpatient rehabilitation, but also at discharge. Ventilated persons and persons with pressure injuries are clear risk groups and need special attention. Based on these findings and the known negative impact of malnutrition on clinical outcomes, the awareness of malnutrition should be increased in the population with SCI. Therefore, a regular and standardized screening of the malnutrition risk is highly recommended.

Does the socioeconomic status predict health service utilization in persons with enhanced health care needs? Results from a population-based survey in persons with spinal cord lesions from Switzerland

BackgroundEvidence suggests that the socioeconomic status (SES) affects individuals’ health service utilization. Spinal cord injury is a condition that often leads to physical impairments and enhanced health care needs. It therefore presents an informative and yet under-researched case in point to investigate social inequalities in health service utilization. This study aims to describe associations between SES and health service utilization in adults with spinal cord injury from Switzerland.MethodsWe use cross-sectional data from 1,294 participants of the Swiss Spinal Cord Injury Cohort Study community survey 2017. SES was operationalized with education, household income, perceived financial hardship, subjective status, and granting of supplementary financial benefits. Health service utilization was assessed with information on visits to 13 different health care providers and four health care institutions (inpatient stays, outpatient clinics, emergency departments, specialized spinal cord centers) during the past 12 months. The dichotomized outcomes on service utilization (visited vs. not visited) were regressed on SES indicators, including adjustments for sociodemographics, lesion characteristics, and health status.ResultsPersons with higher SES reported higher likelihood for specialist, dentist, and dental hygienist visits and reported utilizing a larger number of different care providers. Further, specific SES indicators were associated with certain care provider visits (i.e., higher education and subjective status: higher odds for pharmacist visits; higher income: higher odds for natural healer visits; higher subjective status: higher odds for chiropractor visits; supplementary benefit granting: higher odds for general practitioner and home care service visits). We found statistically non-significant trends towards lower likelihood for inpatient stays, outpatient clinic and emergency department visits and enhanced likelihood for specialized spinal cord-center visits in higher SES groups.ConclusionsThis study generally supports the claim that basic health care provision is guaranteed for all patients with spinal cord injury in Switzerland, independently of their SES. However, social inequalities were still observed for the utilization of specific providers, such as oral health care providers. Given that oral health is key for health maintenance in persons with spinal cord injury, specific interventions to enhance regular dental check-ups in lower SES groups are highly recommended.

Predicting change in labour market participation of people with spinal cord injury (SCI): longitudinal evidence from the Swiss SCI community survey.

Longitudinal, population-based survey. To examine change in labour market participation (LMP) of people with spinal cord injury (SCI) living in Switzerland and to identify predictors of increase, decrease and stability in LMP between 2012 and 2017. Community. Longitudinal information on LMP (i.e., weekly workload) was obtained from 311 gainfully employed, working-age individuals who participated in the Swiss Spinal Cord Injury Cohort Study (SwiSCI) community survey in 2012 and were still of working age at the time of completing the 2017 questionnaire. Statistical preselection of the predictors of change in LMP was carried out by implementing the least absolute shrinkage and selection operator (LASSO) in a multinomial logistic regression model. The final set of predictors was selected by comparison of several multinomial logistic regression models. Out of 311 participants, almost half (43%) changed their LMP between 2012 and 2017, 48 increased their weekly workload, 49 reduced and 37 participants left the labour market prematurely. Age at time of the survey, years of education, having children, intention to change weekly workload, high satisfaction with daily routine, extra-time needs for transportation and managing support were associated with change in LMP. Modifiable factors like education and satisfaction with daily routine should receive particular attention in the context of job retention strategies. More longitudinal research focusing on key employment transitions and trajectories over the life course of persons with SCI is needed to complement, validate and extend our findings.

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

BackgroundThere is limited epidemiological evidence describing contemporary neuro-urological management of persons with acute spinal cord injury (SCI). ObjectiveTo describe neurogenic lower urinary tract dysfunction (NLUTD) management at discharge from SCI rehabilitation. Design, setting, and participantsThe 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 analysisData 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 limitationsAt 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. ConclusionsOur 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 summaryAt 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.

