Does cardiometabolic risk profile differ among individuals with traumatic and non-traumatic spinal cord injury (SCI): the evidence from the multicenter SCI cohort in Switzerland (SwiSCI).

STUDY DESIGN: Longitudinal study. OBJECTIVE: To explore whether individuals with traumatic spinal cord injury (TSCI) and non-traumatic SCI (NTSCI) experience different trajectories in changes of cardiometabolic disease (CMD) factors during initial rehabilitation stay. SETTING: Multicenter Swiss Spinal Cord Injury Cohort (SwiSCI) study. METHODS: Individuals without history of cardiovascular diseases were included. CMD factors and Framingham risk score (FRS) were compared between TSCI and NTSCI. Linear mixed models' analysis was employed to explore the trajectory in CMD factors changes over rehabilitation period and a multivariate linear regression analysis was used at discharge from inpatient rehabilitation to explore factors associated with CMD risk profile in TSCI and NTSCI. We performed age and sex-stratified analyses. RESULTS: We analyzed 530 individuals with SCI (64% with TSCI and 36% NTSCI). The median age was 53 years (IQR:39-64) with 67.9% (n = 363) of the study cohort being male. The median rehabilitation duration was 4.4 months (IQR 2.4-6.4). At admission to rehabilitation, FRS (9.61 vs. 5.89) and prevalence of hypertension (33.16% vs. 13.62%), diabetes (13.68% vs. 4.06%), and obesity (79.05% vs. 66.67%) were higher in NTSCI as compared to TSCI, No difference was observed in cardiometabolic syndrome between the groups (around 40% in both groups). Overall, we observed longitudinal increases in total cholesterol, HDL-C and HDL/total cholesterol ratio, and a decrease in fasting glucose over the rehabilitation period. No differences in longitudinal changes in cardiovascular risk factors were observed between TSCI and NTSCI. CONCLUSIONS: There was no deterioration in cardiometabolic risk factors over rehabilitation period, at discharge from initial rehabilitation stay. Both TSCI and NTSCI experienced high burden of cardiometabolic syndrome components with NTSCI experiencing more disadvantageous risk profile. The effectiveness of therapeutic and lifestyle/behavioral strategies to decrease burden of cardiometabolic disease and its components in early phase should be explored in future studies.

Labor market costs for long-term family caregivers: the situation of caregivers of persons with spinal cord injury in Switzerland.

BACKGROUND: Family members are key in the provision of care to persons facing disability. To undertake the role as caregivers, they face many costs, being the setback in the labor market one of the most relevant. METHODS: We analyze comprehensive data from long-term family caregivers of persons with spinal cord injury (SCI) in Switzerland. Using information about their working situation before and after becoming caregivers, we estimated the reduction in working hours and the associated income loss. RESULTS: On average, family caregivers reduced their working hours by about 23% (8.4 h per week), which has a monetary value of CHF 970 per month (EUR 845). Women, older caregivers, and less educated caregivers have a much higher opportunity cost in the labor market: CHF 995 (EUR 867), CHF 1,070 (EUR 932), and CHF 1,137 (EUR 990) respectively. In contrast, family members who care for a person that works have a much lower impact on their working status, CHF 651 (EUR 567). Interestingly, the reduction in their working time is only a third of the extra work they face as caregivers. CONCLUSION: Health and social systems rely on the unpaid work of family caregivers. To guarantee their long-term involvement, family caregivers need to be recognized for their work and potentially compensated. Without family caregivers, it is very unlikely societies can cope with the increasing need for care, as professional services are limited and expensive.

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

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.

Physical activity and cardiometabolic risk factors in individuals with spinal cord injury: a systematic review and meta-analysis.

