Journal of Spinal Cord Medicine最新文献

{"title":"RE: Can artificial intelligence \"speak\" spinal cord injury?","authors":"Hinpetch Daungsupawong, Viroj Wiwanitkit","doi":"10.1080/10790268.2025.2605375","DOIUrl":"10.1080/10790268.2025.2605375","url":null,"abstract":"","PeriodicalId":50044,"journal":{"name":"Journal of Spinal Cord Medicine","volume":" ","pages":"624-625"},"PeriodicalIF":1.5,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13123053/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145991882","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Correlation of diaphragmatic ultrasound with pulmonary function testing in patients with chronic cervical spinal cord injury: A single center pilot study.","authors":"Shane N Stone, Sungchul Huh, Jayme O'Connor, Lauren Murphy, Steven Kirshblum","doi":"10.1080/10790268.2025.2534262","DOIUrl":"10.1080/10790268.2025.2534262","url":null,"abstract":"<p><strong>Context/objective: </strong>Pulmonary function tests are the gold standard of evaluating pulmonary function in individuals with a spinal cord injury (SCI). However, there are limitations to its accessibility thereby reducing its clinical utility. Diaphragmatic ultrasound is used to evaluate pulmonary function in non-neurologic individuals but there is limited evidence demonstrating its benefit in individuals with SCI. The objective is to determine if diaphragmatic ultrasound measurements are correlated with forced vital capacity (FVC), peak cough flow (PCF), neurological level of injury (NLI), and/or motor level.</p><p><strong>Design & setting: </strong>A pilot study at a single rehabilitation hospital.</p><p><strong>Participants: </strong>Individuals ≥18yo with traumatic and non-traumatic SCI for ≥6 months with NLI from C1-C6, and ASIA Impairment Scale scores A, B, or C.</p><p><strong>Interventions: </strong>N/A.</p><p><strong>Outcome measures: </strong>Associations between FVC, PCF, and diaphragmatic ultrasound measurements (thickness at total lung capacity, thickness at functional residual capacity, and right diaphragm excursion). Also, associations between diaphragmatic ultrasound measurements with NLI and motor level.</p><p><strong>Results: </strong>Significant associations were detected between the thickening ratio and FVC (<i>r</i> = 0.5384, P = 0.047), diaphragm excursion with FVC (<i>r</i> = 0.5757, P = 0.0395), and diaphragm excursion with PCF (<i>r</i> = 0.8061, P = 0.009). Thickness at functional residual capacity and thickness at total lung capacity were not significantly associated with FVC nor PCF. No significant association was found between NLI or motor level with any of the recorded pulmonary or diaphragmatic measures.</p><p><strong>Conclusion: </strong>Diaphragmatic ultrasound is a promising tool in the evaluation of two parameters of pulmonary function in those with cervical SCI. A larger, longitudinal study to confirm these findings and evaluate for normative values would be beneficial.</p>","PeriodicalId":50044,"journal":{"name":"Journal of Spinal Cord Medicine","volume":" ","pages":"602-610"},"PeriodicalIF":1.5,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13123080/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144755023","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Risk of venous thromboembolism and bleeding complications for early enoxaparin versus heparin after same-day spine surgery for central cord syndrome: A propensity-matched retrospective cohort study.","authors":"Anthony N Baumann, Robert J Trager, Nathan Cuttica, Shahabeddin Yazdanpanah, Davin C Gong, Daniel Schirtzinger, Jacob C Hoffmann","doi":"10.1080/10790268.2025.2524226","DOIUrl":"10.1080/10790268.2025.2524226","url":null,"abstract":"<p><strong>Study design: </strong>Retrospective cohort study.</p><p><strong>Objective: </strong>The primary purpose of this study is to compare the effect of enoxaparin versus heparin on the risk of venous thromboembolism (VTE) after early spine surgery for CCS, hypothesizing no difference in risk.</p><p><strong>Setting: </strong>Multi-site academic centers.</p><p><strong>Methods: </strong>This retrospective propensity-matched cohort study using the TriNetX database included adults (≥18 years) who underwent same-day spine surgery for CCS; divided into cohorts depending on the administration of heparin or enoxaparin within three days after surgery (heparin cohort or enoxaparin cohort, respectively). The primary outcome was the incidence and risk ratio (RR) of VTE with secondary outcomes of the incidence and RR of epidural hematoma (EDH), deep venous thrombosis (DVT), and severe postoperative bleeding (SPOB). Cohorts were matched by multiple confounding variables.