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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. 脊髓损伤/障碍发作后第一次康复结束时患者的生活质量——一项基于定性访谈的研究。
IF 1.8 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2025-01-01 Epub Date: 2023-10-11 DOI: 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.

背景:目前缺乏关于患者在最近获得性脊髓损伤/障碍(SCI/D)后对生活质量(QoL)的看法的信息。目的:探讨患者在SCI/D发作后首次住院康复期间对生活质量的看法。方法:定性研究。对20名年龄在18岁或以上的参与者进行了半结构化的面对面访谈,这些参与者在SCI/D发作后至少三个月,在他们第一次康复出院前两周。根据主题内容分析,对录音访谈进行转录和分析。受访者使用SCI生活质量数据集对他们的生活质量进行评分。结果:受访者认为他们对整个生活、身心健康的满意度相对较高,数值在6到8之间(10表示完全满意)。他们强调了与他们的生活质量概念相关的社会方面、健康话题和自主体验。对生活质量产生积极影响的方面包括当前社会和制度环境中的幸福感水平,日常生活中能量、力量和自主性水平的提高,以及普遍积极的个人态度带来的精神状态的改善。相比之下,新冠肺炎大流行期间的社会限制、包括疼痛在内的身体问题、与心理不满相关的缺乏进展以及个人独立性的限制降低了患者的生活质量,探索和解决这些领域应用于实现个性化的首次康复。
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引用次数: 0
Acute assessment of spinal cord injury in New South Wales: A retrospective study of current practice in two spinal cord injury referral centers. 新南威尔士州脊髓损伤的急性评估:对两家脊髓损伤转诊中心当前做法的回顾性研究。
IF 1.8 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2025-01-01 Epub Date: 2023-09-14 DOI: 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.

导言:在脊髓损伤(SCI)后的早期阶段采取干预措施可改善神经功能的恢复,并尽可能实现最佳的功能效果。要做到这一点,必须及早明确记录脊髓损伤的程度和等级。指南提倡在损伤后 72 小时内及早记录神经系统状态,以便及早做出预后并帮助指导初始治疗。目前还不清楚新南威尔士州(NSW)是否采取了这种做法:方法:纳入2018-2019年期间在新南威尔士州两家SCI转诊中心住院的急性SCI患者。收集了与神经状态记录、影像学检查时机、手术和转入脊髓损伤中心相关的数据,并使用描述性统计进行了总结:只有18%的患者在受伤后72小时内根据脊髓损伤分类国际标准(ISNCSCI)进行了可接受的神经系统检查(要么未进行检查,要么无法确定神经系统损伤程度)。在首次神经系统检查中,分别有 26.8% 和 29.9% 的患者无法确定神经系统损伤程度和等级。从急症监护室出院并转入康复中心时,28.9%的患者神经损伤程度未定,26.8%的患者等级未定。ISNCSCI检查最常在患者从重症监护室(ICU)出院后由脊柱康复医生进行:结论:大多数患者没有在受伤后72小时内记录SCI的神经功能水平和等级,这可能会妨碍对急性治疗后神经功能改善情况的评估,并妨碍预后判断。
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引用次数: 0
Heavy moxibustion at Sanyin point ameliorates neurogenic bladder dysfunction in spinal cord injury rats through the PI3 K/mTOR pathway. 重度艾灸三阴穴通过pi3k /mTOR通路改善脊髓损伤大鼠神经源性膀胱功能障碍。
IF 1.8 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2024-12-11 DOI: 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.

