International Spinal Cord Injury Survey Research Articles

Leisure-time Physical Activity in People with Spinal Cord Injury: A Population-based Community Sample

Objectives: To examine leisure-time physical activity (LTPA) volume in the Australian spinal cord injury (SCI) population while exploring its associations with sociodemographic and injury-related characteristics. Methods: This study was a cross-sectional analysis of the Australian cohort of the International Spinal Cord Injury Survey. The study included 1579 participants aged 18 years or older with an SCI. Analyses included summary statistics, analysis of variance, and regression modelling. Results: Approximately 58% (n = 863) of participants reported some participation in LTPA. The average (SD) total LTPA per week was 333 (318) minutes. Males, younger people, traumatically injured individuals, participants with less time since their injury, and those who required less assistance to ambulate reported between 50% and 200% more engagement in LTPA than their counterparts. Only 204 (13%) participants were compliant with the current SCI-specific physical activity guidelines for fitness improvement. Sociodemographic and injury-related characteristics explained a 2.9% variance for total LTPA, but the model was statistically insignificant. Conclusion: Participation in LTPA in the Australian SCI population was low, and not enough activity was performed at intensities that elicit healthful change. These data add to the growing body of LTPA and physical activity data for the global SCI population. The trends of physical inactivity are globally consistent. Some sociodemographic variables and injury-related characteristics influence the volume and type of LTPA performed, but their effect is mild. Urgent attention is warranted to improve LTPA volume globally.

Measuring functioning and disability in Korea: comparing general and dedicated surveys using the ICF

Abstract Background Functioning is the third health indicator besides mortality and morbidity. Although Korea periodically collects functioning information, the functioning indicator has not been generated yet. This study aimed to evaluate how functioning information is currently collected in Korea’s health and disability surveys, especially in terms of comparability and comprehensiveness, using the International Classification of Functioning, Disability and Health (ICF) as a reference framework. Methods Data sources included three health and disability surveys in Korea (Population and Housing Census, Korean National Health and Nutrition Examination Survey, Survey on the Living condition of Persons with Disabilities) and two international ICF-based surveys (International Spinal Cord Injury Survey, Model Disability Survey). Functioning information was linked by category to the ICF Generic-30 Set utilizing the ICF linking rules. Results Three ICF categories (walking, washing oneself, dressing) were covered by all the data sources. Excluding the Census, which inherently differs from the other data sources, all the surveys addressed six ICF categories-b152 emotional functions; b280 sensation of pain; d240 handling stress and other psychological demands; d450 walking; d510 washing oneself; d540 dressing. Despite of the common ICF categories, important differences in the operationalization of questions and response options were found. Conclusions The overlap of content of health and disability surveys in Korea enables interoperability with other data sources. Available functioning data can be used for estimating the functioning indicator and metric, as recommended by WHO, which can serve as a valuable epidemiological indicator for complementing mortality and morbidity indicators and for estimating and monitoring rehabilitation or long-term care needs of the Korean population. Key messages • Korea’s health and disability surveys periodically collect functioning information at the national level, and the level of overlap across surveys enables interoperability with other data sources. • This study can contribute to generate a Korean common health metric based on functioning that can serve as a valuable epidemiological indicator by utilizing the international standard ICF.

The International Spinal Cord Injury Survey in Iran (InSCI-IR)

Background and Aim: Spinal cord injury patients are faced with many neglected side effects that threaten the health, wealth, and life of the patients and their families. For this purpose, the international spinal cord injury survey (InSCI) was conducted in 2017 by adding 22 countries to follow up the patients facing spinal cord injury. Iran as a developing country was added to the survey in 2022 focusing on the catastrophic health expenditures of spinal cord injury patients. The survey is named: The International spinal cord injury survey in Iran (InSCI -IR). Methods and Materials/Patients: This study will be performed in Guilan Province, Iran and the primary data of the patients will be gathered from the Poursina Hospital of Rasht and the Iranian National Registry of Spinal Cord Injury Patients. InSCI-IR contains two parts; the general questionnaire which gathers the data for the InSCI and the specific questionnaire which gathers data for calculating catastrophic expenditures. Results: It is estimated that 600 patients will participate in the study and more than 200 cases are faced with paraplegia or tetraplegia. The international questionnaire contains 11 sections on the living situation of patients with SCI, sociodemographic questions, injury characteristics, mental and physical health, feeling and work conditions, environmental factors, and access to health services. The catastrophic expenditure part contains questions about the cost of treatment, medication, caregiving, transportation, and household income loss related to spinal cord injury, wealth index, and household total income. Both parts will be edited in psychometrics processes.

