Topics in Spinal Cord Injury Rehabilitation最新文献

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Quantifying Personal Social Networks in Individuals With Traumatic Spinal Cord Injury: A Pilot Study. 量化外伤性脊髓损伤个体的个人社会网络:一项初步研究。
IF 1.2
Topics in Spinal Cord Injury Rehabilitation Pub Date : 2026-01-01 Epub Date: 2026-04-21 DOI: 10.46292/sci25-00130
Chloe Slocum, Sahnaz Pirooz, John Corbett, Ross Zafonte, Susan Robinson-Whelan, Lynne Worobey, Michelle Meade, Zachary Rothfeld-Wehrwein, Amar Dhand
{"title":"Quantifying Personal Social Networks in Individuals With Traumatic Spinal Cord Injury: A Pilot Study.","authors":"Chloe Slocum, Sahnaz Pirooz, John Corbett, Ross Zafonte, Susan Robinson-Whelan, Lynne Worobey, Michelle Meade, Zachary Rothfeld-Wehrwein, Amar Dhand","doi":"10.46292/sci25-00130","DOIUrl":"https://doi.org/10.46292/sci25-00130","url":null,"abstract":"<p><strong>Background: </strong>Individuals who sustain a traumatic spinal cord injury (TSCI) experience life-changing alterations in physiological and psychosocial function. Social connectivity has been shown to influence human health through direct biological and indirect psychosocial mechanisms in the general population. Robust personal social networks have been associated with improved health outcomes and quality of life.</p><p><strong>Objectives: </strong>This study aimed to describe personal social networks quantitatively in a national sample of individuals with TSCI and to explore measures of social connectivity in the context of community transportation resources and loneliness.</p><p><strong>Methods: </strong>We recruited 28 adults with newly sustained TSCI from the inpatient rehabilitation setting at 4 SCI Model Systems sites and adapted the Personal Social Network Survey (PERSNET), a quantitative personal social network assessment tool, to this population. We also collected relevant demographic and clinical information and measured loneliness.</p><p><strong>Results: </strong>Study participant networks reveal a broad range of social structures. Demographic and clinical characteristics reflected aggregate national data on TSCI. Living in geographic areas with greater access to transportation resources was not positively associated with social network size or density or lower loneliness at the time of injury.</p><p><strong>Conclusion: </strong>This is the first study to map personal social networks quantitatively in individuals with TSCI and to examine personal social network size and density in the context of community transportation resources and loneliness. While our study proves that it is feasible to collect personal social network data in the TSCI population, further research must examine the mechanisms by which personal social networks and environmental factors influence health and well-being after SCI.</p>","PeriodicalId":46769,"journal":{"name":"Topics in Spinal Cord Injury Rehabilitation","volume":"32 Suppl 1","pages":"35-43"},"PeriodicalIF":1.2,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13102069/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147785455","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Neuropathic Pain Severity Is Associated With Opioid Use in Adults With Traumatic Spinal Cord Injury: A Spinal Cord Injury Model System Study. 创伤性脊髓损伤成人神经性疼痛严重程度与阿片类药物使用相关:脊髓损伤模型系统研究
IF 1.2
Topics in Spinal Cord Injury Rehabilitation Pub Date : 2026-01-01 Epub Date: 2026-04-21 DOI: 10.46292/sci25-00129
Leslie R Morse, Thomas N Bryce, Argyrios Stampas, Lisa Haubert, Susan Charlifue, Kevin Dalal, Ricardo A Battaglino, Nguyen Nguyen, Richard Goldstein, Elizabeth R Felix
