Factors that contribute to quality of life outcomes prioritised by people with multiple sclerosis

The aim was to investigate factors associated with depression and social function, two outcomes identified as important by people with multiple sclerosis (MS) and to identify underlying dimensions of psycho-social well-being that may be useful as outcome measures. People with MS in eight randomly selected health authorities/boards in England and Scotland completed a postal questionnaire relating to preferences and needs for their health and social care, along with the Beck Depression Inventory and the SF-36. Responses to 10 of the original items were subjected to factor analysis. These and other explanatory variables were entered into multivariable regression models for the two outcomes. The factor analysis resulted in three dimensions representing different aspects of psycho-social well-being; one of these (representing autonomy) was associated with improvements in both outcomes, as was the SF-36 emotional role limitation score. Three other SF-36 dimensions and lack of contact with a health professional in the last year were related just to social function. The regression models emphasise the value of enabling autonomy and self-reliance amongst people with MS, as well as more general measures of emotional health. The present work identifies specific questions that could be used to measure pivotal aspects of an individual's psycho-social well-being. While these findings warrant replication for people with MS, they may have relevance to those with other long-term illnesses.     

麻风病患者抑郁状态与生存质量关系的多重线性回归分析

目的 分析麻风病患者抑郁状态与生存质量各维度间的相关关系。方法 采用流行病调查用抑郁自评量表（center for epidemiologic studies depression scale,CES-D）和世界卫生组织生存质量简表（world health organization's quality of life questionnaire-brief version,WHOQOL-bref）对广东省麻风病患者进行抑郁程度和生存质量调查,用多重线性回归方法分析抑郁程度得分与生存质量各维度间的关系和强度。结果 共263名麻风病患者完成了调查,其中男性177名（67.3%）,女性86名（32.7%）。131名（49.8%）调查对象有抑郁症状,有抑郁症状调查对象生存质量各维度评分均低于无抑郁症状对象,差异均具有统计学意义（均有P<0.05）。在各维度中,生存质量总评、生理健康、心理健康、社会关系和环境因素得分与抑郁症状的回归系数分别为-0.340、-0.322、-0.644、-0.424和0.244,除生存质量总评外,其他回归系数差异均具有统计学意义（均有P<0.05）。结论 广东省麻风病患者的抑郁症状发生率高,生存质量得分与CES-D得分有关联,应采用多层次的干预措施防止麻风病患者抑郁症的发生。     

Chronical illness and maternity: life conditions,quality of life and coping in women with multiple sclerosis

Aim Research on life circumstances, quality of life (QOL) and coping behavior in mothers with multiple sclerosis (MS). Method Anonymous standardised questionnaire sent to 7050 members of a section of the German MS Association (response rate 44.8%). Comparison of 482 mothers with MS (children aged < 18 years) with 607 childless women with MS. Results No statistically significant differences concerning age, MS course, complaints or number of exacerbations. Mothers with MS more frequently had a relationship, a higher monthly net income, were less employed, EDSS-score was lower and disease duration shorter. In QOL mothers with MS showed better social aspects even after multivariate adjustment for sociodemographic and disease-related variables. Influencing parameters on the social area of QOL were employment status, age, monthly household net income and disability. In their coping behavior mothers tended more to “religiosity/search for sense in life”. Conclusion There were several differences in sociodemographic data, QOL and coping behavior factors between mothers and childless women with MS. However, if motherhood itself has an influence on QOL and coping can not be derived from our data but there are some hints that motherhood seems to be no potential problem for living with the disease. Further research upon this topic is needed.     

