Pub Date : 2025-01-01Epub Date: 2023-10-11DOI: 10.1080/10790268.2023.2263235
Natalya Tsoy, Wolf Langewitz, Selina Müri, Seraina Notter, Jürgen Pannek, Marcel W M Post, Lacrimioara-Nicoleta Rednic, Sara Rubinelli, Anke Scheel-Sailer
Context: At present, there is a lack of information concerning patients' perspectives on their quality of life (QoL) after a recently acquired spinal cord injury/disorder (SCI/D).
Objective: To explore patients' perspectives on their QoL during their first inpatient rehabilitation after the onset of SCI/D.
Methods: Qualitative study. Semi-structured face-to-face interviews were conducted with 20 participants aged 18 years or older at least three months after the onset of SCI/D and two weeks before they were discharged from their first rehabilitation. Audio-recorded interviews were transcribed and analyzed according to the thematic content analysis. Interviewees rated their QoL with the SCI QoL data set.
Results: The interviewees judged their satisfaction with life as a whole, their physical and mental health, as relatively high with values between six and eight (with 10 meaning complete satisfaction). They highlighted social aspects, health topics, and the experience of autonomy as relevant to their concept of QoL. The aspects that positively influenced QoL included the level of well-being in the current social and institutional environment, the increased level of energy, strength, and autonomy in daily life, and an improved mental state derived from general positive personal attitudes. In contrast, the social restrictions during the COVID-19 pandemic, physical issues including pain, a lack of progress associated with psychological dissatisfaction, and limitations in personal independence decreased patients' QoL.
Conclusion: Since the interviewees described different aspects from the areas of social, health and autonomy as important for their QoL, exploring and addressing these areas should be used to achieve an individualized first rehabilitation.
{"title":"Quality of life from the patient perspective at the end of the first rehabilitation after the onset of spinal cord injury/disorder - A qualitative interview-based study.","authors":"Natalya Tsoy, Wolf Langewitz, Selina Müri, Seraina Notter, Jürgen Pannek, Marcel W M Post, Lacrimioara-Nicoleta Rednic, Sara Rubinelli, Anke Scheel-Sailer","doi":"10.1080/10790268.2023.2263235","DOIUrl":"10.1080/10790268.2023.2263235","url":null,"abstract":"<p><strong>Context: </strong>At present, there is a lack of information concerning patients' perspectives on their quality of life (QoL) after a recently acquired spinal cord injury/disorder (SCI/D).</p><p><strong>Objective: </strong>To explore patients' perspectives on their QoL during their first inpatient rehabilitation after the onset of SCI/D.</p><p><strong>Methods: </strong>Qualitative study. Semi-structured face-to-face interviews were conducted with 20 participants aged 18 years or older at least three months after the onset of SCI/D and two weeks before they were discharged from their first rehabilitation. Audio-recorded interviews were transcribed and analyzed according to the thematic content analysis. Interviewees rated their QoL with the SCI QoL data set.</p><p><strong>Results: </strong>The interviewees judged their satisfaction with life as a whole, their physical and mental health, as relatively high with values between six and eight (with 10 meaning complete satisfaction). They highlighted social aspects, health topics, and the experience of autonomy as relevant to their concept of QoL. The aspects that positively influenced QoL included the level of well-being in the current social and institutional environment, the increased level of energy, strength, and autonomy in daily life, and an improved mental state derived from general positive personal attitudes. In contrast, the social restrictions during the COVID-19 pandemic, physical issues including pain, a lack of progress associated with psychological dissatisfaction, and limitations in personal independence decreased patients' QoL.</p><p><strong>Conclusion: </strong>Since the interviewees described different aspects from the areas of social, health and autonomy as important for their QoL, exploring and addressing these areas should be used to achieve an individualized first rehabilitation.</p>","PeriodicalId":50044,"journal":{"name":"Journal of Spinal Cord Medicine","volume":" ","pages":"129-140"},"PeriodicalIF":1.8,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11748858/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41218063","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}
Pub Date : 2025-01-01Epub Date: 2023-09-14DOI: 10.1080/10790268.2023.2247625
Tessa Garside, Ralph Stanford, Oliver Flower, Trent Li, Edward Dababneh, Naomi Hammond, Frances Bass, James Middleton, Jonathan Tang, Jonathan Ball, Anthony Delaney
Introduction: Interventions provided in the early phases after spinal cord injury (SCI) may improve neurological recovery and provide for best possible functional outcomes. Knowing this relies on early and clear documentation of the level and grade of the spinal cord injury. Guidelines advocate for early documentation of neurological status within 72 h of injury to allow early prognostication and to help guide initial management. It is unclear whether this is current practice in New South Wales (NSW).
Methods: Patients with acute SCI who were admitted to two SCI referral centers during 2018-2019 in NSW were included. Data relating to documentation of neurological status, timing of imaging, surgery and transfer to spinal cord injury center were collected and summarized using descriptive statistics.
Results: Only 18 percent of patients had an acceptable neurological examination according to the International Standards for Classification of Spinal Cord Injury (ISNCSCI) within 72 h of injury (either not done, or unable to determine the neurological level of injury). At the first neurological examination, the neurological level of injury and grade was unable to be determined in 26.8% of patients and 29.9% of patients respectively. At discharge from acute care and transfer to rehabilitation, the neurological level was undetermined in 28.9% of patients and grade undetermined in 26.8%. ISNCSCI examination was most commonly performed by spinal rehabilitation doctors after patients were discharged from the intensive care unit (ICU).