Physical inactivity in individuals with spinal cord injury (SCI) has been suggested to be an important determinant of increased cardiometabolic disease (CMD) risk. However, it remains unclear whether physically active SCI individuals as compared to inactive or less active individuals have truly better cardiometabolic risk profile. We aimed to systematically review and quantify the association between engagement in regular physical activity and/or exercise interventions and CMD risk factors in individuals with SCI. Four medical databases were searched and studies were included if they were clinical trials or observational studies conducted in adult individuals with SCI and provided information of interest. The Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach was applied to rate the certainty of evidence. Of 5816 unique citations, 11 randomized clinical trials, 3 non-randomized trial and 32 cross-sectional studies comprising more than 5500 SCI individuals were included in the systematic review. In meta-analysis of RCTs and based on evidence of moderate certainty, physical activity in comparison to control intervention was associated with: (i) better glucose homeostasis profile [WMD of glucose, insulin and Assessment of Insulin Resistance (HOMA-IR) were - 3.26 mg/dl (95% CI - 5.12 to - 1.39), - 3.19 µU/ml (95% CI - 3.96 to - 2.43)] and - 0.47 (95% CI - 0.60 to - 0.35), respectively], and (ii) improved cardiorespiratory fitness [WMD of relative and absolute oxygen uptake relative (VO2) were 4.53 ml/kg/min (95% CI 3.11, 5.96) and 0.26 L/min (95% CI 0.21, 0.32) respectively]. No differences were observed in blood pressure, heart rate and lipids (based on evidence of low/moderate certainty). In meta-analysis of cross-sectional studies and based on the evidence of very low to low certainty, glucose [WMD - 3.25 mg/dl (95% CI - 5.36, - 1.14)], insulin [- 2.12 µU/ml (95% CI - 4.21 to - 0.03)] and total cholesterol [WMD - 6.72 mg/dl (95% CI - 13.09, - 0.34)] were lower and HDL [WMD 3.86 mg/dl (95% CI 0.66, 7.05)] and catalase [0.07 UgHb-1 (95% CI 0.03, 0.11)] were higher in physically active SCI individuals in comparison to reference groups. Based on limited number of cross-sectional studies, better parameters of systolic and diastolic cardiac function and lower carotid intima media thickness were found in physically active groups. Methodologically sound clinical trials and prospective observational studies are required to further elaborate the impact of different physical activity prescriptions alone or in combination with other life-style interventions on CMD risk factors in SCI individuals.

The challenges characterizing the lived experience of caregiving. A qualitative study in the field of spinal cord injury.

STUDY DESIGN: Qualitative exploratory study. OBJECTIVES: To explore the lived experience of SCI caregivers, with a focus on the challenges of their role. SETTING: Caregivers of people with SCI living in the community in Switzerland. METHODS: Data were collected through semi-structured interviews. Thematic analysis was performed. RESULTS: The sample included 22 participants (16 women, 15 life partners) with a mean age of 61 years who had been caregivers for an average of 18 years. Caregiving in SCI seemed to be characterized by two phases. The first phase was relatively short and was central to becoming a caregiver; it was marked by challenges related to adjusting to the role of caregiver (e.g., dealing with shock, feeling unprepared). The second phase is lifelong and is characterized by a number of recurrent challenges related to balancing caregiving and personal life (e.g., having to prioritize caregiving over personal wishes, negotiating tasks and workload). Challenges related to lacking appropriate housing, facing financial uncertainty and dealing with bureaucracy were noted during both phases. Caregivers had to deal with these challenges to stay in step with life changes and newly emerging needs. CONCLUSIONS: Informal caregivers have a major role in supporting people with SCI. But their needs are not static. Any strategy to empower them has to adapt to an evolving role characterized by multiple tasks and challenges. A functional relationship between caregivers and care recipients is based on the recognition of their individualities and the different phases of adaptation, which is also an enriching process.

Factors influencing specialized health care utilization by individuals with spinal cord injury: a cross-sectional survey.

STUDY DESIGN: Cross-sectional observational study using data from the second community survey of the Swiss Spinal Cord Injury Cohort Study (Survey 2017) conducted between 03/2017 and 03/2018. OBJECTIVES: To identify facilitators of and barriers to utilizing SCI-specialized outpatient clinic and inpatient care by individuals with spinal cord injury (SCI). SETTING: Community. METHODS: Multivariable logistic regression was used to identify factors influencing (1) the attendance at annual check-ups at SCI-specialized treatment facilities, (2) the utilization of SCI-specialized outpatient clinic care by those who utilized any outpatient clinic care, and (3) the utilization of SCI-specialized inpatient care by those who were hospitalized. Multiple imputation was used to account for missing data. RESULTS: Out of 3959 eligible individuals, 1294 completed the questionnaire (response rate 33%). In the last 12 months, 51% of study participants attended the annual check-up, 33% of outpatient clinic care users utilized SCI-specialized outpatient clinic care, and 44% of those who were hospitalized were hospitalized at a SCI center. Annual check-ups were attended less by women, the elderly, and those with nontraumatic SCI. SCI-specialized outpatient clinic care was less likely to be utilized when individuals with SCI were living with cancer, lived farther away from SCI-specialized treatment facilities or in a minority language region. Specialized inpatient care was less likely to be utilized by women and those with incomplete lesions. CONCLUSIONS: SCI-specialized outpatient clinic care must be provided near the residence of individuals with SCI, otherwise non-specialized care is utilized. The reasons why women utilize SCI-specialized care less frequently than men merits further investigation.