Gender differences in patient experience among persons with spinal cord injury: A comparison across 22 countries

BackgroundDue to the majority of males within the population of persons with spinal cord injuries (SCI), a male-oriented perception of persons with SCI might affect care provision in the way of prioritizing male needs. ObjectiveThe objective of this cross-sectional study is to describe the patient experience of persons with SCI by gender. MethodsThis study was based on the International Spinal Cord Injury Survey with 12,588 participants from 22 countries. An interval-based patient experience score was attained by partial credit model. Regression analysis was used in exploring the association between patient experience and gender. ResultsParticipants reported very good and good patient experience. Respectful treatment was reported by 78 % of participants; clear explanations by 75 %; involvement in decision-making by 71 %; satisfaction with services by 62 %. The average patient experience score was equal among males and females (average: 64, range: 0–100), with the highest score in participants from the USA (78) and the lowest – in Morocco (44). Patient experience score was not associated with gender. Females had lower odds of reporting better decision-making involvement, yet higher odds of better satisfaction. Older participants, with higher household income and better self-rated health, had lower odds of being satisfied. ConclusionThe majority of persons with SCI rated their experience as good or very good. Females were more likely to report higher satisfaction with services and lower involvement in decision-making. For other patient experience categories and the overall patient experience score, no association with gender was found.

Health System's Role in Facilitating Health Service Access among Persons with Spinal Cord Injury across 22 Countries.

(1) Background: Despite efforts to improve access to health services, between- and within-country access inequalities remain, especially for individuals with complex disabling conditions like spinal cord injury (SCI). Persons with SCI require regular multidisciplinary follow-up care yet experience more access barriers than the general population. This study examines health system characteristics associated with access among persons with SCI across 22 countries. (2) Methods: Study data are from the International Spinal Cord Injury Survey with 12,588 participants with SCI across 22 countries. Cluster analysis was used to identify service access clusters based on reported access restrictions. The association between service access and health system characteristics (health workforce, infrastructure density, health expenditure) was determined by means of classification and regression trees. (3) Results: Unmet needs were reported by 17% of participants: lowest (10%) in Japan, Spain, and Switzerland (cluster 1) and highest (62%) in Morocco (cluster 8). The country of residence was the most important factor in facilitating access. Those reporting access restrictions were more likely to live in Morocco, to be in the lowest income decile, with multiple comorbidities (Secondary Conditions Scale (SCI-SCS) score > 29) and low functioning status (Spinal Cord Independence Measure score < 53). Those less likely to report access restriction tended to reside in all other countries except Brazil, China, Malaysia, Morocco, Poland, South Africa, and South Korea and have fewer comorbidities (SCI-SCS < 23). (4) Conclusions: The country of residence was the most important factor in facilitating health service access. Following the country of residence, higher income and better health were the most important facilitators of service access. Health service availability and affordability were reported as the most frequent health access barriers.