</p><p><strong>Results: </strong>There were 1,089 patients (mean age: 59 years; 71% male) in each cohort. Comparing the enoxaparin to heparin cohort through three months after surgery, there was no statistically significant or clinically meaningful difference in risk of VTE (P = 0.607; RR:1.11). There were 52 cases (4.8%) and 47 cases (4.3%) of VTE in the enoxaparin and heparin cohorts, respectively. The median time from surgery to VTE was 14.1 and 12.8 days in the enoxaparin and heparin cohorts, respectively. There was no statistically significant difference in risk of EDH (P = 0.693), DVT (P = 0.677), or SPOB (P = 0.861) between both cohorts.</p><p><strong>Conclusion: </strong>Incidence of VTE through three months after same-day spine surgery for CCS was consistent with the literature, without increased risk of VTE based on the administration of early enoxaparin versus heparin.</p>","PeriodicalId":50044,"journal":{"name":"Journal of Spinal Cord Medicine","volume":" ","pages":"569-578"},"PeriodicalIF":1.5,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13123071/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144610215","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Self-reported shoulder pain assessment in adults with spinal cord injury who use a manual wheelchair: A scoping review.","authors":"Wendy Hurd, Meegan Van Straaten, Saloni Patel, Alison Hansen, Omid Jahanian, Stephen Cain, Ryan Pontiff, Chih-Ying Li, Melissa Morrow","doi":"10.1080/10790268.2025.2483075","DOIUrl":"10.1080/10790268.2025.2483075","url":null,"abstract":"<p><strong>Context: </strong>For individuals living with spinal cord injury (SCI), a deep understanding of their shoulder pain experience is crucial to guide equipment prescription/design, mobility training, exercise, recreation, and pain education. Standardization in pain assessment methods is necessary for cross-study comparisons and meta-analyses. No previous studies describe the spectrum of shoulder pain assessment measures applied to adults with SCI who use MWCs for mobility.</p><p><strong>Objective: </strong>This scoping review aimed to determine the measurement instruments and methods of shoulder pain assessment used in peer-reviewed, published literature in studies focused on individuals with SCI who use MWCs.</p><p><strong>Methods: </strong>A literature search was performed using multiple databases on February 23, 2023. Data extraction elements included study design type, inclusion/exclusion criteria, sample size, and pain measurement instrument. Participant characteristics were also extracted including age, sex, time since SCI, level of SCI, and MWC use.</p><p><strong>Results: </strong>This scoping review identified over 20 instruments used in 133 studies that focused on reported shoulder pain in studies of this population. Thirty percent of the studies performed shoulder pain assessment for more than one purpose (screening, baseline, outcome), and 56% used more than one assessment measurement. The Wheelchair Users Shoulder Pain Index was the most commonly used instrument.</p><p><strong>Conclusion: </strong>An in-depth understanding of pain requires measurement within a biopsychosocial framework and likely involves multiple instruments. Overall, investigators are challenged to select valid, reliable instruments that fulfill the demands of study design and questions of interest. Guiding questions are provided to assist investigators in their choice of pain instruments.</p>","PeriodicalId":50044,"journal":{"name":"Journal of Spinal Cord Medicine","volume":" ","pages":"410-424"},"PeriodicalIF":1.5,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13123076/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144062957","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A comparative study of ChatGPT and DeepSeek in spinal cord injury patient education: Can artificial intelligence \"speak\" spinal cord injury?","authors":"Jia Yi Sandra Lau, Gui Ren Gerald Sng, Ruoxi Cao, Jing Chen","doi":"10.1080/10790268.2025.2554013","DOIUrl":"10.1080/10790268.2025.2554013","url":null,"abstract":"<p><strong>Context: </strong>Large language models (LLMs), such as ChatGPT and DeepSeek, are increasingly used by patients for medical information about their health condition. While several studies have explored ChatGPT's performance in spinal cord injury (SCI)-related queries, no direct comparison between GPT-4o and DeepSeek-V3 has been conducted in this context.