Methodology and study population of the second Swiss national community survey of functioning after spinal cord injury.

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.

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

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.

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

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.

Cohort Profile of the International Spinal Cord Injury Community Survey Implemented in 22 Countries.

OBJECTIVES: To detail the methodological features of the first International Spinal Cord Injury (InSCI) Community Survey by describing recruitment and data collection procedures, and to report on the recruitment results and basic characteristics of participants by country and income setting. DESIGN: Cross-sectional survey. SETTING: Community setting in 22 countries representing all 6 World Health Organization regions. PARTICIPANTS: Individuals (N=12,591) with traumatic or non-traumatic spinal cord injury (SCI) aged over 18 years. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Recruitment and data collection procedures, recruitment results, and basic sociodemographic and lesion characteristics of participants. RESULTS: Eight countries used predefined sampling frames and 14 countries applied convenience sampling for recruitment. Most countries recruited participants through specialized rehabilitation facilities, patient organizations, or acute and general hospitals. Modes of approaching potential participants depended on the sampling strategy and multiple response modes were offered to maximize participation. Contact rates ranged from 33% to 98%, cooperation rates ranged from 29% to 90%, and response rates ranged from 23% to 54%. The majority of participants were men (73%), the median age was 52 years (interquartile range, 40-63y), 60% had a partner, 8% reported that they were born in another country than where they were currently residing, and the median length of education was 12 years (interquartile range, 9-15y). Paraplegia was the main diagnosis (63%), traumatic etiologies were the major cause of injury (81%), and the median time since injury (TSI) was 9 years (interquartile range, 4-19y). Compared with participants from lower income settings, participants from higher income settings were over-represented and, in general, were older, more often diagnosed with tetraplegia, had a longer TSI, higher education, and were more often born in a country different than their current residence country. CONCLUSIONS: The successful implementation of the InSCI survey enables the comparison of the situation of individuals with SCI around the world and constitutes a crucial starting point for an international learning experience.

Outpatient and community care for preventing pressure injuries in spinal cord injury. A qualitative study of service users' and providers' experience.

STUDY DESIGN: Qualitative exploratory study. OBJECTIVES: 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. SETTING: Switzerland. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Prevalence of and factors associated with expressed and unmet service needs reported by persons with spinal cord injury living in the community.

STUDY DESIGN: Observational study. OBJECTIVES: To determine the prevalence, predictors, and consequences of self-reported service needs among community-dwelling 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.

What influences the use of professional home care for individuals with spinal cord injury? A cross-sectional study on family caregivers.

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.

Towards comprehensive and transparent reporting: context-specific additions to the ICF taxonomy for medical evaluations of work capacity involving claimants with chronic widespread pain and low back pain.

BACKGROUND: Medical evaluations of work capacity provide key information for decisions on a claimant's eligibility for disability benefits. In recent years, the evaluations have been increasingly criticized for low transparency and poor standardization. The International Classification of Functioning, Disability and Health (ICF) provides a comprehensive spectrum of categories for reporting functioning and its determinants in terms of impairments and contextual factors and could facilitate transparent and standardized documentation of medical evaluations of work capacity. However, the comprehensiveness of the ICF taxonomy in this particular context has not been empirically examined. In this study, we wanted to identify potential context-specific additions to the ICF for its application in medical evaluations of work capacity involving chronic widespread pain (CWP) and low back pain (LBP). METHODS: A retrospective content analysis of Swiss medical reports was conducted by using the ICF for data coding. Concepts not appropriately classifiable with ICF categories were labeled as specification categories (i.e. context-specific additions) and were assigned to predefined specification areas (i.e. precision, coverage, personal factors, and broad concepts). Relevant specification categories for medical evaluations of work capacity involving CWP and LBP were determined by calculating their relative frequency across reports and setting a relevance threshold. RESULTS: Forty-three specification categories for CWP and fifty-two for LBP reports passed the threshold. In both groups of reports, precision was the most frequent specification area, followed by personal factors. CONCLUSIONS: The ICF taxonomy represents a universally applicable standard for reporting health and functioning information. However, when applying the ICF for comprehensive and transparent reporting in medical evaluations of work capacity involving CWP and LBP context-specific additions are needed. This is particularly true for the documentation of specific pain-related issues, work activities and personal factors. To ensure the practicability of the multidisciplinary evaluation process, the large number of ICF categories and context-specific additions necessary for comprehensive documentation could be specifically allocated to the disciplines in charge of their assessment.

Two decades of the International Classification of Functioning, Disability and Health (ICF) in health research: a bibliometric analysis.