Unmet healthcare needs and health inequalities in people with spinal cord injury: a direct regression inequality decomposition

BackgroundInequality in health is a prevalent and growing concern among countries where people with disabilities are disproportionately affected. Unmet healthcare needs explain a large part of the observed inequalities between and within countries; however, there are other causes, many non-modifiable, that also play a role.AimThis article explores the difference in health across income levels in populations with spinal cord injury (SCI). SCI is of special interest in the study of health systems, as it is an irreversible, long-term health condition that combines a high level of impairment with subsequent comorbidities.MethodsWe estimated the importance of modifiable and non-modifiable factors that explain health inequalities through a direct regression approach. We used two health outcomes: years living with the injury and a comorbidity index. Data come from the International Spinal Cord Injury Survey (InSCI), which has individual data on people with SCI in 22 countries around the world. Due to the heterogeneity of the data, the results were estimated country by country.ResultsOn average, the results exhibit a prevalence of pro-rich inequalities, i.e., better health outcomes are more likely observed among high-income groups. For the years living with the injury, the inequality is mostly explained by non-modifiable factors, like the age at the time of the injury. In contrast, for the comorbidity index, inequality is mostly explained by unmet healthcare needs and the cause of the injury, which are modifiable factors.ConclusionsA significant portion of health inequalities is explained by modifiable factors like unmet healthcare needs or the type of accident. This result is prevalent in low, middle, and high-income countries, with pervasive effects for vulnerable populations like people with SCI, who, at the same time are highly dependent on the health system. To reduce inequity, it is important not only to address problems from public health but from inequalities of opportunities, risks, and income in the population.Highlights• Better health status is evident among high-income groups, which is reflected in pro-rich inequalities.• Age at the time of the injury is the most important factor to explain inequalities in years living with the injury.• Unmet health care needs are the most important factor to explain inequalities in comorbidities.• The inequality in health varies by country dependent upon socioeconomic factors.

Healthcare service utilization patterns and patient experience in persons with spinal cord injury: a comparison across 22 countries

BackgroundPersons with spinal cord injury frequently visit numerous clinical settings. Such all-around experience of the system may serve as a comprehensive experience indicator. This study compared the patient experience of persons with chronic SCI in relation to healthcare service utilization patterns in 22 countries, hypothesizing that primary-care oriented patterns would offer a better experience.MethodsThis study was based on International Spinal Cord Injury Survey with 12,588 participants across 22 countries worldwide. Utilization patterns/clusters were identified by cluster analysis and experience score – by the partial credit model. The association between healthcare utilization and experience at the provider and cluster level was explored by regression analysis.ResultsThe highest share of visits was to primary care physicians (18%) and rehabilitation physicians (16%). Utilization patterns had diverse orientations: from primary care to specialized and from inpatient to outpatient. The experience was reported as very good and good across different dimensions: 84% reported respectful treatment; 81% – clear explanations; 77% – involvement in decision making; 65% – satisfaction with care. The average experience score (0–100) was 64, highest – 74 (Brazil) and the lowest – 52 (Japan, South Korea). Service utilization at provider and at cluster levels were associated with patient experience, but no utilization pattern resulted in uniformly better patient experience.ConclusionWhile there are distinct patterns between countries on how persons with chronic SCI navigate the healthcare system, we found that different utilization patterns led to similar patient experience. The observed difference in patient experience is likely determined by other contextual factors than service utilization.

Which factors have an association to the Quality of Life (QoL) of people with acquired Spinal Cord Injury (SCI)? A cross-sectional explorative observational study

Study designCross-sectional explorative observational study.ObjectivesTo identify factors which have an association to the self-perceived Quality of Life (QoL) for persons with acquired spinal cord injury (SCI).SettingEight specialized SCI-centers in Germany. The GerSCI survey is the German part of the International Spinal Cord Injury Survey (InSCI).MethodsSelf-disclosure questionnaire, created from the InSCI group, translated and adapted for Germany. The questionnaire collects a very broad range of data and, and due to its design as a self-report, is particularly suitable for the analysis on QoL. Because of the content, which is binding for all participating states, it allows a direct comparability of the results. Included in Germany were 1479 persons with acquired SCI aged 18 years and older.ResultsVarious factors were identified with high associations to QoL, including changeable and unchangeable ones, such as those of particular importance: pain, sleep problems, sexual dysfunction, age, and time since onset of SCI. Some results confirmed reports of previous studies, others were surprising.Conclusionthis study provides an important basis for the planned analysis of the InSCI participating countries in the 6 WHO regions. Germany was able to contribute the largest study population. The concrete study design of InSCI allows us to directly compare data and helps us to improve ourselves within the framework of a “learning health system”. Medical measures can be orientated towards the found results, in order to ensure the best possible care and support by the therapeutic team, individually adapted to the person, place of residence and impairment.

