The association of race, cultural factors, and health-related quality of life in persons with spinal cord injury

Myaskovsky L, Burkitt KH, Lichy AM, Ljungberg IH, Fyffe DC, Ozawa H, Switzer GE, Fine MJ, Boninger ML. The association of race, cultural factors, and health-related quality of life in persons with spinal cord injury.

Objective

To examine the association of race and cultural factors with quality-of-life factors (participation, life satisfaction, perceived health status) in people with spinal cord injury (SCI).

Design

Cross-sectional multisite study using structured questionnaires.

Setting

Six National SCI Model Systems centers.

Participants

People with SCI (N=275; age ≥16y; SCI with discernable neurologic impairments; used power or manual wheelchair for >1y as primary means of mobility; nonambulatory except for exercise purposes).

Interventions

None.

Main Outcome Measures

Participation (Craig Handicap Assessment and Reporting Technique Short Form); satisfaction (Satisfaction With Life Scale); and perceived health status (2 items from 36-Item Short Form Health Survey).

Results

African American (n=96) with SCI reported more experiences of discrimination in health care, greater perceived racism, more health care system distrust, and lower health literacy than whites (n=156; P range, <.001–<.05). Participants who reported experiencing more discrimination in health care reported better occupational functioning (odds ratio [OR], 1.5; 95% confidence interval [CI], 1.07–2.09; P<.05). Those who perceived more racism in health care settings reported better occupational functioning (OR, 1.65; 95% CI, 1.12–2.43; P<.05) and greater perceived health (β=.36; 95% CI, .05–.68; P<.05). Those who reported more distrust in the health care system reported better current health compared with 1 year ago (β=.38; 95% CI, .06–.69; P<.05). Those who reported better communication with their health care provider reported higher levels of mobility (OR, 1.5; 95% CI, 1.05–2.13; P<.05) and better general health (β=.27; 95% CI, .01–.53; P<.05).

Conclusions

In this cross-sectional study of people with SCI, higher levels of perceived discrimination and racism and better communication with health care providers were associated with an increase in participation and functioning and improvements in perceptions of well-being. These associations are different from those reported in other study populations and warrant confirmation in future prospective studies.     

青光眼患者的生活质量及其影响因素

目的 :评价青光眼患者的生活质量及其影响因素。方法 :采用视功能损害患者生存质量量表 ,对 1 4 1例青光眼患者的生活质量进行评价。结果 :青光眼患者的生活质量得分普遍下降 ,尤以年龄的增加、教育水平的降低、不良遵医行为以及无固定经济来源者较为突出 (P <0 .0 5) ;不同程度的视力损害严重影响着患者的生活质量得分 (P <0 .0 5) ;多因素逐步直线回归显示 :生活质量的得分与视力、经济收入、年龄、遵医行为有关 (P <0 .0 5) ;在生活质量评估的 4个方面中 ,精神心理方面的得分低于其他 3方面的得分。结论 :在保护青光眼患者视功能的同时 ,要重视社会、心理等因素 ,给予必要的健康教育和心理治疗 ,以提高其生活质量     

阶段性康复锻炼对脊柱手术患者术后并发症与生活质量的影响

目的探讨阶段性康复锻炼对脊柱手术患者术后并发症及生活质量的影响。方法选取我院2018年3月至2019年3月收治的行手术治疗的脊柱骨折患者84例,随机等分为对照组和观察组,对照组术后实施常规护理,观察组术后实施阶段性康复锻炼,比较两组患者的术后并发症发生率及生活质量。结果观察组术后并发症发生少于对照组(P<0.05);观察组生活质量评分高于对照组(P<0.05)。结论阶段性康复锻炼在脊柱手术患者中的应用,能减少术后并发症,全面提升其生活质量。     

The persistence of pain behaviors in patients with chronic back pain is independent of pain and psychological factors

The primary purpose of the present study was to examine the temporal stability of communicative and protective pain behaviors in patients with chronic back pain. The study also examined whether the stability of pain behaviors could be accounted for by patients’ levels of pain severity, catastrophizing, or fear of movement. Patients (n = 70) were filmed on two separate occasions (i.e., baseline, follow-up) while performing a standardized lifting task designed to elicit pain behaviors. Consistent with previous studies, the results provided evidence for the stability of pain behaviors in patients with chronic pain. The analyses indicated that communicative and protective pain behavior scores did not change significantly from baseline to follow-up. In addition, significant test-retest correlations were found between baseline and follow-up pain behavior scores. The results of hierarchical multiple regression analyses further showed that pain behaviors remained stable over time even when accounting for patients’ levels of pain severity. Regression analyses also showed that pain behaviors remained stable when accounting for patients’ levels of catastrophizing and fear of movement. Discussion addresses the potential contribution of central neural mechanisms and social environmental reinforcement contingencies to the stability of pain behaviors. The discussion also addresses how treatment interventions specifically aimed at targeting pain behaviors might help to augment the overall impact of pain and disability management programs.     

