生存质量研究概况与测定量表

本文首先介绍了生存质量概念产生及其内涵演变的发展过程,同时还对生存质量研究的现状和存在的问题进行了简单的介绍。文章介绍了生存质量在一般及特殊人群健康状况评定、主慢性病患者生存质量测评、临床治疗方案的评价与选择、预防性干预及保健措施的效果评价、卫生资源配置与利用的决策,探讨了健康影响因素与防治重点等文章还介绍了生存质量研究在６大医学领域中的应用以及９种常用的生存质量量表。     

妇科恶性肿瘤患者的生存质量评价

文章主要介绍了妇科肿瘤(宫颈癌、卵巢癌、子宫内膜癌和外阴癌)患者的生存质量评价方法。妇科肿瘤生存质量测定量表主要包括个人特征、家庭情况、生理状况、心理状况、躯体焦虑、社会关系、满意程度及生存质量总分,量表的计算采用评分法,以低优原则评价生存质量的好与坏。如何用一综合指标来反映这些变化,是目前研究的重要课题。在评价妇科恶性肿瘤患者生存质量时,采用了多维、简明、可靠、有效的量表来反映患者的真实情况,以供在研究中参考应用。     

卵巢癌术后病人生存质量研究现状

介绍生存质量的定义及研究卵巢癌病人生存质量的目的、意义,阐述卵巢癌病人生存质量的研究工具及不同时期卵巢癌病人的生存质量。指出我国对卵巢癌病人生存质量的研究主要集中在病人生存质量或其影响因素的研究和提高病人生存质量的干预措施两方面,对出院后相关随访研究、病人并发症发生情况及生活信心等方面研究较少,同时对术后病人生存质量的研究方法较局限且样本量有限。我国对卵巢癌病人生活质量评价工具多采用国外量表汉化版,缺乏适合我国国情的生存质量评价工具。同时,除心理干预、支持性护理、自我管理及依从性研究外,还应针对其他生存质量可控性影响因素进行多维度护理干预,以帮助卵巢癌病人提高生存质量。     

儿童生存质量量表的国内外研究现状

儿童生存质量量表是评价儿童生活质量的工具,起源于国外,其规范的引进和应用非常必要.本文介绍儿童生活质量量表起源与框架,总结国内外的研究现状,借鉴国外应用儿童生存质量量表的研究经验,为国内更好地评价儿童生存质量、提高儿童健康水平提供参考.     

癫痫病人生存质量及影响因素研究进展

介绍癫痫病人生存质量及影响因素研究进展,重点阐述癫痫病人生活质量测量工具、成年及儿童癫痫病人的生存质量、癫痫病人生存质量影响因素、改善病人生存质量的方法.     

中华生存质量量表的理论结构模型研制探讨

通过分析生存质量在临床疗效评价中的重要作用和生存质量在中医领域的研究途径,认为应该研制能够体现中国文化和中医特色的生存质量量表-中华生存质量量表。并重点探讨了研制中华生存质量量表的中医理论基础及在此理论基础之上建立的假设模型。     

健康相关生存质量量表在心血管疾病研究中的常用分析评价方法

介绍健康相关生存质量量表在心血管疾病研究中的应用及其常见分析评价方法。作为一种全面反映健康状态的新的指标体系,健康相关生存质量在临床研究中已有广泛的应用。以健康状况调查问卷(SF-36)量表为例详细介绍了如何使用量表,常用的信度、效度、反应度的分析评价方法以及生存质量资料的分析处理方法,以期为健康相关生存质量及量表在临床研究中推广应用起到抛砖引玉的作用。     

中华生存质量量表的理论结构模型研制探讨

通过分析生存质量在临床疗效评价中的重要作用和生存质量在中医领域的研究途径，认为应该研制能够体现中国文化和中医特色的生存质量量表一中华生存质量量表。并重点探讨了研制中华生存质量量表的中医理论基础及在此理论基础之上建立的假设模型。     

妇科恶性肿瘤患者的生存质量评价

章主要介绍了妇科肿瘤（宫颈癌、卵巢癌、子宫内腺癌和外阴癌）患的生存质量评价方法。妇科肿瘤生存质量测定量表主要包括个人特征、家庭情况、生理状况、心理状况、躯体焦虑、社会关系、满意程度及生存质量总分，量表的计算采用评分法，以低优原则评价生存质量的好与坏。如何用一综合指标来反映这些变化，是目前研究的重要课题。在评价妇科恶性肿瘤患生存质量时，采用了多维、简明、可靠、有效的量表来反映患的真实情况，以供在研究中参考应用。     