{"title":"Neuropathic Pain Severity Is Associated With Opioid Use in Adults With Traumatic Spinal Cord Injury: A Spinal Cord Injury Model System Study.","authors":"Leslie R Morse, Thomas N Bryce, Argyrios Stampas, Lisa Haubert, Susan Charlifue, Kevin Dalal, Ricardo A Battaglino, Nguyen Nguyen, Richard Goldstein, Elizabeth R Felix","doi":"10.46292/sci25-00129","DOIUrl":"https://doi.org/10.46292/sci25-00129","url":null,"abstract":"<p><strong>Objectives: </strong>To identify biopsychosocial factors associated with opioid use for neuropathic pain in adults with SCI.</p><p><strong>Methods: </strong>We studied 283 adults with SCI who were enrolled in a collaborative project at 1 of 6 participating SCI Model System centers. Using International Spinal Cord Injury Pain Basic and Extended Data Sets, participants were asked about pain, current and prior pain medication use in the past year, and nonpharmacological pain treatment use in the past year, for up to 3 pain conditions. The relationship between active opioid use and neuropathic pain severity, adjusting for relevant clinical and demographic characteristics, was examined using logistic regression using odds ratios (OR) and 95% confidence intervals (CI).</p><p><strong>Results: </strong>There were 104 opioid users and 179 nonusers. In multivariable regression models, employment was associated with a 33% reduction in opioid use compared to unemployment. Opioid users were more likely to use anti-epileptics, a combination of cannabis and anti-epileptics, or a combination of anti-epileptics and nonsteroidal anti-inflammatory drugs than nonusers. Individuals with paraplegia were almost twice as likely to use opioids compared to those with tetraplegia. After adjusting for these factors, the odds of using opioids increased 10% with every 1-point increase in reported worst neuropathic pain severity (0-10 numeric rating scale). This model has good ability to discriminate between opioid users and nonusers based on the area under the curve (AUC) of 0.74.</p><p><strong>Conclusions: </strong>We have developed a biopsychosocial base model of opioid use in adults with chronic pain after SCI with good predictive performance cross-sectionally and identified key potential risk factors for opioid use.</p>","PeriodicalId":46769,"journal":{"name":"Topics in Spinal Cord Injury Rehabilitation","volume":"32 Suppl 1","pages":"118-126"},"PeriodicalIF":1.2,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13102057/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147785492","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Beyond One Size Fits All: Identifying Distinct Resilience Profiles in Spinal Cord Injury. 超越一种尺寸适合所有:识别脊髓损伤的不同弹性特征。
IF 1.2
Topics in Spinal Cord Injury Rehabilitation Pub Date : 2026-01-01 Epub Date: 2026-04-21 DOI: 10.46292/sci25-00108
Angela Hanks Philippus, Mary D Sammel, Allan V Prochazka, Kimberley R Monden
{"title":"Beyond One Size Fits All: Identifying Distinct Resilience Profiles in Spinal Cord Injury.","authors":"Angela Hanks Philippus, Mary D Sammel, Allan V Prochazka, Kimberley R Monden","doi":"10.46292/sci25-00108","DOIUrl":"https://doi.org/10.46292/sci25-00108","url":null,"abstract":"<p><strong>Background: </strong>Resilience plays a critical role in adaptation following spinal cord injury (SCI), yet there is no consensus on how resilience is defined or measured. Current unidimensional approaches may miss important patterns in resilience responses that could inform targeted interventions.</p><p><strong>Objectives: </strong>To identify distinct subgroups of individuals with SCI based on resilience patterns using latent class analysis (LCA) and examine their associations with demographic, injury-related, and psychosocial factors.</p><p><strong>Methods: </strong>We conducted a cross-sectional analysis of 10,634 adults with SCI from the National SCI Model System Database who completed the Spinal Cord Injury-Quality of Life Resilience short form (SCI-QOL-R-SF) between 2016 and 2021. LCA identified response patterns across the 8 SCI-QOL-R-SF items. Polytomous logistic regression examined factors related to class membership. Linear regression assessed relationships between resilience classes and life satisfaction and depression symptoms.</p><p><strong>Results: </strong>A 3-class solution provided optimal fit: high resilience (40.5%), medium resilience (38.4%), and low resilience (21.1%). Classes demonstrated a clear gradient pattern of responses from \"always\" to \"sometimes\" on the SCI-QOL items. Significant predictors of class membership included sex, age, employment status, self-care behaviors, health status, time since injury, and social support. Resilience class was the strongest predictor of both life satisfaction (accounting for 14% of variance) and depression symptoms (12.2% of variance), with large effect sizes between classes.