肠易激综合征患者生活质量对照研究

目的了解肠易激综合征(IBS)患者生活质量状况.方法应用SF-36健康普适量表对25例符合罗马Ⅱ诊断标准的IBS患者及性别、年龄相匹配的健康对照者进行调查,作生活质量比较研究.结果 IBS患者除了生理功能(PF)外,其它7个维度的生活质量平均积分均比健康对照组低(生理职能P＜0.05,余6个维度均P＜0.01);IBS患者生活质量下降和肠道症状并不相关.结论 IBS患者生活质量普遍低下,但并非肠道症状直接影响所致.     

Design of an Individualised Measure of the Impact of Macular Disease on Quality of Life (the MacDQoL)

The aim of this study was to design an individualised questionnaire to measure the impact of macular disease (MD) on quality of life (QoL). Principles underlying the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) interview method and the Audit of Diabetes-Dependent Quality of Life (ADDQoL) diabetes-specific questionnaire influenced the Macular Disease-Dependent Quality of Life (MacDQoL) design. The MacDQoL specifies domains of QoL that were selected using focus group methodology and refined following a postal pilot study of members of the UK Macular Disease Society (MDS). Respondents rated the impact of MD on each domain and the importance of each domain to their QoL. Mean domain scores from 69 respondents indicated that MD had a negative impact on all the domains of QoL investigated in the measure. There was preliminary evidence of good internal consistency reliability (Cronbach's alpha = 0.93, n = 37). Respondents who were registered partially sighted (P/S) or blind reported poorer QoL than those who were not registered (Kruskal-Wallis: chi2 = 14.03, n = 62, p < 0.001). This evidence suggests that the measure will be sensitive to subgroup differences. The instrument has been further refined following the pilot study. The MacDQoL is being used in clinical trials and psychometric evaluation of the measure will be carried out using trial data. The measure is available for clinical use and has been linguistically validated in 15 other languages.     

Bipolar Disorder and Quality of Life: A Patient-Centered Perspective

Objectives: Several quantitative studies have now examined the relationship between quality of life (QoL) and bipolar disorder (BD) and have generally indicated that QoL is markedly impaired in patients with BD. However, little qualitative research has been conducted to better describe patients’ own experiences of how BD impacts upon life quality. We report here on a series of in-depth qualitative interviews we conducted as part of the item generation phase for a disease-specific scale to assess QoL in BD. Methods: We conducted 52 interviews with people with BD (n=35), their caregivers (n=5) and healthcare professionals (n=12) identified by both convenience and purposive sampling. Clinical characteristics of the affected sample ranged widely between individuals who had been clinically stable for several years through to inpatients who were recovering from a severe episode of depression or mania. Interviews were tape recorded, transcribed verbatim and analyzed thematically. Results: Although several interwoven themes emerged from the data, we chose to focus on 6 for the purposes of this paper: routine, independence, stigma and disclosure, identity, social support and spirituality. When asked to prioritize the areas they thought were most important in determining QoL, the majority of participants ranked social support as most important, followed by mental health. Conclusions: Findings indicate that there is a complex, multifaceted relationship between BD and QoL. Most of the affected individuals we interviewed reported that BD had a profoundly negative effect upon their life quality, particularly in the areas of education, vocation, financial functioning, and social and intimate relationships. However, some people also reported that having BD opened up new doors of opportunity.     

Changes in Parenteral Nutrition Requirements and BMI in Patients with Parenteral Nutrition-Dependent Short Bowel Syndrome after Stopping Teduglutide—9 Years of Follow-Up

Teduglutide (TED) is widely used in patients with short-bowel-syndrome-associated intestinal failure (SBS-IF) to enhance intestinal adaptation and reduce the need for parenteral support (PS). There are limited data on the effects of discontinuing TED. In this study, we describe the changes in parenteral nutrition (PN) requirements and body mass index (BMI) in a 9-year follow-up of patients receiving home parenteral nutrition after discontinuation of the TED treatment. We performed a retrospective analysis of changes in weekly PN orders and BMI in all patients with PN-dependent SBS from two Polish home parenteral nutrition (HPN) centers who received teduglutide between 2009 and 2013 and still required HPN 9 years after discontinuation of the TED treatment. Data included in the analysis were collected prospectively at mandatory visits to the HPN centers at 12, 24, 60, 84, and 108 months after drug discontinuation and compared with values before and after TED treatment. Weekly PN volume values varied significantly between all of the above time points from baseline to 9 years after TED discontinuation (χ² = 34.860, p < 0.001). After an initial increase within the first year after treatment discontinuation (not statistically significant), the PN volume requirements remained stable for 4 years and increased 5–9 years after treatment discontinuation. The rate of patients requiring an increase in PN volume was 84.62% at 60 and 84 months and 92.30% at 108 months. At 9 years after cessation of the TED treatment, 53.85% of the study group required a 21.21% increase in PN volume compared with values before treatment. The need for PN volume in patients with PN-dependent SBS who discontinued the TED treatment increased within the first year and 4–5 years after treatment cessation, and in some cases might even exceed pretreatment values after 9 years.     