Introduction: We conducted a twenty-year bibliometric analysis of scientific literature, focusing on the trends of The International Classification of Functioning, Disability and Health (ICF) use in health research.Methods: We retrieved 3'467 documents published between 2002 and 2022, sourced from the Web of Science Core Collection database. We used the Bibliometrix and VoSviewer tools for descriptive analyses and data visualization.Results: Our findings indicate a significant increase in ICF application since 2011, with an average annual growth rate of 13.19%. Prominent contributions were observed globally, with notable outputs from the U.S., Canada, Germany, the Netherlands, and Switzerland. The Ludwig Maximilian University Munich, Swiss Paraplegic Research, and McMaster University authored a quarter of the documents (24.6%). Collaboration networks of countries and institutions revealed robust partnerships, particularly between Germany and Switzerland. "Rehabilitation" was the most frequently occurring keyword, although a thematic shift towards epidemiology, aging, and health-related quality of life was observed post-2020. While rehabilitation remained the primary thematic focus, literature post-2020 highlighted epidemiology as a growing area of interest.Conclusions: A steady increase in ICF-based research mirrors the rising interest in a biopsychosocial and person-centered approach to healthcare. However, the literature is primarily produced by high-resource countries, with underrepresentation from low and middle-resource countries, suggesting an area of future research to address this discrepancy.

The International Classification of Functioning, Disability and Health (ICF) serves as a universal framework for describing functioning and disability.The increasing application of the ICF in rehabilitation research underscores its value in developing comprehensive, person-centered care plans.By integrating the ICF, rehabilitation programs can better address the multifaceted needs of patients, facilitating improved outcomes in participation and quality of life.The observed thematic shift towards aging and health-related quality of life post-2020 indicates the growing relevance of the ICF in managing the complex health challenges of an aging population.The study also suggests that expanding the ICF implementation in low- and middle-income countries could bridge existing disparities in rehabilitation services, promoting global health equity.

Nurses' intervention goal categories for persons with spinal cord injury based on the International Classification of Functioning, Disability and Health: an international Delphi survey.

AIM: To examine whether the International Classification of Functioning, Disability and Health can be used as standard language to express intervention goals on the part of nurses caring for persons with spinal cord injury. BACKGROUND: This classification is multipurpose and is designed to organize a wide range of health-related information that can be used in any healthcare context and especially by interdisciplinary teams. DESIGN: A three-round, consensus-building, electronic-mail survey using the Delphi technique. METHODS: In the Delphi process spinal cord injury nurses were asked to name the problems, resources, and aspects of the environment that they address when treating patients with spinal cord injury. The answers were linked to the categories of the International Classification of Functioning, Disability and Health. The study was carried out in 2007. RESULTS: Nurses (N = 35) from 17 countries provided 823 answers that were linked to a set of 143 categories, 24 personal factors, and 51 concepts categorized as 'Not-covered', of which 32 were areas of fundamental importance to nurses. These were mainly risks that persons with spinal cord injury may face, such as the risk for future impairments. CONCLUSION: The use of the data set resulting from this study should help determine and document the needs that pertain to spinal cord injury nursing on an international level. Future research should confirm the usefulness of such a data set in clinical practice and can contribute to the update process of the International Classification of Functioning, Disability and Health.

The economic value of long-term family caregiving. The situation of caregivers of persons with spinal cord injury in Switzerland.

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.

Coping strategies of family caregivers in spinal cord injury: a qualitative study.

PURPOSE: To identify the coping strategies used by family caregivers of persons with spinal cord injury (SCI) in Switzerland in order to develop tailored support programs. MATERIALS AND METHODS: Purposive sample of >18 years participants, speaking an official Swiss language fluently, being family caregivers of persons with SCI for at least 4 years, and perceiving either a high or low burden in relation to caregiving. Data were collected through face-to-face semi-structured interviews (N = 22). Thematic analysis was performed. RESULTS: Four main coping strategies were identified: reappraisal, active acceptance, setting limits to the caregiver role, and seeking support. These strategies can be used one at a time or combined, and at different times of a caregiver pathway. Our analysis highlighted that caregivers need skills to implement these strategies (e.g., self-evaluation skills). CONCLUSIONS: Caregivers of persons with SCI develop cognitive coping strategies to make sense of the situation and establish a "new normal" and problem-focused coping strategies to deal with their new tasks and role. These strategies do not seem to be typical only of SCI caregivers. Hence, interventions that worked for caregivers in other fields could be adapted. Rehabilitation centers should systematically integrate programs targeted to caregivers into their offerings.IMPLICATIONS FOR REHABILITATIONHealthcare systems need to develop educational and support measures for both persons with a health condition and their caregivers.Caregivers should become long-term partners in rehabilitation and a regular and structured needs assessment should be offered.Interventions that worked for caregivers in other fields can be adapted to support also caregivers in SCI.Educational and support programs dedicated to caregivers should teach not only how to perform caregiving tasks but also how to balance between responding to the care recipient's needs and their own needs.

