AQ20问卷在慢阻肺社区干预评价中的应用

目的：评价社区干预对慢阻肺（COPD）患者健康相关生命质量的影响。方法：采用慢阻肺健康相关生命质量问卷AQ20问卷，并用因子分析法，将问卷划分为四个维度，比较社区干预前后生命质量各维度的变化。结果：患者干预前后生命质量有所提高，尤以疾病症状改善明显。结论：AQ20问卷适用于我国慢阻肺患者的生命质量评价，本次社区干预对改善患者的生命质量产生了初步效果。     

基于EQ-5D-5L量表的甲状腺结节/肿瘤患者生命质量及其影响因素分析*

目的：评价甲状腺结节/肿瘤患者生命质量现状并分析其影响因素，为改善甲状腺结节/肿瘤患者的生命质量提供参考建议。方法：使用欧洲五维健康 （EQ-5D-5L） 量表并采用线上调查的形式对符合纳入排除标准的甲状腺结节/肿瘤患者进行调查，采用单因素方差分析和多水平线性回归分析影响因素。结果：甲状腺结节/肿瘤患者健康效用值均值为 （0.708± 0.298），健康状况自评问卷与视觉模拟标尺评分 （EQ Visual analogue scale，EQ-VAS） 均值为 （65.45±27.82） 分，性别、年龄、户籍类型、婚姻状态、家庭平均年收入、颈部暴露史、甲状腺癌家族史、结节/肿瘤性质对甲状腺结节/肿瘤患者健康效用值和EQ-VAS量表的影响，差异具有统计学意义 （P＜0.05）。结论：甲状腺结节/肿瘤患者生命质量偏低，应综合考虑影响生命质量的各种因素，提升患者生理机能和心理弹性，改善甲状腺结节/肿瘤患者的生命质量。     

医学生生命质量评价研究回顾与展望

生命质量（quality of life,QOL）又称为生存质量或生活质量,是一种用于评价人体健康水平的指标体系。随着生命质量及健康相关生命质量的概念被越来越普遍的接受与应用,各个群体及各类人群的健康相关生命质量都受到了关注。对医学生生命质量及健康相关生命质量的评价不仅有利于了解医学生群体总体的健康体验与健康状况,了解其相关影响因素,还能因此采取相应的措施来提高和改善医学生的健康体验与健康状况,对医学教育政策的研究与制定以及医学课程改革都有重要的指导意义。本文通过检索并筛选医学生健康生命质量评价的相关文献,来分析与介绍相关的评价方法以及研究结果,对影响医学生健康相关生命质量的因素进行总结分析,从而为进一步的研究提供参考。     

生命质量问题研究进展

本介绍了近年来国内外关于生命质量的问题研究的进展，尤其是老年人生命质量评价和健康相关生命质量评价。建立恰当的评价工具仍然是目前生命质量研究的中心。其中Ｆｅｒｒｅｌｌ１９９５年提出的身体，心理，社会和精神四维评价模式受到广泛关注。     

健康相关生命质量的研究进展

健康相关生命质量是对生理和心理健康的综合评价，在临床治疗、药物研究、预防保健、卫生决策和卫生经济评价等方面都发挥着不可取代的作用。本文从健康相关生命质量的内涵、研究概况、测量工具和影响因素等方面进行综述，为今后更好的开展健康生命质量研究提供参考和借鉴。     

健康相关生命质量评价研究与应用现状

健康相关生命质量(HRQOL)是近年来发展起来的一种全新的医学概念,在国外已得到广泛的应用。着重介绍了健康相关生命质量的概况、研究与应用进展,阐述了健康相关生命质量的研究背景,以及新近发展的有关健康相关生命质量的观点和测评工具。对健康相关生命质量评价研究的前景和启示作了相关探讨。     

健康相关生命质量评价研究与应用现状

健康相关生命质量(HRQOL)是近年来发展起来的一种全新的医学概念,在国外已得到广泛的应用.着重介绍了健康相关生命质量的概况、研究与应用进展,阐述了健康相关生命质量的研究背景,以及新近发展的有关健康相关生命质量的观点和测评工具.对健康相关生命质量评价研究的前景和启示作了相关探讨.     