Conclusions: Documentation of neurological level and grade of SCI within 72 h of injury is not being performed in the large majority of this cohort, which may impede evaluation of neurological improvement in response to acute treatment, and hinder prognostication.
{"title":"Acute assessment of spinal cord injury in New South Wales: A retrospective study of current practice in two spinal cord injury referral centers.","authors":"Tessa Garside, Ralph Stanford, Oliver Flower, Trent Li, Edward Dababneh, Naomi Hammond, Frances Bass, James Middleton, Jonathan Tang, Jonathan Ball, Anthony Delaney","doi":"10.1080/10790268.2023.2247625","DOIUrl":"10.1080/10790268.2023.2247625","url":null,"abstract":"<p><strong>Introduction: </strong>Interventions provided in the early phases after spinal cord injury (SCI) may improve neurological recovery and provide for best possible functional outcomes. Knowing this relies on early and clear documentation of the level and grade of the spinal cord injury. Guidelines advocate for early documentation of neurological status within 72 h of injury to allow early prognostication and to help guide initial management. It is unclear whether this is current practice in New South Wales (NSW).</p><p><strong>Methods: </strong>Patients with acute SCI who were admitted to two SCI referral centers during 2018-2019 in NSW were included. Data relating to documentation of neurological status, timing of imaging, surgery and transfer to spinal cord injury center were collected and summarized using descriptive statistics.</p><p><strong>Results: </strong>Only 18 percent of patients had an acceptable neurological examination according to the International Standards for Classification of Spinal Cord Injury (ISNCSCI) within 72 h of injury (either not done, or unable to determine the neurological level of injury). At the first neurological examination, the neurological level of injury and grade was unable to be determined in 26.8% of patients and 29.9% of patients respectively. At discharge from acute care and transfer to rehabilitation, the neurological level was undetermined in 28.9% of patients and grade undetermined in 26.8%. ISNCSCI examination was most commonly performed by spinal rehabilitation doctors after patients were discharged from the intensive care unit (ICU).</p><p><strong>Conclusions: </strong>Documentation of neurological level and grade of SCI within 72 h of injury is not being performed in the large majority of this cohort, which may impede evaluation of neurological improvement in response to acute treatment, and hinder prognostication.</p>","PeriodicalId":50044,"journal":{"name":"Journal of Spinal Cord Medicine","volume":" ","pages":"46-53"},"PeriodicalIF":1.8,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11760750/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10232573","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}
Pub Date : 2024-12-11DOI: 10.1080/10790268.2024.2420431
Chunxuan Dong, Qibin Sun, Fangjiang Zheng, Jing Ji, Xiumei Xu, Xingzhang Yao, Decheng Gan
Objective: The present study aims to investigate the effect and mechanism of heavy moxibustion (100 moxa-cone) at Sanyin point (the common point of Yin and kidney) on the function of neurogenic bladder (NB) dysfunction in rats with spinal cord injury (SCI).
Methods: Twenty-four male Sprague-Dawley rats were divided into four groups (n = 6): control, NB, NB + Moxibustion, and NB + Moxibustion + YS-49 (PI3 K agonist). The rats in control groups accepted a cut open of the skin, fascia, and muscle. The NB model was established using spinal cord transection. Fourteen days later, animals received heavy moxibustion at Sanyin point for three weeks or/and intraperitoneal administration of YS-49 (a PI3 K agonist). Basso, Beattie, and Bresnahan (BBB) scale, urodynamic parameters, bladder size, and weight were measured. The hematoxylin-eosin staining method was used to observe the histology of the bladder mucosa. Moreover, NB dysfunction after SCI could be restored by autophagy activation and autophagy is mediated by the PI3 K/Akt/mTOR pathway. Therefore, the expressions of autophagy factor (LC3 II/I and p62), PI3 K, and p-mTOR in the bladder mucosa were evaluated by western blotting.
Results: Heavy moxibustion treatment relieved the development of NB dysfunction in rats with SCI, with an increase in the bladder voiding efficiency and a decrease in afferent activity during storage in the moxibustion group compared with the NB group. The expression levels of LC3 II/I were markedly elevated by moxibustion, accompanied by a decrease in the levels of p62. YS-49 addition increased the PI3 K and p-mTOR expression which were down-regulated by moxibustion. Importantly, YS-49 reversed the effects of moxibustion on autophagy and bladder function.
Conclusion: Heavy moxibustion at Sanyin point exerted its effect on healing-impaired NB dysfunction in rats with SCI, possibly activating autophagy through the PI3 K/mTOR pathway.