A Rasch-Based Comparison of the Functional Independence Measure and Spinal Cord Independence Measure for Outcome and Quality in the Rehabilitation of Persons with Spinal Cord Injury.

OBJECTIVE: The Functional Independence Measure (FIM™) and spinal cord injury (SCI)-specific Spinal Cord Independence Measure (SCIM) are commonly used tools for outcome measurement and quality reporting in rehabilitation. The objective of this study was to investigate the psychometric properties of FIM™ and SCIM and to equate the 2 scales. METHODS: First, content equivalence of FIM™ and SCIM was established through qualitative linking with the International Classification for Functioning, Disability and Health (ICF). Secondly, a Rasch analysis of overlapping contents determined the metric properties of the scales and provided the empirical basis for scale equating. Furthermore, a transformation table for FIM™ and SCIM was created and evaluated. SUBJECTS: Patients with SCI in Swiss inpatient rehabilitation in 2017-18. RESULTS: The ICF linking and a separate Rasch analysis of FIM™ restricted the analysis to the motor scales of FIM™ and SCIM. The Rasch analysis of these scales showed good metric properties. The co-calibration of FIM™ and SCIM motor scores was supported with good fit to the Rasch model. The operational range of SCIM is larger than for FIM™ motor scale. DISCUSSION: This study supports the advantage of using SCIM compared with FIM™ for assessing the functional independence of patients with SCI in rehabilitation.

Professional home care and the objective care burden for family caregivers of persons with spinal cord injury: Cross sectional survey.

Background: Spinal cord injury imposes high demands on family caregivers providing long-term care. Professional home care has been suggested for family caregivers' relief. However, it is not clear whether professional home care can achieve the goal of relieving family caregivers. Objective: To quantify to what extent professional home care was used as a relief or replacement for family caregivers, using the case of care for persons with spinal cord injury in Switzerland. Design: Cross-sectional survey. Setting: Community setting in Switzerland. Participants: 717 family caregivers of persons with spinal cord injury living at home. Methods: Linear regression analyses were applied to investigate the relationship between care hours by family caregivers and the use of professional home care. Percentages of family caregivers that assisted in different tasks, and their time investment in the tasks, were contrasted between those with and without professional home care. Multiple logistic regression compared the likelihood of specific tasks being assisted by family caregivers dependent on whether professional home care was in place. The reasons given for not hiring more professional home care despite unmet needs were described with relative frequencies. Results: Adjusted for non-utilization, care hours of family caregivers had a positive, but insignificant, relationship with the hours of professional home care (Coef. = 0.21, 95% CI: -0.05-0.47). Assistance in activities of daily living was more frequent in family caregivers with professional home care. Eating and drinking assistance was provided by 47% of family caregivers with professional home care (versus 18% of those without professional home care). The most frequent task in instrumental activities of daily living was housekeeping (88% of family caregivers with professional home care and 83% of those without professional home care). After adjusting for characteristics of the caregivers and care recipients, significantly lower odds of assistance were found in washing feet (OR 0.39, 95% CI: 0.22-0.71), transferring to the toilet or bathtub (OR 0.53, 95% CI: 0.29-0.96), and climbing stairs (OR 0.26, 95% CI: 0.09-0.69). Higher odds of assistance were found in respiratory care (OR 2.22, 95% CI: 1.04-4.74) and bladder management (OR 1.99, 95% CI: 1.05-3.76) with professional home care in place. No significant difference was found in other tasks. Conclusion: Professional home care is a strong support to caregivers in high care demand situations, but it is not a replacement. The present study recommends further relief, empowerment, and acknowledgement for family caregivers.What is already known about the topic?• Evidence has shown that family caregivers replace paid domestic help or postpone the use of professional home care in the elderly population.• The large involvement translates into highly stressed family caregivers, for whom professional home care could serve as a relief.• Family caregivers reported low utilization of professional home care and some frustration with its use.What this paper adds• Family caregivers' time investment and involvement in tasks were adjusted based on the care demand of the care recipients.• Despite the presence of professional home care, family caregivers still invested a considerable amount of time and were heavily involved in activities of daily living.• Professional home care provided strong support for family caregivers in instances of higher care demand.