Health inequalities and income for people with spinal cord injury. A comparison between and within countries

Income and health are related in a bi-directional manner, whereby level of income affects health and vice versa. People in poorer households tend to experience worse health status and higher mortality rates than people in wealthier households, and, at the same time, having poor health could restrict workability leading to less income. This gap exists in almost every country, and it is more pronounced in more unequal countries and in vulnerable populations, such as people experiencing disability. The goal of this paper is to estimate the health-income gap in people with a Spinal Cord Injury (SCI), which is a chronic health condition often associated with multiple comorbidities that leads to disability. As data on mortality is inexistent, to estimate the health-income gap for persons with SCI, this paper uses two health outcomes: the number of years a person has lived with the injury, and a comorbidity index. Data was obtained from the International Spinal Cord Injury survey (InSCI), which is the first worldwide survey on community-dwelling persons with SCI. To compare across countries, the health outcomes were adjusted through hierarchical models, accounting for country fixed-effects, individual characteristics such as age and gender, and injury characteristics (cause, type and degree). Our results suggest that for the years living with SCI, the gap varies from 1 to 6 years between the lowest and the highest income groups. The main driver of such a difference is the cause of injury, where injuries caused by work accidents showed the biggest gap. Similarly, for the comorbidity index, persons with SCI in poorer deciles reported significantly more comorbidities, forty times more, than people in richer deciles.

Environmental barriers and participation restrictions in community-dwelling individuals with spinal cord injury in Jiangsu and Sichuan Provinces of China: Results from a cross-sectional survey

Objective: (1) to describe environmental barriers and participation restrictions experienced by people with spinal cord injury (SCI) from China, (2) to examine associations between lesion characteristics and participation restrictions, considering a mediating role of environmental barriers, (3) to identify those environmental barriers that have the largest influence on participation. Design: Cross-sectional study. This study is part of the International Spinal Cord Injury Survey (InSCI). Setting: Community, Jiangsu and Sichuan Province, China. Participants: 1355 persons with SCI. Interventions: Not applicable. Outcome Measures: Participation restrictions were measured with items from the Model Disability Survey, Environmental Barriers were measured with the Nottwil Environmental Factors Inventory-Short Form. Results: Participants experienced a median of five (IQR 1-9) environmental barriers and five (IQR 0-9) participation restrictions. Environmental barriers were mainly reported in relation to climate, insufficient resources and accessibility, and participation restrictions mainly occurred in using public transportation, taking care of others, and getting to places. In an adjusted zero-inflated Poisson model, people with more severe injuries reported a greater number of environmental barriers (complete injury: IRR = 1.31, 95%CI = [1.24,1.38]) and participation restrictions (tetraplegia: IRR = 1.15, 95%CI = [1.10,1.21]; complete injury: IRR = 1.25, 95%CI = [1.18,1.31]). Moreover, environmental barriers (IRR = 1.07, 95%CI = [1.06,1.08]) were a significant predictor of participation restrictions and partially mediated the association of lesion completeness with participation restrictions. Barriers related to accessibility of public places (IRR = 1.47, 95%CI = [1.33,1.62]), accessing homes (IRR = 1.32, 95%CI = [1.21,1.44]), long distance transportation (IRR = 1.11, 95%CI = [1.04,1.20]), communication devices (IRR = 1.07, 95%CI = [1.01,1.15]) and state services (IRR = 1.10, 95%CI = [1.02,1.19]) had the greatest negative impact on participation. Conclusion: Social participation of people with SCI is seriously restricted in China. Removing environmental barriers will be an important element of programs to address this problem.

