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.
link