The Korean Version of the Multicultural Quality of Life Index (MQLI-Kr): Development and Validation

Our research team of multilingual and multicultural members designed comprehensive, yet efficient, culture-informed, and self-rated Multicultural Quality of Life Indexes for both English-speaking individuals and for growing immigrant groups in the United States. A Korean version of the Multicultural Quality of Life Index (MQLI-Kr) was developed as part of this multilingual project. The team tested the MQLI-Kr on 130 Koreans (100 psychiatric patients and 30 professionals). MQLI-Kr was quite efficient and easy to use. The internal consistency attained a Cronbach’s α of 0.97 for the combined sample. A factor analysis yielded one single factor, which accounted for 81.5% of the items’ variance. The test–retest reliability correlation coefficient of the MQLI-Kr was 0.85. Significant differences in the mean MQLI-Kr scores were observed between the patients’ group and the professionals’ group (p < 0.001). Thus the results of this study showed high feasibility, internal consistency, reliability, and discriminant validity for the MQLI-Kr.     

Determinants of the quality of life (QoL) in patients with an implantable cardioverter/defibrillator (ICD)

OBJECTIVES: In high-risk cardiac patients the treatment of life-threatening arrhythmias with an implantable cardioverter/defibrillator (ICD) extends survival. Other important outcome criteria are treatment side effects especially the quality of life (QoL). Knowledge of the variables that influence QoL is important for therapy decisions in ICD patients. METHODS: Ninety-three ICD patients evaluated their QoL by the SF-36 after 1-6 years of ICD implantation. The QoL was studied in relation to cardiac function (severity of heart failure, ejection fraction), treatment course (number of shocks), coping styles and psychiatric syndromes. RESULTS: About 30% of the somatic QoL (physical role function, pain) is determined by the patients' somatization tendency, i.e. the extent to which they suffer from non-specific symptoms (sweating, weakness in the legs, nausea). The severity of heart failure had little influence on the physical QoL. The emotional QoL is primarily determined by phobic anxiety of ICD patients. CONCLUSIONS: Psychiatric symptoms are the most important factors to determine the QoL in ICD patients. Behavioural treatment procedures of phobic anxieties and somatization could improve QoL in ICD patients.     

特异性生命质量量表的制定及考评

随着医学科学的发展,生命质量评价的应用日趋广泛,对其方法的研究也越显重要。文章主要讨论生命质量评价方法中的一种常用方法:特异性生命质量量表的制定步骤及考评方法。     

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.     

Development of the Korean versions of WHO Quality of Life scale and WHOQOL-BREF

The purpose of this study was to develop the Korean version of World Health Organization Quality of Life study assessment instrument (WHOQOL) and WHOQOL-BREF, an abbreviated version of WHOQOL and to identify contributing factors in the quality of life of Koreans. The WHOQOL and WHOQOL-BREF were translated into colloquial Korean according to instructions of the WHOQOL study group. Then the Korean questionnaire was applied to 538 subjects, composed of 171 medical patients and 367 healthy subjects who volunteered to rate the scale. Finally, 486 subjects completed the rating. Collected data were analyzed statistically. The Korean version of WHOQOL and WHOQOL-BREF domain scores demonstrated good test–retest reliability, internal consistency, criterion validity, content validity and discriminant validity. The physical, psychological, social and environmental domains made a significant contribution to explaining the variance in the quality of life while the independence and spiritual domains made a lesser contribution. The domain scores produced by the WHOQOL-BREF correlated highly with the WHOQOL. The physical health domain contributed most in overall quality of life, while the social domain made the least contribution. These results suggest that the Korean version of WHOQOL and WHOQOL-BREF are valid and reliable in the assessment of quality of life and that physical domain is contributing most and social and spiritual factors are contributing least to the quality of life in Koreans.     