老年脊髓损伤患者生存质量影响因素分析

目的:研究老年脊髓损伤(SCI)患者生存质量的相关影响因素,从而提出改善其生存质量的措施,提高老年SCI患者的生存质量。方法:选取60岁以上SCI患者100名,根据国内外文献及我国社会文化背景,选出可能影响老年SCI患者生存质量的因素15项,自行设计问卷进行调查,同时采用世界卫生组织生存质量测定量表简表(WHOQOL-BRIEF)进行生存质量评分。结果:经分析,15项因素中影响老年SCI患者生存质量的变量为8个,分别是年龄、神经损伤平面、损伤性质、生活自理能力、并发症及慢性病数、社会支持、医疗费用方式、居住方式,复相关系数为0.779。其中年龄、并发症及慢性病数与生存质量呈负相关(P0.01),生活自理能力、社会支持与生存质量呈正相关(P0.01)。损伤神经平面自上向下生存质量由低至高,脊髓不完全损伤的生存质量高于完全损伤的生存质量(P0.01),医疗费用有保障的老年SCI患者生存质量更高(P0.05),集中居住的老年SCI患者比分散居住的生存质量略高(P0.05)。结论:年龄、损伤神经平面、损伤性质、生活自理能力、并发症及慢性病数、社会支持、医疗费用方式、居住方式都是影响老年SCI患者的生存质量的主要因素。     

Relationships between demographic, clinical and pain variables and health-related quality of life in patients with chronic low back pain treated with instrumented fusion

The purpose of this cross-sectional study was to assess the relationships between demographic, clinical and pain variables and health-related quality of life (HRQOL) in patients who had undergone instrumented spinal fusion because of chronic low back pain (CLBP). The sample comprises 101 patients (70% women, mean age 46 years) who had received surgery between 1993 and 2000. The SF-36 Health Survey was used to assess HRQOL. Pain was assessed by sensory, affective and evaluative subgroups of the Norwegian Pain Questionnaire (modified McGill Pain Questionnaire). Age, work status, number of years after surgery, physical training, other chronic conditions and affective and evaluative pain (all p < 0.05) were the most prominent factors affecting HRQOL. The highest adjusted R(2) to explain the variance was physical function (52%) and the lowest was emotional role limitations (15%). Pain, particularly affective and evaluative pain, contributed more to the explained variance of HRQOL than demographic and clinical variables.     

Cross-sectional evaluation of patient functioning and health-related quality of life in patients with neuropathic pain under standard care conditions.

AIM: The purpose of this cross-sectional evaluation was to determine the impact of neuropathic pain (NeP) on patient functioning and Health-Related Quality of Life (HRQoL) under standard care conditions. METHODS: Patients with NeP or neuropathic and nociceptive pain [Mixed Pain (MP)] enrolled in the DONEGA study, a naturalistic, prospective and multi-centre study of the effectiveness of gabapentin under usual care conditions, were included in this cross-sectional evaluation before starting study treatments. Participants completed the Short Form-McGill Pain Questionnaire, MOS Short Form-12 (SF-12), and Sheehan Disability Scale (ShDS). Multivariate analysis and regression models were used to analyze patient data. RESULTS: A total of 1519 patients [mean+/-SD; 56.0+/-13.7 yrs old (58.8% female)] with NeP or MP were enrolled in the study. The mean pain history was 1.1+/-2.8 yrs, current pain intensity on a 5-point visual analogue scale was 2.8+/-1.0 and mean pain in previous week was 71.3+/-19.0mm. Pain substantially interfered (i.e., score > or = 5 on 0-10 scale) with normal work (5.9+/-3.0), social life (5.7+/-3.0), and family life (5.3+/-3.0), producing substantial disability (total ShDS score of 16.9+/-8.3 pts). Country-standardised physical (PCS) and mental health (MCS) component summary scores of SF-12 indicated significant impairment in both domains compared with the general Spanish population: PCS; -1.13+/-1.0 SDS (standard deviation score), and MCS; -1.21+/-0.7 SDS, equivalent to the 15th and 25th percentiles of normative populations, respectively. CONCLUSIONS: Under standard care conditions, neuropathic and mixed pain are associated with impaired physical and mental QoL, producing a substantial level of disability in these patients.     

