基于患者视角的艾滋病患者症状体验评估研究进展

尽管ART有效降低了艾滋病患者的病死率,但在艾滋病患者与病毒较量的漫长岁月里,治疗、疾病本身与合并疾病所带来的多种不适症状却严重影响着患者的生活质量及临床结局,且并未因为ART而得到有效缓解.症状管理理论的不断发展向医疗界传递着基于患者自身感知症状数据收集、评估对于开展症状管理实践的重要价值与意义.因此,探究并追溯艾滋...     

社区获得性肺炎结局的现状与思考

基于社区获得性肺炎结局研究的思路转变,即强调具有临床意义的结局而不是简单依赖于生理或生物结局,应从短期的生物学终点朝向于远期终点的变化,着重从实验室检查结局(致病菌的清除和肺部病变吸收)、临床结局(死亡率、再住院率、住院的并发症、病情稳定时间、症状与体征、功能或生活质量等)和卫生经济学指标的结局(直接医疗和间接医疗方面等)等方面介绍社会获得性肺炎患者结局的现状,并对有关问题进行讨论.     

心房颤动患者的生活质量评估和最新症状分级方法

心房颤动(房颤)是最常见的心律失常,房颤患者的生活质量往往严重受损。准确地评估房颤患者的生活质量受损程度可以指导临床医生进行有效干预,帮助患者改善生活质量,避免不必要的医疗资源消耗。最近几年来,许多生活质量评估方法已被证实并应用于大量临床研究中。自EHRA分级法提出并被新版房颤指南所推荐后,新的房颤症状分级方案也开始受到重视。本文总结了目前主要的生活质量评估方法和最新的症状分级方法及其各自的适用性、限制性以供临床医生参考。     

心血管病的症状（1）

患有心血管病的患者早期可以完全没有症状,而出现症状时(往往是急性起病或病情有所发展)才是患者就诊的主要原因,也是临床医生诊断疾病和判断病情的重要依据之一。心血管病的常见临床症状有胸痛、乏力、气短、心悸、昏厥、猝死、水肿、恶心以及头痛等。由于人体是一个整体,患有心血管     

原发性肝癌患者报告临床结局中医评价量表初步研究

根据美国FDA发布的关于患者报告结局(PRO)量表的研制说明,应用扎根理论(Grounded theory)和Delphi法,以患者自身症状为中心对量表进行测评,初步研制中医特色的原发性肝癌患者自身症状报告的临床结局评价量表(TCM-PRO)。TCMPRO肝癌量表由30个条目组成,包括5个维度:生理反应维度、感觉症状维度、心理维度、社会关系维度和表示治疗的总体情况——满意度。通过初步验证表明,其信度和效度高,实用性强,此量表可用于肝癌患者自身症状的评估。     

心房颤动患者自我报告症状评估工具的研究进展

心房颤动症状多样, 可反复发作, 临床医护人员需注重患者的主观感受, 加强对症状的全面评估和管理。本文就心房颤动患者自我报告症状评估工具进行综述, 分析其内容、信效度及优缺点。旨在为医护人员合理选择症状评估工具或开发新的工具提供借鉴, 为房颤症状管理提供科学依据。     

原发性胆囊癌漏诊45例原因分析

原发性胆囊癌症状隐匿多是继发于胆囊结石和胆囊腺瘤。由于症状不显，缺乏特有表现，早中期患者常有漏诊，再加医生诊查不细心，是临床漏诊主要原因。在目前腹腔镜胆囊切除术（LC）广泛开展情况下，许多病例是在术中或术后才得确诊，造成医疗工作十分被动。1993年1月-2008年12月，我们行Lc21500例，发生漏诊原发性胆囊癌45例。现报告如下。     

帕金森病非运动症状的中西医治疗进展

随着对帕金森病认识的深入,帕金森病的非运动症状如神经精神症状、自主神经功能障碍、睡眠障碍等逐渐被临床医生所关注,如何有效控制帕金森病的非运动症状已被临床医生所重视,在西医常规治疗基础上,探求中医治疗方法提高疗效,成为很多临床医生的共识。本研究针对帕金森病的非运动症状中西医结合治疗作一综述,以期对治疗有所帮助。     