生命质量—健康评价的发展方向

生命质量为健康评价提供了一种全面的手段，对生命质量的定义，研究的历史和现状，以及生命质量在健康评价中的应用进展做了综述，展示了生命质量在健康评价中的应用前景。     

慢性阻塞性肺病患者生命质量测评的研究近况

生命质量是英文Quality of L ife(QOL)的中文译文。有的学者又译为生存质量、生活质量等。评价患者健康相关生活质量(HRQL)的量表称为健康相关生活量表。目前,生命质量研究已如日中天,并被广泛用于癌及慢性病临床治疗方法筛选、预防性干预措施效果评价等方面。慢性阻塞性肺疾病(COPD)由于疾病长期迁延不愈,不仅影响患者躯体功能,而且引起心理情绪障碍和社会角色改变。因此仅用生物学指标不能全面反映COPD患者的健康水平,而需要通过含有生理功能、心理状况和社会活动等内容的生命质量评估才能综合判断患者的健康状态。国外对COPD生…     

定期随访对充血性心力衰竭患者生命质量的影响

目的 评价充血性心力衰竭患者出院后在不同时期给予健康教育和定期随访对其生命质量的影响.方法 随机选取80例充血性心力衰竭的患者,分成对照组40例和干预组40例,对照组予常规健康宣教和出院指导,干预组在出院后予定期的随访和针对性的健康指导.分别在治疗后1个月、3个月以及6个月进行健康相关生命质量的评价.结果 干预后1个月、3个月以及6个月干预组与对照组健康相关生命质量总分差异有统计学意义（P〈0.05）,提示干预组健康相关生命质量优于对照组.结论 定期家庭随访、健康宣教是提高充血性心力衰竭患者生命质量的有效方法.     

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.     

Two Kinds of Items in Quality of Life Instruments: ‘Indicator and Causal Variables’ in the EORTC QLQ-C30

Two kinds of variables may be differentiated within instruments measuring health-related quality of life (HRQOL). Physical symptoms may be called causal variables because their occurrence can cause a change in HRQOL, but poor HRQOL need not necessarily imply that a patient suffers from these symptoms. Other items can be regarded as indicator variables. They reflect the level of HRQOL and a patient with a poor HRQOL is likely to have low scores on all indicator variables. The aim of this study was to test the relationship of the latent HRQOL construct to items and domains on the EORTC QLQ-C30. Confirmatory factor analysis was performed on EORTC QLQ-C30 data from 205 gastrointestinal cancer patients assessed one month after surgery. Functioning scales were established as variables indicating the level of HRQOL whereas all other subscales and items were established as variables causing a change in HRQOL. The model-data fit was satisfactory. Results support the hypothesis that two kinds of variables may be differentiated within HRQOL instruments. Further research should investigate whether both kinds of variables could be combined into a higher order, aggregate score for HRQOL.     

Pramipexole versus Levodopa in Patients with Early Parkinson''s Disease: Effect on Generic and Disease-Specific Quality of Life

OBJECTIVE: Although health-related quality of life (HRQOL) has been included in multiple Parkinson's disease (PD) clinical trials, little is known about how HRQOL responds to treatments over time. Here we assess the effect of therapy on HRQOL and explore factors that influence the HRQOL profiles and subdomains. METHOD: A total of 301 subjects with early PD were randomized to either initial pramipexole or initial levodopa and followed every 3 months over a 4-year period. To estimate health outcomes, we used EQ-5D and PDQUALIF. We calculated the incremental effectiveness as the accumulated difference in the total HRQOL over time between treatments. The subgroup analyses (by sex, race, age, baseline patient characteristics, and occurrence of adverse events) were conducted using the same approach. Sensitivity analysis was performed to test the effect of missing data imputation on the results. RESULTS: All three HRQOL measures resulted in similar profiles over time characterized by initial improvement over the first 3 to 6 months and followed by a gradual decline in years 2, 3, and 4. The difference in HRQOL between the treatment arms widened in favor of pramipexole in years 3 and 4 for all HRQOL measures used (EQ-5D: Y3 0.048, P = 0.03; Y4 0.071, P = 0.04). Our analyses suggested that the effect of pramipexole on HRQOL was mediated through nonmotor functions, whereas levodopa improved primarily motor domains of HRQOL. CONCLUSION: Our results suggest that pramipexole and levodopa affect patient HRQOL via improvement on different domains of well-being: nonmotor effect for pramipexole and mobility improvement for levodopa.     

