The relationship between demographic and clinical variables,and quality of life aspects in patients with psoriasis

There is a strong need for health care programmes to promote functioning and quality of life in patients suffering from psoriasis. The aim of the present study is to highlight the relationships between demographic and clinical variables and disease-specific disability, health status, the perception of living with a chronic disease and the overall quality of life in patients suffering from psoriasis. A further aim is to examine the extent to which the effects of demographic and clinical variables on mental health and the overall quality of life are mediated by disability, physical health and the perception of living with psoriasis. The sample examined in this study comprised 334 patients (20% in-patients and 80% out-patients) who were treated consecutively at three dermatology departments in eastern Norway. A total of 282 patients completed the testing procedures, yielding a response rate of 85%. The following questionnaires were used: The Psoriasis Disability Index, the Sf-36 and the Quality of Life Scale. Correlation and multiple linear regression analyses were performed to address the core issue. Results show that demographic and clinical variables combine to explain variance in health status, the perception of living with psoriasis and overall quality of life. While most of the variance is explained by the clinical variables, the disease-specific disability variable seems to be an important mediating factor.     

健康教育对成年癫痫患者治疗依从性及生活质量的影响

目的探讨健康教育对成年癫痫患者治疗依从性及生活质量的影响。方法将130例成年癫痫患者分为健康教育组（68例）和非健康教育组（62例）,均给予规范化治疗,健康教育组对患者及家属普及癫痫相关知识及个别心理咨询,随访时间为6个月,采用成年癫痫患者生活质量量表-31（QOLIE-31）中文版进行评定。结果健康教育组患者及家属癫痫相关知识知晓率（94．12％）明显高于非健康教育组（29．03％）（χ^2=58．99,P〈0．05）;研究期间不规范用约（10．29％）及调整用药人次（27．94％）明显低于非健康教育组（27．42％,45．16％）（均P〈0．05）;3个月及6个月时发作频率减少50％以上者（79．41％,85．29％）及完全控制者（36．77％,42．65％）明显高于非健康教育组（51．61％,61．29％,20．97％,25．81％）（均P〈0．05）。研究结束时,两组患者QOL总分及各分项得分均较研究前有提高（均P〈0．05）,其中健康教育组提高程度史为显著（均P〈0．05）。结论开展健康教育有助于提高癫痫患者治疗依从性,减少发作,提高生活质量。     

成人癫痫患者生活质量影响因素的调查和分析

目的调查和分析成人癫痫患者生活质量的影响因素，为采取多方面的措施以全面提高患者的生活质量提供理论依据。方法采用癫痫患者生活质量量表-31（QOLIE-31）中文版，对107例成人癫痫患者的生活质量进行评估，调查内容包括一般资料及QOLIE-31中文版的调查项目。对可能影响患者生活质量的因素进行单因素和多因素分析，确定影响患者生活质量的因素。结果婚姻状况、性别、职业类型、病程、发作类型、年龄、抗癫痫药物类型和抗癫痫药物数目不是影响因素。发作频率越低、学历水平越高、经济情况越好的患者，生活质量越好。发作频率对生活质量的影响最大。结论影响成人癫痫患者生活质量的因素是发作频率、学历水平和经济情况，其中发作频率的影响最大。     

291例门诊就诊成年癫痫患者生存质量及其影响因素研究

目的了解291名门诊就诊成年癫痫患者的生存质量及其影响因素。方法选取2005年7月至2006年7月在北京天坛医院癫痫门诊就诊的癫痫患者，用成年癫痫患者生存质量量表-31中文版对符合调查标准的患者进行生存质量测量和评价。结果生存质量得分为（56．46±16．58）分；生存质量各项目得分分别为：发作担忧（45．01±25．25）分、生活质量自我评价（56．12±16．37）分、感情幸福（59．35±19．56）分、认知功能（58．58±22．41）分、精力和疲劳（59．12±18．98）分、药物作用（40．45±24．44）分、社会功能（53．00±26．36）分；单因素分析结果显示，不同文化程度、是否存在自我报告药物副作用以及不同服药情况患者生存质量不同（P〈0．05）；多元线性回归分析显示，文化程度、是否存在自我报告药物副作用影响患者生存质量（P〈0．05）。结论癫痫患者的生存质量低；药物副作用、服药情况以及文化程度是影响癫痫患者生存质量的主要因素。     