肺高压患者健康相关生活质量调查及其影响因素分析

目的：调查肺高压患者健康相关生活质量现状,探讨其影响因素。方法采用便利抽样法,运用一般资料调查表、中文版明尼苏达心力衰竭生活质量问卷( MLHF-PH )、医院焦虑抑郁量表(HADS)、社会支持评定量表(SSRS)、慢性病自我效能感量表(SECD6)与医学应对方式量表(MCMQ)对2013年5月—2014年5月165例肺高压患者进行问卷调查。结果肺高压患者 MLHF-PH 平均分(41.93±18.98)分。婚姻状况、不同职业、费用主要来源、疾病类型之间的患者MLHF-PH得分比较,差异有统计学意义(F值分别为6.692,8.593,3.342,4.388;P<0.05)。多元逐步回归分析显示mMRC呼吸困难分级、抑郁、6 min步行距离、纽约心功能分级、症状个数及住院次数纳入回归方程,能解释总变异量的78.1%。结论肺高压患者健康相关生活质量总体处于较低水平,医护人员应给予针对性干预措施,以提高患者健康相关的生活质量。     

The influence of participation on health-related quality of life in stroke patients

Purpose.?Limitations in participation may have independent influences on health-related quality of life (HRQOL) at early and late phases of stroke recovery.

Methods.?Consecutive stroke patients were interviewed at months 3 and 12 after stroke for modified Barthel Index (MBI), geriatric depression scale (GDS) and WHO QOL questionnaire (abbreviated Hong Kong version). London handicap scale (LHS) was used to measure limitations in participation. The influence of the six LHS domains on the four HRQOL domains, adjusted for MBI and GDS was analysed by structural equation modelling with a two-component analysis.

Results.?Complete data were collected in 500 and 433 subjects at months 3 and 12, respectively. On multivariate analysis, after adjustment for MBI and GDS, the independence and social integration domains of LHS had significant influence on physical and social HRQOL, respectively, at both 3 and 12 months post-stroke. The occupation domain was a significant factor of physical and environmental HRQOL at month 12, but not at month 3. Economic sufficiency had more influence on HRQOL at month 3 than at month 12. The mobility and orientation domains had no significant negative influence on HRQOL.

Conclusions.?In stroke patients, participation had significant independent influences on HRQOL.     

The relationship between pain,disability, quality of life and cognitive-behavioural factors in chronic back pain

Purpose: This pilot study systematically examined the correlations between the outcome variables pain intensity, disability and health-related quality of life (HRQOL) and between these outcomes and known psychological risk factors for chronic low back pain (CLBP), such as depression, trait anxiety, avoidance- and endurance-related pain responses at two different assessment points. Method: Data from 52 CLBP inpatients treated in an orthopedic clinic were investigated at two points in time: during the first days after admission and 6 months after the termination of the inpatient treatment. Bivariate relationships between pain intensity, disability, HRQOL and psychological variables were examined with the help of Pearson product moment correlations. Furthermore, the differences that exist between correlations at baseline and follow-up were tested for significance. Results: Significant and large differences were found between the correlations with low correlations at baseline and high correlations at the follow-up. Furthermore, HRQOL showed a positive correlation with endurance-related and a negative correlation with avoidance-related pain responses. Conclusions: Focusing on a systematic comparison of two significant assessment time points in CLBP with an acute exacerbation at baseline, the results of this study underlined the recurrent course of LBP. The results highlight that the assessment time points play an important role in CLBP.

Implications for Rehabilitation

• Low back pain is a major public health problem with high direct and indirect back-pain-related costs.

• Chronic low back pain is a disabling disease which restricts quality of life.

• Psychological factors may have a larger impact on disability and quality of life than pain itself.

• The recurrent course of low back pain highlights the importance of multidisciplinary pain management even during acute exacerbations of pain.