糖尿病患者应警惕泌尿系感染

作为一名内分泌科医生,在临床工作中经常会遇到这样的糖尿病患者：以发热、纳差、恶心、胃部不适等非特异性症状就诊,查血糖高,血象白细胞高,没有其他的自觉症状。遇到对糖尿病了解不深的急诊科医生,就有可能误以急性胃肠炎而收住到消化内科。     

临床路径在冠脉造影中的应用

临床路径是一种新的照护模式,是由医生、护士和其他专业人员针对某疾病诊断或手术所做的最适当、有顺序性和时间性的照护计划,以加速康复与减少资源浪费,使服务对象获得最佳的服务质量。2008年11月至2009年5月,本院在通过冠状动脉造影（CA（3）排除疑似冠心病（CH19）患者中实施临床路径,效果很好,现报告如下。     

Patient-reported outcomes in cystic fibrosis

Over the past 20 years, there has been tremendous progress in the area of patient-reported outcomes (PROs). A PRO instrument is defined as any measure of a patient's health status that is elicited directly from the patient and assesses how the patient "feels or functions with respect to his or her health condition." The advances seen in clinical research regarding PROs has been mirrored in research in cystic fibrosis (CF). A large number of instruments have been used for both therapeutic and nontherapeutic clinical research for many chronic conditions. This review will summarize a history of the development of PROs and how PROs are viewed by the U.S. Food and Drug Administration. We will then review the current state of the art of patient-reported outcomes in CF, specifically addressing the evaluation of different PRO instruments in terms of their reliability and validity. Finally, we will delineate further areas for development of PROs in CF. We believe that the future of CF research will incorporate a more diverse selection of PRO outcome measures; these outcome measures ultimately may be incorporated into clinical care to standardize symptom assessment and provide information regarding the need for specific clinical interventions to improve the quality of care delivered to these patients.     

A scoping review of heart failure transitional care quality indicators and outcomes for use in clinical care and research

Aims

There are no accepted quality indicators for transitional care following hospitalization for heart failure (HF). Current quality measures focus on 30-day readmissions without accounting for competing risks such as death. In this scoping review of clinical trials, we aimed to develop a set of HF transitional care quality indicators for clinical or research applications following hospitalization for HF.

Methods and results

We performed a scoping review using MEDLINE, Embase, CINAHL, HealthSTAR, reference lists and grey literature from January 1990 to November 2022. We included randomized controlled trials (RCTs) of adults hospitalized for HF who received a healthcare service or strategy intervention that aimed to improve patient-reported or clinical outcomes. We independently extracted data and performed a qualitative synthesis of the results. We generated a list of process, structure, patient-reported, and clinical measures that could be used as quality indicators. We highlighted process indicators that were associated with improved clinical outcomes and patient-reported outcomes that had high adherence to COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) and United States Food and Drug Administration standards. From 42 RCTs included in the study, we identified a set of process, structure, patient-reported, and clinical indicators that could be used as transitional care measures in clinical or research settings.

Conclusion

In this scoping review, we developed a list of quality indicators that could guide clinical efforts or serve as research endpoints in transitional care in HF. Clinicians, researchers, institutions, and policymakers can use the indicators to guide management, design research, allocate resources, and fund services that improve clinical outcomes.     