</p><p><strong>Conclusion: </strong>Distinct resilience patterns exist among individuals with SCI and strongly predict psychosocial outcomes. These findings support tailored interventions targeting specific resilience profiles to improve life satisfaction and reduce depression in this population.</p>","PeriodicalId":46769,"journal":{"name":"Topics in Spinal Cord Injury Rehabilitation","volume":"32 Suppl 1","pages":"137-148"},"PeriodicalIF":1.2,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13102065/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147785438","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Bladder and Bowel Dysfunction, Cognitive Appraisals of Disability, and Life Satisfaction in Individuals With Pediatric-Onset Spinal Cord Injury. 儿科脊髓损伤患者的膀胱和肠功能障碍、残疾认知评估和生活满意度。
IF 1.2
Topics in Spinal Cord Injury Rehabilitation Pub Date : 2026-01-01 Epub Date: 2026-02-20 DOI: 10.46292/sci25-00068
Olivia E Clark, Kyle Deane, Lawrence C Vogel, Kathy Zebracki
{"title":"Bladder and Bowel Dysfunction, Cognitive Appraisals of Disability, and Life Satisfaction in Individuals With Pediatric-Onset Spinal Cord Injury.","authors":"Olivia E Clark, Kyle Deane, Lawrence C Vogel, Kathy Zebracki","doi":"10.46292/sci25-00068","DOIUrl":"https://doi.org/10.46292/sci25-00068","url":null,"abstract":"<p><strong>Background: </strong>Individuals with pediatric-onset spinal cord injury (SCI) represent a distinct group; management can be more complex than in adult-onset SCI. Changing medical needs, transfer of responsibility, and cognitive appraisals of disability may all impact life satisfaction in pediatric-onset SCI. Further, bladder/bowel management over many years may be time-consuming and socially disruptive. Cognitive appraisal of disability has been linked to life satisfaction and functioning in pediatric-onset SCI.</p><p><strong>Objectives: </strong>This study examines associations between bladder/bowel accidents, bowel management, cognitive appraisals, and life satisfaction in pediatric-onset SCI.</p><p><strong>Methods: </strong>Part of a larger study, 180 adults who sustained SCI age ≤18 and received treatment at a pediatric rehabilitation hospital system were interviewed. Participants were 55.6% male, 83.3% White, 38.6 years at interview, and 13.1 years at injury; 66.1% had complete injury, and 51.1% had paraplegia. Participants reported demographics/medical needs via semi-structured interview. Cognitive appraisals and life satisfaction were assessed using Appraisals of DisAbility Primary and Secondary Scale-Short Form and Satisfaction with Life Scale. Pairwise correlations with all constructs of interest and multivariable linear regressions using bowel program duration and cognitive appraisals as predictors of life satisfaction were conducted.</p><p><strong>Results: </strong>Correlations align with literature suggesting associations between bladder accident frequency/bowel program duration and negative appraisals of disability (<i>r</i> = .17-.22, <i>P</i> < .05) and bowel program duration and reduced life satisfaction (<i>r</i> = -.29, <i>P</i> < .01). Increased bowel program duration is associated with reduced growth and resilience appraisals (<i>r</i> = .32, <i>P</i> < .001). Regressions indicate that increased bowel program duration and negative appraisals (fearful despondency, overwhelming disbelief, negative perceptions) are associated with reduced life satisfaction (<i>R</i> <sup>2</sup> = .12-.24).</p><p><strong>Conclusion: </strong>Findings suggest interventions targeting bowel management efficiency and cognitive appraisals may improve life satisfaction in this population.</p>","PeriodicalId":46769,"journal":{"name":"Topics in Spinal Cord Injury Rehabilitation","volume":"32 1","pages":"136-144"},"PeriodicalIF":1.2,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12926792/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147285438","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Longitudinal Impact of Time and Negative Health Events on Physical Independence and Social Participation After Spinal Cord Injury. 时间和负面健康事件对脊髓损伤后身体独立性和社会参与的纵向影响。
IF 1.2
Topics in Spinal Cord Injury Rehabilitation Pub Date : 2026-01-01 Epub Date: 2026-04-21 DOI: 10.46292/sci25-00128