The health-related quality of life of patients with epilepsy compared with angina pectoris, rheumatoid arthritis, asthma and chronic obstructive pulmonary disease

The objective of this study was to compare the health-related quality of life (HRQL) of patients with epilepsy with populations suffering from different chronic diseases, using the short form 36 (SF-36) health profile measure. The populations to be compared were adult patients drawn from hospital based registers, with confirmed epilepsy (n = 397), angina pectoris (n = 785), rheumatoid arthritis (n = 1030), asthma (n = 117) and chronic obstructive pulmonary disease (COPD) (n = 221). Health-related quality of life scores were compared using analysis of covariance (ANCOVA) for predicting mean scores adjusted for age, gender, education and comorbidity. Patients with epilepsy on average scored highest on all scales, reflecting that in our sample the majority had well-controlled epilepsy. Our results indicate that the HRQL of a representative sample of patients with epilepsy is good, when compared with other chronic disorders, although reduced in several dimensions compared with a general reference population. Patients with rheumatoid arthritis (RA) and COPD scored lowest on the physical function scales, while rheumatoid arthritis patients reported most pain. This revised version was published online in June 2006 with corrections to the Cover Date.     

The evolution of health-related quality of life assessment in epilepsy

The purpose of this article is to review the ways in which quality of life has been assessed in patients with epilepsy. It is specifically proposed that there have been three phases or types of studies examining the effects of epilepsy on cognitive, behavioural, social and physical function. The first and oldest phase was characterized by the use of traditional forms of clinical evaluation and available generic measures of cognitive, behavioural and psychosocial function to study the general effects of epilepsy, effects of epilepsy-specific clinical variables (e.g. seizure type, age at onset), and the consequences of treatment with antiepileptic medications on patients' lives. The second phase of research was characterized by the development of epilepsyspecific measures of cognitive ability, psychological status and psychosocial status, which were designed to meet the special research and clinical needs not provided by previous generic measures (e.g. Washington Psychosocial Seizure Inventory, Fear of Seizures Scale). The third and most recent phase is characterized by the use of models, techniques, and measures developed from the health services research field to assess formally contemporary definitions of health-related quality of life (HRQOL) (e.g. ESI-55, QOLIE-89, Seizure Severity Scale) and develop models of the effects of epilepsy on HRQOL. Thus, concern regarding the impact and consequences of epilepsy is not a new development, but has evolved over the years, resulting in new models and methods of assessment of disease impact on well-being and functional status.     

Agreement between self reports and proxy reports of quality of life in epilepsy patients

Agreement between self reports and proxy reports of quality of life was examined in a sample of 292 patients with epilepsy and their designated proxies. Patients and proxies completed an 89-item Quality of Life Inventory (QOLIE-89), with the items rephrased for the proxy. Results reveal moderate correlations (product-momentr ranging from 0.29 to 0.56 for 17 multi-item scales) between self reports and proxy reports. Agreement was good for measures of function that are directly observable and relatively poor for more subjective measures. Mean scale scores were significantly different between patients and proxies for only five of 17 multi-item scales. Proxy respondents systematically reported better functioning than did patients in three scales assessing cognitive functioning (allp<0.001). By contrast, patients reported more positive health perceptions and less seizure distress than proxies. Patient educational attainment correlated inversely with degree of disagreement between patient and proxy reports for six of the 17 QOL scales and for the overall score. In addition, proxy educational attainment correlated positively with agreement for four scales. This study indicates that for group level comparisons, proxy respondents can be substituted for adults with epilepsy having low to moderate seizure frequency. However, for individual level assessments proxies should be used with caution.Data collection was funded by an unrestricted educational grant from Wallace Laboratories. Preparation of this article was supported in part by RAND from its internal research funds. We thank Jim Tebow and Jacqueline Campbell for secretarial support. The opinions expressed are those of the authors and do not necessarily reflect the views of the sponsor, RAND, UCLA, or other institutions affiliated with this project. Requests for the QOLIE-89 should be directed to: Contracts Office, RAND, 1700 Main Street, Santa Monica, CA 90407-2138, USA.     

