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A national cross-sectional survey on community spinal cord injury individuals profiles, health-related quality of life and support services in China: implications for healthcare and rehabilitation

Abstract

Background

Spinal cord injury (SCI) results in severe, permanent functional changes and has become a global health priority due to its high incidence, cost, and disability rate. Current national epidemiological data on SCI in China are limited and outdated. This study aimed to provide a comprehensive, national cross-sectional investigation of SCI epidemiology in China.

Methods

This cross-sectional study included 3055 SCI participants aged 8 to 78 years, conducted from May to September 2023. Data collected encompassed demographic characteristics, employment status, etiology, years lived with disability (YLD), family structure, caregiving status, income, health insurance, paralysis type, and health-related quality of life (HRQoL). Descriptive statistics analyses were used to assess demographic and injury characteristics. Group differences were assessed using t-tests, one-way ANOVA and Chi-square tests. Significant factors were examined using multivariate regression analysis.

Results

The majority (88.9%) of respondents were aged 15 to 59 years, with a male-to-female ratio of 2.36:1. Car accidents caused 45.4% of tetraplegia cases, falls caused 35.9% of paraplegia cases, and myelitis was the leading cause of non-traumatic SCI. Among paraplegia participants, 65.5% had complete SCI, while 53.1% of tetraplegia participants had incomplete SCI. Functional improvement was reported by 9.58% of participants. Half (50.3%) of the respondents were unemployed, and 75% had incomes below the national average. HRQoL was significantly lower in the SCI population compared to controls, mainly influenced by injury site, income, age and etiology (p < 0.05).

Conclusions

SCI participants in China exhibit low HRQoL and reemployment rates. Accessible community and vocational rehabilitation programs, alongside robust public medical services, are essential for enhancing reemployment and HRQoL among SCI participants, reducing the overall disease burden.

Peer Review reports

Introduction

Spinal cord injury (SCI) is characterized by structural and/or functional damage to the spinal cord and is categorized into traumatic and non-traumatic SCI, stemming from diverse etiological factors [1]. Traumatic spinal cord injury (TSCI), such as traffic accidents, falls, and sports injuries, is common, while non-traumatic SCI (NTSCI) is primarily attributed to conditions such as myelitis, intraspinal tumors, and vascular malformations. The incidence of TSCI ranges from 3.3 to 195.4 cases per million, with slight and steady increases for both males and females [2,3,4]. Globally, there were 0.9 million incident cases, 20.6 million individuals were living with SCI, 6.2 million years lived with disability (YLD) were diagnosed with total SCI in 2019 [1], and the age-standardized incidence rate and age-standardized YLD rate decreased [5]. In China, 759,302 individuals are estimated to be prevalent with TSCI in total, and 66,374 new TSCI cases are estimated to occur annually [6]. With the incidence of NTSCI increasing continuously from 24.11 per million in 2007 to 39.8 per million in 2020, the proportion of participants with degenerative diseases is the largest among all etiologies [7]. SCI can manifest with motor and sensory deficits, neurogenic bladder [8], and other complications such as chronic pain [9], respiratory issues, autonomic dysreflexia [10], spasticity [11], affecting various bodily functions and quality of life. SCI imposes substantial physical, psychological [12], and socioeconomic burdens on both participants and society, these include healthcare expenses [13, 14], rehabilitation efforts, decreased productivity, and a diminished health-related quality of life (HRQoL) [15]. In conclusion, extensive efforts to improve SCI are crucial for enhancing the overall health and well-being of the population.

Advancements in medical technology have facilitated the timely administration of appropriate early interventions for individuals with SCI. This has led to higher survival rates and increased demand for comprehensive rehabilitation services. As the largest developing country in the world, China has a substantial population of SCI participants. Unlike many developed countries, China lacks a national SCI registration system. Although some studies have shed light on the epidemiological characteristics and trends of SCI in our country, national epidemiological data on SCI in China are available for only a limited number of provinces and are mostly outdated [16,17,18]. Research on SCI in China has been primarily based on hospital data, most of which have focused on TSCI [18,19,20]. It is crucial to understand the overall view of SCI demographic characteristics and living conditions in China, especially for individuals living with long-term disabilities in communities. To our knowledge, there is no existing nationwide population-based registration system for SCI. Moreover, there is a gap between long-term real-life status after discharge and the health care they deserve, which should not be overlooked for chronic diseases such as SCI.

