Chronic disease self-management for individuals with stroke,multiple sclerosis and spinal cord injury

Purpose. The purpose of this study was to explore the experience of people with neurological conditions who take the chronic disease self-management (CDSM) programme. The CDSM programme is used to teach skills to manage chronic conditions, and prevent secondary conditions. Few studies have explored the use of the CDSM programme with people with neurological conditions, in spite of the long standing and sometimes unpredictable nature of those conditions.

Method. This qualitative study explored the experience of people with stroke, multiple sclerosis (MS) and spinal cord injury (SCI) who participated in the CDSM programme. We completed individual interviews using a semi-structured interview guide with 22 individuals with stroke, MS and SCI.

Results. Five categories emerged from the interview discussions including: (1) pre-programme influences; (2) group; (3) factors affecting learning opportunities; (4) workshop content and (5) outcomes.

Conclusions. The results of this study provide insights regarding the optimal way to present the CDSM programme to people with neurological conditions.     

Community-based study of health-related quality of life in spinal cord injury,muscular dystrophy,multiple sclerosis,and cerebral palsy

Purpose: To assess health-related quality of life (HRQOL) in adults with spinal cord injury (SCI), muscular dystrophy (MD), multiple sclerosis (MS), and cerebral palsy (CP). Methods: This is a multicenter, community-based, cross-sectional study of adults diagnosed with CP (94), MD (99), MS (98), SCI (99), and healthy adults (105). The WHOQOL-BREF and WHOQOL-DIS questionnaire were used. Results: Significant differences in physical functioning between adults with CP and SCI and adults with MS (p?=?0.003 and p < 0.001, respectively), as well as between adults with SCI and MD (p?=?0.001) were found. Univariate tests revealed significant psychological functioning differences between adults with SCI and MD (p?=?0.02) and SCI and MS (p?=?0.001). There was a significant difference in physical functioning between controls and adults with SCI (p?=?0.049) and a significant difference in psychological functioning between controls and adults with MS (p?=?0.039). No statistically significant differences were found between the groups in social and environmental domains. Conclusions: Physical and physiological functioning were affected to various degrees in the studied neurodisabilities, while all groups reported similar levels of functioning and well-being in social and environmental domains.

Implications for Rehabilitation

• Health-related quality of life (HRQOL) in adults with neurodisabilities living in a community differs from HRQOL in these individuals sampled in clinical and/or rehabilitation settings.

• Psychosocial aspects of HRQOL relevant to physical disability were similarly affected across those groups.

• Physical and physiological domains in HRQOL were affected to various degrees among adults with neurodisabilities living in a community.

• Levels of functioning and well-being in social and environment domains of HRQOL are similar among adults with neurodisabilities living in a community.

• Community-based study of health-related quality of life in spinal cord injury, muscular dystrophy, multiple sclerosis, and cerebral palsy.

     

脊髓损伤患者康复期生存质量的研究

目的：测量脊髓损伤患者住院康复期的生存质量,以及康复治疗对脊髓损伤患者生存质量的影响,探讨改善脊髓损伤患者生存质量的干预方式。方法：91例符合入选标准的住院康复期的脊髓损伤患者,分为综合康复组和传统康复组;100例符合入选标准的骨关节疾患非脊髓损伤需要康复治疗的患者作为对照组。结果：脊髓损伤患者26—50岁占57.14%,损伤原因交通事故、高处坠落、重物砸伤占73.63%。比较生存质量总分及各领域得分,脊髓损伤患者明显低于骨关节疾患非脊髓损伤患者(P<0.05)。治疗前后比较,综合康复组和传统康复组生存质量总分、生理领域得分、环境领域得分均有所提高(P<0.05),但心理领域得分有所下降,社会领域得分差异无显著性意义。治疗前后生存质量总分、生理领域得分综合康复组比传统康复组提高更明显(P<0.05)。治疗后两组BI均有明显提高（P<0.01）,综合康复组比传统康复组改善更明显（P<0.05）。结论：脊髓损伤患者以青壮年为主,康复期脊髓损伤患者的生存质量比骨关节疾患非脊髓损伤人群低。现代康复治疗技术与传统中医相结合的综合康复治疗能更有效地提高康复期脊髓损伤患者的日常生活活动能力及生存质量。     

Perceived participation and problems in participation are determinants of life satisfaction in people with spinal cord injury

Purpose. To determine the relationships between perceived participation and problems in participation, and life satisfaction in people with spinal cord injury (SCI).