Philip S Requejo, Susan Robinson-Whelen, Lisa Lighthall Haubert, Lynn A Worobey, Kim D Anderson, Kimberley R Monden, Michelle Meade, James S Krause
{"title":"Longitudinal Impact of Time and Negative Health Events on Physical Independence and Social Participation After Spinal Cord Injury.","authors":"Philip S Requejo, Susan Robinson-Whelen, Lisa Lighthall Haubert, Lynn A Worobey, Kim D Anderson, Kimberley R Monden, Michelle Meade, James S Krause","doi":"10.46292/sci25-00128","DOIUrl":"https://doi.org/10.46292/sci25-00128","url":null,"abstract":"<p><strong>Background: </strong>Many individuals aging with spinal cord injury (SCI) experience health complications that threaten independence and participation. However, little is known about how negative health events (NHEs) and time since injury shape long-term functional and psychosocial outcomes for individuals with SCI.</p><p><strong>Methods: </strong>Participants were from a national longitudinal dataset of over 13,000 participants from the SCI Model Systems. Participants had 2 or more follow-up assessments of functional and psychosocial outcomes (CHART-SF and SWLS) and NHEs (composite of pain interference, rehospitalization, perceived health decline, and poor self-rated health). Multilevel modeling assessed the effects of time since injury, NHEs, and their interactions on functional and psychosocial outcomes. Latent profile analysis (LPA) was used to identify functional and psychosocial profiles under differing NHE burden.</p><p><strong>Results: </strong>Greater NHE burden predicted significant declines across all CHART-SF domains and SWLS (<i>P</i> < .001), whereas time since injury showed small or nonsignificant effects once NHEs were accounted for. Although NHEs adversely affected all groups, baseline functioning and the magnitude of decline varied by demographic and injury characteristics. LPA identified a 4-class solution, including a subgroup (11%) showing high functioning and life satisfaction despite elevated NHE burden, reflecting adaptive stability.</p><p><strong>Conclusion: </strong>NHEs-not aging alone -are key drivers of decline. However, a meaningful subgroup demonstrates adaptive stability despite significant health adversity, which is characteristic of resilience. Understanding and facilitating mechanisms that foster such adaptive capacity (e.g., psychosocial coping, support, behavioral adaptations) may inform individualized approaches for successful aging with SCI.</p>","PeriodicalId":46769,"journal":{"name":"Topics in Spinal Cord Injury Rehabilitation","volume":"32 Suppl 1","pages":"24-34"},"PeriodicalIF":1.2,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13102060/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147785416","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Content Analysis of ICF-Based Data in the Multidisciplinary Health Records of People With Spinal Cord Injury. 脊髓损伤患者多学科健康记录中基于icf的数据内容分析
IF 1.2
Topics in Spinal Cord Injury Rehabilitation Pub Date : 2026-01-01 Epub Date: 2026-02-20 DOI: 10.46292/sci25-00018
Linda Nieminen, Jaana Leivo, Tiina Luukkaala, Markku Kankaanpää
{"title":"Content Analysis of ICF-Based Data in the Multidisciplinary Health Records of People With Spinal Cord Injury.","authors":"Linda Nieminen, Jaana Leivo, Tiina Luukkaala, Markku Kankaanpää","doi":"10.46292/sci25-00018","DOIUrl":"https://doi.org/10.46292/sci25-00018","url":null,"abstract":"<p><strong>Background: </strong>The International Classification of Functioning, Disability and Health (ICF) was developed by the World Health Organization as a standard language to describe biopsychosocial aspects of functioning, health, and health-related states. Different health professionals document functioning data from their professional perspective.</p><p><strong>Objectives: </strong>The primary objective of this study was to utilize multidisciplinary electronic health records to identify the factors considered significant by different healthcare professional groups in documenting the functioning, disability, and health of individuals with spinal cord injury (SCI).