Therefore, the objective of this study is to provide a national cross-sectional investigation of the epidemiological data of individuals with SCI in China. Furthermore, we aim to contribute to a foundation for subsequent disease prevention, management strategy modification, and improvement in HRQoL, with the ultimate goal of reducing the social and financial burdens associated with SCI in China.

Materials and methods

Study design and sample size calculation

This study adopted a national, cross-sectional, multicenter survey focused on community SCI participants. The investigation was carried out by the rehabilitation department at West China Hospital of Sichuan University in collaboration with the China Association of Persons with Physical Disability. The questionnaires were concurrently disseminated to confirmed SCI participants or their caregivers across the 31 provinces, municipalities, and autonomous regions of China. Before the final version of the questionnaire was officially available online, we conducted unified training on the questionnaire completion. If the respondents needed any consultation and help during the completion process, trained personnel could help participants complete the survey accurately.

The sample size for this cross-sectional survey was determined with the primary goal of ensuring representation from different regions of China rather than statistical power for hypothesis testing. Given the diverse nature of SCI prevalence and characteristics across China, our approach aimed to maximize diversity and inclusivity in our participant sample.

Questionnaire formation

At first, the questionnaire was crafted by the initiator (the China Association of Persons with Physical Disability) and the investigator ( the Spinal Cord Injury Team at the Rehabilitation Medicine Center of West China Hospital, Sichuan University). Secondly, feedback from 16 experts in the field of SCI rehabilitation and staff related to disabled persons’ services was incorporated to develop the initial draft [21] Finally, 30 SCI participants were invited as volunteers to complete the trial questionnaire and provide feedback. Their responses were used to revise and finalize the questionnaire content, facilitating the subsequent questionnaire completion.

The questionnaire was tailored to include demographic attributes, the Modified Barthel Index (MBI) [22] and the 36-item Short Form Health Survey(SF-36) [23,24,25]. The survey comprehensively covered demographic attributes such as age, sex, residential area and occupation, alongside factors pertaining to the cause and severity of injury, injury site, YLD, and socioeconomic aspects such as economic status, educational attainment, marital status, and family composition. HRQoL was also included [23, 26].

The demographic variables were derived from the seventh national population census conducted on May 12, 2021 [27], categorizing respondents into four age groups: ≤14 years, 15 to 59 years (considered the workforce population), 60 to 64 years, and 65 years and above. Geographical delineations segmented respondents into western, eastern, central, and northeastern regions of China based on their long-term residency.

Based on findings from the 2021 National Economic Survey of China [28], per capita disposable annual income was stratified into five distinct brackets: low (¥8,601), lower (¥19,303), intermediate (¥30,598), upper (¥47,397), and high income (¥90,116). These income brackets are expressed in Chinese Yuan (¥) throughout the text for consistency and alignment with national survey standards. Educational attainment was classified in accordance with the China’s educational system, wherein participants and their spouses were categorized based on their level of formal education, ranging from illiterate (no formal systematic education) to completion of primary school (nine-year compulsory education, which includes six years of primary school and three years of junior secondary school), senior high school (12 years of formal systematic education includes an additional three years of senior secondary education after the nine-year compulsory education), or attainment of a bachelor’s degree or higher (at least 16 years of formal systematic education including undergraduate education (typically four or five years) and possibly postgraduate education). Marital status was divided into unmarried, married/remarried, and divorced/widowed. Additionally, family structure was assessed by considering the number of children and elderly dependents (aged 65 years and above) requiring support within the household.

This study classified participants with SCI into TSCI and NTSCI categories. The severity of injuries was assessed based on medical records, injury sites, and current functional performance, adapted a simplified, user-friendly description of the International Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI) to enhance readability for participants. The participants were categorized into the following groups: complete and incomplete tetraplegia, complete and incomplete paraplegia, hemiplegia, monoplegia, and isolated neurogenic bladder dysfunction. According to their injury sites, they were classified into the cervical, thoracic, lumbar, sacral, or cauda equina groups.