</p><p><strong>Methods: </strong>The five most-searched SCI-related topics comprising of forty-eight questions were generated based on top Google Trends search terms. Responses were generated using GPT-4o and DeepSeek-V3, with three outputs per question. A total of two hundred and eighty-eight responses were independently evaluated by three Rehabilitation Physicians using the S.C.O.R.E. framework, which evaluates five domains: Safety, Consensus with Guidelines, Objectivity, Reproducibility, and Explainability on a 5-point Likert scale. Paired t-tests were used to compare model performance.</p><p><strong>Results: </strong>Both models achieved high ratings for Safety and Consensus with Guidelines. DeepSeek-V3 scored slightly but significantly higher in Objectivity (<i>P</i> = 0.014), Reproducibility (<i>P</i> = 0.007), and Explainability (<i>P</i> < 0.001). No significant differences were found in Safety or Consensus with Guidelines. Qualitative review highlighted more consistent and contextually rich answers from DeepSeek-V3.</p><p><strong>Conclusion: </strong>While both GPT-4o and DeepSeek-V3 are generally safe and informative tools for SCI patient education, DeepSeek-V3 demonstrated slightly superior performance in delivering consistent, objective, and well-explained responses. LLMs may serve as useful adjuncts in SCI patient education, but ongoing evaluation and clinician oversight remains essential.</p>","PeriodicalId":50044,"journal":{"name":"Journal of Spinal Cord Medicine","volume":" ","pages":"618-623"},"PeriodicalIF":1.5,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13123067/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145042109","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Effects of virtual reality on psychological distress in individuals with spinal cord injury: A systematic review.","authors":"Anas R Alashram","doi":"10.1080/10790268.2025.2488567","DOIUrl":"10.1080/10790268.2025.2488567","url":null,"abstract":"<p><strong>Context: </strong>Psychological distress is common among individuals with spinal cord injury (SCI). Virtual reality (VR) is an innovative technology used in treating patients with neurological disorders.</p><p><strong>Objectives: </strong>This systematic review aims to explore the effects of VR on psychological distress in individuals with SCI.</p><p><strong>Methods: </strong>A comprehensive search was conducted in \"PubMed, PEDro, REHABDATA, MEDLINE, SCOPUS, EMBASE, CINAHL, and Web of Science\" databases from inception to November 1, 2024. Studies included individuals with SCI with various levels or completeness of injury, administrated VR intervention independently or in combination with other treatments, compared with passive, active, or no control interventions, and evaluated psychological distress were included. The \"Physiotherapy Evidence Database (PEDro)\" scale was used to assess the risk of bias in eligible studies.</p><p><strong>Results: </strong>Eight out of 405 studies were included in this systematic review. A total of 159 individuals with SCI (male 67%, mean age 49.6 years) were included in this systematic review. The results were synthesized using a a descriptive analysis. The included studies showed that administrating multiple sessions of VR independently or in combination with cognitive training or conventional physiotherapy reduces depression, anxiety, and stress in individuals with SCI.</p><p><strong>Conclusions: </strong>VR has potential immediate benefits on psychological distress in individuals with SCI. SCI individuals with various severity, level, and duration of injury might benefit from the intervention. However, these findings should be interpreted with caution. Further studies are strongly recommended to understand the long-term effects of VR, determine the most effective treatment protocol, and identify which SCI populations are more likely to benefit from the intervention.</p>","PeriodicalId":50044,"journal":{"name":"Journal of Spinal Cord Medicine","volume":" ","pages":"486-495"},"PeriodicalIF":1.5,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13123089/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144013579","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Communicating messages of care and positivity to peers with SCI/D improves loneliness in volunteer letter writers.","authors":"Sherri L LaVela, Kelsey Berryman, Marissa Wirth, Keith Aguina, Brian Bartle, R Lorie Jacob, Charles H Bombardier, Robert W Motl","doi":"10.1080/10790268.2025.2524223","DOIUrl":"10.1080/10790268.2025.2524223","url":null,"abstract":"<p><strong>Context: </strong>Peer-based volunteering is a potential strategy to alleviate loneliness.</p><p><strong>Objective: </strong>To evaluate the impact of participating as a volunteer letter writer on pre/post-program loneliness outcomes and to examine experiences with participation.