</p><p><strong>Methods: </strong>A random sample of 10 patients was selected from a larger cohort (<i>n</i> = 49) for analysis. Free text from electronic health records regarding subacute inpatient rehabilitation and an outpatient visit at the chronic stage was collected. Two researchers annotated the data to ICF codes. The study was a descriptive, longitudinal study using quantitative content analysis. Contextual analysis was used to compare the data between different health professionals and at different time points.</p><p><strong>Results: </strong>In the 10-patient random sample, 447 health records were retrieved. The functioning data consisted of all ICF domains, with 9349 findings. Environmental factors were documented the most. Health professional groups had different patterns in the frequency of documented ICF categories in their documents, reflecting professionals' expertise in the multidisciplinary team. For example, occupational therapists highlighted activities and participation whereas psychologists emphasized body functions.</p><p><strong>Conclusion: </strong>The findings of this study may facilitate the development of rehabilitation for persons with SCI and highlight the importance of multidisciplinary rehabilitation in complex medical conditions.</p>","PeriodicalId":46769,"journal":{"name":"Topics in Spinal Cord Injury Rehabilitation","volume":"32 1","pages":"96-109"},"PeriodicalIF":1.2,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12926798/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147285445","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Potentially Preventable Hospitalizations Among Adults With Traumatic Spinal Cord Injury: Assessment of Prevention Quality Indicators. 创伤性脊髓损伤成人的潜在可预防住院:预防质量指标的评估。
IF 1.2
Topics in Spinal Cord Injury Rehabilitation Pub Date : 2026-01-01 Epub Date: 2026-02-20 DOI: 10.46292/sci25-00041
Nicole D DiPiro, David Murday
{"title":"Potentially Preventable Hospitalizations Among Adults With Traumatic Spinal Cord Injury: Assessment of Prevention Quality Indicators.","authors":"Nicole D DiPiro, David Murday","doi":"10.46292/sci25-00041","DOIUrl":"https://doi.org/10.46292/sci25-00041","url":null,"abstract":"<p><strong>Objectives: </strong>To assess rates of potentially preventable hospitalizations (PPHs) among adults with spinal cord injury (SCI) living in South Carolina using prevention quality indicators (PQIs).</p><p><strong>Methods: </strong>We assessed hospitalizations in nonfederal state hospitals between 2016 and 2018 for 2531 adults (>18 years old) with chronic (>1 year) traumatic SCI who were identified through a statewide population-based registry. PPHs were identified using the computer code, definitions, and framework for PQIs developed by the Agency for Healthcare Quality and Research (AHRQ). The rates of PPH, as measured by the 14 PQIs, were calculated for those living with SCI in South Carolina and were compared to state and national rates.</p><p><strong>Results: </strong>The rates of PPH for those with SCI were significantly higher than the state rates for 3 conditions (chronic obstructive pulmonary disease/asthma, pneumonia, urinary tract infection) and 3 composite indicators. The state population rates were significantly higher than the national rates for all but one indicator. Among those with SCI, the PQI overall composite rate was 3303 per 100,000, compared to a state rate of 1503 and a national rate of 1301.</p><p><strong>Conclusions: </strong>Compared to the general population, adults with chronic SCI experience more hospitalizations that could have been prevented with high-quality and routine ambulatory care. There is a need to better monitor and treat these ambulatory care sensitive conditions, to advance our understanding of the access to and receipt of quality healthcare, and to develop and implement targeted services to promote health and prevent hospitalizations.</p>","PeriodicalId":46769,"journal":{"name":"Topics in Spinal Cord Injury Rehabilitation","volume":"32 1","pages":"72-82"},"PeriodicalIF":1.2,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12926801/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147285490","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Empowering Independence in Spina Bifida: A Scoping Review of Interventions. 增强脊柱裂的独立性:干预措施的范围审查。
