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Study design Descriptive study of the second community survey of the Swiss Spinal Cord Injury Cohort Study (Survey 2017) conducted between 03/2017 and 03/2018. Objectives To describe the methodology, recruitment results, characteristics of participants and non-participants, and non-response of the Survey 2017. Setting Community. Methods Description of the sampling strategy and sampling frame. Recruitment results and characteristics of participants and non-participants of the two Survey 2017 questionnaire modules were analyzed using descriptive statistics. Determinants of survey participation were examined using multivariable logistic regression, and the impact of non-response bias on survey results was evaluated using inverse-probability weighting. Results Out of 3959 persons who met the eligibility criteria, 1530 responded to module 1 (response rate 38.6%) and 1294 to module 2 (response rate 32.7%) of the Survey 2017. Of the 4493 invited persons, 1549 had participated in the first SwiSCI community survey conducted in 2012/2013. Of these, 1332 were invited to the Survey 2017 and 761 participated in module 1 (response rate 58.9%) and 685 in module 2 (response rate 53.1%). The majority of module 1 participants were male (71.2%, 95% CI: 68.9, 73.5), with a median age of 57 (IQR: 46.0, 67.0) years and incomplete paraplegia (41.9%, 95% CI: 39.3, 44.5). Survey non-response was higher in the oldest age group, among females, and those with tetraplegia. Conclusions The design of the Survey 2017 was successful in recruiting a substantial proportion of the SCI source population in Switzerland. To counteract survey non-response, survey weights may be applied to subsequent analyses. Sponsorship none.

STUDY DESIGN Observational study using data from the second community survey of the Swiss Spinal Cord Injury Cohort Study (Survey 2017). OBJECTIVES To examine information seeking of individuals with spinal cord injury (SCI) in Switzerland and its association with personal characteristics, quality of life, satisfaction with health, and healthcare services utilization. SETTING Community. METHODS Descriptive statistics were used to describe information needs, information sources, and health literacy of the participants. Linear, logistic, and Poisson regression analyses were used to assess the association of information-related variables with personal characteristics, quality of life, satisfaction with health, and healthcare services utilization. RESULTS One quarter of the 1294 study participants (24.6%) reported having information needs. Most frequently mentioned were needs for medical information about SCI, complications and comorbidities (30.5%), and information on living with SCI (28.6%). The most often used sources of information were healthcare professionals (72.3%), the Internet (43.2%), and other people living with SCI (40.8%). Almost half of the participants (41.4%) were only somewhat or not at all confident in their ability to find information. Having information needs was associated with suboptimal outcomes. CONCLUSIONS This study confirms the importance of information for individuals living with SCI. By providing evidence on topics to be addressed and modalities of information delivery, our findings can help institutions in developing information to support individuals living with SCI in their daily activities. Information should cover all aspects of living with SCI, be relevant to and understandable for people of all backgrounds, and be made available online and offline.

STUDY DESIGN Questionnaire survey conducted in 2017 as part of the Swiss Spinal Cord Injury Cohort Study (SwiSCI). OBJECTIVES 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. SETTING Community, nationwide. METHODS 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. RESULTS 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. CONCLUSIONS 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.

Retrospective chart analysis. To examine which professionals administered which assessment instruments in which patient in clinical practice during first rehabilitation after newly acquired spinal cord injury (SCI) and the differences in the frequencies of different assessments between patient groups. Specialized SCI acute care and rehabilitation clinic. Patients after SCI, aged 18 years and above, admitted for first rehabilitation between December 2014 and December 2015 were analyzed. Descriptive statistics of 54 selected assessments. p values based on the χ 2 test were calculated for assessments used in both paraplegic and tetraplegic patients. One hundred and nineteen patients were screened. Forty-one assessments were administered, of which 10 on average more than once per patient. The most frequently used assessments were Spinal Cord Independence Measure III (7.7 times per patient), Skin Assessment (3.6 times), and Manual Muscle Test (3.2 times for Lower Extremities; 2.5 times for Upper Extremities). The American Spinal Injury Association Impairment Scale was administered on average 1.9 times per patient. More variation in the number of assessments per patient was observed in patients with complete and incomplete lesions compared to patients with paraplegia and tetraplegia. Assessments covering neurological functioning, mobility, and self-care are used in clinical practice during first rehabilitation of patients with SCI, while others covering autonomic functioning, pain, participation, or quality of life are still missing. Based on these observations and national and international requirements, a meaningful standard for an assessment toolkit, applicable in general and in specific subgroups, needs to be defined and implemented.

This was a cross-sectional questionnaire survey. The objective of this study was to identify the care-seeking behavior of persons with spinal cord injury (SCI) with respect to the various health care providers and ascertain circumstances that lead to situations where required care was not received. This study was conducted in the entire country of Switzerland. Statistical analysis of frequency of annual visits to health care providers by 17 specialties, and description of situations where health care was required but not received, in persons with chronic SCI living in the community. Main medical contact person was the general practitioner (GP; visited by 88% during last 12 months). The physiotherapist (visited by 72%) was the health care provider with the most visits (average of 30 visits in 12 months). GPs, physiotherapists, urologists and spinal medicine specialists were often contacted in combination, by many participants, often for check-up visits. A situation where care was required but not received was reported by 53 (11%) of participants, with a substantially higher rate in migrants (29%). Main problems why care was not received were bladder and bowel problems and main reasons of care not received were regional or temporal unavailability. Individuals with SCI are frequent users of medical services. There is no group of medical specialists that covers all needs of persons with SCI, what emphasizes health care provision from a comprehensive perspective including a wide array of services. Instances with care required but not received appeared to be rare and more likely in participants with migration background.