</p><p><strong>Methods: </strong>Volunteers with spinal cord injury/dysfunction (SCI/D) participated in a 6-month program writing letters to peers. Mixed methods were used to evaluate volunteers' experiences with the letter writing program. Pre/post loneliness outcomes were examined using a paired t-test. Post-program evaluation included satisfaction, benefit, and negative impact ratings. Qualitative interviews were coded inductively and analyzed using qualitative content analysis.</p><p><strong>Results: </strong>Volunteer peer letter writers (<i>n</i> = 28) were male (82%), had paraplegia (57%) and incomplete injuries (50%). On average they were 55 years of age and injured for 18 years. Volunteer peer letter writers with SCI/D had a statistically significant reduction in loneliness from pre- to post-program (3-item UCLA score 4.0 to 3.7, P = .04). The majority found the program beneficial (72%), with no/neutral negative impacts (93%), and were satisfied (82%). Volunteer peers with SCI/D: (1) liked and felt good about helping others with SCI/D; (2) believed the program provided an opportunity for self-reflection, including awareness and appreciation of their own circumstances and social connections; (3) liked sharing their injury experiences with and being connected to the letter recipient, and (4) found value in the writing process itself.</p><p><strong>Conclusions: </strong>Loneliness was reduced in peer letter writers from pre- to post-program. Volunteers had beneficial and satisfactory experiences. Work to develop and test interventions peer-based volunteering intervention to address loneliness and other psychosocial outcomes is needed.</p>","PeriodicalId":50044,"journal":{"name":"Journal of Spinal Cord Medicine","volume":" ","pages":"520-528"},"PeriodicalIF":1.5,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13123078/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144610213","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A qualitative study uncovering rehabilitation challenges: Perspectives of individuals with spinal cord injury.","authors":"Muna Bhattarai, Sadiksha Karki, Anjita Khadka, Mandira Baniya, Raju Dhakal","doi":"10.1080/10790268.2025.2526252","DOIUrl":"10.1080/10790268.2025.2526252","url":null,"abstract":"<p><strong>Context: </strong>Rehabilitation is an essential set of interventions to optimize functioning and minimize disability in individuals with spinal cord injuries (IwSCI). However, accessing rehabilitation services presents unique challenges for these individuals, particularly in low- and middle-income countries.</p><p><strong>Objectives: </strong>This study aims to explore the perspectives of IwSCI regarding the challenges they face in accessing effective spinal cord injury (SCI) rehabilitation services in Nepal.</p><p><strong>Methods: </strong>In this qualitative study, 16 participants with SCI were recruited from community settings and a rehabilitation center in Nepal. In-depth interviews were conducted either face-to-face or via cell phone between August and September 2023. The participants' responses were analyzed using a reflexive thematic analysis approach.</p><p><strong>Results: </strong>Qualitative analysis identified five overarching themes concerning the challenges experienced by IwSCI in accessing rehabilitation services in Nepal. Participants highlighted that personal challenges related to finances, education, and health, along with socio-cultural influences and caregiving, shortcomings in healthcare and support systems, limited services and resources within rehabilitation centers, and geographical and infrastructural barriers to accessibility hindered their ability to access or continue rehabilitation services.</p><p><strong>Conclusions: </strong>While rehabilitation is essential for managing secondary conditions improving functionality, and maximizing independence, IwSCI in Nepal experience significant challenges in receiving effective rehabilitation services. Collective efforts from families, communities, rehabilitation centers, and the government are vital to reducing these challenges and enhancing the effectiveness of SCI rehabilitation services in Nepal.</p>","PeriodicalId":50044,"journal":{"name":"Journal of Spinal Cord Medicine","volume":" ","pages":"579-589"},"PeriodicalIF":1.5,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13123088/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144602142","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Immersive virtual reality for neuropathic pain management in spinal cord injury: A randomized controlled trial.","authors":"J Samson Selvaraj, Henry Prakash, Thomas Anand Augustine, S Samuel Kamalesh Kumar, Senthil Velkumar, J Augustin Amalraj","doi":"10.1080/10790268.2025.2514321","DOIUrl":"10.1080/10790268.2025.2514321","url":null,"abstract":"<p><strong>Objectives: </strong></p><p><strong>Primary: </strong>To evaluate the efficacy of immersive virtual reality (VR) in reducing neuropathic pain (NP) in individuals with spinal cord injury (SCI).