健康教育对2型糖尿病患者生存质量影响的研究

目的 了解影响2型糖尿病患者生存质量的因素和健康教育效果,为制定2型糖尿病患者的医院健康教育提供科学的依据.方法 将115人随机分成健康教育组和对照组,采用《糖尿病患者生存质量特异性量表》和相关的因素调查进行问卷调查,并进行两组之间的T检验和逐步回归分析.结果 健康教育组患者的生存质量较对照组有明显的提高,健康知识也有了明显的提高,相关行为和生理指标没有明显变化.健康教育、文化程度、并发症、体质指数、年龄和性别等因素影响生存质量.结论 应该加强对2型糖尿病患者的医院健康教育,同时要更加重视那些文化水平低的女性患者的健康教育.     

中国四城市15家医院门诊病例2型糖尿病合并症与生存质量关系研究

目的 探讨城市人群2型糖尿病合并症与患者生存质量的关系.方法 采用横断面调查的方法,从4个大城市15家医院门诊募集现患病例,采用问卷调查结合实验室检测的方法收集资料.分别运用t检验、方差分析和广义线性方程分析合并症与2型糖尿病患者生存质量的关系. 结果 合并症患者生存质量各维度得分均低于无合并症患者(得分降低4.68～16.06),合并症对患者生存质量各维度影响不同,对生理职能(降低22.45%)和情感职能(降低16.28%)影响较大.对生理机能(降低5.61%)和精神健康(降低6.65%)影响相对较小.合并症患者生存质量较无合并症患者总体低11.02%.随着合并症数量增加,患者生存质量逐渐降低,患者每增加1种合并症,其生存质量各维度得分平均降低2.82～10.33分. 结论 有合并症患者生存质量总体低于无合并症患者;随着合并症数量增加,患者生存质量逐渐下降,预防和减少患者合并症的发生对提高糖尿病患者的生存质量至关重要.     

体力活动与房颤患者预后和生活质量的关联研究

目的  探讨体力活动与房颤患者预后和生活质量的关联。方法  连续性纳入192名新发心房颤动患者,随访终点包括卒中、全因死亡以及生活质量。收集患者相关基线资料,采用全球体力活动量表(global physical activity questionnaire, GPAQ)收集患者基线体力活动情况,采用房颤特异性生活质量量表(Atrial Fibrillation Effect on Quality-of-Life, AFEQT)收集患者终点生活质量。运用Cox比例风险模型探索体力活动与房颤患者预后的关联。运用Spearman相关和偏相关分析体力活动与生活质量的关联。结果  多因素Cox回归分析模型发现,休闲中的高强度体力活动是房颤患者死亡的危险因素(HR=9.17, P=0.001);高强度的体力活动、休闲中的高强度体力活动是房颤患者卒中的危险因素(HR₁=4.97, P₁=0.020; HR₂=6.24, P₂=0.002)。偏相关分析结果显示体力活动总分与生活质量正相关(r=0.158, P=0.040)。结论  房颤患者进行适当中等强度的体力活动,可降低死亡和卒中的风险,提高生活质量。     

Health-related quality of life of patients with HIV: Impact of sociodemographic, clinical and psychosocial factors