Promoting factors and barriers to participation in working life for people with spinal cord injury

BackgroundIt is still difficult for people with physical impairments to be and remain equally integrated into the labour market. For this reason, the question of occupational activity has explicitly been examined by the German Spinal Cord Injury Survey (GerSCI) in order to identify barriers and facilitators for labour market participation.MethodsCross-sectional explorative observational study. The GerSCI survey is the German part of the International Spinal Cord Injury Survey (InSCI). Using survey data from persons recruited at eight specialised SCI-centres in Germany. Participants: 1.479 persons with Spinal Cord Injury (SCI) aged 18 years and older.ResultsIn a self-disclosure questionnaire, persons with SCI show themselves as a professionally well-educated and highly motivated group with most of them aiming at gainful employment and considering themselves fit for work. Many changeable and non-changeable factors have been found, which showed a high correlation with the return to work after acquired SCI.ConclusionEducation and pain belong to the most critical factors and thereby possible approaches to increase the level of employment, which is essential and highly relevant not only for earning money but also for self-confidence and social integration. SCI has many dimensions in itself; support also should be multidimensional. Study results might help to improve participation.

The International Spinal Cord Injury Survey: The Way Forward

As a community survey of individuals living with spinal cord injury in 22 countries, representing all 6 of the World Health Organization regions, the International Spinal Cord Injury (InSCI) community survey is one of the few surveys that highlights not only basic medical issues, but also the impact of spinal cord injury (SCI) on the everyday lives of people. The InSCI survey is part of a much larger project known as the Learning Health System for SCI Initiative (LHS-SCI). The objective of this article is to highlight some of the ongoing and planned next steps at the national and international levels. The implementation phase of the LHS-SCI initiative, beginning with the publication of primary results and extending until 2023, will use the results of the InSCI survey as evidence for implementation of recommendations for improving the societal response to the needs of individuals with SCI at the national level. To illustrate the variety of implementation activities currently underway, we provide country examples from Australia, Morocco, Malaysia, and Germany to demonstrate the diversity of approaches to the implementation of InSCI data. The implementation phase of the LHS-SCI initiative promises to usher in a new era of SCI research that will be seamlessly linked to ongoing and effective implementation actions, at both international and national levels and across settings from clinical practice, health systems management, and national policy.

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

ObjectivesTo 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. DesignCross-sectional survey. SettingCommunity setting in 22 countries representing all 6 World Health Organization regions. ParticipantsIndividuals (N=12,591) with traumatic or non-traumatic spinal cord injury (SCI) aged over 18 years. InterventionsNot applicable. Main Outcome MeasuresRecruitment and data collection procedures, recruitment results, and basic sociodemographic and lesion characteristics of participants. ResultsEight 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. ConclusionsThe 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.

Spinal Cord Injury in Germany - a Survey on the Living and Care Situation of People with Spinal Cord Injury

Multiple organizations like UN and WHO call for the collection of internationally comparable data on living and supply conditions of people with disabilities. Furthermore, reliable national data are necessary for ensuring appropriate care. Regarding patients with Spinal Cord Injury (SCI) in Germany, only data on diagnostics or therapeutic interventions is currently available. The International Spinal Cord Injury Survey aims at collecting reliable data of people with SCI in 21 countries and developing recommendations for actions to be taken by policy-makers and other decision-makers. In 2017, eight specialized SCI-centers across Germany sent a standardized questionnaire to their patients who had diagnosis of SCI, and were older than 18 years (n=5,598). The questionnaire could be completed paper-based or online. 1,479 patients participated in the study and were included in data analysis. On average, participants were 55.3 years (SD=14.6) old, ¾ were male. The mean time of onset of paralysis was 13.9 years. Two thirds of the spinal cord injury causes were traumatic. In 51.2% SCI was classified as paraplegia. The most frequently cited health problem was sexual dysfunction. Medical treatment for this problem was rarely used. Serious environmental barriers were the inadequate accessibility of private households and public places. 42.5% of the respondents in working age were employed, which is 10% less than in Switzerland. Serious problems in environmental barriers, medical care and labor market participation were identified for people with SCI. The results will be reported to and discussed with political decision makers and further actors to create solutions. This requires extensive efforts, like modification in building law and home support.