IF 1.2
Topics in Spinal Cord Injury Rehabilitation Pub Date : 2026-01-01 Epub Date: 2026-02-20 DOI: 10.46292/sci25-00046
Camille S Wilson, Lauren E Bradstreet, Natasha N Ludwig, Alison Gehred, Catherine Stephan, T Andrew Zabel, Christine Koterba
{"title":"Empowering Independence in Spina Bifida: A Scoping Review of Interventions.","authors":"Camille S Wilson, Lauren E Bradstreet, Natasha N Ludwig, Alison Gehred, Catherine Stephan, T Andrew Zabel, Christine Koterba","doi":"10.46292/sci25-00046","DOIUrl":"https://doi.org/10.46292/sci25-00046","url":null,"abstract":"<p><strong>Objectives: </strong>To examine intervention studies focused on developing independence readiness skills in individuals with spina bifida.</p><p><strong>Methods: </strong>The scoping review used Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) guidelines to identify intervention studies published from 2000 to 2024. Articles were included if they were an intervention study focused on preidentified domains of independence based on the Guidelines for the Care of People with Spina Bifida by the Spina Bifida Association. Title and abstract screening and full-text articles were completed by author dyads. Data extraction was completed in duplicate to ensure accuracy by separate raters. Inconsistencies were resolved through group consensus and item review.</p><p><strong>Results: </strong>From 2542 unique references, 2028 were removed for not meeting inclusion criteria. Following full-text review, 38 studies were included in the final analysis. Only 5 studies utilized a rigorous randomized control trial study design. Intervention gaps targeting supported decision-making models and sexual health were noted. Interventions generally targeted school-age youth to older adults, with no studies focused on interventions for early childhood populations. Outcomes measurement varied widely across studies; future research will benefit from standardization of tools used to measure outcomes of interest.</p><p><strong>Conclusion: </strong>Intervention studies focused on increasing independence skills for individuals with spina bifida are limited. For this growing area of research, comprehensive representation of understudied and underrepresented individuals within the spina bifida community, consideration of shared data elements across studies, and alignment of targeted domains of independence with stakeholder input must be central to future research efforts.</p>","PeriodicalId":46769,"journal":{"name":"Topics in Spinal Cord Injury Rehabilitation","volume":"32 1","pages":"110-135"},"PeriodicalIF":1.2,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12926803/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147285507","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
From Invisibility to Equity: Redefining Spinal Cord Injury Rehabilitation Through the Lens of Women's Unique Needs. 从隐形到公平:通过女性独特需求的镜头重新定义脊髓损伤康复。
IF 1.2
Topics in Spinal Cord Injury Rehabilitation Pub Date : 2026-01-01 Epub Date: 2026-04-21 DOI: 10.46292/sci25-00133
Heather B Taylor, Susan Robinson-Whelen, Kimberly D Anderson, Kimberly R Monden, Jennifer Coker, Chloe Slocum, Linda Norah-Davis, Lisa Wenzel
{"title":"From Invisibility to Equity: Redefining Spinal Cord Injury Rehabilitation Through the Lens of Women's Unique Needs.","authors":"Heather B Taylor, Susan Robinson-Whelen, Kimberly D Anderson, Kimberly R Monden, Jennifer Coker, Chloe Slocum, Linda Norah-Davis, Lisa Wenzel","doi":"10.46292/sci25-00133","DOIUrl":"https://doi.org/10.46292/sci25-00133","url":null,"abstract":"<p><p>Women with spinal cord injury (SCI) experience persistent disparities in rehabilitation and healthcare access, particularly in reproductive health, sexual wellness, safety, and autonomy. Existing care models remain predominantly gender neutral and fail to address the full continuum of women's health needs. In response to these challenges, we propose a multifaceted rehabilitation framework that integrates an interdisciplinary approach to address the comprehensive needs of women living with SCI. Through the collaborative efforts of the SCI Model Systems (SCIMS) Women's Health Special Interest Group (a multidisciplinary working group composed of clinicians