Method. A total of 157 men and women with SCI completed the Swedish versions of the Impact on Participation and Autonomy Questionnaire (IPA) and the Life Satisfaction Questionnaire (LiSat-9).

Results. The respondents' perceived participation in the five domains of the IPA was significantly correlated with their satisfaction with life as a whole (P < 0.01) and in most of the eight other domains of life satisfaction (P < 0.05 to P < 0.01) in the LiSat-9. The respondents' life satisfaction decreased gradually with increasing frequency of severe problems in participation and significant differences within groups of increasingly severe problems were found. The level of life satisfaction in respondents that perceived no severe problems with participation was similar to those of a normal population.

Conclusions. Perceived participation and problems in participation are determinants of life satisfaction in people with SCI. The results emphasize the importance to focus on severe problems with participation in order to optimize life satisfaction during the rehabilitation after SCI.     

Studying the quality of life and life satisfaction among persons with spinal cord injury undergoing urinary management.

The purpose of this survey was to investigate quality of life and life satisfaction among persons with spinal cord injury (SCI) who require various types of urinary management. A sample of 230 persons with SCI completed the Quality of Life Index (QLI), the Satisfaction With Life Scale (SWLS), and a demographic data form. Findings of this study indicated that there was no significant difference in QLI and SWLS with regard to the type of urinary management used (reflex voiding, indwelling catheter, suprapubic catheter, intermittent catheterization, external catheter or a combination of intermittent catheterization and external catheter). There also was no significant difference in QLI and SWLS with regard to the level of SCI or the incidence of hospitalizations for urinary infections. There were significantly higher QLI and SWLS scores for those with greater abilities to work, attend school, and participate in activities. There also was a significantly higher QLI for those without skin problems associated with urinary dysfunction.     

家庭辅助干预对脊髓损伤患者心理疗效和生理疗效的探讨

目的探讨家庭辅助干预对脊髓损伤患者心理健康和生理健康的影响。方法选取脊髓损伤患者164例,按入院时间分为观察组和对照组各82例;对照组患者接受常规护理,观察组在常规护理的基础上实施一系列家庭辅助干预措施。结果观察组患者的脊髓独立功能评分、生活质量评分均高于对照组(P0.01),焦虑、抑郁评分及并发症发生率均低于对照组(P0.01)。结论家庭辅助干预能有效促进脊髓损伤患者的康复,改善生活质量,值得临床推广应用。     

持续性脊髓压迫对脊髓损伤程度的影响

目的 探讨脊髓损伤(SCI)后脊髓压迫时间对损伤程度的影响。方法 以大脑皮层诱发电位(CSEP)和不同压迫时间为参数,自行设计一种犬的运动—静止压迫型SCI模型,选择T13为损伤中心,压迫脊髓,当 CSEP波幅下降达基础值的 50%时,维持静止压迫。将28只犬随机分为A、B、C、D 4组,A、B、C组脊髓分别受压30 min、90 min和180 min,D组为对照组,观察各组动物的组织病理学、影像学和行为学变化。结果 损伤组脊髓组织学均有损害,MRI显示损害程度随脊髓受压时间的延长逐渐加重( P<0.01);至术后28 d,各损伤组动物后肢功能均有恢复,BBB分级评分法评估组间有显著性差异( P <0.05)。结论 SCI后持续性脊髓压迫能加重损伤程度,应尽早解除脊髓压迫。     

A study of spirituality and life satisfaction among persons with spinal cord injury.

The purpose of this study was to investigate the relationship of spirituality and life satisfaction among persons with spinal cord injury. A nationwide sample of 230 persons with long-term spinal cord injury completed the Satisfaction With Life Scale (SWLS), the Quality of Life Index (QLI), and a demographic data form. Data analysis also indicated that there was a significant positive correlation between life satisfaction and psychological/spiritual factors of the QLI instrument. Nurses are mandated by the International Council of Nurses, the Joint Commission on Accreditation of Healthcare Organizations, and the Patient's Bill of Rights (Maddox, 2001) to provide spiritual care for clients. Rehabilitation nurses have the opportunity to support spirituality and life satisfaction as we assist our clients with disabilities to redefine their lives and explore new life opportunities.     

To regain participation in occupations through human encounters--narratives from women with spinal cord injury

Purpose. To gain an understanding of how women with spinal cord injury (SCI) experienced human encounters in occupations and how these influenced their participation.

Method. The data were collected through two or three in-depth interviews with 13 women (age 25 - 61 years) with SCI. Data analysis was carried out by using a paradigmatic analysis of narrative data, followed by an interpretation based on a narrative theory.