The participants were also asked to report their health status using the SF-36 (Chinese version) [25], which measures physical and mental function. The SF-36 is a widely used HRQoL questionnaire, collecting information across eight domains: general health (GH), physical functioning (PF), role limitations due to physical health (RP), emotional well-being (RE), social functioning (SF), bodily pain (BP), vitality (VT), and mental health (MH). Scores range from 0 to 100, with higher scores indicating better HRQoL.

Participant population

The inclusion criteria were as follows: (1) medical history of confirmed SCI and confirmation by the local association of persons with physical disability according to their service records system (each SCI individual had a unique disability certificate ID, making it easy to track), meeting the diagnostic standards of SCI according to ISNCSCI [29]; (2) had the ability to complete the questionnaire by themselves or their caregivers who were sufficiently familiar with the participant; (3) had access to smart devices, such as mobile phones or computers; and (4) were willing to participate in the survey. The exclusion criterion was incomplete or mistaken records.

Procedures and data extraction

This cross-sectional study was conducted between May 2023 and September 2023. The trained personnel of the sponsor team from the China Association of Persons with Physical Disability located in 31 provinces, municipalities and autonomous areas distributed the questionnaire to the participants. They provided guidance to ensure that respondents effectively completed the survey using online survey software.

Statistical analysis

All the data were subsequently transferred to excel software, where preliminary steps, including duplicate removal, verification, and initial statistical analysis, were performed by a team of three professionals. Moreover, if the questionnaire content exhibited clear logical inconsistencies or mistakes, a group discussion was conducted to determine the questionnaire’s adoption. Continuous variables are presented with descriptive statistics [mean, standard deviation, median and interquartile range (IQR)]. Categorical variables are presented as frequencies and percentages. Differences in categorical variables between groups were assessed using Chi-square tests, while differences in continuous variables were assessed using t-tests or one-way ANOVA, as appropriate. Multivariate analysis was performed by regression analysis based on potential relative factors. All the statistical analyses were conducted using SPSS 21.0. P < 0.05 was considered to indicate statistical significance.

Results

General sociology-demographic data

A total of 3089 individuals with SCI responded to the survey. After duplication removal and verification, the final dataset included 3055 participants. The median age of the participants was 45.0 years (IQR: 36.0 to 53.0). The male-to-female ratio was 2.36:1. As shown in Tables 1 and 88.9% of the participants were aged 15 to 59 years, 10.4% were older than 60 years, and 0.82% were younger than 15 years. Descriptive statistics were used to summarize demographic and socioeconomic characteristics. Median and IQR were reported for continuous variables like age, and frequencies and percentages for categorical variables such as age groups, educational levels, and geographical distribution. In terms of educational qualifications, the majority of participants had elementary and junior high school education, followed by senior high school and college graduates. Geographically, participants were distributed across Western, Eastern, Central, and Northeast China.

Regarding family composition, economic sources and expenditure, more than half of the participants were married or remarried. Most had spouses with junior or senior high school education. Nearly all participants had at least one elderly family member aged 60 years or older, and nearly 1/3 had at least two children. Single-child families and child-free respondents made up a notable portion of the sample. The majority (75%) of participants had an annual household income below the national mean and median. In terms of insurance coverage, basic medical insurance was the most common (78.4%), followed by occupational injury and commercial insurance, with a minority (11.5%) having no health insurance. Chi-square tests were used to analyze the distribution of categorical variables to assess significant differences among groups. For detailed demographic and socioeconomic data, refer to Table 1.

Employment

As shown in Table 2, half (50.3%) of the SCI participants were unemployed, reflecting a significant increase in the unemployment rate by 38.31% (from 12.0 to 50.3%). The proportion of students among SCI participants decreased from 10.2% before injury to 1.8% after injury. Employment among peasants decreased by 13.5% (from 31.2 to 17.7%), and among civil servants decreased by 12.2% (from 25.9 to 13.6%). In contrast, self-employed and part-time employees experienced relatively minor decreases (from 10.3 to 9.75% and from 10.5 to 6.84%, respectively). To analyze these changes, descriptive statistics were used to summarize the employment status of participants before and after injury. The percentages and changes in employment categories were calculated to highlight shifts in employment patterns. A paired t-test was conducted to compare the proportions of participants in each employment category before and after injury, providing statistical evidence of significant changes in employment status. This test was chosen because it compares means from the same group at two different times, suitable for evaluating the impact of SCI on employment status.