Pain Trajectories During Initial Rehabilitation After Spinal Cord Injury: Do Psychosocial Resources and Mental Health Predict Trajectories?

ObjectiveTo identify classes of pain trajectories during initial rehabilitation after spinal cord injury (SCI) and to investigate whether psychosocial resources and mental health predict pain trajectory membership. DesignLongitudinal analysis with prospective data from the Inception Cohort of the Swiss Spinal Cord Injury Cohort Study. SettingInitial rehabilitation in 4 SCI specialized rehabilitation centers in Switzerland. ParticipantsIndividuals aged ≥16 years with newly diagnosed traumatic or nontraumatic SCI admitted to initial rehabilitation between August 2015 and April 2021 (N=343). InterventionNot applicable. Main Outcome MeasuresPain intensity was assessed at 4 time points (4, 12, and 24 weeks after SCI and at discharge) with 1 item of the International SCI Basic Pain Dataset asking participants to rate their average pain intensity experienced during the past week on a 0-10 numeric rating scale. ResultsFour pain trajectories were identified by latent process mixed modeling: stable moderate pain (N=170, 49.6%), decreasing pain (N=36, 10.5%), increasing pain (N=16, 4.7%), and stable low pain (N=121, 35.3%). Participants with higher optimism (β = 0.12; 95% confidence interval [CI], 0.03-0.22), more social support (β = 0.30; 95% CI, 0.01-0.59), and less anxiety (β = −0.13; 95% CI, −0.24 to −0.01) 1 month after injury were more likely to be classified to the decreasing pain than the stable moderate pain trajectory in adjusted analyses. Self-efficacy, purpose in life, and depressive symptoms did not predict this allocation when adjusting for sociodemographics, SCI characteristics, and pain medication. ConclusionsThese findings highlight the importance of psychosocial resources and mental health for early pain trajectories after SCI onset and support the notion that strengthening psychosocial resources and mental health early after SCI could present promising targets in pain management.

Changes in cardiometabolic risk factors during inpatient rehabilitation of traumatic spinal cord injury from a multicenter Swiss Spinal Cord Injury Cohort (SwiSCI)

Abstract Introduction Cardiometabolic health has a growing relevance in spinal cord injury (SCI) considering the increasing survival and aging population. We explored longitudinal changes in cardiometabolic risk profile and examined whether injury characteristics could be a non-modifiable risk factor for individuals with SCI in subacute phase of the injury. Methods We used the data from a multicenter Swiss Spinal Cord Injury Cohort (SwiSCI) study and included adults with traumatic SCI (TSCI) without cardiometabolic diseases and diabetes at baseline. We included individuals with available data on admission and prior to discharge from first SCI rehabilitation. Blood pressure, lipid profile, fasting glucose, waist circumference (WC), weight, and body mass index (BMI) were compared according to the injury level (tetraplegia-TP vs paraplegia-PP) and completeness (motor complete-COM vs incomplete-INC). We used multivariable linear regression for cross-sectional analysis and linear mixed models for longitudinal analysis, adjusting for age, sex, lifestyle factors, medication-use, and injury characteristics. We performed age- (above and below median age) and sex-stratified analyses. Sensitivity analyses were also performed by removing systemic steroid-use (proxy for acute injury), adjusting for opioid-use (medication side-effect) and adjusting further for BMI and WC. Results We analyzed 258 individuals with TSCI (110 TP and 148 PP, 122 COM and 136 INC). Median age was 50 years (IQR 32–60), with 76.36% (n=197) of the population being male. The median rehabilitation duration was 5.5 months (IQR 3.2–7.1). On admission, the fully-adjusted models showed higher baseline weight, systolic BP, diastolic BP and triglycerides in PP than TP. Systolic BP, diastolic BP, HDL, HDL/LDL were higher in INC than COM. In the overall population, we observed increases in cholesterol, HDL, and HDL/LDL ratio over rehabilitation period. Individuals with PP had a higher increase in BMI as compared to TT, while no differences were detected when comparing INC and COM injury (Table 1–3). Results from sensitivity analyses were generally in line with the overall findings; however, at baseline, there was some indication that lipid profile may be different in COM and INC injury. In sex-stratified longitudinal analysis, triglycerides were higher in females PP than TP, and diastolic BP was higher in females with INC than COM. For age-stratified longitudinal analysis, elderly with PP have higher triglycerides than younger adults. Conclusion We reported changes in BMI and lipid profile during the inpatient rehabilitation of individuals with traumatic SCI and without history of cardiovascular diseases and diabetes. Injury characteristics may not be an independent risk factor for subacute phase, but maybe important in specific subgroups, like in women and in the elderly (>50 years old). Funding Acknowledgement Type of funding sources: None. MethodsResults