     

The impact of topiramate on health-related quality of life indicators in chronic migraine

BACKGROUND: Chronic migraine is a disabling primary chronic daily headache disorder that significantly impacts the daily activities of patients with this disorder. To our knowledge, this is the first report of a large, randomized, double-blind, placebo-controlled trial that assessed the impact of topiramate on the daily activities, emotional distress, headache-related disability, and global impression of change in patients with chronic migraine. OBJECTIVE: To assess whether topiramate 100 mg/day reduces migraine-related disability and limitations of daily activities in patients with chronic migraine. STUDY DESIGN/METHODS: Patients aged > or =18 years with chronic migraine were randomized 1 : 1 ratio to topiramate 100 mg/day or placebo. The double-blind period lasted 16 weeks. Three patient-reported outcome measures were administered: Migraine Disability Assessment, Migraine-Specific Quality of Life Questionnaire (Domains: Role Function Restrictive and Preventive and Emotional Function), and Subject's Global Impression of Change. Investigators completed a Physician's Global Impression of Change for each patient. Subject's Global Impression of Change and Physician's Global Impression of Change were completed one time, at the end of study, and measured on a 7-point scale (1 = very much improved to 7 = very much worse). The Migraine-Specific Quality of Life Questionnaire was analyzed using analysis of covariance (last observation carried forward) approach. Results were not adjusted for multiplicity. RESULTS: A total of 328 patients were randomized (topiramate, n = 165; placebo, n = 163), and 306 patients were included in the intent-to-treat population. Mean age was 38.2 years, and a majority of the patients were female (85.3%). Fifty-six percent of topiramate-treated patients vs 45% of placebo-treated patients reported >50% improvement from baseline in Migraine Disability Assessment scores (P = .074). The Migraine-Specific Quality of Life Questionnaire analysis demonstrated significant improvements at week 4 in all 3 domains, and at weeks 8 and 16 in both Role Function-Restrictive and Emotional Function domains (P < .05). Role Function-Preventive approached, but did not reach significance, at week 8 (P = .053). Seventy-five percent and 72% of topiramate-treated patients vs 61% and 59% of placebo-treated patients reported improvements on the Subject and Physician's Global Impression of Change scales (P = .025 and P = .037, respectively). CONCLUSION: Compared with placebo-treated patients, topiramate 100 mg/day appears to contribute to reductions in migraine-related limitations on daily activities and emotional distress beginning as early as week 4 and continuing up to week 16 after treatment. Physician's Global Impression of Change results are very similar with Subject's Global Impression of Change, indicating concordance between the physician's and the subject's assessment of improvement.     

心理干预对增殖型糖尿病性视网膜病变患者生存质量影响的研究

目的 探讨心理干预对增殖型糖尿病性视网膜病变患者住院期间视功能相关生存质量的影响.方法 采用视功能损害眼病患者生存质量量表、汉密顿(HAMA)焦虑量表、自行设计的焦虑相关因素调查问卷对患者分别在入院时、手术前后和出院前进行评估.结果 实验组和对照组比较,干预后实验组与对照组焦虑评分、生存质量总评分、精神与心理方面评分有显著性差异(P＜0.01),症状与视功能方面评分、身体机能、社会活动方面评分无显著性差异(P＞0.05).结论 心理干预可以明显缓解增殖型糖尿病性视网膜病变患者住院期间的焦虑情绪,改善心理功能,提高住院期间视功能相关生存质量.     

健康教育对糖尿病患者心理状况和生活质量的影响

目的:探讨健康教育对糖尿病患者心理健康状况及生活质量的影响,为健康教育和临床护理提供相应的依据.方法:选择2008年1月-2010年12月入住我院治疗的268例符合纳入条件的患者为研究对象,健康教育干预前后分别用一般调查问卷、症状自评量表和生活质量测定量表简表进行调查.结果:接受护理干预后的患者的生活质量和心理健康状况较接受干预前有所好转(P﹤0.05,P﹤0.01).结论:糖尿病患者经过护理干预后,生活质量状况整体水平有所提高,护理人员应在实施护理的过程中多应用这些方法提高护理服务质量.     

腰椎间盘突出症患者疼痛相关心理与生活质量的研究进展

通过总结腰椎间盘突出症患者疼痛相关心理和生活质量的现状,为提高腰椎间盘突出症高危人群的生活质量提供依据.     