{"title":"Heavy moxibustion at Sanyin point ameliorates neurogenic bladder dysfunction in spinal cord injury rats through the PI3 K/mTOR pathway.","authors":"Chunxuan Dong, Qibin Sun, Fangjiang Zheng, Jing Ji, Xiumei Xu, Xingzhang Yao, Decheng Gan","doi":"10.1080/10790268.2024.2420431","DOIUrl":"https://doi.org/10.1080/10790268.2024.2420431","url":null,"abstract":"<p><strong>Objective: </strong>The present study aims to investigate the effect and mechanism of heavy moxibustion (100 moxa-cone) at Sanyin point (the common point of Yin and kidney) on the function of neurogenic bladder (NB) dysfunction in rats with spinal cord injury (SCI).</p><p><strong>Methods: </strong>Twenty-four male Sprague-Dawley rats were divided into four groups (n = 6): control, NB, NB + Moxibustion, and NB + Moxibustion + YS-49 (PI3 K agonist). The rats in control groups accepted a cut open of the skin, fascia, and muscle. The NB model was established using spinal cord transection. Fourteen days later, animals received heavy moxibustion at Sanyin point for three weeks or/and intraperitoneal administration of YS-49 (a PI3 K agonist). Basso, Beattie, and Bresnahan (BBB) scale, urodynamic parameters, bladder size, and weight were measured. The hematoxylin-eosin staining method was used to observe the histology of the bladder mucosa. Moreover, NB dysfunction after SCI could be restored by autophagy activation and autophagy is mediated by the PI3 K/Akt/mTOR pathway. Therefore, the expressions of autophagy factor (LC3 II/I and p62), PI3 K, and p-mTOR in the bladder mucosa were evaluated by western blotting.</p><p><strong>Results: </strong>Heavy moxibustion treatment relieved the development of NB dysfunction in rats with SCI, with an increase in the bladder voiding efficiency and a decrease in afferent activity during storage in the moxibustion group compared with the NB group. The expression levels of LC3 II/I were markedly elevated by moxibustion, accompanied by a decrease in the levels of p62. YS-49 addition increased the PI3 K and p-mTOR expression which were down-regulated by moxibustion. Importantly, YS-49 reversed the effects of moxibustion on autophagy and bladder function.</p><p><strong>Conclusion: </strong>Heavy moxibustion at Sanyin point exerted its effect on healing-impaired NB dysfunction in rats with SCI, possibly activating autophagy through the PI3 K/mTOR pathway.</p>","PeriodicalId":50044,"journal":{"name":"Journal of Spinal Cord Medicine","volume":" ","pages":"1-11"},"PeriodicalIF":1.8,"publicationDate":"2024-12-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142808448","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-12-11DOI: 10.1080/10790268.2024.2432734
Ahry Lee, Onyoo Kim
Objective: To identify the prevalence and risk factors for low bone density (LBD) in young adults with spinal cord injury (SCI).Design: Retrospective cross-sectional study.Setting: National Rehabilitation Center in Seoul, Korea.Participants: SCI patients aged 20-49 years hospitalized from January 2010 to October 2021.Interventions: Bone mineral density (BMD) was assessed using dual-energy X-ray absorptiometry of the lumbar spine, femoral neck, and total hip.Outcome Measures: Areal BMD, Z-score and T-score of each region and prevalence of LBD.Results: Osteopenia and osteoporosis were diagnosed in 451 (58.2%) and 156 (20.1%) of 775 patients, respectively. Among 181 patients within 3 months of onset, 105 (58%) and 20 (11%) were diagnosed with osteopenia and osteoporosis, respectively. Additionally, the percentage of LBD increased significantly as the time from injury increased. On multivariate analysis, the risk factors for LBD in patients with early SCI within 12 months of onset were female sex (odds ratio [OR] = 2.49; 95% confidence interval [CI], 1.34-4.46; p = 0.002), body mass index (OR = 0.86; 95% CI, 0.81-0.92; p < 0.001), and age (OR = 1.04; 95% CI, 1.01-1.07; p = 0.005). Alcohol or smoking history, etiology, neurological level, or completeness of injury, and the Korean version of the spinal cord independence measure-III score were not significantly correlated with LBD.Conclusions: The prevalence of osteopenia and osteoporosis is high in young adults with SCI. In addition, the diagnosis rate is high in the test performed at the initial stages after injury. Therefore, early bone health monitoring should be performed in young adults with SCI.