First contact of care for persons with spinal cord injury: a general practitioner or a spinal cord injury specialist?

BackgroundAlthough general practitioners (GPs) are generally considered as the first point of contact for care, this may be different for persons with complex conditions, such as those with spinal cord injury (SCI). The objective of this study is to understand the differences in long-term care provision by GPs and SCI-specialists, by examining (1) the first contact of care for SCI health problems, (2) the morbidity profile and use of health-care services in relation to first contact, and (3) the factors associated with the choice of first contact.MethodsIn this cross-sectional study based on data derived from the Swiss Spinal Cord Injury Cohort Study Community Survey 2017, the main outcome measure was the reported first contact for SCI-specific care. This information was analysed using the chi-square test and logistic regression analysis of groups based on patient characteristics, use of health-care services and secondary health conditions assessed using the Spinal Cord Injury Secondary Conditions Scale (SCI-SCS).ResultsOut of 1294 respondents, 1095 reported their first contact for SCI-specific care; 56% indicated SCI-specialists and 44% specified GPs. On average, participants who first contacted a GP reported higher number of GP consultations (5.1 ± 5.2 vs. 3.9 ± 7.2), planned visits to ambulatory clinics (3.7 ± 7.3 vs. 3.6 ± 6.7) and hospital admissions (GP, 1.9 ± 1.7 vs. 1.5 ± 1.3), but lower number of visits to SCI-specialists (1.7 ± 1.8 vs. 2.6 ± 1.7) and of hospital days (22.8 ± 43.2 vs. 31.0 ± 42.8). The likelihood to contact a GP first was significantly higher in persons ≥75 years old (OR = 4.44, 95% CI = 1.85–10.69), Italian speakers (OR = 5.06, 95% CI = 2.44–10.47), had incomplete lesions (OR = 2.39, 95% CI = 1.71–3.35), experiencing pain (OR = 1.47, 95% CI = 1.04–2.09) or diabetes mellitus (OR = 1.85, 95% CI = 1.05–3.27), but lower for those situated closer to SCI centres (OR = 0.69, 95% CI = 0.51–0.93) or had higher SCI-SCS scores (OR = 0.92, 95% CI = 0.86–0.99).ConclusionAge, language region, travel distance to SCI centres, lesion completeness, and occurrence of secondary conditions play a significant role in determining the choice of first contact of care, however there is still some unwarranted variation that remains unclear and requires further research.

Internal consistency and convergent validity of the International Spinal Cord Injury Quality of Life Basic Data Set at discharge from first rehabilitation.