Qualitative exploratory study. Pressure injuries (PIs) are a major secondary condition occurring after spinal cord injuries (SCI). Optimization of outpatient and community care may be a promising approach to better support community-dwelling individuals with SCI in preventing PIs. The aim of this study was to examine the experiences of individuals with SCI, family caregivers and health professionals (HPs) in using or providing outpatient and community services for early treatment and prevention of PIs in SCI. Switzerland. Semi-structured interviews with a sample of Swiss residents community-dwelling individuals with SCI (n = 20), family caregivers (n = 5) and HPs (n = 22) were analysed using thematic analysis. General practitioners (GPs), home care providers, SCI-specialized outpatient clinics and an SCI-specialized nursing service are involved in the prevention and early treatment of PIs. Our findings show that the needs of individuals with SCI are not fully met: outpatient and community care is often fragmented, mono-professional and non-specialized, while persons with SCI and HPs prefer coordinated, inter-professional and specialized services for preventing and treating PIs. Our findings also highlight the challenges faced by HPs in providing care to individuals with SCI in the community. Although there seems to be a gap in service provision, there is the potential for improvement by better integrating the different providers in a network and structuring their collaborations. Concrete suggestions are: systematizing knowledge transfer to home care providers and GPs; redefining the role of involved HPs and individuals with SCI and reinforcing the role of the SCI-specialized nursing service.

Study Design Cross-sectional survey. Objective The objective of this study is to identify what characteristics of the family caregivers influenced the use of professional home care for persons with SCI in Switzerland. Setting Community setting, nationwide in Switzerland. Methods Questionnaires were filled out by the adult family caregivers of persons with SCI. Influence of characteristics of the caregivers was analyzed with regression models, adjusting for the characteristics of the person with SCI. Logistic regression was used for whether professional home care was used. Poisson regression was applied for the absolute and relative amount of professional home care. Results In total, 717 family caregivers participated in the study (31% response rate). Among the participants, 33% hired professional home care for 10 h per week on average. The level of dependency of the persons with SCI had a significant influence on the utilization of care. The availability and proximity of the primary family caregiver, namely being spouse and cohabiting, reduced the amount of services used, whereas caregivers who worked full time employed more services. Higher levels of education and income increased the use of professional home care. Compared with their reference groups, caregivers with older age and those with a migratory background used comparable or larger absolute amount of professional services, which, however, represented a smaller proportion of total hours of care. Conclusions Adequate support requires consideration of the characteristics of both the caregiver and of the person with SCI. The needs of family caregivers should also be assessed systematically in the needs assessment.

Study design Observational study.Objectives To determine the prevalence, predictors, and consequences of self-reported service needs among communitydwelling persons with SCI.Setting Community-based, Switzerland.Methods Participants were 490 people who took part in the health services module of the Swiss Spinal Cord Injury Cohort Study (SwiSCI) 2012 community survey. We determined the prevalence of 20 service needs and the extent to which they were unmet. Predictors and consequences of service needs were examined with multiple regression analyses.Results High-prevalence needs (e.g., general health care, accessible housing) exhibited a high level of fulfillment. Conversely, less prevalent service needs (e.g., peer support, support for family caregivers) showed lower levels of fulfillment. Across three specific service domains (peer support, support for family caregivers, sports activities), lower household income predicted most consistently a higher likelihood of unmet needs. The total number of expressed needs was higher in non-Swiss nationals, persons with complete para- or tetraplegia and lower income individuals. Being female, French language region and lower household income predicted more total unmet needs. Increased expressed and unmet service needs were associated with lower life satisfaction.Conclusions Service needs with a high prevalence seem to be adequately met by the current service provision system. However, rehabilitation professionals should remain alert to clients' specific and cumulative unmet needs, in particular with respect to less common ones, and their impact on successful community reintegration and life satisfaction.

Cross-sectional survey.To investigate annual rates and geographic variation of health care utilization in persons with spinal cord injury (SCI), and to identify factors associated with health care utilization.Community setting, entire country of Switzerland.Annual rates of planned and emergency visits to the general practitioner (GP), planned and emergency outpatient clinic visits and in-patient hospitalizations were compared between individuals with chronic SCI, over 16 years of age residing in Switzerland between late 2011 and early 2013 and a population sample (2012) of the Swiss general population. Risk factors for increased health service utilization were identified by means of regression models adjusted for spatial variation.Of 492 participants (86.2% response rate), 94.1% visited a health care provider in the preceding year, with most persons visiting GPs (88.4%) followed by outpatient clinics (53.1%) and in-patient hospitals (35.9%). The increase in utilization as compared with the general population was 1.3-, 4.0- and 2.9-fold for GP, outpatient clinic and in-patient hospital visit, respectively. GP utilization was highest in persons with low income (incidence rate ratio (IRR) 1.85) and old age (IRR 2.62). In the first 2 years post injury, health service visits were 1.7 (GP visits) to 5.8 times (emergency outpatient clinic visits) more likely compared with those later post injury.People with SCI more frequently use health services as compared with the general population, across all types of medical service institutions. GP services were used most often in areas where availability of specialized outpatient clinic services was low.