Objectives: This study aims to analyse how a wide group of clinical, social, demographic and psychological factors are related to both physical and mental quality of life in HIV+ patients. Design: A cross-sectional study was carried out of 320 HIV+ patients in antiretroviral treatment who attended infectious diseases units in four hospitals in the region of Andalusia (Spain). Methods: Health-Related Quality of Life was measured by the MOS-HIV. Included as independent variables were: sociodemographic variables, variables related to antiretroviral therapy, psychosocial variables like social support (Duke-UNC-11) and psychological morbidity (GHQ-28), variables related to main risk behaviours and clinical variables. Results: In the multiple linear regression analysis, a better PHS quality of life was found to be associated with the absence of mental illness, social support, not being an intravenous drug user and using more than one type of non-injectable drug. A better quality of life, in mental terms, was found to be associated with fewer years as a non-intravenous drug user, having social support, absence of mental illness, not being an intravenous drug user taking only one additional pill, not having any difficulty in taking the medication, and being female. Conclusions: The study of other non-biological factors that may be related to quality of life has been limited practically to social support and the emotional state. This study highlights the importance of these factors independently from the clinical state, as well as the existence of other psychological and behavioural factors that are also related.     

Association between patient education and health-related quality of life in patients with Parkinson's disease

BACKGROUND: Providing patients with disease- and treatment-related information is an important role of medical staff and is now reimbursed in Japan by the national health insurance system under the rubric 'patient education'. Evaluation of the effectiveness of patient education programs is necessary to ensure that limited health care resources are used efficiently. OBJECTIVE: The objective is to determine whether educating patients with Parkinson's disease (PD) is related to better health-related quality of life (HRQOL). DESIGN: A cross-sectional study was conducted. SETTING: Members of the Japan Association of Patients with Parkinson's disease were randomly selected. PARTICIPANTS: A total of 1200 patients with PD were asked to fill in written questionnaires and replies from 762 (63.5%) were analyzed. MEASUREMENTS: The questionnaire inquired about clinical characteristics, comorbidity, symptoms of PD, complications of therapy, HRQOL, and patient education. SF-36 was used to assess HRQOL. The section on patient education comprised one question each on patient-perceived satisfaction with information provided on (1) disease condition and pathophysiology, (2) effectiveness of drug therapy, (3) adverse drug reactions, (4) publicly available financial and social resources, and (5) rehabilitation and daily activities. Patient education score was defined as the sum of the individual scores for these five questions. The relationships between scores on the SF-36 subscales and the patient education score were examined. RESULTS: More satisfaction with patient education was associated with higher scores in all SF-36 subscales except physical functioning and bodily pain. The difference in score between the most satisfied and the least satisfied patients ranged from 8.4 points on the subscales of general health and 16.7 points on the subscale of role limitation due to emotional problems. CONCLUSION: The conclusion that patient education is associated with better HRQOL in patients with PD is drawn.     

优质护理对老年高血压患者生活质量的影响

目的：探讨优质护理对老年高血压患者生活质量的影响。方法：选取88例老年高血压患者作为研究对象,将其随机分成对照组和护理干预组,每组44例,并对所有患者实施医疗护理,给予对照组按照常规方法进行治疗及护理,护理干预组则在常规护理的基础上实施优质护理干预;对两组患者的生活质量改善情况加以观察。结果：护理干预组的护理有效率为90.91%,对照组护理有效率为79.55%,两组数据差异有统计学意义（P〈0.05）;护理干预组患者的生活质量良好率为86.36%,对照组则为70.45%,差异有统计学意义（P〈0.05）。结论：对老年高血压患者实施优质护理,可有效的提高患者的治疗依从性,使临床症状得到改善,有力的促进了患者生活质量的提高。     

The routine use of health-related quality of life measures in the care of patients with epilepsy: rationale and research agenda

Reliable and valid patient-completed questionnaires to assess the health related quality of life (HRQOL) of people with epilepsy are becoming increasingly available. At present, however, they are not routinely used in epilepsy patients' care. The use of HRQOL measurement in clinical practice settings may improve the quality of care for people with epilepsy through (1) increasing the detection of patients' problems with daily functioning and well-being: (2) guiding therapeutic management; and (3) leading to improvements in patients' HRQOL and satisfaction with care. To realize the potential benefits of HRQOL assessment in the care of people with epilepsy, research into the feasibility of the office-based use of HRQOL questionnaires, measurement quality, and the impact of routine HRQOL assessment on the quality of epilepsy patients' care needs to be undertaken. The transfer of HRQOL questionnaires from research tools into clinical tools requires the collaboration of social scientists, health services researchers, and clinicians. HRQOL questionnaires have the potential to become a new clinical tool which could enhance the quality of care physicians are able to provide for their patients with epilepsy.     