{"title":"Osteoporosis and osteopenia in young adults with spinal cord injury: The necessity of an early bone mineral density checkup.","authors":"Ahry Lee, Onyoo Kim","doi":"10.1080/10790268.2024.2432734","DOIUrl":"https://doi.org/10.1080/10790268.2024.2432734","url":null,"abstract":"<p><p><b>Objective:</b> To identify the prevalence and risk factors for low bone density (LBD) in young adults with spinal cord injury (SCI).<b>Design:</b> Retrospective cross-sectional study.<b>Setting:</b> National Rehabilitation Center in Seoul, Korea.<b>Participants:</b> SCI patients aged 20-49 years hospitalized from January 2010 to October 2021.<b>Interventions:</b> Bone mineral density (BMD) was assessed using dual-energy X-ray absorptiometry of the lumbar spine, femoral neck, and total hip.Outcome Measures: Areal BMD, Z-score and T-score of each region and prevalence of LBD.<b>Results:</b> Osteopenia and osteoporosis were diagnosed in 451 (58.2%) and 156 (20.1%) of 775 patients, respectively. Among 181 patients within 3 months of onset, 105 (58%) and 20 (11%) were diagnosed with osteopenia and osteoporosis, respectively. Additionally, the percentage of LBD increased significantly as the time from injury increased. On multivariate analysis, the risk factors for LBD in patients with early SCI within 12 months of onset were female sex (odds ratio [OR] = 2.49; 95% confidence interval [CI], 1.34-4.46; <i>p</i> = 0.002), body mass index (OR = 0.86; 95% CI, 0.81-0.92; <i>p</i> < 0.001), and age (OR = 1.04; 95% CI, 1.01-1.07; <i>p</i> = 0.005). Alcohol or smoking history, etiology, neurological level, or completeness of injury, and the Korean version of the spinal cord independence measure-III score were not significantly correlated with LBD.<b>Conclusions:</b> The prevalence of osteopenia and osteoporosis is high in young adults with SCI. In addition, the diagnosis rate is high in the test performed at the initial stages after injury. Therefore, early bone health monitoring should be performed in young adults with SCI.</p>","PeriodicalId":50044,"journal":{"name":"Journal of Spinal Cord Medicine","volume":" ","pages":"1-9"},"PeriodicalIF":1.8,"publicationDate":"2024-12-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142808451","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-12-11DOI: 10.1080/10790268.2024.2434304
Marcelo A Gatti, Yamila Dieni, Lucia Yaccuzzi, María E Rivas, Daniela G L Terson de Paleville
Study design: Retrospective data analysis study.
Objectives: To assess gait recovery rates in subjects with motor incomplete spinal cord injury (SCI) at the start of rehabilitation and to report their gait performance.
Setting: Tertiary inpatient Rehabilitation Center in Argentina.
Methods: The study analyzed data from 143 individuals with traumatic and non-traumatic SCI (AIS/ASIA Impairment Scale C and D) within 90 days of injury, all non-ambulatory upon admission. Gait status at discharge was evaluated using the 6-minute walk test and the Walking Index for Spinal Cord Injury II (WISCI II). Statistical evaluations utilized Pearson chi-square and Mann-Whitney U-tests. Approval was obtained from Fleni's Ethics Committee.
Results: Among the 65 patients with AIS C, 69% regained walking function, compared to 87% of the 74 patients with AIS D (p = 0.01). Walkers had a mean total motor score of 67 (±19) versus 51.7 (±25.5) for non-walkers (p = 0.002), and a total pinprick sensation score of 69.8 (± 27.5) vs. 49.5 (± 29) (p = 0.001). Additionally, 54% of AIS C and 86% of AIS D patients aged ≥ 50 regained walking ability; however, age-related differences were statistically significant only in AIS C group (p = 0,015). AIS D patients walked a mean of 249 meters (±134), while AIS C walked 207 meters (±128) (p = 0.07). The median WISCI II score between the two groups were not statistically significant.
Conclusions: Most patients with incomplete motor SCI who participated in inpatient rehabilitation regained walking, with motor score and pinprick sensation correlating to walking ability. Gait performance was comparable between AIS C and D.
{"title":"Gait recovery in patients with late assessment of incomplete spinal cord injury: A retrospective study in Argentina.","authors":"Marcelo A Gatti, Yamila Dieni, Lucia Yaccuzzi, María E Rivas, Daniela G L Terson de Paleville","doi":"10.1080/10790268.2024.2434304","DOIUrl":"https://doi.org/10.1080/10790268.2024.2434304","url":null,"abstract":"<p><strong>Study design: </strong>Retrospective data analysis study.</p><p><strong>Objectives: </strong>To assess gait recovery rates in subjects with motor incomplete spinal cord injury (SCI) at the start of rehabilitation and to report their gait performance.</p><p><strong>Setting: </strong>Tertiary inpatient Rehabilitation Center in Argentina.</p><p><strong>Methods: </strong>The study analyzed data from 143 individuals with traumatic and non-traumatic SCI (AIS/ASIA Impairment Scale C and D) within 90 days of injury, all non-ambulatory upon admission. Gait status at discharge was evaluated using the 6-minute walk test and the Walking Index for Spinal Cord Injury II (WISCI II). Statistical evaluations utilized Pearson chi-square and Mann-Whitney U-tests. Approval was obtained from Fleni's Ethics Committee.</p><p><strong>Results: </strong>Among the 65 patients with AIS C, 69% regained walking function, compared to 87% of the 74 patients with AIS D (<i>p</i> = 0.01). Walkers had a mean total motor score of 67 (±19) versus 51.7 (±25.5) for non-walkers (<i>p</i> = 0.002), and a total pinprick sensation score of 69.8 (± 27.5) vs. 49.5 (± 29) (<i>p</i> = 0.001). Additionally, 54% of AIS C and 86% of AIS D patients aged ≥ 50 regained walking ability; however, age-related differences were statistically significant only in AIS C group (<i>p</i> = 0,015). AIS D patients walked a mean of 249 meters (±134), while AIS C walked 207 meters (±128) (<i>p</i> = 0.07). The median WISCI II score between the two groups were not statistically significant.</p><p><strong>Conclusions: </strong>Most patients with incomplete motor SCI who participated in inpatient rehabilitation regained walking, with motor score and pinprick sensation correlating to walking ability. Gait performance was comparable between AIS C and D.</p>","PeriodicalId":50044,"journal":{"name":"Journal of Spinal Cord Medicine","volume":" ","pages":"1-8"},"PeriodicalIF":1.8,"publicationDate":"2024-12-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142808445","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-12-11DOI: 10.1080/10790268.2024.2434305
Jennifer L Sippel, Rafer Willenberg, Charlesnika T Evans, Zhiping Huo, Gabriel Escudero, Kevin T Stroupe, Adam Eberhart, Stephen P Burns, Belinda Frazier, I Manosha Wickremasinghe, Bridget M Smith
Context: Veterans Health Administration (VHA) maintained a registry of identified and verified cases of US Veterans with spinal cord injuries and disorders (SCI/D) since 1994: VHA SCI/D Registry (VHA SCIDR). Data elements, capture, and storage methods varied over time.