目的:探讨三阴穴(阴肾共点)重度艾灸(100艾)对脊髓损伤大鼠神经源性膀胱功能障碍的影响及机制。方法:雄性Sprague-Dawley大鼠24只,随机分为对照组、NB组、NB +艾灸组、NB +艾灸+ YS-49 (pi3k激动剂)组4组(n = 6)。对照组的大鼠接受皮肤、筋膜和肌肉的切开。采用脊髓横断法建立NB模型。14天后,在三阴穴重度灸3周或/并腹腔注射YS-49(一种pi3k激动剂)。测量Basso, Beattie, and Bresnahan (BBB)量表、尿动力学参数、膀胱大小和体重。采用苏木精-伊红染色法观察膀胱黏膜组织学变化。此外,脊髓损伤后NB功能障碍可通过自噬激活恢复,自噬是由pi3k /Akt/mTOR通路介导的。因此,采用western blotting检测膀胱黏膜自噬因子(LC3 II/I和p62)、pi3k和p-mTOR的表达。结果:重度艾灸可缓解脊髓损伤大鼠NB功能障碍的发展,与NB组相比,艾灸组膀胱排尿效率提高,储存时传入神经活动降低。艾灸组LC3 II/I表达水平明显升高,p62表达水平降低。YS-49的添加增加了pi3k和p-mTOR的表达,而艾灸则下调了pi3k和p-mTOR的表达。重要的是,YS-49逆转了艾灸对自噬和膀胱功能的影响。结论:重度艾灸三阴穴对脊髓损伤大鼠愈合性NB功能障碍的影响可能通过pi3k /mTOR通路激活自噬。
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引用次数: 0
Osteoporosis and osteopenia in young adults with spinal cord injury: The necessity of an early bone mineral density checkup. 脊髓损伤的年轻成人骨质疏松和骨质减少:早期骨密度检查的必要性。
IF 1.8 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2024-12-11 DOI: 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.

目的:探讨青年脊髓损伤(SCI)患者低骨密度(LBD)的患病率及危险因素。设计:回顾性横断面研究。地点:韩国首尔国立康复中心。参与者:2010年1月至2021年10月住院的20-49岁SCI患者。干预措施:采用双能x线骨密度仪评估腰椎、股骨颈和全髋关节的骨密度。结果测量:区域骨密度、z -评分、t -评分及LBD患病率。结果:775例患者中有451例(58.2%)出现骨质减少,156例(20.1%)出现骨质疏松。在发病3个月内的181例患者中,分别有105例(58%)和20例(11%)被诊断为骨质减少和骨质疏松。此外,LBD的百分比随着受伤时间的增加而显著增加。多因素分析显示,女性是早期SCI患者发病12个月内发生LBD的危险因素(优势比[OR] = 2.49;95%置信区间[CI], 1.34-4.46;p = 0.002),体重指数(OR = 0.86;95% ci, 0.81-0.92;p = 0.005)。酒精或吸烟史、病因、神经学水平、损伤的完整性以及韩国版脊髓独立性测量- iii评分与LBD无显著相关。结论:青壮年脊髓损伤患者骨质疏松和骨质减少的发生率较高。此外,在损伤后的初始阶段进行的测试诊断率很高。因此,青年脊髓损伤患者应进行早期骨健康监测。
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引用次数: 0
Gait recovery in patients with late assessment of incomplete spinal cord injury: A retrospective study in Argentina. 不完全脊髓损伤晚期评估患者的步态恢复:阿根廷的一项回顾性研究。
IF 1.8 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2024-12-11 DOI: 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.

研究设计:回顾性数据分析研究。目的:评估运动不完全性脊髓损伤(SCI)患者在康复开始时的步态恢复率,并报告其步态表现。地点:阿根廷三级住院康复中心。方法:研究分析了143例创伤性和非创伤性脊髓损伤患者(AIS/ASIA损伤量表C和D)在受伤后90天内的数据,所有患者入院时均不能走动。出院时的步态状况采用6分钟步行测试和脊髓损伤步行指数II (WISCI II)进行评估。统计评估采用Pearson卡方检验和Mann-Whitney u检验。获得了Fleni伦理委员会的批准。结果:65例AIS C患者中,69%的患者恢复了行走功能,而74例AIS D患者中87%的患者恢复了行走功能(p = 0.01)。学步者的平均总运动评分为67(±19)分,非学步者为51.7(±25.5)分(p = 0.002);针刺感觉总分为69.8(±27.5)分,非学步者为49.5(±29)分(p = 0.001)。此外,54%的≥50岁的AIS C和86%的AIS D患者恢复了行走能力;然而,年龄相关差异仅在AIS C组有统计学意义(p = 0.015)。AIS D患者平均步行249米(±134米),AIS C患者平均步行207米(±128米)(p = 0.07)。两组间WISCIⅱ评分中位数差异无统计学意义。结论:大多数参加住院康复的不完全性运动性脊髓损伤患者均能恢复行走,运动评分和针刺感觉与行走能力相关。步态表现在AIS C和D之间具有可比性。
{"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}
引用次数: 0
Evolution of the Veterans Health Administration Spinal Cord Injuries and Disorders (SCI/D) Registry (VHA SCIDR): Characterization from 1994 to 2022. 退伍军人健康管理局脊髓损伤和疾病(SCI/D)登记处(VHA SCIDR)的演变:1994年至2022年的特征
IF 1.8 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2024-12-11 DOI: 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.