Quality of life in multiple sclerosis patients with urinary disorders: Discriminative validation of the english version of qualiveen

The Qualiveen questionnaire is a urinary disorder (UD)-specific health related quality of life (HRQL) instrument. Recent data suggests Qualiveen has excellent validity in French-speaking multiple sclerosis (MS) patients. Aim: To assess discriminative measurement properties of the English version of Qualiveen. Methods>: Fifty-five Canadian MS out-patients completed a set of questionnaires, including Qualiveen, MSQOL-54, a MS-specific HRQL questionnaire, urinary function assessments and the Expanded Disability Status Scale (EDSS) twice at an interval of two to four weeks. Results: Qualiveen proved internally consistent (Cronbachs alpha coefficients 0.73 to 0.90 for the four Qualiveen domains) and test–retest reliable (intraclass correlation coefficients 0.88 to 0.94). Consistent with a priori predictions, we found a strong association between overall Qualiveen score and the degree of incontinence (0.63), a moderate correlation with the type of urinary symptoms (0.49), a weak association with manner of voiding (0.28) and weak or absent correlations with MSQOL-54 domains, EDSS bladder/bowel and global EDSS. Predictions proved generally accurate (weighted = 0.65). Conclusion: The internal consistency, test–retest reliability and cross-sectional construct validity of the English version of Qualiveen are excellent, and similar to the original French version. Further studies should explore Qualiveens longitudinal validity and responsiveness.     

Validation and cross-cultural adaptation of the disease-specific questionnaire MSQOL-54 in Serbian multiple sclerosis patients sample

The objective of this study was to translate the MSQOL-54 into Serbian, and investigate the validity of the translated and cross-culturally adapted inventory in Serbian MS patients. The questionnaire was validated in 200 consecutive MS patients seen between February and September 2005 at the Institute of Neurology, Clinical center of Serbia, in Belgrade. The translation followed an internationally accepted methodology. Associations between age, gender, education, marital and employment status, disease course, the expanded disability status scale (EDSS) score, and the MSQOL-54 physical and mental health composite scores were determined. Patients’ participation in the assessment was satisfactory and all scales fulfilled the usual psychometric standards. Highly significant inverse relationship was found between both composite scores and clinical characteristics of the disease, the EDSS and the disease course. Additionally, both composite scores, correlated significantly with patients’ age, education and employment status. The Serbian-translated version of this questionnaire may be useful as clinical outcome measures in patients with MS.     

A health-related quality of life measure for multiple sclerosis

The need for measures of health-related quality of life (HRQOL) for clinical effectiveness research and for quality of care research, particularly for chronic diseases, is increasingly recognized. We assessed a measure of HRQOL for people with multiple sclerosis, a chronic neurological condition. We used the RAND 36-Item Health Survey 1.0 (aka SF-36) as a generic core measure, to enable comparisons of HRQOL of patients with multiple sclerosis to those of other patient populations and to the general population. To enhance comparisons within groups of multiple sclerosis patients, these items were supplemented with 18 additional items in the areas of health distress (four items), sexual function (four items), satisfaction with sexual function (one item), overall quality of life (two items), cognitive function (four items), energy (one item), pain (one item), and social function (one item). The final measure, the Multiple Sclerosis Quality of Life (MSQOL)-54 instrument, contains 52 items distributed into 12 scales, and two single items. Internal consistency reliability estimates for the 12 multi-item scales ranged from 0.75 to 0.96 in a sample of 179 patients with multiple sclerosis. Test-retest intraclass correlation coefficients ranged from 0.66 to 0.96. Exploratory factor analysis confirmed two underlying dimensions of physical health and mental health. Construct validity was supported by significant associates between MSQOL-54 scales and degree of multiple sclerosis symptom severity in the prior year, level of ambulation, employment limitations due to health, admission to hospital in the previous year, and depressive symptoms.This research was supported by a grant from the Health Services Research Grant Program of the National Multiple Sclerosis Society. The National Institutes of Neurological Disorders and Stroke provided support for Dr Vickrey through a Clinical Investigator Development Award (K08 NS01669-02). Opinions are those of the authors and do not necessarily reflect the views of the sponsoring institutions, RAND, or the University of California, Los Angeles.     