Objective: Describe the consolidation and harmonization of historical VHA SCIDR data spanning three decades during its evolution to an automated platform and report population characteristics.
Methods: The VHA SCIDR captured data using four distinct acquisition methods over 28 years, including cases of Veterans with SCI/D receiving SCI/D System of Care services, via 25 SCI/D Centers and 122 Spoke Sites throughout the VHA healthcare system. Foundational elements of VHA SCIDR data capture methods, harmonization of data elements with the current automated algorithm, access protocol, and governance structure are described.
Results: From Fiscal Years (FYs) 1994 to 2022, VHA SCIDR identified 52,407 Veterans with traumatic or non-traumatic SCI/D, and 96.95% were male, 56.09% White, 16.57% were Black, 1.23% Asian and Pacific Islander, 0.75% Native American, and 25.36% unknown. Traumatic etiology comprised 53.39% of the sample, while 31.75% were non-traumatic, with 14.87% missing etiology classification. Injury category proportions were 5.19% high tetraplegia, 5.83% low tetraplegia, 5.85% high paraplegia, 7.53% low paraplegia, and 23.35% AIS D, with 52.25% missing or unable to be calculated.
Conclusions: VHA SCIDR is one of the three largest SCI/D registries in North America and is the case-identification platform for VHA SCI/D operations, program evaluation, and research studies. VHA SCIDR is connected to each Veteran's VHA healthcare data, facilitating big data research.
{"title":"Evolution of the Veterans Health Administration Spinal Cord Injuries and Disorders (SCI/D) Registry (VHA SCIDR): Characterization from 1994 to 2022.","authors":"Jennifer L Sippel, Rafer Willenberg, Charlesnika T Evans, Zhiping Huo, Gabriel Escudero, Kevin T Stroupe, Adam Eberhart, Stephen P Burns, Belinda Frazier, I Manosha Wickremasinghe, Bridget M Smith","doi":"10.1080/10790268.2024.2434305","DOIUrl":"https://doi.org/10.1080/10790268.2024.2434305","url":null,"abstract":"<p><strong>Context: </strong>Veterans Health Administration (VHA) maintained a registry of identified and verified cases of US Veterans with spinal cord injuries and disorders (SCI/D) since 1994: VHA SCI/D Registry (VHA SCIDR). Data elements, capture, and storage methods varied over time.</p><p><strong>Objective: </strong>Describe the consolidation and harmonization of historical VHA SCIDR data spanning three decades during its evolution to an automated platform and report population characteristics.</p><p><strong>Methods: </strong>The VHA SCIDR captured data using four distinct acquisition methods over 28 years, including cases of Veterans with SCI/D receiving SCI/D System of Care services, via 25 SCI/D Centers and 122 Spoke Sites throughout the VHA healthcare system. Foundational elements of VHA SCIDR data capture methods, harmonization of data elements with the current automated algorithm, access protocol, and governance structure are described.</p><p><strong>Results: </strong>From Fiscal Years (FYs) 1994 to 2022, VHA SCIDR identified 52,407 Veterans with traumatic or non-traumatic SCI/D, and 96.95% were male, 56.09% White, 16.57% were Black, 1.23% Asian and Pacific Islander, 0.75% Native American, and 25.36% unknown. Traumatic etiology comprised 53.39% of the sample, while 31.75% were non-traumatic, with 14.87% missing etiology classification. Injury category proportions were 5.19% high tetraplegia, 5.83% low tetraplegia, 5.85% high paraplegia, 7.53% low paraplegia, and 23.35% AIS D, with 52.25% missing or unable to be calculated.</p><p><strong>Conclusions: </strong>VHA SCIDR is one of the three largest SCI/D registries in North America and is the case-identification platform for VHA SCI/D operations, program evaluation, and research studies. VHA SCIDR is connected to each Veteran's VHA healthcare data, facilitating big data research.</p>","PeriodicalId":50044,"journal":{"name":"Journal of Spinal Cord Medicine","volume":" ","pages":"1-11"},"PeriodicalIF":1.8,"publicationDate":"2024-12-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142814664","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-12-11DOI: 10.1080/10790268.2024.2420141
Nina Younsi, Raimund Stein, Konrad M Szymanski
Introduction: Spina bifida (SB) affects almost all activities in daily life and therefore also health-related quality of life (HRQOL). To assess the HRQOL of adults with SB, a self-reported QUAlity of Life Assessment of Spina bifida in Adults (QUALAS-A) was validated in English. The purpose of this study was to develop and validate a German version of QUALAS-A.