Coping Strategies and Quality of Life of Adolescents with Inflammatory Bowel Disease

OBJECTIVE: This study aims to compare generic coping styles adopted by adolescents suffering from inflammatory bowel disease (IBD) to styles used by their healthy peers, and to assess the association between coping styles and health-related quality of life (HRQoL). METHODS: A generic coping style instrument, a disease-related coping style instrument and a disease-specific HRQoL instrument were administered to 65 adolescents (12-18 years old) with IBD. Normative data from the generic instrument were available. Mean domain scores of IBD patients were compared to normative scores. Multivariate linear regression analyses were performed on models with HRQoL domains as dependent, and preselected demographic and disease-related characteristics and coping styles as independent variables. RESULTS: Adolescents with IBD use more avoidant coping styles than their healthy peers. HRQoL is associated with disease-related coping styles and with disease activity. More use of a predictive coping style (having positive expectations about the disease) and less use of a depressive reaction pattern are associated with better HRQoL in three out of six HRQoL domains. CONCLUSION: This study suggests an association between coping styles and HRQoL.     

Measuring quality of life in children with inflammatory bowel disease: The Impact-II (NL)

Inflammatory bowel disease (IBD) is a chronic debilitating disorder. Measures of quality of life are only available for adult patient populations. We developed a new disease-specific health-related quality of life instrument in Dutch for pediatric patients with IBD, called Impact-II (NL). We translated and strongly modified the original (Canadian) Impact questionnaire. It comprises 35 items in six domains. Eighty-three children (66%rpar; completed the questionnaire, 39 children were assessed twice. Disease symptoms were recorded and disease course severity assessed through chart review. Summated disease activity scores and disease course severity scores were dichotomized into two categories. Reliability coefficients were good for five out of six domains (Cronbach's ranged from 0.57 to 0.86) and measures of test–retest stability in clinically stable patients were good for all domains (intra-class correlation coefficients ranged from 0.67 to 0.91). The instrument showed good discriminant validity between symptom groups and disease course severity on all domains. Convergent validity with a validated generic instrument [TNO-AZL Children's Quality of life questionnaire (Tacqol)] showed satisfactory coefficients. In conclusion, the developed questionnaire shows good psychometric properties. Test–retest stability and responsiveness to change should be further assessed in larger patient samples. Cross-cultural translation and validation procedures into other languages are being conducted to enable international use of Impact-II.     

Development and initial validation of a new preference-based disease-specific health-related quality of life instrument for erectile function

Health-related quality of life instruments may be generic or specific. In general, only generic instruments use preference-based scoring. We report on a novel approach to combine in one instrument the strengths of the specific approach, greater disease relevance and responsiveness, with those of preference-based scoring, generalizability through utilities. OBJECTIVES: The primary objective was to develop a self-administered, preference-based instrument capable of measuring utilities in the disease-specific context of erectile dysfunction (ED). METHODS: Content derivation/validation began with a literature review. Eight attributes (domains) were selected to provide clinical experts structure for focus group discussion. Four levels describing a continuum of dysfunction-function were defined for each domain. Each domain, including functional levels, was reviewed and modified until consensus was achieved regarding content. This content was then integrated into a preference based scoring instrument using two visual analogue scales (VAS) with which patients rated three 'marker' health states (representing mild, moderate and severe ED), their self-state and a previously validated external marker state. The instrument was pilot tested, and implemented in a clinical trial. Initial validation analyses have been performed. RESULTS: A self-administered, preference-based, VAS instrument was developed for use in the ED population, and the instrument was feasible to complete, was reliable beyond the threshold of acceptability established a priori and demonstrated good validity. Evidence of these properties accumulates over time and this study begins that process with this instrument. Responsiveness is being assessed in the context of a clinical trial.     