肺癌病人生存质量研究进展

从生存质量评价内容及常用的量表以及生存质量评价在肺癌临床研究中的应用方面综述了肺癌病人生存质量研究现状,并简述了影响肺癌病人生存质量的因素及生存质量在肺癌病人护理研究中存在的问题。     

Chronic lymphocytic leukemia: economic burden and quality of life: literature review

The purpose of this review was answer 2 main questions: what is the impact of chronic lymphocytic leukemia (CLL) on the patient's quality of life and how great is the economic burden of this disease on the health care payers and providers. Patients with CLL typically do not receive any treatment soon after the initial diagnosis. Although there is no known cure for CLL yet, when treated, the patients receive aggressive and expensive therapies (eg, chemotherapy or bone marrow transplantation). A rigorous and systematic literature review was performed of English-language articles published in 1990-2002. It was supplemented with additional articles published before 1990 for completeness and additional references to fill the gaps identified in the published medical literature. The literature on the quality of life (QOL) of CLL patients is very limited. We identified only 8 articles, and none of them analyzed the QOL in untreated CLL patients. Because CLL is a disease affecting adults, especially the elderly, all 8 studies measured the QOL in the adult population. QOL difficulties include fear of death and disability, problems gaining employment or health insurance, and fatigue. No specific leukemia or CLL instruments but general QOL instruments (eg, I-HRQL) were identified and some cancer-specific ones (eg, EORTC QLQ-C30, FACT-G, FACT Anemia, FACT-Fatigue). Interestingly, a FACT-Bone Marrow Transplant instrument exists, although we found no study on CLL that used it. Even the literature on the economic burden of CLL is very limited. We identified 13 studies on the cost of CLL: Most of them were cost-identification or cost-comparison studies, and 5 dealt with the cost-effectiveness of medical interventions to treat CLL. Cost drivers identified for CLL were the chemotherapy costs, intravenous immunoglobulin costs, transplantation costs, and costs associated with the differential staining cytotoxicity assay. We identified very few articles on the QOL of CLL patients and therefore cannot draw strong conclusions about the key QOL predictors. Nevertheless, patients with anemia were found to have a better QOL if they had higher hemoglobin counts and good response to erythropoietin treatment. The articles published seem to demonstrate that the older the age of the patient was, the poorer the QOL. The main cost drivers identified for CLL were related to the treatment chosen (eg, chemotherapy, bone marrow transplantation). There are hints that higher costs often result from the delivery of non-optimal therapy that leads to adverse events, infections, and drug resistance. In summary, the impact of this disease on the health care budget of the different health care providers and payers as well as on the patient's QOL is substantially unknown, calling for appropriate economic and QOL studies.     

Is quality of life being compromised in people with dementia in long-term care?

Moyle W. (2010) Is quality of life being compromised in people with dementia in long-term care? International Journal of Older People Nursing 5 , 245–252
doi: 10.1111/j.1748-3743.2010.00230.x Aim. To outline the importance of understanding quality of life (QOL) in people with dementia living in long-term care. To consider several key research questions and some of the challenges and impact of neglecting knowledge transfer. Background. There is a gap between the knowledge in the broad dementia research literature and transfer of knowledge into practice. Quality of life research and transfer of research into practice is one means by which health professionals can inform health and social care policy and improve care practice. Discussion. There are a number of unanswered research questions in relation to QOL in people with dementia living in long term care. A selection of questions discussed in this paper relate to the impact of staff knowledge of mental health assessment and the importance of therapeutic communication, cognitive training programs and social biography, individual needs, weight and behavioural and psychological symptoms of dementia (BPSD), resident choice and the impact of the environment on QOL. Conclusion. Research methods used to assess QOL must not be too restrictive and mixed methods and data from multiple perspectives should be encouraged so that an extensive understanding is uncovered. Potential strategies to assist knowledge transfer in long-term care settings are needed.     