Injury sites, etiology and YLD of SCI

In our survey, the largest subgroup comprised thoracic and lumbar SCI participants, comprising 70.4% of the total cohort. Specifically, 2457 individuals (80.3%) experienced TSCI, while 581 (19.7%) presented with NTSCI. Cervical SCI participants accounted for 15.1% of the cohort, and sacral injury representing 10.2%.

The primary etiology of TSCI varies across various injury sites. Among participants with cervical SCI, traffic accidents were the predominant cause of injury, accounting for 45.4% of the cases. Falls were the leading cause of thoracic (35.9%) and lumbar (31.3%) SCI. Myelitis emerged as the primary cause among NTSCI participants, while congenital spina bifida was identified as the primary cause of sacral cord injuries (Table 3).

The overall SCI population had a median YLD of 14.00 (8, 24) years. Specifically, participants with cervical SCI had a median YLD of 11.00 (6, 20) years, whereas those with sacral SCI exhibited a longer median YLD of 23.5 (10, 43) years. Notably, participants with cervical SCI had a shorter YLD than did those with thoracic SCI and below, as depicted in Table 3.

Statistical methods were employed to analyze these findings. Chi-square tests were used to assess the significance of differences in proportions across injury types (cervical, thoracic, lumbar, sacral) and etiologies (traffic accidents, falls, myelitis, congenital causes). Median YLD were compared using non-parametric tests such as the Kruskal-Wallis test to determine if there were statistically significant differences in YLD between different SCI groups. Post-hoc tests, such as Dunn’s test, were conducted to identify specific pairwise differences when significant overall differences were found. All statistical analyses were performed using a significance level of α = 0.05 to determine statistical significance.

Functional recovery trends, current type of disability and severity of injury

Compared to the baseline functional status, the majority (86.0%) of the surveyed participants showed no significant improvement, while 9.58% experienced notable enhancement, and 4.38% exhibited functional deterioration. Notably, declines were more pronounced among individuals with complete injuries and bladder dysfunction. Among those with current disabled, 75.8% presented with paraplegia, and 12.6% presented with tetraplegia. Atypical SCI manifestations included monoplegia(6.11%) and hemiplegia(3.30%), while isolated bladder dysfunction was seen in 2.45% of cases. Concerning injury severity, 64.7% paraplegic individuals were experienced complete injury. Further detailed insights are available in Table 4.

HRQoL of participants and relative effect factor analysis

Table 5 details the outcomes of a multivariable linear regression analysis, uncovering that a spectrum of factors—encompassing gender, age, income, injury site, and etiology as either traumatic or non-traumatic—significantly shape an individual’s HRQoL. Males exhibit significantly poorer scores in the domain of PF and VT compared to their female counterparts. However, no gender-based disparities were observed in other aspects of HRQoL. Age was negatively correlated, while income was positively correlated with HRQoL. Moreover, lower injury sites were associated with higher HRQoL scores, with statistically significant differences observed among groups (P<0.05). These predictors displayed nearly identical variance inflation factor (VIF) values across all subscales, ranging from 1.002 to 1.006, indicating stable multicollinearity levels among age, income, and injury location across all SF-36 subscales.

TSCI participants scored significantly higher in the dimensions of PF, BP, VT, RE, and MH with t-values of 56.511, 100.735, 70.762, 47.111, and 3.009 respectively (P < 0.001). Conversely, NTSCI responds scored higher in RP, GH, and SF with t-values of -35.302, -21.148, and − 27.977 respectively (P < 0.001). These findings reveal that TSCI and NTSCI individuals exhibit notable differences in various health status dimensions. Additionally, The VIF values for BP, VT, RE, MH, and RP were 7.064, 5.311, 7.790, 8.836, and 19.136 respectively, indicating significant multicollinearity, particularly for RP, which exceeds the commonly recommended threshold. These values suggest strong correlations among the independent variables, potentially compromising the stability of the regression coefficients. This underscores the complexity inherent in different etiological subgroups within SCI, including factors such as socioeconomic status, which contribute to the observed multicollinearity effects.