背景:自1994年以来,退伍军人健康管理局(VHA)对美国退伍军人脊髓损伤和疾病(SCI/D)的确诊和验证病例进行了登记:VHA SCI/D登记处(VHA SCIDR)。数据元素、捕获和存储方法随时间而变化。目的:描述三十年来VHA SCIDR历史数据在向自动化平台发展过程中的整合和协调,并报告人口特征。方法:VHA SCIDR通过25个SCI/D中心和122个VHA医疗保健系统的Spoke站点,使用四种不同的获取方法收集了28年来的数据,包括接受SCI/D护理系统服务的SCI/D退伍军人病例。描述了VHA SCIDR数据捕获方法的基本元素、数据元素与当前自动算法、访问协议和治理结构的协调。结果:1994 - 2022财年,VHA SCIDR共鉴定出52407例创伤性或非创伤性脊髓损伤/D退伍军人,其中男性占96.95%,白人占56.09%,黑人占16.57%,亚裔和太平洋岛民占1.23%,美洲原住民占0.75%,未知人群占25.36%。外伤性病因占53.39%,非外伤性病因占31.75%,病因分类缺失14.87%。损伤类别比例为高四肢瘫5.19%、低四肢瘫5.83%、高截瘫5.85%、低截瘫7.53%、AIS D 23.35%,其中52.25%缺失或无法计算。结论:VHA SCIDR是北美三大SCI/D注册中心之一,是VHA SCI/D操作、项目评估和研究的案例识别平台。VHA SCIDR连接到每个退伍军人的VHA医疗保健数据,促进大数据研究。
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引用次数: 0
Adaptation of the German language version of the QUAlity of life assessment of spina bifida for adults (QUALAS-A-G). 德语版成人脊柱裂生活质量评估(QUALAS-A-G)的改编。
IF 1.8 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2024-12-11 DOI: 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.

简介:脊柱裂(SB)几乎影响日常生活中的所有活动,因此也影响健康相关生活质量(HRQOL)。为了评估成人脊柱裂患者的HRQOL,采用了成人脊柱裂患者生活质量评估(QUALAS-A)。本研究的目的是开发和验证德语版的QUALAS-A。方法:在某高等教育中心通过SB协会招募讲德语的18岁成人。两名泌尿科医生将QUALAS-A翻译成德语。面孔效度和内容效度由患有SB的成人进行评估。QUALAS-A-G作为一项大型SB性研究的一部分在线使用。内部一致性使用Cronbach's alpha进行验证。建立因子分析、收敛效度和基于禁尿的组间差异。结果:共45例成人SB患者参与,中位年龄29岁。领域得分显示没有下限和最小上限效应。Cronbach’s alpha决定了良好的内部一致性(0.58-0.70)。与原始版本相比,因子分析收敛到一个稍微不同的三因素结构,但在其他方面具有与原始版本相似的属性。结构效度显示QUALAS-A-G域之间存在适度关联(r = 0.36-0.65),表明它们测量HRQOL的不同方面。小便失禁的成年人报告的QUALAS-A-G评分高于尿失禁的成年人。结论:我们证明了QUALAS-A-G在德语成人SB患者中是可靠和有效的,可以作为SB患者与医务人员沟通的有用工具。
{"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}
引用次数: 0
Taking risk to heart: An evaluation of cardiometabolic risk and screening guideline adherence in outpatients with spinal cord injury. 心脏风险:脊髓损伤门诊患者心脏代谢风险和筛查指南依从性的评估。
IF 1.8 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2024-12-10 DOI: 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.

Setting: Academic, tertiary rehabilitation hospital.

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.