哈尔滨市农村癫痫患者健康相关生命质量评价研究

目的 评价哈尔滨市农村癫痫患者健康相关生命质量并分析其影响因素。方法 通过简单随机抽样方法,随机选取哈尔滨市236例惊厥型癫痫患者,基于中国人群的EQ-5D效应值积分体系计算癫痫患者健康效应值,采用秩和检验和Tobit回归模型方法对癫痫患者健康水平影响因素进行分析。结果 调查的236名癫痫患者在5个维度有困难者占比排序为:焦虑或沮丧（42.74%）、疼痛或不适（30.77%）、日常活动（28.63%）、自己照顾自己（18.80%）、行动（16.67%）,基于中国积分体系计算癫痫患者健康效应值为0.85,Tobit回归模型结果表明,职业（95%CI = 0.004～0.313,P = 0.045）、体育运动（95%CI = 0.001～0.438,P = 0.049）、最近一次发作时间（95%CI = - 0.316～- 0.020,P = 0.027）、总病程（95%CI = - 0.051～- 0.387,P = 0.011）对癫痫患者的健康效用值得分有统计学差异。结论 癫痫对患者心理方面的影响程度大于生理方面,应加大对癫痫患者心理方面的关注。脑力劳动者、体育运动的癫痫患者健康效用值相对较高,发作时间在0～3个月内、总病程较长的癫痫患者健康效用值相对较低。     

Determinants of health-related quality of life after temporal lobe epilepsy surgery

Ternporal lobectomy appears to be an effective treatment for medically intractable epilepsy. However, the influences of pre-operative health status and post-operative reductions in seizure activity on post-surgical health-related quality of life (HRQOL) are not well understood. We used the Epilepsy Surgery Inventory 55 (ESI-55) to evaluate changes between pre- and post-operative HRQOL in 47 temporal lobectomy patients. Patients exhibited significantly improved scores in five HRQOL domains: health perceptions; energy fatigue; social function; cognitive function and role limitations due to physical problems. Although significant improvements in HRQOL were observed, this was not the case for all patients. Specifically, patients with low or medium pre-operative HRQOL scores were found to have the greatest degree of improvement post-operatively. Patients with high pre-operative scores did not exhibit these same improvements, although they continued to report high scores. The results indicate that the ESI-55 is a satisfactory instrument to measure change in HRQOL but also emphasizes that the magnitude of change in post-operative HRQOL scores tends to vary according to baseline scores. The outcome of temporal lobectomy is not entirely based upon the procedure's ability to reduce the frequency of seizures, but is also influenced by level of HRQOL prior to surgery.     

微信平台在癫痫术后患者延续护理中的应用

目的 探讨微信平台对癫痫患者生活质量的影响。方法 将90例癫痫术后患者按随机数字表法分成观察组( n =45)和对照组( n =45)。两组均在接受抗癫痫治疗的基础上对患者进行长期教育和管理,观察组建立微群信,在医患间建立网络微信服务平台,为癫痫术后患者提供延续护理服务,主要涉及术后随诊、服药指导、健康教育以及心理咨询等。对比两组患者的生活质量、医嘱依从性、并发症发生情况、焦虑及满意度等情况。结果 观察组生活质量评分明显高于对照组,差异有统计学意义(P<0.05)。观察组的医嘱依从性及满意度均较对照组高,患者癫痫发作次数明显降低了,差异有统计学意义(P<0.05),90%以上患者再次选择本院复诊人数,两组之间无差异(P>0.05)。干预后患者焦虑程度较对照组低(P<0.05)。结论 通过微信平台管理癫痫,可以有效强化患者自我管理能力,降低术后并发症的发生率,提高癫痫术后患者生活质量和满意度。     