This study is a cross-sectional analysis using data from the Swiss Spinal Cord Injury Cohort Study. To examine internal consistency and convergent validity of the International Spinal Cord Injury Quality of Life Basic Data Set (QoL-BDS) at discharge from first inpatient rehabilitation. The study was performed at four rehabilitation centers in Switzerland. Participants were Swiss residents aged over 16 years newly diagnosed with traumatic or non-traumatic spinal cord injury (SCI). Measures included the QoL-BDS, World Health Organization Quality of Life (WHOQOL) items, Hospital Anxiety and Depression Scale (HADS), and Spinal Cord Independence Measure III (SCIM). A total of 495 participants were included. In all, 57% had a traumatic SCI, 71.1% a motor complete SCI, and 33.3% had tetraplegia. Mean age was 53 (SD = 16.4) years and 68% were male. No floor or ceiling effects were found. Inter-correlations were strong (0.73-0.80) and Cronbach's alpha was good (0.88). QoL-BDS mean scores were 6.4 (SD = 2.2) for life satisfaction, 5.8 (SD = 2.4) for physical health, 6.9 (SD = 2.4) for psychological health, and 6.4 (SD = 2.1) for total QoL. Correlations with reference measures were strongest for QoL-BDS total and WHOQOL general quality of life (r = 0.67), QoL-BDS physical health and WHOQOL health and daily activities (r = 0.64 and 0.53), and QoL-BDS psychological health and HADS depression and anxiety (r = -0.64 and -0.69). SCIM correlated weakly with all QoL-BDS items. The QoL-BDS revealed no floor or ceiling effects and demonstrated good internal consistency and convergent validity in individuals with SCI assessed at discharge from first rehabilitation. This study supports the clinical routine use of the QoL-BDS.

Long term outcome of functional independence and quality of life after traumatic SCI in Germany

Study designMulticenter observational study.ObjectiveTo describe the long-term outcome of functional independence and quality of life (QoL) for individuals with traumatic and ischemic SCI beyond the first year after injury.SettingA multicenter study in Germany.MethodsParticipants of the European multicenter study about spinal cord injury (EMSCI) of three German SCI centers were included and followed over time by the German spinal cord injury cohort study (GerSCI). Individuals’ most recent spinal cord independence measure (SCIM) scores assessed by a clinician were followed up by a self-report (SCIM-SR) and correlated to selected items of the WHO short survey of quality of life (WHO-QoL-BREF).ResultsData for 359 individuals were obtained. The average time passed the last clinical SCIM examination was 81.47 (SD 51.70) months. In total, 187 of the 359 received questionnaires contained a completely evaluable SCIM-SR. SCIM scores remained stable with the exception of reported management of bladder and bowel resulting in a slight decrease of SCIM-SR of −2.45 points (SD 16.81). SCIM-SR scores showed a significant correlation with the selected items of the WHO-QoL-BREF (p < 0.01) with moderate to strong influence.ConclusionSCIM score stability over time suggests a successful transfer of acquired independence skills obtained during primary rehabilitation into the community setting paralleled by positively related QoL measurements but bladder and bowel management may need special attention.

Identification of Classes of Functioning Trajectories and Their Predictors in Individuals With Spinal Cord Injury Attending Initial Rehabilitation in Switzerland

ObjectivesTo identify classes of functioning trajectories in individuals with spinal cord injury (SCI) undergoing initial rehabilitation after injury and to examine potential predictors of class membership to inform clinical planning of the rehabilitation process. DesignLongitudinal analysis of the individual's rehabilitation stay using data from the Inception Cohort of the Swiss Spinal Cord Injury Cohort Study (SwiSCI). SettingInitial rehabilitation in specialized centers in Switzerland. ParticipantsIndividuals with newly acquired SCI (N=748; mean age, 54.66±18.38y) who completed initial rehabilitation between May 2013 and September 2019. The cohort was primarily composed of men (67.51%), persons with paraplegia (56.15%), incomplete injuries (67.51%), and traumatic etiologies (55.48%). InterventionsNot applicable. Main Outcome MeasuresFunctioning was operationalized with the interval-based sum score of the Spinal Cord Independence Measure version III (SCIM III). For each individual, the SCIM III sum score was assessed at up to 4 time points during rehabilitation stay. The corresponding time of assessment was recorded by the difference in days between the SCIM III assessment and admission to the rehabilitation program. ResultsLatent process mixed model analysis revealed 4 classes of functioning trajectories within the present sample. Class-specific predicted mean functioning trajectories describe stable high functioning (n=307; 41.04%), early functioning improvement (n=39; 5.21%), moderate functioning improvement (n=287; 38.37%), and slow functioning improvement (n=115; 15.37%), respectively. Out of 12 tested factors, multinomial logistic regression showed that age, injury level, injury severity, and ventilator assistance were robust predictors that could distinguish between identified classes of functioning trajectories in the present sample. ConclusionsThe current study establishes a foundation for future research on the course of functioning of individuals with SCI in initial rehabilitation by identifying classes of functioning trajectories. This supports the development of specifically tailored rehabilitation programs and prediction models, which can be integrated into clinical rehabilitation planning.