Interference due to pain following spinal cord injury: important predictors and impact on quality of life

Two studies were designed to examine important predictors of pain following spinal cord injury (SCI), and the impact of pain on self-reported quality of life (QOL). Pain was defined as ‘interference in day-to-day activities secondary to pain’. In order to determine risk factors associated with the development of pain interference, Study 1 examined the predictive validity of multiple demographic, medical, and QOL variables at year 1 post-SCI to self-reported pain interference 2 years post-injury. Results showed that middle age (30–59-year-olds), lower self-reported mental health, and pain interference at 1 year post-SCI were the most important unique predictors of pain interference 2 years post-SCI. In Study 2, participants were separated into four groups; (1) those pain-free at years 1 and 2, (2) those pain-free at year 1 and in pain at year 2, (3) those in pain at year 1 and pain-free at year 2, and (4) those in pain at years 1 and 2. Results showed that only those experiencing a change in pain interference status reported a change in QOL. More specifically, those developing pain interference (group 2) from year 1 to year 2 reported decreased life satisfaction, physical health, and mental health, whereas, those with resolving pain interference from year 1 to year 2 reported an increase in these same domains. Unexpectedly, change in pain interference status was unrelated to change in self-reported handicap. Implications and future directions are discussed.     

Patterns of Internet use by persons with spinal cord injuries and relationship to health-related quality of life

OBJECTIVES: To examine patterns of computer and Internet use among persons with spinal cord injuries (SCI) and to assess the relationship between Internet use and health-related quality of life (HRQOL). DESIGN: Cross-sectional survey design. SETTING: National Model Spinal Cord Injury Systems. PARTICIPANTS: People with SCI enrolled in a national database. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Patterns of Internet use and relationship to HRQOL indicators: self-perceived health status, health status compared with 1 year ago, severity of depression, social integration score, occupation score, contacts with friends, business contacts, and satisfaction with life. RESULTS: Most subjects owned computers, had Internet access, and used the Internet regularly-primarily for email, disability and health information, and shopping. Bivariate analysis revealed significant differences in Internet access based on sociodemographics, particularly among subjects with less education and among African Americans and Hispanics. In initial univariate analysis, most HRQOL indicators were significantly better for Internet users; once sociodemographic factors were included, 4 indicators remained significant. CONCLUSIONS: Complex factors contribute to Internet access among people with SCI, with more barriers among specific subgroups. A significant HRQOL benefit from Internet use is suggested. Targeted interventions and studies of usage patterns are recommended.     

慢性阻塞性肺疾病患者情绪障碍、生活质量及心理干预的追踪研究

目的:探讨心理干预对慢性阻塞性肺疾病(COPD)患者情绪障碍、生活质量的影响,为促进患者康复提供依据。方法:将60例稳定期COPD患者按出院先后顺序分为研究组和对照组各30例,对照组实施自我管理护理,研究组在此基础上定期随访,给予综合性心理干预,随访时间为6个月。于随访前和随访6个月末分别采用焦虑自评量表(SAS)、抑郁自评量表(SDS)、呼吸问卷(SGRQ)评定两组患者康复效果。结果:随访前研究组SAS、SDS、SGRQ与对照组比较差异无统计学意义(P>0.05);随访6个月末研究组SAS、SDS、SGRQ均低于对照组(P<0.01)。结论:COPD患者有焦虑、抑郁情绪,生活质量较差,心理干预能够有效缓解或消除COPD患者的情绪障碍,提高生活质量,对患者身心康复具有良好作用。     

肾移植受者疾病进展恐惧感对生命质量的影响:侵袭性思维与心理困扰的链式中介作用

目的探讨侵袭性思维与心理困扰在肾移植受者疾病进展恐惧感和生命质量间的链式中介效应,以期为临床针对肾移植受者实施有效的心理干预提供科学的理论指导。方法本研究为横断面研究,采用便利抽样法,选择2019年1—5月在中国科学技术大学附属第一医院门诊随访的312例肾移植受者,采用一般资料调查表、疾病进展恐惧简化量表、事件影响量表的侵扰分量表、心理痛苦温度计以及简短生命质量量表对其进行调查。运用Mplus 8.3软件构建多重中介模型并进行验证。结果本研究最终纳入296例肾移植受者,生命质量心理健康得分为(49.58±8.97)分,躯体健康得分为(49.90±9.17)分。疾病进展恐惧感、侵袭性思维、心理困扰与生命质量的心理健康和躯体健康均呈负相关(r值为-0.453~-0.401,P<0.01)。疾病进展恐惧感对生命质量的中介效应成立,总的中介效应值为-0.273,其中侵袭性思维的特定中介效应占46.52%,心理困扰的特定中介效应占41.76%,侵袭性思维与心理困扰在疾病进展恐惧感和生命质量间的链式中介效应占11.72%。结论肾移植受者的侵袭性思维与心理困扰在疾病进展恐惧感和生命质量间的链式中介成立。临床工作人员在关注患者疾病恐惧感的同时,应注重评估患者的侵袭性思维和心理困扰,采取针对性的措施以减轻疾病进展恐惧感对生命质量的影响。