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

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. [ABSTRACT FROM AUTHOR]

Objectives: To provide a step-by-step, easy-to-understand, practical guide for systematic review and meta-analysis of observational studies. Methods: A multidisciplinary team of researchers with extensive experience in observational studies and systematic review and meta-analysis was established. Previous guidelines in evidence synthesis were considered. Results: There is inherent variability in observational study design, population, and analysis, making evidence synthesis challenging. We provided a framework and discussed basic meta-analysis concepts to assist reviewers in making informed decisions. We also explained several statistical tools for dealing with heterogeneity, probing for bias, and interpreting findings. Finally, we briefly discussed issues and caveats for translating results into clinical and public health recommendations. Our guideline complements "A 24-step guide on how to design, conduct, and successfully publish a systematic review and meta-analysis in medical research" and addresses peculiarities for observational studies previously unexplored. Conclusion: We provided 7 steps to synthesize evidence from observational studies. We encourage medical and public health practitioners who answer important questions to systematically integrate evidence from observational studies and contribute evidencebased decision-making in health sciences. [ABSTRACT FROM AUTHOR]

Health systems rely on the unpaid work of family caregivers. Nevertheless, demographic changes suggest a shortage of caregivers in the near future, which can constrain the long‐term care policy in many countries. In order to find ways to support family caregivers, a primary effort would be to estimate how much their work is worth. This paper estimates the economic value of long‐term family caregivers and how these costs would be shared by the health system, the social insurances and the cared‐for person in the absence of informal caregivers. We use data of 717 family caregivers of persons with spinal cord injury (SCI) in Switzerland. We implemented the proxy‐good method and estimated the market value of their work if performed by professional caregivers. Our results show that family caregivers in the sample spent an average of 27 hr per week caring for a relative for almost 12 years. This work, if undertaken by professional home care, has a market value of CHF 62,732 (EUR 56,455) per year. In the absence of family caregivers, these costs should be financed by the health insurances (47%), by the cared‐for person (24%) and by the social insurances (29%). It is in the best interest of the cared‐for person and of the healthcare and social systems to keep a sustained supply of family caregivers. One option is finding ways to recognise and compensate them for their work and make it less cumbersome. [ABSTRACT FROM AUTHOR]

Purpose: In a country of free selection of providers, general practitioners (GPs) remain the most visited health-care professionals by the vast majority of persons with spinal cord injury (SCI) in Switzerland; yet, little is known about these contacts. The study aims to explore reasons for encounters (RFEs) in general practice, and their relationships to first-contact of care (GP or specialist) and GP's competence in managing SCI-specific problems. Patients and Methods: Cross-sectional study from baseline data of non-randomized controlled trial. Persons with SCI in the chronic phase and living in Swiss rural communities were invited. Participants were asked about RFEs (reasons and health problems) of their last visit to a GP. RFEs were coded according to the International Classification of Primary Care (ICPC-2), and analyzed according to first-contact and participants' ratings of GPs' competence in managing SCI-specific problems. Results: Out of 395, 226 (57%) persons participated, of which 89% have reported 2.1 (SD ± 1.4) RFEs and 2.4 (± 1.7) health problems per GP visit, on average. Participants visited GPs for medications (49%), urgent medical problems (33%) and follow-up (30%). Most RFEs were related to general/unspecified problems (65%). Persons whose first contact was a specialist were more likely to visit GPs for medications (Specialist = 60% vs GP = 42%). There were no associations between RFEs and the perceived GP's competence at P < 0.05. Conclusion: Irrespective of first contact of care, persons with SCI visit GPs for medication, urgent issues, and follow-up care, and more often for general problems than for secondary health conditions. Strengthening collaboration between GPs in rural communities and specialized centers is recommended; promoting such a connection potentially aids GPs in meeting their information needs for managing secondary health conditions and improving the quality of SCI care for this population. [ABSTRACT FROM AUTHOR]

Background: Evidence 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. Methods: We 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. Results: Persons 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. Conclusions: This 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. [ABSTRACT FROM AUTHOR]

Background: Although 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. Methods: In 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). Results: Out 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). Conclusion: Age, 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objective:Within the objective of defining targets for interventions to support self-management behaviors among people living with spinal cord injury, this study aims to describe self-management attitudes and beliefs in community-dwelling people living with spinal cord injury in Switzerland and to identify their correlates in terms of personal characteristics and outcomes, such as secondary health conditions and quality of life. Design: This is a cross-sectional, observational study using data from the third community survey of the Swiss Spinal Cord Injury Cohort Study. Results: Out of 1158 individuals, the data revealed high endorsement in areas of prevention importance, perceived knowledge, adherence to recommendations, and proactive problem-solving. Personal and lesion characteristics were significantly associated with differing self-management beliefs and attitudes. Overall, a more positive and proactive stance toward self-management correlated with enhanced outcomes. However, readiness to renounce activities to adhere to self-management recommendations was associated with lower quality of life. Conclusions: The findings confirm the complex nature of selfmanagement among individuals with spinal cord injury, advocating for a tailored, person-centered approach in designing interventions. Highlighting a potential trade-off between strict self-management adherence and quality of life outcomes posits an avenue for balanced, individualized self-management strategies to ameliorate health outcomes and life quality for individuals with spinal cord injury. [ABSTRACT FROM AUTHOR]