Perceived environmental barriers for people with spinal cord injury in Germany and their influence on quality of life.

The German Spinal Cord Injury Survey is part of the International Spinal Cord Injury Survey, which aims to collect data about the life experience of persons with spinal cord injury worldwide. This paper reports on the perceived environmental barriers of the German study population and their associations with quality of life. Cross-sectional explorative observational study using survey data. A total of 1,479 persons with spinal cord injury aged 18 years and older. After descriptive analyses, exploratory factor analysis was used to build groups of environmental barriers. Logistic regressions were performed to assess correlates of perceived environmental barriers. Spearman's correlations were used to analyse the association between perceived barriers and quality of life. Barriers regarding infrastructure had a relatively large impact. Barriers in relation to people's attitudes towards spinal cord injury and the equipment of people with spinal cord injury had a relatively small impact on the lives of people with spinal cord injury. Several subpopulations showed a higher risk in experiencing barriers. Quality of life decreased with increasing experience of barriers. The most life-hardening barriers were identified related to infrastructure, a category in which most barriers are modifiable, for example, buildings or transportation.

The impact of environmental factors on activity and participations of persons with spinal cord injury in Korea

There is lack of data on the lived experiences of persons with spinal cord injury (SCI) which may lead to lack of proper health policy and service provision for optimal functioning in their everyday lives. To resolve this issue, International spinal cord injury (InSCI) survey was launched in 28 countries in 2017. In this study, we aim to describe the impact of environmental factors on the activity and participation in persons with SCI based on the InSCI survey conducted in Korea. Korean version of InSCI survey questionnaire was used for data collection which consists of 125 items that cover relevant information on all aspects of lived experience according to the ICF categories. Community dwelling adults who have sustained traumatic or non-traumatic SCI were recruited using the databases of National Rehabilitation Center and Korean Spinal cord injury Association. For the data analysis, items on ‘environmental factors’ were grouped into three categories of ‘accessibility’, ‘service provision’, and ‘attitudes of others’ by using factor and reliability analysis. Items on activity and participation were grouped into four categories–‘coping issues’, ‘health management’, ‘physical activity’, and ‘transportation’ by using the same analysis. Multivariate regression was used for the analysis of the impact of the environmental factors on the four categories of activity and participation. A total of 892 out of 6047 eligible people participated in the survey through online and paper-pencil version questionnaires. Multivariate regression analysis showed that environmental categories ( P < 0.05) except ‘attitudes of others’ ( P = 0.755) had statistically significant impact on activity and participation of persons with SCI. As the first community survey for persons with SCI in Korea, InSCI study may reveal many aspects of the lives of persons with SCI. It has shown that indeed accessibility and proper service provision is important in activity and participation of persons with SCI in Korea.

Associated Is not Induced!

As a community survey of individuals living with spinal cord injury in 22 countries, representing all 6 of the World Health Organization regions, the International Spinal Cord Injury (InSCI) community survey is one of the few surveys that highlights not only basic medical issues, but also the impact of spinal cord injury (SCI) on the everyday lives of people. The InSCI survey is part of a much larger project known as the Learning Health System for SCI Initiative (LHS-SCI). The objective of this article is to highlight some of the ongoing and planned next steps at the national and international levels. The implementation phase of the LHS-SCI initiative, beginning with the publication of primary results and extending until 2023, will use the results of the InSCI survey as evidence for implementation of recommendations for improving the societal response to the needs of individuals with SCI at the national level. To illustrate the variety of implementation activities currently underway, we provide country examples from Australia, Morocco, Malaysia, and Germany to demonstrate the diversity of approaches to the implementation of InSCI data. The implementation phase of the LHS-SCI initiative promises to usher in a new era of SCI research that will be seamlessly linked to ongoing and effective implementation actions, at both international and national levels and across settings from clinical practice, health systems management, and national policy.