Table 1 General Sociology-Demographic Data
Table 2 Changes in employment before and after SCI onset
Table 3 Characteristics of SCI participants
Table 4 Functional recovery trends, current type of disability and severity of injury
Table 5 Multivariate linear regression of HRQoL (SF-36) in the SCI population

Discussion

This study provides an updated assessment of the survival status of participants with SCI returning to communities nationwide in China. Among the participants, Most participants were aged 15 to 59 years, and experienced TSCI. Traffic accidents were the predominant cause of cervical SCI, while falls were the leading cause of thoracic and lumbar SCI. Additionally, many participants presented with complete paraplegia and experienced no significant functional improvement. Moreover, following the onset of SCI, half of these participants were unemployed. Although 78.39% of the participants had medical insurance, three quarter of them reported annual household incomes lower than the national mean and median incomes. Notably, 44.3% of the respondents resided in Western China. Regardless of gender, SCI participants experienced a significant reduction in all aspects of quality of life, with notable influences from age, income, and injury location.

A predominant proportion of the SCI population consists of males (70.2%) and individuals aged between 15 and 59 years (88.9%), aligning with findings from previous domestic and international studies [3, 30,31,32,33]. The median age of these participants is 45.0 years, deviating from previous literature reporting below 30 years [3, 33] and an average age of approximately 70 years in a Japanese study [4]. This discrepancy may be due to earlier studies focusing on different cohorts of SCI populations, potentially excluding those who experienced substantial improvements or reflecting variations in the workforce across countries. Prior research has emphasized the pivotal role of stable marital relationships in promoting enhanced physical health, elevated HRQoL, facilitating social integration, and supporting occupational reintegration [34, 35]. The married cohort constituted 51.0% of the participants in this study, underscoring a significant reliance on stable marital relationships within the SCI population. These findings emphasize the pivotal role of family members— especially spouses, elderly relatives, and children, who serve as primary caregivers, providing unpaid support to participants [32, 35, 36]. For a middle-aged participant with a spouse having lower educational attainment, balancing caregiving responsibilities for elderly family members and young children alongside economic constraints poses significant challenges. This population not only experiences economic constraints but also encounters substantial human resource demands. These observations are consistent with prevalent family composition traits in China [37], necessitating active development of affordable economic and personnel care systems.

Economic conditions significantly impact both participants and their families. A substantial 75% of participants reported annual household income below the national mean and median income. The widening income disparity in China has prompted the implementation of various measures aimed at economic protection for families [38, 39]. Over recent decades, commendable efforts have been made in China to improve healthcare access, particularly for those with lower socioeconomic status. Despite these efforts, noticeable gaps remain in care quality and public satisfaction [39, 40]. Healthcare insurance coverage plays a pivotal role in determining the out-of-pocket costs for SCI participants and their families [40]. Notably, medical insurance, held by most participants, provides substantial financial support for individuals with SCI, it seems that a majority of people hold some form of insurance. However, access to essential rehabilitation services, crucial for improving neurological outcomes and fosters independence [19]remains limited [41], with some health insurance programs even excluding coverage for rehabilitation costs. Consequently, the SCI population faces enduring economic burden, underscoring the necessity for increased involvement of public or commercial insurance providers in the comprehensive, long-term care management of chronic conditions.