Subjective quality of life in patients with chronic fatigue syndrome

The aim of this study was to (1) assess Subjective Quality of Life (SQOL) of patients with Chronic Fatigue Syndrome (CFS) using a generic concept and to compare the findings with those in groups with mental disorders and healthy subjects, and (2) investigate whether and, if so, to what extent socio-demographic and clinical variables predict SQOL in CFS patients. Seventy-three patients diagnosed with CFS were randomly selected and interviewed from two specialised clinics. CFS was diagnosed using the Oxford Criteria. SQOL was assessed on the Manchester Short Assessment of Quality of Life (MANSA) and Health-Related Quality of Life (HRQOL) on the Medical Outcome Study Short-Form 36 (MOS) SF-36. A battery of mood and symptom questionnaires, including the Symptom Checklist Questionnaire (SCL-90-R), was administered to assess various aspects of symptomatology as potential predictor variables. Multiple regression analyses were conducted to identify predictors of SQOL. Overall, SQOL was low in CFS patients and less favourable than in groups with mental disorders and healthy subjects. Satisfaction was particularly low with life as a whole, leisure activities and financial situation. Whilst SQOL was only moderately correlated with HRQOL, the SCL-90-R score, especially SCL-90-R Depression scale score, was the best predictor of SQOL explaining 35% of the variance. HRQOL and generic SQOL appear distinct despite some overlap. The findings underline that SQOL is significantly disrupted in CFS patients. Depressive symptoms are statistically the strongest ‘predictor’ of SQOL, although the direction of the relationship is not established. These data suggest that treatment of depression associated with CFS, regardless of causation, could help to improve SQOL in CFS patients.     

Coping and quality of life in patients with psoriasis

The aim of the present study was to investigate the relationship between coping dimensions and overall quality of life, disability and health status in patients' with psoriasis. Psoriasis is one of several chronic diseases which requires self-management in order to ensure an enhanced quality of life. The sample comprised 334 patients who were treated consecutively at three dermatology departments in eastern Norway. A total number of 273 patients completed the questionnaire, yielding a response rate of 82% (20% in-patients and 80% out-patients). The following questionnaires were used: The Jalowiec Coping Scale, the Psoriasis Disability Index, the Quality of Life Scale, and the SF-36. Results showed that patients who used combined emotive coping strategies reported more disability, poorer mental health and worse overall quality of life. Furthermore, patients who more frequently used normalising/optimistic coping reported higher levels of mental health. However, the variance explained by coping effort was low to moderate. Coping explained the variance in mental health and overall quality of life to a greater extent than that in physical health. Knowledge about the relationships between coping and quality of life dimensions is important with regard to the establishment and implementation of appropriate psychosocial interventions for patients with psoriasis.     

伊来西胺单药治疗儿童癫痫部分性发作的临床疗效及安全性的研究

目的:评价伊来西胺(Ilepcimide)单药治疗儿童癫痫部分性发作的临床疗效及依从性。方法:收集2011年3～9月吉林大学第一医院小儿神经内科门诊癫痫部分性发作的患儿,2～5岁年幼组27例,5～15岁的年长组39例。所有患儿的伊来西胺初始计量均为5 mg·kg-1·d-1,如发作未被控制则每周加量<5 mg·kg-1·d-1,目标剂量为10 mg·kg-1·d-1,最大剂量<300 mg/d。观察期为6月,进行自身对照开放性研究,观察各组的维持期累计疗效,并进行安全性评估。结果:服药3个月后,年幼组的有效率、控制率分别为62.96%、40.74%,年长组的分别为64.10%、41.03%。服药6个月后,年幼组的有效率、控制率分别为77.78%、48.15%;年长组的分别为79.49%、51.28%。66例患儿在服药前及服药后第4周、3和6月时分别查血常规、尿常规、肝功能、肾功能、血液电解质及心电图,各项指标均未见异常改变。15.15%(10/66例)的患儿出现不良反应,主要表现为胃部不适、食欲差或恶心、疲倦、头晕、嗜睡的症状。结论:伊来西胺作为一种新型中药类抗癫痫药物对儿童癫痫部分性发作疗效良好,安全范围大,不良反应少,患者耐受性好,尤其适用伴有其他系统疾病的患者。