Costs and quality of life in multiple sclerosis

We performed a cross-sectional, “bottom-up” observational study of resource use, costs, and quality of life in patients with multiple sclerosis (MS) in Germany. Six centers participated in the study. Patients were asked to complete a questionnaire, and a total of 737 patients returned it (response rate 66%). The questionnaire provided information on all resource consumption, medical, and nonmedical, work absence, informal care related to their MS, and quality of life (EuroQol). Simultaneously, medical charts were also abstracted for a subsample of 202 patients for comparison between answers in the questionnaires and registered data. Levels of disability were assessed using the Expanded Disability Status Scale. The mean age of the cohort was 41.9±14.1 years (disease onset 33.4), mean EDSS score 4.4 (range 1.0–9.5), and mean utility measured by EQ-5D 0.552±0.331). Mean total cost per patient and year was 65,400 DM, adjusted for use of interferons, which was higher in this sample than the current average use in Germany. When this cost is extrapolated to an estimated patient population of 120,000, total costs to society are estimated at 7.85 billion DM. Direct costs represented 57.5%, informal care accounted for 12.1% and indirect costs amounted to 42.5%. Public payers pay for an estimated 24,800 DM per patient or 38% of total costs. All types of costs (direct, informal care, indirect) increased with increasing disability, while utilities decreased.     

People with multiple sclerosis report significantly worse symptoms and health related quality of life than the US general population as measured by PROMIS and NeuroQoL outcome measures

Background

Individuals with multiple sclerosis (MS) report fatigue, pain, depression, cognitive difficulties, and other symptoms. It is often difficult to compare symptoms across studies and populations because scales used to measure individual symptoms or quality of life indicators (QOLI) use different metrics and often do not provide norms. PROMIS and Neuro-QOL measures, developed with modern psychometric methods, use a common metric and provide population norms.

General vaccination willingness and current vaccination status in relation to clinical and psychological variables in patients with multiple sclerosis

BackgroundInfections can have a significant impact on morbidity and mortality in multiple sclerosis (MS) patients. Therefore, vaccinations are of immense importance. If vaccination willingness is to be increased, possible influencing factors should be identified. The aim of the present study was to investigate the status of active immunisation in MS patients in association with sociodemographic, clinical-neurological, psychopathological and personality variables using the NEO-Five Factor Inventory, the Temperament and Character Inventory-Revised and the Hospital Anxiety and Depression Scale.MethodFour hundred and four MS patients from two German neurological hospitals were examined for their vaccination attitudes, in detail, the general willingness to vaccinate and the current vaccination status of mumps, measles and rubella (MMR) as well as tetanus and influenza. We also looked at the current level of disability in relation to the current vaccination status, as well as possible associated personality and psychopathological variables.ResultsPatients with a complete MMR vaccination status were significantly younger and those with a complete influenza vaccination status were significantly older than those with related incomplete vaccination status. Tetanus vaccination status completeness did not differ depending on age and did not show substantial association with personality scores. However, influenza vaccination completeness was associated with differences in personality and psychopathological variables; extraversion, openness, novelty seeking, harm avoidance and anxiety. A reported general vaccination willingness was significantly correlated with the current completeness of tetanus and influenza vaccinations. Novelty seeking, persistence, extraversion, agreeableness, conscientiousness and neuroticism were found associated with an increased vaccination willingness. Anxiety and depression were not related to general vaccination willingness.ConclusionsNo specific personality trait could be defined on its own in relation to general vaccination willingness or complete vaccination status. Younger patients should be made more aware of influenza vaccination. Reasons for rather low vaccination rates need to be further investigated.     

Factors associated with poor sleep quality in patients with multiple sclerosis differ by disease duration