Methods: German-speaking adults > = 18 years were recruited at a tertiary center and through an SB association. Two urologists translated the QUALAS-A into German. Face and content validity were assessed by adults with SB. Back-translation into English was performed. QUALAS-A-G was administered online as part of a larger study of sexuality in SB. Internal consistency was verified using Cronbach's alpha. Factor analysis, convergent validity, and differences between groups based on continence were established.
Results: A total of 45 adults with SB participated (median age of 29 years old). Domain scores demonstrated no floor and minimal ceiling effects. Cronbach's alpha determined good internal consistency (0.58-0.70). The factor analysis converged to a somewhat different three-factor structure compared to the original version, but otherwise had similar properties to the original. Construct validity revealed moderate associations (r = 0.36-0.65) between QUALAS-A-G domains, indicating they measure different aspects of HRQOL. Adults who were continent of both urine and stool reported higher QUALAS-A-G scores than those who were incontinent.
Conclusion: We demonstrated QUALAS-A-G to be reliable and valid in German-speaking adults with SB. The QUALAS-A-G could be a useful tool for communication between adults with SB and medical staff.
{"title":"Adaptation of the German language version of the QUAlity of life assessment of spina bifida for adults (QUALAS-A-G).","authors":"Nina Younsi, Raimund Stein, Konrad M Szymanski","doi":"10.1080/10790268.2024.2420141","DOIUrl":"https://doi.org/10.1080/10790268.2024.2420141","url":null,"abstract":"<p><strong>Introduction: </strong>Spina bifida (SB) affects almost all activities in daily life and therefore also health-related quality of life (HRQOL). To assess the HRQOL of adults with SB, a self-reported QUAlity of Life Assessment of Spina bifida in Adults (QUALAS-A) was validated in English. The purpose of this study was to develop and validate a German version of QUALAS-A.</p><p><strong>Methods: </strong>German-speaking adults > = 18 years were recruited at a tertiary center and through an SB association. Two urologists translated the QUALAS-A into German. Face and content validity were assessed by adults with SB. Back-translation into English was performed. QUALAS-A-G was administered online as part of a larger study of sexuality in SB. Internal consistency was verified using Cronbach's alpha. Factor analysis, convergent validity, and differences between groups based on continence were established.</p><p><strong>Results: </strong>A total of 45 adults with SB participated (median age of 29 years old). Domain scores demonstrated no floor and minimal ceiling effects. Cronbach's alpha determined good internal consistency (0.58-0.70). The factor analysis converged to a somewhat different three-factor structure compared to the original version, but otherwise had similar properties to the original. Construct validity revealed moderate associations (<i>r </i>= 0.36-0.65) between QUALAS-A-G domains, indicating they measure different aspects of HRQOL. Adults who were continent of both urine and stool reported higher QUALAS-A-G scores than those who were incontinent.</p><p><strong>Conclusion: </strong>We demonstrated QUALAS-A-G to be reliable and valid in German-speaking adults with SB. The QUALAS-A-G could be a useful tool for communication between adults with SB and medical staff.</p>","PeriodicalId":50044,"journal":{"name":"Journal of Spinal Cord Medicine","volume":" ","pages":"1-6"},"PeriodicalIF":1.8,"publicationDate":"2024-12-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142808441","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-12-10DOI: 10.1080/10790268.2024.2420142
Luxshmi Nageswaran, Dalton L Wolfe, Laura J Graham, Emma A Bateman
Objectives: To evaluate cardiometabolic disease (CMD) in outpatients with spinal cord injury/disease (SCI/D). The study aims were to (1) estimate the prevalence of CMD risk factors in a cohort of Canadian adults with SCI/D; (2) assess whether the frequency of CMD screening aligns with evidence-based guidelines; and (3) gain a preliminary understanding of the barriers to CMD screening and/or treatment within a rehabilitation program setting.
Design: Quality improvement initiative involving chart review extracting the presence of and frequency of screening for four CMD risk factors (obesity, hypertension, dyslipidemia, diabetes mellitus). Values were compared to evidence-based guidelines for CMD risk identification and management. Root cause analysis and focused interviews were conducted with clinic staff to identify barriers.
Participants: Consecutive outpatients with SCI/D from October 2020 to December 2021 (n = 73).
Results: 43.8% of outpatients sampled had established CMD (≥3 risk factors) and 94.5% had at least one risk factor. Obesity was the most prevalent (82.2%), followed by dyslipidemia (71.7%), hypertension (46.5%), and diabetes mellitus (34.8%). Hypertension and obesity screening were completed at 14.3% and 10.4% of appointments. The frequency of dyslipidemia and diabetes mellitus screening could not be determined. Eighteen barriers to timely CMD screening and treatment intensification were identified.
Conclusions: The prevalence of CMD risk factors in outpatients with SCI/D was high. While approximately two of every five outpatients had established CMD, adherence to screening guidelines was poor. These findings reinforce the need for strategies to improve screening and reduce preventable harm from CMD in this vulnerable population.