Quality-of-life trajectory of clients and carers referred to a community palliative care service

Palliative care clients often have a reduced quality of life (QOL). The purpose of this study was to explore the QOL trajectory of clients and carers newly referred to a community palliative care service. A total of 49 clients and 43 carers respectively completed the McGill QOL scale (MQOL) and the caregiver QOL cancer scale (CQOLC) questionnaires. Baseline data relating to demographics, health status, and QOL are presented for the 49 participants and their 43 carers, and these are compared with follow-up data from 22 clients and 13 carers (matched pairs). On average, there were no significant differences between baseline and follow-up QOL scores in any respects for either clients or carers, including measures of burden, disruptiveness, positive adaptation, and financial concerns. Whether this indicates that the care administered succeeded in cancelling out the worsening of the clients' conditions or whether it indicates a shortcoming of the care was not assessed.     

Hospice family caregivers’ quality of life

Aims and objectives. To study quality of life (QOL) and its important correlates among family caregivers of terminally ill patients receiving in‐home hospice care. Background. Caregiver QOL has been identified as a core outcome variable in studies of dying patients and their families, but few studies have assessed QOL among caregivers of patients with terminal illness, particularly those in hospice care. Design. For this cross‐sectional correlational study, 60 caregivers were recruited from two local in‐home hospice programmes in the Midwestern United States. Methods. Self‐report data were provided by caregivers using the Caregiver Quality of Life Index – Cancer, Spiritual Well‐Being Scale, American Pain Society Patient Outcomes Questionnaire, Eastern Cooperative Oncology Group Performance Status Rating and Medical Outcome Study Social Support Survey to measure their QOL, spirituality, health status and social support. Results. Caregivers’ educational status, physical health status, spirituality and qualitative and quantitative social support, as a set, explained 42% of the variance in their QOL. Caregivers with higher education, better physical health status, greater spirituality and more qualitative and quantitative social support, had a significantly better QOL. Conclusions. QOL for this sample of hospice caregivers was significantly predicted only by physical health status and spirituality, likely because of collinearity among the independent variables. Additional research is needed to explore the factors that sustain or promote caregivers’ QOL over time. Relevance to clinical practice. In the delivery of hospice services, the family caregiver is both a vital member of the health care team and a recipient of care. Health care providers should therefore pay more attention to the health status and spirituality of major caregivers, thus helping them maintain and improve their QOL.     

上海市中心城区1997年和2001年老年人生活质量抽样调查的比较

目的比较1997年和2001年上海中心城区老人的人口学特征和生活质量(QOL)10个方面的变化,观察精神卫生教育等干预措施的作用。方法在上述年份对华业小区的老人进行随机抽样调查,分析2个样本的人口学特征,计算QOL各方面的分值,进行比较。期间加强了社区对老年人的生活和医疗服务,并进行精神卫生教育。结果2001年组老年人的QOL部分略高于1997年,QOL的增高源于日常生活活动能力(ADL)和与社会生活有关的生活能力(IADL)的提高和老年人心理状况的改善。2001年的资料表明,老年人的经济状况和社会经济、文化活动参与低于他们的期望,他们对居住和环境还不满意。结论不同年份QOL调查的比较有助于评价QOL其他各个方面的变化,促使有关方面采取保护老年人的措施。     

The effect of lifestyle interventions on quality of life and patient satisfaction with health and health care

Improvements in quality of life (QOL) and high levels of patient satisfaction are associated with cardiovascular risk reduction (CRR) programs. Understanding the influences that lifestyle change and medical management have on individuals, their families, and their environment can help target successful interventions that benefit both QOL and patient satisfaction. It is well known that multiple aspects of one's QOL can be affected by the development of coronary artery disease. Development of depressive symptoms and anxiety, along with declines in functional capacity and family and social functioning, has been reported. QOL is a dynamic continuum, relating to many aspects of one's life. Social relationships, financial situations, work-related issues, physical limitations, and intellectual challenges all play a role in determining QOL and satisfaction within the health care setting. Self-perception of how these factors negatively or positively influence one's QOL also exerts a strong influence. This article will review the influence of primary and secondary prevention programs on QOL and patient satisfaction.     