Health-related quality of life measurement in pediatric clinical practice: An appraisal and precept for future research and application

Health-related quality of life (HRQOL) measurement has emerged as an important health outcome in clinical trials, clinical practice improvement strategies, and healthcare services research and evaluation. HRQOL measures are also increasingly proposed for use in clinical practice settings to inform treatment decisions. In settings where HRQOL measures have been utilized with adults, physicians report such measures as useful, some physicians alter their treatment based on patient reports on such instruments, and patients themselves generally feel the instruments to be helpful. However, there is a dearth of studies evaluating the clinical utility of HRQOL measurement in pediatric clinical practice. This paper provides an updated review of the literature and proposes a precept governing the application of pediatric HRQOL measurement in pediatric clinical practice. Utilizing HRQOL measurement in pediatric healthcare settings can facilitate patient-physician communication, improve patient/parent satisfaction, identify hidden morbidities, and assist in clinical decision-making. Demonstrating the utility of pediatric HRQOL measurement in identifying children with the greatest needs, while simultaneously demonstrating the cost advantages of providing timely, targeted interventions to address those needs, may ultimately provide the driving force for incorporating HRQOL measurement in pediatric clinical practice.     

Reporting of health-related quality of life (HRQOL) data in oncology trials: a comparison of the European Organization for Research and Treatment of Cancer Quality of Life (EORTC QLQ-C30) and the Functional Assessment of Cancer Therapy-General (FACT-G)

Purpose

The inclusion of patient-reported outcome (PRO) instruments to record patient health-related quality of life (HRQOL) data has virtually become the norm in oncology randomised controlled trials (RCTs). Despite this fact, recent concerns have focused on the quality of reporting of HRQOL. The primary aim of this study was to evaluate the quality of reporting of HRQOL data from two common instruments in oncology RCTs.

Design

A meta-review was undertaken of systematic reviews reporting HRQOL data collected using PRO instruments in oncology randomised controlled trials (RCTs). English language articles published between 2000 and 2012 were included and evaluated against a methodology checklist.

Results

Four hundred and thirty-five potential articles were identified. Six systematic reviews were included in the analysis. A total of 70,403 patients had completed PROs. The European Organization for Research and Treatment of Cancer QLQ-C30 and Functional Assessment of Cancer Therapy-General questionnaire accounted for 55 % of RCTs. Eighty per cent of RCTs had used psychometrically validated instruments; 70 % reported culturally valid instruments and almost all reported the assessment timing (96 %). Thirty per cent of RCTS reported clinical significance and missing data. In terms of methodological design, only 25 % of RCTs could be categorised as probably robust.

Conclusion

The majority of oncology RCTs has shortcomings in terms of reporting HRQOL data when assessed against regulatory and methodology guidelines. These limitations will need to be addressed if HRQOL data are to be used to successfully support clinical decision-making, treatment options and labelling claims in oncology.     

Prognostic value of health-related quality of life in patients with metastatic pancreatic adenocarcinoma: a random forest methodology

Purpose

Eastern Cooperative Oncology Group Performance Status (ECOG-PS) is currently an important parameter in the choice of treatment strategy for metastatic pancreatic adenocarcinoma (mPA) patients. However, previous research has shown that patients’ self-reported health-related quality of life (HRQOL) scales provided additional prognostic information in homogeneous groups of patients with respect to ECOG-PS. The aim of this study was to identify HRQOL scales with independent prognostic value in mPA and to propose prognostic groups for these patients.

Methods

We analysed data from 98 chemotherapy-naive patients with histologically proven mPA recruited from 2007 to 2011 in the FIRGEM phase II study which aimed to compare the effectiveness of two chemotherapy regimen. HRQOL data were assessed with the European Organization for Research and Treatment of Cancer QLQ-C30 questionnaire. A random survival forest methodology was used to impute missing data and to identify major prognostic factors for overall survival.