Health-related quality of life and symptom assessment in patients with myelodysplastic syndromes

Health-related quality of life (HRQOL), symptom burden and other types of patient-reported outcomes have acquired an important role in clinical research, as they can provide precious information on the patient's perspective of disease symptoms and treatment-related effects. HRQOL in patients with myelodysplastic syndromes (MDSs) may be compromised for several reasons, including severe anemia, the frequent occurrence of infections and the need for blood transfusions. Many MDS patients are elderly patients who might present with comorbidities from the time of diagnosis. Our investigation started with a systematic search of the literature in which prospective studies were identified and evaluated according to a predefined coding scheme. Both HRQOL outcomes and traditional clinical reported outcomes were systematically analyzed. Overall, we found nine prospective studies, four of which evaluated HRQOL in a randomized controlled trial setting and, interestingly, all these studies were published after the year 2001, possibly reflecting a recent interest in HRQOL research in MDS patients. While methodological drawbacks were identified, mainly in terms of small sample size and amount of missing data, HROQL assessment has been shown to be feasible in MDS patients and there are excellent examples of how this approach can provide additional key outcomes. A good example is the important evidence emerging from two recent randomized controlled trials that HRQOL benefits are obtained with azacitidine and decitabine compared with supportive care. In view of the enormous potential of patient-reported outcome assessment in providing valuable outcomes in support of clinical decision-making, its implementation in future studies of MDS patients is strongly recommended.     

Research within the field of blood and marrow transplantation nursing: how can it contribute to higher quality of care?

Nursing Science and research within BMT started in the early 80s and has been shown to be a useful contribution to obtain and maintain high standards of care. Trial and error are no longer accepted. The first studies were conducted together with the clinical developments and focused specifically on symptom control and management of the treatment. The term "evidence-based nursing" (EBN) is nowadays often used to describe the influence of research on practice. And yet we find that in general, care given by nurses is not yet based according to the guidelines established by research. There are several reasons why care is not (yet) based on results from research, like language barrier, diversity in health care and nursing educational systems, financial restrains and different roles and perceptions of nurses around the globe. Many nursing or multidisciplinary research studies have been conducted worldwide on areas such as the prevention or care for patients with mucositis, fatigue or pain, care for the central venous access devices, outpatient management of care, care for the donor and aspects of quality of life. Results have implications on practice and start to show their impact on quality of care. Many questions remain unanswered. Results from basic science (e.g. the discussion around fetal liver and embryonic derived stemcells and their use in treatment other than hematologic malignancies) and developments in medical treatments (e.g. introduction of tyrosin-kinase inhibitor, biotherapy and genetherapy) have an impact on nursing and should therefore be investigated closely to develop clinical pathways. It is obvious that much more time, finances, collaboration and support is needed to conduct powerful studies that can influence care for the BMT patient. This presentation will focus on developments through nursing research within the field of BMT and discuss gaps that will need to be filled in the near future.     

The Patient’s Experience of Gout: New Insights to Optimize Management

Despite the high prevalence of disease, gout management is frequently poor, with low patient adherence to urate-lowering therapy and attainment of recommended serum urate targets. Recent research has explored the patient’s experience of gout, providing new understanding of the impact of disease. Pain is central to the patient’s experience of gout. Poorly controlled gout leads to limitation of activities, reduced participation, and poor health-related quality of life. Although effective gout management with urate-lowering therapy improves many patient-reported outcomes in clinical trials, major gaps exist in patient understanding of disease and adherence to long-term urate-lowering therapy. Furthermore, a large mismatch in the perceptions of gout and its therapy exists between patients and health care practitioners. These issues may contribute to progressive and poorly controlled disease despite the availability of effective treatment. These findings provide potential pathways to improved clinical care of patients with gout. Work is now required to identify the optimal models of care for patients with gout that can be tested in clinical trials using outcome measures of relevance to individuals with this disease.     

Quality of life in gastric cancer

AIM: To summarize the empirical research on assessing quality of life (QOL) in patients with gastric carcinoma. METHODS: Literature searches were conducted in MedLine from 1966 to February 2004. RESULTS: Twenty-six studies were identified. QOL was used as an outcome measure in virtually all identified studies, such as those examining the effects of gastric cancer and various medical or surgical treatments in the patients. QOL was assessed mainly with generic measures; the social dimensions of QOL were largely neglected.The lack of gastric cancer-specific QOL measures hampers QOL research up to now.The gastric cancer-specific EORTC-QLQ-STO22 and the FACT-Ga are important additions to the arsenal of disease-specific QOL measures. In most of the studies, the label QOL is used for questionnaires, which only assess symptoms or performance status, or are physician-reported rather than patient-reported outcomes. CONCLUSION: QOL in patients with gastric cancer deserves more systematic studies, especially as one of the outcome measures in randomized clinical trials. Results of studies that include QOL in patients with gastric cancer should be applied in clinical care, which aims at improving QOL of these patients.     