目的:评价脊髓损伤/疾病(SCI/D)门诊患者的心脏代谢疾病(CMD)。该研究的目的是(1)估计加拿大SCI/D成人队列中CMD危险因素的患病率;(2)评估CMD筛查频率是否符合循证指南;(3)初步了解在康复计划中筛查和/或治疗CMD的障碍。设计:质量改进倡议,包括图表回顾,提取四种CMD危险因素(肥胖、高血压、血脂异常、糖尿病)的筛查情况和频率。将数值与CMD风险识别和管理的循证指南进行比较。对临床工作人员进行了根本原因分析和重点访谈,以确定障碍。单位:学术三级康复医院。参与者:2020年10月至2021年12月连续门诊SCI/D患者(n = 73)。结果:43.8%的门诊患者存在CMD(≥3个危险因素),94.5%的门诊患者存在至少1个危险因素。肥胖是最常见的(82.2%),其次是血脂异常(71.7%)、高血压(46.5%)和糖尿病(34.8%)。高血压和肥胖筛查的完成率分别为14.3%和10.4%。血脂异常和糖尿病筛查的频率无法确定。发现了18个阻碍及时筛查和加强治疗的障碍。结论:门诊SCI/D患者CMD危险因素患病率较高。虽然大约五分之二的门诊患者已经建立了CMD,但对筛查指南的依从性很差。这些发现加强了制定战略的必要性,以便在这一弱势人群中改进筛查并减少可预防的CMD伤害。
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引用次数: 0
Shockwave therapy in persons with a spinal cord injury and spasticity: A multiple single-case experimental design study. 脊髓损伤和痉挛患者的冲击波治疗:一项多例单例实验设计研究。
IF 1.8 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2024-12-09 DOI: 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.

目的:通过目标实现量表(GAS)来确定ESWT是否能够安全且积极地影响脊髓损伤和痉挛患者的特定ADL活动。研究设计:多例单例实验设计,随机基线长度。地点:康复中心。研究对象:本研究纳入11例脊髓损伤患者,年龄bb0 - 18岁(平均(SD) 63(12.2)岁),损伤后平均(SD)持续时间9(8.1)年,上肢或下肢痉挛性。方法:在为期3周的治疗阶段,每周应用小腿足底屈肌(n = 6)或腕/手屈肌(n = 5)的径向ESWT,随后进行12周的随访。主要结果测量包括目标实现量表(GAS),其中设定了三个单独的目标。次要结果测量包括关节活动范围、疼痛(0-10)、10米步行测试和四肢瘫痪的van - lieshout -hand功能测试(简称)。结果:在描述性水平上,33个GAS项目中有28个在ESWT后得到改善,并且这些效果在随访阶段一般保持不变。所有次要结果测量的结果各不相同。未发生严重不良事件。结论:在本研究中,ESWT改善了大多数脊髓损伤患者特定ADL项目的表现。需要更多的研究在更大的人群中证实这些结果。
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引用次数: 0
Evaluation of bowel management efficacy and subjects' satisfaction in people with spinal cord injury (SCI): An Italian multicenter survey via the MENTOR tool. 评估脊髓损伤(SCI)患者的肠道管理效果和受试者满意度:意大利通过MENTOR工具进行的一项多中心调查。
IF 1.8 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2024-12-02 DOI: 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.

研究设计:观察性前瞻性多中心研究。目的:本研究的目的是通过监测神经源性肠治疗疗效(MENTOR)工具评估肠道管理的疗效和受试者的满意度,以及人口统计学和临床因素对肠道管理的影响。方法:意大利9个脊柱单位招募连续的脊髓损伤患者。MENTOR工具是一种三维问卷,评估客观肠道评分测量、患者主观感知和“特别注意症状”;这些结果的组合将每个受试者划分为三个类别之一,反映了可能的治疗建议(红色代表“建议改变”,黄色代表“进一步讨论”,绿色代表“监测”)。结果:我们招募了352名亚急性或慢性脊髓损伤患者。NBD的平均得分为11.7±7.2,其中69.9%的人表示“良好”或“足够”满意。33.1%有一个或多个“特别注意症状(SAS)”。关于MENTOR工具的颜色:34.6%的当前治疗是足够的(绿色),29.7%需要重新评估(黄色),35%需要改变(红色)。而在“绿色”患者中,主观感知与得分一致,24%的“黄色”患者和34.4%的“红色”患者回答他们得到了很好的管理。临床或人口学特征与患者满意度或属于三个颜色区域无关。结论:脊髓损伤患者的有效肠道管理与患者特征或满意度无关。许多患者有不适当的肠道管理,尽管他们的满意度和慢性损伤。这种差异要求使用MENTOR等客观工具进行定期评估,以确定需要干预的个体。
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引用次数: 0
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Journal of Spinal Cord Medicine
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