{"title":"Taking risk to heart: An evaluation of cardiometabolic risk and screening guideline adherence in outpatients with spinal cord injury.","authors":"Luxshmi Nageswaran, Dalton L Wolfe, Laura J Graham, Emma A Bateman","doi":"10.1080/10790268.2024.2420142","DOIUrl":"10.1080/10790268.2024.2420142","url":null,"abstract":"<p><strong>Objectives: </strong>To evaluate cardiometabolic disease (CMD) in outpatients with spinal cord injury/disease (SCI/D). The study aims were to (1) estimate the prevalence of CMD risk factors in a cohort of Canadian adults with SCI/D; (2) assess whether the frequency of CMD screening aligns with evidence-based guidelines; and (3) gain a preliminary understanding of the barriers to CMD screening and/or treatment within a rehabilitation program setting.</p><p><strong>Design: </strong>Quality improvement initiative involving chart review extracting the presence of and frequency of screening for four CMD risk factors (obesity, hypertension, dyslipidemia, diabetes mellitus). Values were compared to evidence-based guidelines for CMD risk identification and management. Root cause analysis and focused interviews were conducted with clinic staff to identify barriers.</p><p><strong>Setting: </strong>Academic, tertiary rehabilitation hospital.</p><p><strong>Participants: </strong>Consecutive outpatients with SCI/D from October 2020 to December 2021 (<i>n</i> = 73).</p><p><strong>Results: </strong>43.8% of outpatients sampled had established CMD (≥3 risk factors) and 94.5% had at least one risk factor. Obesity was the most prevalent (82.2%), followed by dyslipidemia (71.7%), hypertension (46.5%), and diabetes mellitus (34.8%). Hypertension and obesity screening were completed at 14.3% and 10.4% of appointments. The frequency of dyslipidemia and diabetes mellitus screening could not be determined. Eighteen barriers to timely CMD screening and treatment intensification were identified.</p><p><strong>Conclusions: </strong>The prevalence of CMD risk factors in outpatients with SCI/D was high. While approximately two of every five outpatients had established CMD, adherence to screening guidelines was poor. These findings reinforce the need for strategies to improve screening and reduce preventable harm from CMD in this vulnerable population.</p>","PeriodicalId":50044,"journal":{"name":"Journal of Spinal Cord Medicine","volume":" ","pages":"1-11"},"PeriodicalIF":1.8,"publicationDate":"2024-12-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142803126","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-12-09DOI: 10.1080/10790268.2024.2379067
Boris S G Hellenbrand, Charlotte C M van Laake-Geelen, Henk A M Seelen
Objective: To determine whether ESWT is able to safely and positively influence specific ADL activities in people with SCI and spasticity, measured by Goal Attainment Scaling (GAS).
Study design: Multiple single-case experimental design with a randomized baseline length.
Setting: Rehabilitation centre.
Subjects: This study included 11 participants with SCI, aged >18 years (mean (SD) 63 (12.2) years), mean (SD) duration after injury 9 (8.1) years, with hindering spasticity in the upper or lower limb.
Methods: During the 3-week treatment phase, radial ESWT in the plantar flexors of the calf (n = 6) or in the flexors of the wrist/hand (n = 5) was applied weekly, followed by a 12-week follow-up phase. The primary outcome measure consisted of the Goal Attainment Scaling (GAS), in which three individual goals were set. Secondary outcome measures included range of joint motion, pain (0-10), 10-m walking test and Van-Lieshout-hand-function-test-for-Tetraplegia (short form).
Results: At descriptive level, in total, 28 of the 33 GAS items improved after ESWT and these effects generally were maintained during the follow-up phase. The results of all secondary outcome measures varied. No serious adverse events occurred.
Conclusions: In this study, ESWT resulted in improved performance of specific ADL items in most persons with SCI. More research is needed to confirm these results in a larger cohort.
{"title":"Shockwave therapy in persons with a spinal cord injury and spasticity: A multiple single-case experimental design study.","authors":"Boris S G Hellenbrand, Charlotte C M van Laake-Geelen, Henk A M Seelen","doi":"10.1080/10790268.2024.2379067","DOIUrl":"https://doi.org/10.1080/10790268.2024.2379067","url":null,"abstract":"<p><strong>Objective: </strong>To determine whether ESWT is able to safely and positively influence specific ADL activities in people with SCI and spasticity, measured by Goal Attainment Scaling (GAS).</p><p><strong>Study design: </strong>Multiple single-case experimental design with a randomized baseline length.</p><p><strong>Setting: </strong>Rehabilitation centre.</p><p><strong>Subjects: </strong>This study included 11 participants with SCI, aged >18 years (mean (SD) 63 (12.2) years), mean (SD) duration after injury 9 (8.1) years, with hindering spasticity in the upper or lower limb.</p><p><strong>Methods: </strong>During the 3-week treatment phase, radial ESWT in the plantar flexors of the calf (<i>n</i> = 6) or in the flexors of the wrist/hand (<i>n</i> = 5) was applied weekly, followed by a 12-week follow-up phase. The primary outcome measure consisted of the Goal Attainment Scaling (GAS), in which three individual goals were set. Secondary outcome measures included range of joint motion, pain (0-10), 10-m walking test and Van-Lieshout-hand-function-test-for-Tetraplegia (short form).</p><p><strong>Results: </strong>At descriptive level, in total, 28 of the 33 GAS items improved after ESWT and these effects generally were maintained during the follow-up phase. The results of all secondary outcome measures varied. No serious adverse events occurred.</p><p><strong>Conclusions: </strong>In this study, ESWT resulted in improved performance of specific ADL items in most persons with SCI. More research is needed to confirm these results in a larger cohort.</p>","PeriodicalId":50044,"journal":{"name":"Journal of Spinal Cord Medicine","volume":" ","pages":"1-9"},"PeriodicalIF":1.8,"publicationDate":"2024-12-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142803124","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-12-02DOI: 10.1080/10790268.2024.2414147
Simone Tiberti, Claudio Pilati, Astrid Bonaccorsi, Luigi G Rizzato, Michele Spinelli, Giulio Del Popolo, Gabriele Righi, Valentina Cicioni, Aquilina Colonna, Ilaria Rosso, Giuseppina Frasca, Luisa De Palma, Antonella Andreottola, Lucia Feltroni, Serena V Capobianco, Giorgio Scivoletto
Study design: Observational prospective multicenter study.