Results

Baseline HRQOL assessment was completed by 60 % of patients (59/98). Twelve prognostic variables were identified. The three most important prognostic variables were fatigue, appetite loss, and role functioning, followed by three laboratory variables. The model’s discriminative power assessed by Harrell’s C statistic was 0.65. Fatigue score explained almost all the survival variability.

Conclusion

HRQOL scores have prognostic value for mPA patients with good ECOG-PS. Moreover, the patient’s fatigue, appetite loss, and self-perception of daily activities were more reliable prognostic indicators than clinical and laboratory variables. These HRQOL scores, especially the fatigue symptom, should be urgently included for prognostic assessment of mPA patients (with good ECOG-PS).

     

Health-related quality of life in patients with dual diagnosis: clinical correlates

ABSTRACT: BACKGROUND: Although the studies published so far have found an affectation in the Health Related Quality of Life (HRQOL) in both psychiatric and substance use dependence disorders, very few studies have applied HRQOL as an assessment measure in patients suffering both comorbid conditions, or Dual Diagnosis. The aim of the current study was to assess HRQOL in a group of patients with Dual Diagnosis compared to two other non-comorbid groups and to determine what clinical factors are related to HRQOL. METHODS: Cross-sectional assessment of three experimental groups was made through the Short Form -- 36 Item Health Survey (SF-36). The sample consisted of a group with Dual Diagnosis (DD; N = 35), one with Severe Mental Illness alone (SMI; N = 35) and another one with Substance Use Dependence alone (SUD; N = 35). The sample was composed only by males. To assess the clinical correlates of SF-36 HRQOL, lineal regression analyses were carried out. RESULTS: The DD group showed lower scores in most of the subscales, and in the mental health domain. The group with SUD showed in general a better state in the HRQOL while the group with SMI held an intermediate position with respect to the other two groups. Daily medication, suicidal attempts and daily number of coffees were significantly associated to HRQOL, especially in the DD group. CONCLUSIONS: The DD group showed lower self-reported mental health quality of life. Assessment of HRQOL in dual patients allows to identify specific needs in this population, and may help to establish therapeutic goals to improve interventions.     

Measurement accuracy in assessing patient’s quality of life: to weight or not to weight domains of quality of life

Purpose  Health-related quality of life (HRQOL) measures typically do not incorporate patients’ preferences for domains such as physical, emotional, functional and social/family well-being, which may compromise precision. Method  A forced-choice domain-preference measure was developed to assess the importance of HRQOL domains. About 194 cancer patients completed the domain-preference measure, along with measures of HRQOL, coping, adjustment, and life satisfaction. Results  Patients ranked emotional well-being as most important and the loss of social-family well-being as the most difficult to do without. A weighting algorithm revealed no advantage to incorporating individuals’ domain preferences in HRQOL assessment; however, preliminary evidence suggested that HRQOL measurement may be more accurate in predicting outcomes for individuals with no distinct domain preferences than those with distinct preference profiles. Conclusion  This study provides preliminary evidence for the validity of current measures of HRQOL, which may inherently take into account patients’ domain preferences.     

Evaluating the relationship between pain presentation and health-related quality of life in outpatients with metastatic or recurrent neoplastic disease

Because cancer pain can in many cases be intermittent, the presence or absence of pain in ambulatory care patients on any given clinic visit may not be an accurate characterization of the impact of pain on functioning or health-related quality of life (HRQOL). The purpose of this study was to describe the relationship between temporal aspects of pain presentation and HRQOL among 187 stage III/IV cancer patients using the Brief Pain Inventory and the EORTC QLQ-C30. A total of 43% of patients reported pain the previous week, with 22% reporting no pain at the time of assessment. Differences between three pain groups (No Pain, Past Pain, and Current Pain) were significant for global HRQOL and five dimensions of HRQOL. Severity of pain was also associated with each dimension of HRQOL. This study highlights the complex relationship between pain presentation and HRQOL. The findings support the continuing need for detailed pain assessments among cancer patients treated in ambulatory care settings. Specifically, standardized, self-report measures of cancer pain that include ‘frequency’ as well as severity may be the most accurate approach to capture the impact of pain on HRQOL. This revised version was published online in June 2006 with corrections to the Cover Date.