Results. The results showed a complexity where the women's experiences and acting in human encounters changed over time. In these human encounters the women struggled with conflicts, supported other persons that were insecure and revaluated their apprehension about persons in their social network. These multidimensional human encounters thereby enabled them to regain participation in occupations.

Conclusions. This shows that human encounters are important for persons with disabilities so they can restructure their occupational identity and their needs for participation in occupations. The study also showed that the use of narratives as a tool within rehabilitation could lead to an increased understanding of the subjective changes that occur over time for a person with a disability.     

Life satisfaction in people with spinal cord injury during the first five years after discharge from inpatient rehabilitation

Purpose: To describe the course of life satisfaction in persons with spinal cord injury (SCI) during the first 5 years after discharge from inpatient rehabilitation and to examine its determinants. Methods: Multi-centre prospective cohort study with four measurements, the first at discharge from inpatient rehabilitation, the last 5 years after discharge. Data of 162 persons with SCI were analyzed. Life satisfaction was measured as the sum score of ‘current life satisfaction’ and ‘current life satisfaction compared to life satisfaction before SCI’. Lesion characteristics, functional independence, secondary impairments, pain, social support and self-efficacy were analyzed as possible determinants of life satisfaction. Random coefficient analysis was used for the analyses. Results: No significant changes in life satisfaction were found between discharge and 2 years later, however there were significant increases from two to 5 years post discharge. High functional independence, low pain, high everyday social support and high self-efficacy were significant determinants of a positive course of life satisfaction after discharge. Conclusions: Increases in life satisfaction were found in persons with SCI in the long run. High functional status, low pain, good social skills and high self-efficacy were related to high life satisfaction.

Implications for Rehabilitation

• A spinal cord injury (SCI) is a major life event leading to serious physical disability and secondary medical problems, which has important consequences for the life satisfaction of the persons involved.

• No changes in mean life satisfaction ratings were found between discharge and two years later, but slight increases in life satisfaction were reported from two to five years post-discharge in persons with SCI.

• High functional independence, low pain, high everyday social support, and high self-efficacy were significant determinants of a positive course of life satisfaction after discharge.

• A combined model of physical (functional independence and pain) and psychosocial factors (social support and self-efficacy) explained 66% of the variance in life satisfaction.

     

胚胎脊髓对损伤脊髓的修复作用研究

目的探讨不同条件下胚胎脊髓移值修复成鼠急性脊髓损伤(SCI)的能力。方法成鼠胸髓损伤后分别移植孕14d胚胎脊髓(FSC组)、游离正中神经加胚胎脊髓(P＋F组)、带血管蒂正中神经加胚胎脊髓(V＋F组),术后8周行组织学检查。结果V＋F组胚胎脊髓与受体融合佳,体积增长速度、神经纤维和神经元数目显著高于P＋F、FSC组（P<0.01）,细胞分化比较好,突触较成熟,界面区也无明显的胶质增生。结论带血管蒂周围胚胎脊髓联合移植,对FSC的生长发育、对损伤神经元的再生能力均有一定的促进作用。     

系统护理在脊柱骨折合并脊髓损伤患者中的应用效果

目的探讨系统护理在脊柱骨折合并脊髓损伤患者中的应用效果。方法随机将2017年10月至2018年10月68例脊柱骨折合并脊髓损伤患者分为观察组(34例,系统护理)与对照组(34例,常规护理)。比较两组患者的护理效果。结果观察组出院后3、6个月的SCIM-Ⅲ评分高于对照组(P<0.05)。观察组患者的并发症总发生率低于对照组(P<0.05)。出院后3个月,两组患者的各项生活质量评分均升高,且观察组高于对照组(P<0.05)。结论将系统护理应用于脊柱骨折合并脊髓损伤患者中,可降低患者的并发症发生率,提高患者生活质量。     

多维度优质护理在手术治疗的脊柱骨折合并脊髓损伤患者中的应用效果

目的 分析多维度优质护理在手术治疗的脊柱骨折合并脊髓损伤患者中的应用效果.方法 选取2017年8月至2019年8月我院收治的96例脊柱骨折合并脊髓损伤患者作为研究对象,将其随机分为对照组(48例,常规护理)和观察组(48例,多维度优质护理).比较两组的护理效果.结果 观察组的护理满意度显著高于对照组(P﹤0.05).出...     