BackgroundSleep disturbance is a common symptom of multiple sclerosis (MS) and knowledge about factors that contribute to poor sleep quality is scarce.ObjectiveThe aim was to explore the differences in the prevalence and determinants of poor sleep quality in a sample of patients with MS with disease duration ≤5 years and >5 years.MethodsWe collected data from 152 consecutive patients with MS; 66 patients (78% women, averaged 37.35 ± 10.1 years) were in the group with disease duration ≤5 years and 86 patients (73.3% women, averaged 42.10 ± 9.4 years) in the group with disease duration >5 years. Patients filled out the Pittsburgh Sleep Quality Index, the Hospital Anxiety and Depression Scale, the Multidimensional Fatigue Inventory, one item of the Incapacity Status Scale regarding bladder problems and one item of the Short Form-36 regarding pain. Multiple linear regression was used to analyze the relationship between the study variables.ResultsThe prevalence of poor sleep is significantly higher in patients with longer disease duration (34.8 vs. 51.2%). Anxiety, reduced motivation and mental fatigue (all p < 0.05) were associated with poor sleep quality in patients with disease duration ≤5 years, whereas pain (p < 0.01), depression and mental fatigue (both p < 0.05) were in patients with disease duration >5 years.ConclusionSleep problems are present in patients with MS with both short and long disease duration, but these problems are associated with different factors. These should be recognized and managed in addition to the treatment of sleep disorders.     

艾滋病患者生存质量心理护理研究进展

提高艾滋病患者的生存质量,不仅需要积极有效的药物治疗,还需要必要的心理护理。此文系统介绍了艾滋病患者生存质量的主要影响因素,包括自我效能感、应对方式、社会支持、健康信念模式和心理控制源;同时,探讨了目前应用较为广泛的心理护理措施,包括认知疗法、音乐疗法、团体心理护理以及其他综合性干预措施的最新研究进展,以此有效改善患者的负性情绪,提高患者免疫功能。     

Validation of the quality of life in depression scale in a population of adult depressive patients aged 60 and above

The aim of this study is to evaluate the validity of the Dutch version of the Quality of Life in Depression Scale (QLDS) in a population of depressive patients aged 60 years and over, who were seen on an outpatient basis by psychiatrists in the Flemish region of Belgium. A sample of severely depressive patient was followed during an height-week medical treatment. During this period, each patient was evaluated four times with the Hamilton Rating Scale for Depression and with the QLDS. We observed that the QLDS was very sensitive to the failing of the quality of life in depressive states. The QLDS was also a very good measure of change during the improvement of depressives states. Furthermore, the scale appears to be very homogeneous across the depressive states range. The results are very encouraging, and constitute strong corroboration of the construct validity of the scale.     

The role of fatigue in the associations between exercise and psychological health in Multiple Sclerosis: Direct and indirect effects

This research aims to investigate the direct and indirect effects of physical training on psychological health in a sample of individuals with Multiple Sclerosis (MS). Thirty-five women affected by relapsing-remitting MS, with a mean age of (40 ± 5) years and an Expanded Disability Status Scale (EDSS) score ranging between 0 and 3, participated in the study. After baseline tests, in accordance with pairing techniques, participants were assigned to an experimental (EG) and a control group (CG). The EG attended a 12-week combined aerobic and strength program. Those in the EG and the CG were homogeneous at baseline and were treated similarly except for the intervention. Participants of both groups were tested before and after the intervention with the following instruments: 1. Modified Fatigue Impact Scale (MFIS); 2. Beck Depression Inventory scale (BDI); 3. Multiple Sclerosis Quality of life–54 (MSQOL-54). Data was analyzed with non-parametric tests for unpaired samples, linear regression and mediation analysis. The results showed: (a) the benefits of physical training on the perception of fatigue, depression, social activity and Quality of Life (QoL) in the EG; (b) the role of fatigue as a mediator of the relationship between participation in physical training and depression, social activity and QoL. Findings suggested the effectiveness of a combined aerobic and strength training for the improvement of psychological aspects in women affected by MS and the mediation role of fatigue in such a relationship.     

A comparison of responsiveness indices in multiple sclerosis patients

Responsiveness was measured in a number of health-related quality of life (HRQoL) instruments among which two generic (SF-36 and COOP/WONCA Charts) and one disease-specific instrument, the Disability & Impact Profile (DIP). Subjects were 162 multiple sclerosis patients. The following responsiveness indices were used: effect size, standardised response mean and smallest real difference (SRD). The latter measure gives an indication of the magnitude of real change, i.e. change not attributable to noise or error and can thus be used for the interpretation of change scores in clinical practice whereby change scores larger than the SRD value indicate real change. It is assumed that low SRD values indicate high responsiveness. The results confirmed our expectation that the effect size and standardised response mean are probably less suitable for use in slowly progressive diseases, since they use the average change as the numerator. Therefore, the article focused on the SRD. Compared to scales, items measured on a visual analogue scale show high SRD values. The DIP scales generally show lower SRD values compared to scales of other questionnaires. The SRD seems to be a promising new measure to study responsiveness. More research into the interpretation of this measure is necessary.     