The results of our study revealed that individuals with complete paraplegia comprised 64.7% of the sample, while those with tetraplegia exhibited a higher incidence of incomplete injurie. Cervical cord injuries represented only 15.1% of the cases, markedly deviating from prior research findings by Miyakoshi et al. at 88.1% [4] and Wang [25]. This discrepancy may be due to the necessity of better hand function for independent completion, as participants with tetraplegia have limited participation due to upper limb dysfunction. Additionally, our study also indicated notably limited functional improvement rate of 9.58%, contrasting with previous research conducted primarily in regional medical centers that focus on early critical SCI participants. Complete cervical SCI was linked to a high mortality rate, with survivors frequently showing incomplete tetraplegia and substantial hand dysfunction. The challenges posed by impaired hand function may have contributed to the lower representation of cervical SCI participants in our survey, which primarily focused on the community SCI population rather than in-hospital settings, aligning with observations from other studies [26,27,28,29]. Regarding etiology, traffic accidents and high falls were the primary causes of TSCI, with falls being more common in thoracic and lumbar SCI cases. In the NTSCI group, myelitis emerged as the leading cause of suprasacral SCI, while spinal bifida was the primary cause of non-traumatic sacral injuries. These findings may provide a reference for future prevention and emergency treatment strategies.

Re-employment is crucial for individuals with SCI, enhancing social integration, physical and mental health, and QoL. Our findings revealed that there are significant challenges for these SCI participants, who urgently need systematic interventions to promote re-employment. Half of the SCI participants remained unemployed post injury, experiencing a sharp decline in employment rates, coupled with a concurrent increase in retirement rates. This shift has a notable impact on participants’ career lifetimes, particularly for peasants, students, civil servants, and workers, presenting substantial barriers to re-entering the workforce. This finding differs from F. Keihanian’s findings, 78.6% of SCI participants returned to work, within approximately 7 months [42]. The main obstacles of returning to work include low education levels, lack of transferable skills, and physical disabilities that hinder meeting employment requirements. Individuals with primary education faced greater hurdles in returning to employment, while those with college or higher education qualifications had more opportunities, consistent with previous studies [43].

The absence of an occupational rehabilitation system is a significant barrier to returning to work [44]. Workforce reintegration for individuals with SCI is influenced by multifaceted factors, including physical health, expectations, employment skills, and environmental considerations, such as the intricacies of the social security system [3]. Current rehabilitation programs for the SCI population predominantly focus on early medical rehabilitation, highlighting the pressing need for enhanced policy support in subsequent phases, This includes vocational skills training, workplace environments optimization, and employment promotion initiatives [4, 18, 19]. Systematic, individualized, person-centered vocational rehabilitation is highly necessary [45].

Our study suggests that, according to recent findings in China [46], the majority of individuals with SCI experience a lower HRQoL compared to the general Chinese population. Scores in the 15–59 age group were lower compared to younger or older individuals, likely due to differing family and social roles, older or younger participants have more reliable caregivers, who are commonly their parents or children. As the primary labor force group, middle-aged individuals with SCI exhibit lower HRQoL. This is attributed to several factors. First, they may require increased self-care or spousal caregiving, and long-term management of such chronic conditions. Second, they are compelled to bear the increased financial burden from healthcare expenditures and reduced employment opportunities and income. Consequently, the findings of this study highlights a strong correlation between economic status and HRQoL scores. The enduring healthcare burden extends beyond the injured individuals to their family members. SCI not only has a profound impact on affected participants but also significantly influences the HRQoL of family caregivers across physical, mental, and social well-being [34]. Furthermore, higher injury sites are associated with decreased HRQoL, worse functional status, and more complications. In comparing SF scores between TSCI and NTSCI groups, our analysis revealed significant differences across several dimensions. TSCI individuals generally scored higher in PF, BP, VT, RE and MH, while scoring lower in RP, GH and SF. These differences highlight the varying impacts of TSCI and NTSCI etiologies on HRQoL. Furthermore, the variance inflation factor (VIF) values indicated significant multicollinearity in certain dimensions, particularly for RP, suggesting strong correlations among independent variables. This complexity is attributed to the diverse etiological subgroups within SCI, the chronic and recurrent nature of NTSCI, and the influence of socioeconomic factors. Our intra-group analysis within both TSCI and NTSCI groups also showed significant differences based on injury mechanisms and disease progression. These findings underscore the intricate interplay of factors contributing to HRQoL outcomes.