Objectives: The aim of this study is to evaluate the efficacy of bowel management and subjects' satisfaction by the Monitoring the Efficacy of Neurogenic Bowel Treatment On Response (MENTOR) tool and the impact of demographic and clinical factors on bowel management.
Methods: Consecutive patients with SCI were recruited by nine Italian Spinal Units. The MENTOR tool is a three-dimensional questionnaire assessing objective bowel score measures, patient's subjective perceptions, and "special attention symptoms"; the combination of these results defines the allocation of each subject into one of three categories reflecting the possible therapeutic recommendations (red for "recommend change", yellow for "further discussion", and green for "monitoring").
Results: We recruited 352 subjects with subacute or chronic SCI. The NBD average score was 11.7 ± 7.2 with 69.9% that expresses "good" or "adequate" satisfaction. 33.1% had one or more "special attention symptoms (SAS)". About the MENTOR tool color: 34.6% of the current treatment was adequate (green), 29.7% needed a revaluation (yellow), and 35% required a change (red). While in "green" patients the subjective perception coincided with the score, 24% of "yellow" patients and 34.4% of "red" patients answered they were well managed. None of the clinical or demographic characteristics was associated with patients' satisfaction or belonging to the three color zones.
Conclusions: Effective bowel management in subjects with SCI did not correlate with patient characteristics or satisfaction. Many patients have inappropriate bowel management despite their satisfaction and the chronicity of the injury. This disparity calls for a periodic assessment with an objective tool such as MENTOR to identify the individual that requires intervention.
{"title":"Evaluation of bowel management efficacy and subjects' satisfaction in people with spinal cord injury (SCI): An Italian multicenter survey via the MENTOR tool.","authors":"Simone Tiberti, Claudio Pilati, Astrid Bonaccorsi, Luigi G Rizzato, Michele Spinelli, Giulio Del Popolo, Gabriele Righi, Valentina Cicioni, Aquilina Colonna, Ilaria Rosso, Giuseppina Frasca, Luisa De Palma, Antonella Andreottola, Lucia Feltroni, Serena V Capobianco, Giorgio Scivoletto","doi":"10.1080/10790268.2024.2414147","DOIUrl":"https://doi.org/10.1080/10790268.2024.2414147","url":null,"abstract":"<p><strong>Study design: </strong>Observational prospective multicenter study.</p><p><strong>Objectives: </strong>The aim of this study is to evaluate the efficacy of bowel management and subjects' satisfaction by the Monitoring the Efficacy of Neurogenic Bowel Treatment On Response (MENTOR) tool and the impact of demographic and clinical factors on bowel management.</p><p><strong>Methods: </strong>Consecutive patients with SCI were recruited by nine Italian Spinal Units. The MENTOR tool is a three-dimensional questionnaire assessing objective bowel score measures, patient's subjective perceptions, and \"special attention symptoms\"; the combination of these results defines the allocation of each subject into one of three categories reflecting the possible therapeutic recommendations (red for \"recommend change\", yellow for \"further discussion\", and green for \"monitoring\").</p><p><strong>Results: </strong>We recruited 352 subjects with subacute or chronic SCI. The NBD average score was 11.7 ± 7.2 with 69.9% that expresses \"good\" or \"adequate\" satisfaction. 33.1% had one or more \"special attention symptoms (SAS)\". About the MENTOR tool color: 34.6% of the current treatment was adequate (green), 29.7% needed a revaluation (yellow), and 35% required a change (red). While in \"green\" patients the subjective perception coincided with the score, 24% of \"yellow\" patients and 34.4% of \"red\" patients answered they were well managed. None of the clinical or demographic characteristics was associated with patients' satisfaction or belonging to the three color zones.</p><p><strong>Conclusions: </strong>Effective bowel management in subjects with SCI did not correlate with patient characteristics or satisfaction. Many patients have inappropriate bowel management despite their satisfaction and the chronicity of the injury. This disparity calls for a periodic assessment with an objective tool such as MENTOR to identify the individual that requires intervention.</p>","PeriodicalId":50044,"journal":{"name":"Journal of Spinal Cord Medicine","volume":" ","pages":"1-10"},"PeriodicalIF":1.8,"publicationDate":"2024-12-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142773740","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}