Patient-reported outcome I: measuring what matters in musculoskeletal care

Patients have an important role to play in communicating the impact of disease and the effectiveness of health care. Well-developed patient-reported outcome measures (PROMs) can provide a clinically relevant and scientifically rigorous resource for including the patient perspective in decisions about health care and subsequent evaluation. This article will introduce readers to the field of health outcome assessment, and specifically to patient-reported outcome measures (PROMs). The reasons for measuring health, different types of PROMs and potential applications will be discussed. A second article will present important information for users of PROMs to consider when selecting and using PROMs in research, routine practice or quality assurance.     

改善科学（Improvement science）——科学与行动的结合体

随着科学技术的进步,现代医学已取得了令人瞩目的成就,但现实世界的日常医疗行为与我们所期望的理想状态存在着巨大差异.2003年,美国国家医学院（IOM）的报告显示,“提高卫生保健的质量”已成为需要国家和政府采取积极行动的领域.糖尿病现已成为威胁国人健康的主要疾病之一,我国成人的T2DM患病率已经高达9.7％,患病人数居于世界首位.大量研究显示,某些“医疗措施”能有效降低糖尿病并发症的发生,从而降低患者的致残率及致死率,提高其生活质量.因此,这些“医疗措施”已广泛获得国内外糖尿病专业学术组织所制定指南的推荐.这些“医疗措施”被称之为糖尿病“标准化诊疗措施”.而实况调查显示,我国T2DM标准化诊疗措施的落实率不容乐观.因此,应用改善科学提高我国糖尿病管理和控制的质量已迫在眉睫.在不久的将来,改善科学将成为为患者提供高质量医疗卫生服务不可或缺的学科,并将持续促进医疗卫生质量的改善和发展.通过改善科学研究和实践促进糖尿病的标准化诊疗在现实世界的医疗实践中得到广泛落实将,使我国糖尿病并发症对个人、家庭和社会所带来的沉重负担逐渐减轻.     

Community-acquired pneumonia: severity of illness evaluation

Severity-of-illness assessment is now an accepted part of clinical practice and clinical research for the management of adults who have community-acquired pneumonia. Several approaches to this issue have been devised based on severity-of-illness scores or rules, some related to site of management. No single approach has been found to be superior to others, but further research into their effect on outcome in clinical practice is required. It is likely that different approaches may suit different populations and health care systems.     

Protecting seriously ill populations during pragmatic clinical trials

Pragmatic clinical trials (PCTs) emphasize real-world effectiveness methodology to address the limitations of results from explanatory randomized clinical trials (RCTs), which often fail to translate to real-world medical practice. An inherent tension in the conduct of PCTs is that the research must impose a minimal burden on patients and health care institutions. PCTs prioritize outcome measures from existing data sources to minimize data collection burden; however, a lack of patient-reported outcomes may result in gaps in safety for vulnerable populations, such as those with serious illnesses. One proposed standard for judging the readiness of a study for a pragmatic trial is a ranking system that assigns PCTs a lower rank if they impose additional data collection burdens. However, this results in the wide use of measures of health care utilization and costs while patient experience measures, which could capture adverse unintended consequences, are omitted. In this article, we make the case for a risk-based approach to imposing additional data collection in PCTs to capture potential safety and patient experience outcomes, using examples from “real life” implemented interventions to improve end-of-life care through the Liverpool Pathway and through the implementation of Physician Orders for Life Sustaining Treatment (POLST) in Oregon.