肠易激综合征患者生命质量测定量表研制及评价

目的 研制与评价慢性病患者生命质量测定量表体系之肠易激综合征量表(QLICD-IBS).方法 采用程序化决策方式,结合中国人群背景,进行量表开发和研制;对99例肠易激综合征患者住院治疗前后的生命质量进行测评,评价量表效度、信度、反应度.结果 肠易激综合征患者生命质量测定量表(QLICD-IBS)包括慢性病共性模块30个条目和肠易激综合征特异模块15个条目,量表各领域及维度的内部一致性信度(α)基本>0.6以上、重测信度(r)>0.9;各条目与所属维度及其领域的相关均大于与其他维度及领域的相关,相关系数(r)值大多>0.6;量表能够反映出患者治疗前后生命质量的变化.结论 量表(QLICD-IBS)具有较好的信度、效度、反应度和临床可行性,可作为适合中国人群的生命质量测评工具.     

良性前列腺增生症患者生活质量量表的编制与应用--量表的编制及条目筛选方法

目的 编制适合我国良性前列腺增生症患者的生活质量量表。方法 按结构化决策方法编制量表，条目池经专家认可，对256名患者进行调查后，采用t检验法、相关分析法、因子分析法等六种方法联合进行条目筛选，由保留条目组建量表测试版。结果 编制了含74条目的良性前列腺增生症患者的生活质量量表测试版。其中，疾病维度27条目，生理维度16条目，社会维度13条目，心理维度10条目，满意度维度8条目。结论 良性前列腺增生症患者生活质量量表测试版有较好的内容效度，其所含条目有良好的敏感性、独立性和代表性。     

Quality of Life (QoL) in severely disabled multiple sclerosis patients: Comparison of three QoL measures using multidimensional scaling

This study reports a comparison of three quality of life (QoL) measures completed by patients with advanced multiple sclerosis. Multidimensional scaling analysis explored the structure of relationships amongst a general health measure (the Short Form 36 – SF 36) and two person-centred measures (the Patient Generated Index – PGI; and the Schedule for the Evaluation of Individual Quality of Life – Direct Weighting version – SEIQoL-DW). Results showed distinct differences both between the two person-centred measures, and when compared against the general health measure, reflecting the different conceptual bases of these measures. The findings suggest that PGI scores closely relate to measures of physical functioning, whereas SEIQoL-DW scores relate more closely to feelings of health and vitality. The implications of these results for selection and development of appropriate QoL scales for the target population are discussed. This revised version was published online in June 2006 with corrections to the Cover Date.     

The EORTC breast cancer-specific quality of life questionnaire (EORTC QLQ-BR23): Translation and validation study of the Iranian version

The objective of this study was to test the reliability and validity of the Iranian version of the European Organization for Research and Treatment of Cancer (EORTC) Breast Cancer-Specific Quality of Life Questionnaire (QLQ-BR23). The English-language version of the questionnaire was translated into Persian (Iranian language) and its final form was approved by the EORTC Study Group on Quality of Life and then it was used in this study. The questionnaire was administered at two points in time to a consecutive sample of 168 newly diagnosed breast cancer patients and almost all of them (99%) found the questions easy to understand and acceptable. Cronbach's coefficient for multi-item scales (to test reliability) ranged from 0.63 to 0.95 at baseline and from 0.75 to 0.92 at follow-up administration of the questionnaire. Validity analysis was performed using known-groups' comparison analysis. The results showed that all functional and symptom scales discriminated between sub-groups of patients differing in clinical status as defined by their performance status and disease stage. In addition, all functional and symptoms scales detected change over time, as a function of changes in patients' performance status. In general, the findings of this study indicated that the Iranian version of the EORTC QLQ-BR23 is a reliable and valid supplementary measure of the quality of life in breast cancer patients and can be used in clinical trials and studies of outcome research in oncology.     

Quality of Life in the General Norwegian Population, Measured by the Quality of Life Scale (QOLS-N)

The main aim of the present study was to derive norms or reference values from the general Norwegian population for the Norwegian version of the Quality of Life Scale (QOLS-N). In addition, associations between socio-demographic and health variables on the level of quality of life were examined. The sample consisted of 1893 subjects from a total of 4000 randomly selected Norwegian citizens representative of the entire Norwegian population, aged 19-81. The subjects received a mailed questionnaire containing the QOLS-N. Results show that the mean quality of life score was 84.1 (SD 12.5). Women reported a higher quality of life than men. People with higher levels of education reported a higher quality of life. Those who were married or cohabitating reported the highest quality of life and those who were unemployed reported a lower quality of life than those who worked. In addition, people reporting long-term diseases or health problems scored significantly lower on quality of life. These results could serve as reference values for the level of quality of life, as measured by the QOLS-N in the Norwegian population.