</p><p><strong>Secondary: </strong>To assess the impact of immersive VR on depersonalization symptoms in the SCI population.</p><p><strong>Design: </strong>Double-blind, randomized controlled trial.</p><p><strong>Setting: </strong>Rehabilitation unit of a tertiary care teaching hospital in South India.</p><p><strong>Participants: </strong>Fifty-two individuals with SCI (ASIA A, B, and C) who had a LANSS (Leeds Assessment of Neuropathic Symptoms and Signs) score ≥12 and were on stable pharmacological treatment. Participants were randomized using computer-generated block randomization.</p><p><strong>Interventions: </strong>The intervention group received immersive VR exposure via a head-mounted display, involving virtual tasks such as wheelchair propulsion, cycling, and walking, for 15 min per session, twice daily, five days a week, over two weeks. The control group viewed 2D animated films of equivalent duration using the same device.</p><p><strong>Outcome measures: </strong>Visual Analog Scale (VAS) for neuropathic pain and Cambridge Depersonalization Scale (CDS) for depersonalization.</p><p><strong>Results: </strong>Forty-three participants completed the trial (intervention: <i>n</i> = 23; control: <i>n</i> = 20). The intervention group demonstrated a significant reduction in VAS scores from 59.35 to 37.61 (a 36.63% reduction), while the control group showed a reduction from 59.00 to 48.00 (an 18.64% reduction). The between-group difference in VAS score change was statistically significant. CDS scores also improved significantly in the intervention group compared to the control group.</p><p><strong>Conclusion: </strong>Immersive VR is a promising nonpharmacological, non-invasive intervention for managing neuropathic pain in individuals with SCI. It is associated with improved embodiment and reduced depersonalization symptoms, offering a potential pathway to enhance quality of life. Its portability, minimal adverse effects, and ease of customization make it a viable adjunct to conventional rehabilitation strategies.</p>","PeriodicalId":50044,"journal":{"name":"Journal of Spinal Cord Medicine","volume":" ","pages":"543-555"},"PeriodicalIF":1.5,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13123074/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144610214","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The effects of spinal dysraphism on the quality of life of pediatric patients and their families.","authors":"Remi M Rufus-Toye, Sabba Hussain, Yael Gelfer, Donato Giuseppe Leo, Anna Bridgens","doi":"10.1080/10790268.2025.2510721","DOIUrl":"10.1080/10790268.2025.2510721","url":null,"abstract":"<p><strong>Introduction: </strong>Spinal dysraphism describes a spectrum of conditions resulting from aberrant neural tube closure during the first trimester of fetal development. Consequent neurological deficits may lead to a range of musculoskeletal abnormalities requiring orthopedic intervention. This study sought to evaluate the impact of spinal dysraphism on patients and their families.</p><p><strong>Methods: </strong>Free text questionnaires/interviews were collected from parents. Quantitative questionnaires were collected from children using an emoji response system. These assessed contentment in activities of daily living. Qualitative data were analyzed via thematic analysis. Descriptive statistics were applied to quantitative data.</p><p><strong>Results: </strong>In total 32 responses (13 patients and 19 carers) were collected and analyzed. The median age of patients was 10 years (IQR = 3), with a sex distribution of 7 boys and 6 girls. Overall, 3 key themes were identified: (i) Independence, (ii) Mental Health, (iii) Family Impact, each with corresponding subthemes. Quantitative data corroborated these themes well, highlighting impacts on activities of daily living in the majority of domains assessed.</p><p><strong>Conclusion: </strong>Spinal dysraphism has a multifactorial impact on patient and family quality of life spanning the societal, mental, and physical domains. These findings will be included in ongoing work to create a set of core outcomes for use in the clinical and research settings.</p>","PeriodicalId":50044,"journal":{"name":"Journal of Spinal Cord Medicine","volume":" ","pages":"536-542"},"PeriodicalIF":1.5,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13123046/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144250583","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}