and researchers) and in consultation with women with SCI, key recommendations were synthesized into the W-CARE Framework (Women-Centered Accessible Rehabilitation & Equity) comprising 7 pillars: (1) system redesign, (2) equity and safety benchmarking, (3) lifespan-based centers of excellence, (4) peer co-leadership, (5) inclusive data and intersectionality, (6) telehealth and digital access, and (7) provider training. The Women's SCI Equity & Safety Index is provided as a proposed quality improvement guideline. To achieve equitable SCI care, rehabilitation systems must integrate gender- and disability-informed approaches that support women's health and autonomy across the lifespan. This article serves as both a call to action and a proposed framework for system-level transformation of SCI rehabilitation services.</p>","PeriodicalId":46769,"journal":{"name":"Topics in Spinal Cord Injury Rehabilitation","volume":"32 Suppl 1","pages":"95-102"},"PeriodicalIF":1.2,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13102068/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147785355","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Best Practice Expert Opinion and Guidelines for Assessing Blood Pressure Stability in Clinical Trials and Foundational Research After Spinal Cord Injury. 评估脊髓损伤后临床试验和基础研究中血压稳定性的最佳实践专家意见和指南。
IF 1.2
Topics in Spinal Cord Injury Rehabilitation Pub Date : 2026-01-01 Epub Date: 2026-02-20 DOI: 10.46292/sci25-00021
Aaron A Phillips, Sungchul Huh, Stephan McKenna, Michelle Trbovich, Ellen Merete Hagen, Chloe Slocum, Jill Wecht
{"title":"Best Practice Expert Opinion and Guidelines for Assessing Blood Pressure Stability in Clinical Trials and Foundational Research After Spinal Cord Injury.","authors":"Aaron A Phillips, Sungchul Huh, Stephan McKenna, Michelle Trbovich, Ellen Merete Hagen, Chloe Slocum, Jill Wecht","doi":"10.46292/sci25-00021","DOIUrl":"https://doi.org/10.46292/sci25-00021","url":null,"abstract":"<p><p>Spinal cord injury (SCI) and the associated autonomic dysfunction often lead to unique and severe blood pressure instability, including low resting blood pressure, orthostatic <i>hypo</i>tension, postprandial hypotension, and transient episodic <i>hyper</i>tension. Despite the high prevalence of these complications and the associated negative clinical outcomes, standardized protocols for measuring blood pressure stability in SCI clinical trials and research remain lacking. This guidelines article outlines best practices for measuring blood pressure stability in the SCI population. The guidelines were developed through a comprehensive literature review in combination with expert consensus to describe the techniques and necessary considerations when assessing blood pressure stability in individuals with SCI. We include detailed and rationalized protocols for assessing resting blood pressure, orthostatic hypotension, postprandial hypotension, and autonomic dysreflexia in individuals with SCI. An emphasis is placed on using validated and standardized tools, meticulous preparation, and practical and safe measurement techniques as well as careful consideration and mitigation of the myriad of confounding factors unique to the SCI population. We also advocate for integrating at-home monitoring and mobile health technologies to provide continuous, real-world data on blood pressure stability. Implementing best practice guidelines will enhance the accuracy and reliability of blood pressure assessments in SCI clinical settings and research, thereby facilitating the detection of cardiovascular dysfunction and ultimately improving patient outcomes. This comprehensive framework aims to advance our scientific understanding and clinical management of cardiovascular autonomic dysfunction after SCI, ultimately contributing to better health and quality of life for this population.</p>","PeriodicalId":46769,"journal":{"name":"Topics in Spinal Cord Injury Rehabilitation","volume":"32 1","pages":"51-71"},"PeriodicalIF":1.2,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12926793/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147285430","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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