Symptom distress, spirituality, and quality of life in African American breast cancer survivors

This study examined the relationships among the demographic characteristics, symptom distress, spirituality, and quality of life (QOL) of African American breast cancer survivors. A convenience sample of 30 survivors with a mean age of 56 years and a mean survival of 6 years was recruited from African American breast cancer support groups and churches in the Southeastern United States. Data were collected through face-to-face interviews using a demographic questionnaire, the Quality of Life Index-Cancer Version, the Symptom Distress Scale, and the Spiritual Perspective Scale. Statistically significant relationships were found between symptoms and QOL (r = -0.62, P < .05) and between spirituality and QOL (r = 0.70, P < .05). No statistically significant relationships were found between age at diagnosis, income, or education and QOL. This research suggests that symptoms and spirituality are associated with QOL. Culturally appropriate care should be provided to these women to reduce health disparities and to improve their QOL.     

原发性高血压患者治疗依从性与生活质量

背景原发性高血压患者治疗依从性直接影响其病情的发展和治疗的效果,但原发性高血压患者治疗依从性与生活质量的关系又是什么呢?目的探讨原发性高血压患者治疗依从性与生活质量的关系.设计回顾性调查研究.地点、对象和方法主要采用治疗依从性问卷、简明健康测量量表对339例住院原发性高血压患者的院外情况进行回顾性调查.主要观察指标引入生活质量评价技术指标,结合患者的治疗依从性,分析其相关性.结果服药依从性与生活质量各个因子及总分呈正相关(r=0.15～0.21,P＜0.05).门诊随访与生活质量各个因子及生活质量总分呈负相关(r=-0.11～-0.13,P＜0.05).戒烟、戒酒或少饮酒、饮食、运动和控制体质量等5项生活方式依从性及总分与生活质量各个因子呈正相关(r=0.11～0.21,P＜0.05).患者服药依从性好的占39.80%、门诊随访占63.70%、5项生活方式依从性占34.20%,其中戒烟占86.70%、戒酒或少饮酒占79.10%、饮食占70.80%、运动占68.10%和控制体质量54.00%.结论原发性高血压患者治疗依从性与生活质量间存在密切相关.     

Quality-of-life weights for the US population: self-reported health status and priority health conditions, by demographic characteristics

BACKGROUND: Many of the large ongoing national surveys of the US population contain a question that asks for the respondent's self-reported health status: "excellent," "very good," "good," "fair," or "poor." These surveys could be used to conduct cost-utility analyses of health care policies, treatments or other interventions if quality-of-life (QOL) weights for the self-reported health statuses were also available. OBJECTIVE: The objective of this study was to produce nationally representative QOL weights for self-reported health status and for 10 "priority" health conditions, by a series of demographic variables. RESEARCH DESIGN: The Medical Expenditure Panel Survey contains the questions from the EQ-5D health status measure. A recent study has calculated time-trade-off-derived QOL weights corresponding to the EQ-5D health states for a large sample of Americans. We use these data to construct QOL weights for the 5 self-reported health status categories and 10 priority health conditions, by a series of demographic variables. RESULTS: Mean and median QOL weights were produced for self-reported health status, the 10 priority health conditions, and the demographic variables. We also report mean QOL weights for the self-reported health state and priority health conditions, by the demographic variables. Finally, ordinary least squares and censored least absolute deviation regression equations were used to estimate adjusted QOL weights for these variables. CONCLUSIONS: By providing nationally representative QOL weights for self-reported health status and 10 priority health conditions, by demographic variable, we have facilitated the use of large national surveys for conducting cost-utility analysis and increased their value to researchers and policy makers.     

Family Caregiver Quality of Life: Differences Between Curative and Palliative Cancer Treatment Settings

To compare the impact of cancer caregiving in curative and palliative settings on family caregiver quality of life (QOL), 267 family caregivers of cancer patients receiving curative treatment were compared to 134 family caregivers of cancer patients receiving palliative treatment through hospice. Both groups completed a demographic profile in addition to two self-report QOL questionnaires. Patient performance status and disease site were also recorded. Family caregivers of patients receiving palliative care had significantly lower QOL scores and lower scores on physical health. Hierarchical multiple regressions showed that after accounting for patient performance status, treatment status accounted for no additional significant variability in QOL scores. After accounting for caregiver level of education, treatment status accounted for no additional significant variability in physical health. These results suggest that the lower QOL scores of caregivers in the palliative setting are a reflection of the patients’ poorer performance status. The lower physical health scores of caregivers in the palliative setting appear to be a reflection of their lower educational level. Additional research is needed to evaluate the influence of specific demands of caregiving and emotional distress of the caregiver on caregiver QOL. J Pain Symptom Manage 1999;17:418–428.