Extending technology-aided leisure and communication programs to persons with spinal cord injury and post-coma multiple disabilities

Purpose: These two studies extended technology-aided programs to promote leisure and communication opportunities to a man with cervical spinal cord injury and a post-coma man with multiple disabilities. Method: The studies involved the use of ABAB designs, in which A and B represented baseline and intervention phases, respectively. The programs focused on enabling the participants to activate songs, videos, requests, text messages, and telephone calls. These options were presented on a computer screen and activated through a small pressure microswitch by the man with spinal cord injury and a special touch screen by the post-coma man. To help the latter participant, who had no verbal skills, with requests and telephone calls, series of words and phrases were made available that he could activate in those situations. Results: Data showed that both participants were successful in managing the programs arranged for them. The man with spinal cord injury activated mean frequencies of above five options per 10-min session. The post-coma man activated mean frequencies of about 12 options per 20-min session. Conclusions: Technology-aided programs for promoting leisure and communication opportunities might be successfully tailored to persons with spinal cord injury and persons with post-coma multiple disabilities.

• Implications for Rehabilitation

• Technology-aided programs may be critical to enable persons with pervasive motor impairment to engage in leisure activities and communication events independently.

• Persons with spinal cord injury, post-coma extended brain damage, and forms of neurodegenerative disease, such as amyotrophic lateral sclerosis, may benefit from those programs.

• The programs could be adapted to the participants’ characteristics, both in terms of technology and contents, so as to improve their overall impact on the participants’ functioning and general mood.

     

中国北方人群多发性硬化的临床与MRI特点研究

目的回顾性分析中国北方人群MS的临床特点与MRI影像表现。方法回顾性分析117例MS患者临床资料,分为视神经脊髓组(OSMS)42例和经典多发性硬化组(CMS)75例。比较2组患者临床特点、MRI表现和EDSS评分。结果OSMS患者脑脊液中白细胞数量显著高于CSM患者(P0.05)。MRI显示2组脊髓病灶数量差异有统计学意义(P0.05)。MRI显示CMS脊髓病灶为沿着脊髓长轴分布,且脊髓肿胀。OSMS脊髓呈萎缩状态。5年EDSS评分显示OSMS显著高于CMS(P0.05)。1~5年OSMS复发率明显高于CMS患者。结论 OSMS发病率高于西方患者。     

Responsiveness of selected outcome measures of participation restriction and quality of life in patients with multiple sclerosis

Purpose: To evaluate the responsiveness of two outcome measures of participation restriction [as measured by the Community Integration Questionnaire (CIQ)] and quality of life [as measured by the Multiple Sclerosis Quality of Life (MSQOL)] following a physiotherapy intervention in patients with multiple sclerosis (MS). Method: A sample of 265 patients completed both instruments first at the time of initial visit and then after 4–6 weeks physiotherapy. In addition, patients were asked to complete the 7-point global rating scale as an external criterion of change at the post-intervention time. The responsiveness was evaluated using the receiver operating characteristics (ROC) method and the correlation analysis. Two useful statistics were area under the ROC curve (AUC) and the minimally clinically important difference (MCID). The AUC and correlation coefficient greater than 0.70 were considered as acceptable responsiveness. Results: The CIQ achieved the acceptable responsiveness with an AUC of 0.81. However, the AUCs of 0.61 and 0.66 were obtained for the MSQOL physical and mental, respectively. Moreover, good correlation coefficient was obtained for the CIQ (Gamma?=?0.76) while fair correlations of 0.28 and 0.33 were obtained for the MSQOL physical and mental, respectively. The MCIDs were approximately 0.50, 1.5 and 2.5 points for the CIQ, MSQOL physical and mental, respectively. Conclusions: In contrast to the MSQOL, the CIQ was responsive outcome measure in detecting changes in participation restriction of patients with MS. Moreover, the MCID values obtained in this study will help the clinicians and researchers to determine if a patient with MS has experienced a true change following physiotherapy intervention.

• Implications for Rehabilitation

• The results provide valuable information regarding to the ability of two outcome measures (i.e. the CIQ and MSQOL) to detect treatment effects in patients with MS.

• In contrast to the MSQOL, the CIQ is a responsive measure to changes in participation restriction due to physiotherapy.

• A patient with MS had to change at least 0.50 point on the CIQ, 1.5 points on the MSQOL physical and 2.5 points on the MSQOL mental to be judged as having clinically changed.

     

脊髓损伤后疼痛与处置

疼痛性感觉是脊髓损伤后截瘫和四肢瘫患者所面临的一个经常性的和令人烦恼的后遗症。针对有关脊髓损伤性疼痛的分类及非中枢性疼痛。