Utilization of health care providers by individuals with chronic spinal cord injury.

Questionnaire survey conducted in 2017 as part of the Swiss Spinal Cord Injury Cohort Study (SwiSCI). To elucidate the use of outpatient health care providers by individuals with chronic spinal cord injury in a situation of free choice and ample supply. Community, nationwide. The frequency of visits was compared to that of a survey conducted five years earlier. Using regression tree analysis, the characteristics of individuals with extensive use of health care providers' services were investigated. Substitution effects, where health care users replace one provider type by another, were quantified using likelihood ratios for positive outcomes. The questionnaire was returned by 1,294 persons (response rate 33%). Participants reported visits to 14 different health care providers within the previous 12 months. Most often visited was the general practitioner (GP) by 82%. Older individuals used fewer health care providers than younger participants. Individuals with spasticity and females visited a broader variety of health care providers than the average user. The participants used fewer providers than they did five years ago. Health care users were not found to be substituting one provider type with another. Individuals with spinal cord injury in Switzerland use a wide array of medical service providers. All providers were used complementary to each other without redundancies between providers. The use of providers is driven by health-related factors and gender. Old age was not as much a driver for high utilization as described in other settings.

Inception cohort of the Swiss Spinal Cord Injury Cohort Study (SwiSCI): Design, participant characteristics, response rates and non-response.

ObjectivesTo provide a methodological reference paper for the inception cohort of the Swiss Spinal Cord Injury Cohort Study (SwiSCI), by detailing its methodological features and reporting on participant characteristics, response rates and non-response bias.DesignProspective cohort study starting in 2013 in all 4 specialized rehabilitation centres in Switzerland.SubjectsIncluded are 655 newly diagnosed first rehabilitation patients aged ≥16 years with traumatic or non-traumatic spinal cord injury (TSCI, NTSCI).MethodsDescriptive statistics were used to depict participant characteristics and to compare characteristics of responders and non-responders. Logistic regressions were conducted to estimate non-response bias.RESULTSThe sample consisted of 69% males, with mean age 53.5 years, 57.9% TSCI, 60.7% paraplegia and 78.8% incomplete SCI. Males and younger persons more often sustained TSCI and more severe SCI, resulting in longer duration of rehabilitation. Complete lesions were more prevalent in TSCI compared to NTSCI. The response rate was 47.5% and study participation was less likely in females, older persons, persons with lower functional independence and those with NTSCI.ConclusionSwiSCI inception cohort data enable the estimation of epidemiological figures of SCI in Switzerland, and prognostic and trajectory modelling of outcomes after SCI to guide policy, service provision and clinical practice.LAY ABSTRACTThe inception cohort of the Swiss Spinal Cord Injury Cohort Study (SwiSCI) is a prospective study including newly diagnosed first rehabilitation patients aged over 16 years with traumatic or non-traumatic spinal cord injury (SCI) who received first rehabilitation in a specialized center in Switzerland. This paper describes the methods and the design of the SwiSCI inception cohort and reports on participant characteristics, response rates and differences between respondents and non-respondents. The response rate was 47.5% and 655 patients participated in the study. Of participants, 69.0% were male, mean age was 53.5 years, 57.9% had traumatic SCI, 60.7% paraplegia and 78.8% incomplete SCI. Male subjects and younger persons more often sustained traumatic SCI and more severe SCI, resulting in longer duration of rehabilitation. Complete lesions were more prevalent in traumatic SCI compared with non-traumatic SCI. Females, older persons, persons with lower functional independence and those with non-traumatic SCI were less likely to participate in the study.

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

Longitudinal community survey. 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. Community (people with SCI living in Switzerland). 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. 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). 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.