Coenzyme Q10 as a treatment for fatigue and depression in multiple sclerosis patients: A double blind randomized clinical trial

Objectives: Multiple sclerosis (MS) is the chronic inflammatory and demyelinating disorder of central nervous system which is accompanied with disability and negative life style changes such as fatigue and depression. The aim of this study is to investigate the effect of coenzyme Q10 (CoQ10) supplementation on fatigue and depression in patients with MS.

Methods: We performed a randomized, double-blinded, placebo-controlled trial to determine the effect of CoQ10 supplement (500?mg/day) vs. placebo for 12?weeks. Fatigue symptoms were quantified by means of fatigue severity scale (FSS) and the Beck depression inventory (BDI) was used to assess depressive symptoms.

Results: A significant decrease of FSS was observed in CoQ10 group during the intervention (P?=?0.001) and significant increase of FSS change was observed within placebo group (P?=?0.001). Repeated measure analysis of variance showed a significant time-by-treatment interaction for FSS (baseline 41.5?±?15.6 vs. endpoint 45?±?13.6; F_1,45?=?55.23, P?<?0.001, η²?=?0.56) and BDI (baseline 17.8?±?12.2 vs. endpoint 20.4?±?11.4; F_1,45?=?40.3, P?<?0.001, η²?=?0.48), indicating significant decrease of FSS and BDI in CoQ10 group compared to placebo group.

Conclusion: Our study suggests that CoQ10 supplementation (500?mg/day) can improve fatigue and depression in patients with multiple sclerosis.     

Quality of life in patients with multiple sclerosis: A study with patients and caregivers

BackgroundMultiple Sclerosis (MS) is a chronic disease that affects patients' quality of life and requires long term demanding care.ObjectiveThe purpose of this study was to examine the relationships between patients and caregivers' variables regarding patients' quality of life, the moderating role of marital satisfaction between patients' psychological morbidity and quality of life, and the contribution of patient and caregiver variables towards patients’ quality of life.MethodsThe sample included 100 patients with MS and 72 caregivers. Participants’ variables were assessed using self-report measures. The design of this quantitative study was transversal.ResultsMarital satisfaction moderated the relationship between patients' anxiety and mental quality of life. Patients' perception of illness identity and consequences together with caregivers' depressive symptoms were mediators between patients' depression and quality of life. Burden also played a mediator role in the relationship between patients’ depressive symptoms, disability level, and physical quality of life.ConclusionTherefore, intervention in multiple sclerosis should be delivered in a dyadic context.     

Quality of life and psychological well-being in the early stages of multiple sclerosis (MS): Importance of adopting a biopsychosocial model

Background

Reductions in quality of life (QOL) exist among individuals with multiple sclerosis (MS).

社会支持和应对方式对肌萎缩侧索硬化患者生活质量的影响

目的探讨社会支持和应对方式对肌萎缩侧索硬化(ALS)患者生活质量的影响。方法选取2015年2月~2016年2月在本院神经内科就诊、住院的ALS患者100例,进行一般资料、社会支持评定量表(SSRS)、医学应对问卷和生活质量问卷调查,并对调查结果进行相关性分析。结果 ALS患者社会支持总分≥50分者占43%,30~49分者占14%,社会支持总分<30分者占43%,社会支持高分组在生活质量量表8个维度的得分均高于低分组,差异具有统计学意义(P<0.05)。患者多采取回避和屈服这两种应对方式。结论帮助患者领悟社会支持,建立良好的应对方式有利于减少其负性心理情绪对健康的影响,提高患者的生活质量,减少并发症。