This study presents an updated nationwide cross-sectional survey of non-hospitalized individuals with SCIs, successfully recruiting participants from 31 provinces and regions. Despite its strengths, several limitations warrant consideration. First, the utilization of online questionnaires potentially excluded individuals lacking access to intelligent devices or internet services. Second, the study heavily relied on self-evaluation forms completed by either participants or their caregivers. This reliance introduces a potential limitation, as discrepancies in understanding and self-evaluation criteria might affect reflection of the objective situation. Thirdly, given the impracticality for respondents to perform self-evaluations with detailed ISNCSCI standards, we opted for a simplified descriptive assessment of limb activity, injury location, sensory or motor retention around the anus, Although such self-assessment is not conducted in strict accordance with ISNCSCI standards, it is feasible among non-medical professionals.

Conclusions

This survey highlights the significant burden shouldered by families of individuals with SCI and underscores its broader societal implications. It underscores the challenges in post-injury recovery and workforce reintegration, necessitating concerted efforts across diverse sectors. Investment in both medical and occupational rehabilitation is crucial for enhancing daily living activities and improving employment prospects.

Recommendations

Based on the findings, the following recommendations are proposed:

  1. 1.

    Enhanced Accessibility: Incorporate multiple data collection methods in future studies, including paper-based questionnaires and in-person interviews, to ensure the inclusion of individuals without access to digital tools. Additionally, establish a nationwide long-term follow-up database and management mechanism for SCI individuals to systematically track and manage their rehabilitation progress and outcomes.

  2. 2.

    Standardized Evaluation: Develop criteria for standardized evaluation adaptable to regional contexts, ensuring professional yet respondent-friendly assessment tools for consistent data collection.

  3. 3.

    Policy and Support Programs: Advocate for stronger policy support and comprehensive rehabilitation programs integrating medical care, vocational training, and social reintegration.

  4. 4.

    Economic Support: Implement financial assistance programs, including provisions for enhancing commercial insurance coverage alongside the national basic healthcare system, to alleviate economic burdens faced by SCI individuals and their families.

Further Research: Conduct longitudinal studies to track changes in HRQoL and other critical outcomes over time, alongside cross-sectional studies to capture diverse needs of the SCI population across different regions, including international perspectives. These studies are crucial for developing comprehensive strategies to address the varied challenges faced by individuals with SCI.

Looking ahead, it is imperative for both society and the government to contribute to this effort by expanding health educational initiatives focused on SCI prevention, treatment, and comprehensive rehabilitation, including both physical and social functional recovery. Moreover, facilitating accessible employment opportunities and ensuring essential financial assistance are indispensable. Addressing challenges in recovery and returning to employment requires concerted efforts from all sectors of society.

Data availability

The datasets used and/or analyzed during the current study are available from the corresponding author upon reasonable request.

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Acknowledgements

We gratefully acknowledge all the workers from the China Association of Persons with Physical Disability for their work in recruiting the respondents and providing instructions for completing the questionnaire.

Funding

This work was funded by the National Key Research and Development Program of china, (Grant No.2023YFC3603800 and 2023YFC3603801) and the National Natural Science Foundation of China, (Grant No.82172534 and 82372574)and 1.3.5 Project for Disciplines of Excellence, West china Hospital, sichuan University(Grant No. ZYJC21038).

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Authors and Affiliations

Authors

Contributions

PHX: designed the research, supervised the data collection and statistical analysis and visualization, interpreted the obtained results, and drafted and revised the manuscript. DMF: developed the idea of the research, designed the research, supervised the data collection and statistical analysis. ZL: drafted and revised the manuscript, article revision and review. SX and LR: article revision and review. ASL: developed the statistical analysis design. TL: study design and practice survey. WQ: provided advice on the idea of the research and revised the manuscript. All the authors contributed to the article and approved the submitted version.

Corresponding author

Correspondence to Quan Wei.

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Ethics approval and consent to participate

This study received approval from the Ethics Committee of West China Hospital, Sichuan University (Approval number: 2023NO1105). Informed consent was obtained from all participants included in the study. All the methods were carried out in accordance with the relevant guidelines and regulations.

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Not applicable.

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The authors declare no competing interests.

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Pan, H., Ding, M., Zhu, L. et al. A national cross-sectional survey on community spinal cord injury individuals profiles, health-related quality of life and support services in China: implications for healthcare and rehabilitation. BMC Musculoskelet Disord 25, 761 (2024). https://doi.org/10.1186/s12891-024-07877-1

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