patient outcome assessment

患者结局评估
  • 文章类型: Journal Article
    背景:政策制定者和研究人员经常建议,护士可能在解决复杂疾病患者不断变化的需求方面发挥关键作用,通过担任高级角色并提供护理咨询。护理咨询在不同的环境和国家之间差异很大,他们的活动范围从补充到替代传统的由医生主导的咨询或常规护理。
    目的:本研究旨在描述在任何情况下对复杂患者进行护理咨询对患者预后的影响(生活质量,身体状况,社会心理健康,健康行为,药物依从性,死亡率,人体测量和生理结果,和患者满意度)和组织结果(卫生资源使用和成本)。
    方法:雨伞综述。
    方法:我们采用了JoannaBriggsInstitute的伞式评价方法。我们搜索了PubMed,Embase,Cochrane系统评论数据库和CINAHL,以确定以英语发表的相关文章,荷兰人,法语,2013年1月至2023年2月期间的西班牙语或德语。我们包括系统的文献综述,有或没有荟萃分析,其中包括在高收入国家进行的随机对照试验.如果评论涉及由专业护士或高级护士从业人员领导的咨询,则符合资格。文章选择,数据提取和质量评估由至少两名评审员独立进行.
    结果:我们纳入了基于473项独特试验的50项系统综述。对于所有患者结果,护理咨询取得的效果至少相当于医生主导的咨询或常规护理的效果(即,非自卑)。为了生活质量,健康行为,药物依从性,死亡率和患者满意度,超过一半的荟萃分析发现,有利于护理咨询的统计学显著影响(即,优势)。必须谨慎解释成本结果,因为提取了很少和异构的成本相关数据,成本分析的方法学质量值得怀疑。叙事综合证实了荟萃分析的总体结论。
    结论:护理咨询对医疗环境中复杂健康状况患者的影响似乎至少与医生主导的咨询或常规护理相似。在生活质量方面,护理咨询似乎比医生主导的咨询或常规护理更有效,健康行为,死亡率,患者满意度和药物依从性。有必要对原始数据进行进一步分析,以确定护理咨询最有效的患者人群和设置。中等学习质量,系统评价之间和内部的多样性,报告的质量阻碍了调查结果的强度。
    BACKGROUND: Policymakers and researchers often suggest that nurses may play a crucial role in addressing the evolving needs of patients with complex conditions, by taking on advanced roles and providing nursing consultations. Nursing consultations vary widely across settings and countries, and their activities range from complementing to substituting traditional physician-led consultations or usual care.
    OBJECTIVE: This study was aimed at describing the effects of nursing consultations with patients with complex conditions in any setting on patient outcomes (quality of life, physical status, psychosocial health, health behaviour, medication adherence, mortality, anthropometric and physiological outcomes, and patient satisfaction) and organisational outcomes (health resource use and costs).
    METHODS: Umbrella review.
    METHODS: We followed the Joanna Briggs Institute method for umbrella reviews. We searched PubMed, Embase, Cochrane Database of Systematic Reviews and CINAHL to identify relevant articles published in English, Dutch, French, Spanish or German between January 2013 and February 2023. We included systematic literature reviews, with or without meta-analyses, that included randomised controlled trials conducted in high-income countries. Reviews were eligible if they pertained to consultations led by specialised nurses or advanced nurse practitioners. Article selection, data extraction and quality appraisal were performed independently by at least two reviewers.
    RESULTS: We included 50 systematic reviews based on 473 unique trials. For all patient outcomes, nursing consultations achieved effects at least equivalent to those of physician-led consultations or usual care (i.e., non-inferiority). For quality of life, health behaviour, medication adherence, mortality and patient satisfaction, more than half the meta-analyses found statistically significant effects in favour of nursing consultations (i.e., superiority). Cost results must be interpreted with caution, because very few and heterogeneous cost-related data were extracted, and the methodological quality of the cost analyses was questionable. Narrative syntheses confirmed the overall conclusions of the meta-analyses.
    CONCLUSIONS: The effects of nursing consultations on patients with complex health conditions across healthcare settings appear to be at least similar to physician-led consultations or usual care. Nursing consultations appear to be more effective than physician-led consultations or usual care in terms of quality of life, health behaviour, mortality, patient satisfaction and medication adherence. Further analysis of the primary data is necessary to determine the patient populations and settings in which nursing consultations are most effective. Moderate study quality, diversity amongst and within systematic reviews, and quality of reporting hamper the strength of the findings.
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  • 文章类型: Journal Article
    背景:人口老龄化是医疗保健系统的挑战,必须确定满足其需求的策略。实践以患者为中心的护理已被证明对该患者群体有益。以患者为中心的护理的效果称为以患者为中心的结果,可以使用结果测量来评估。
    目的:主要目的是回顾和绘制与老年人以患者为中心的结果和以患者为中心的结果测量相关的现有知识,以及确定关键概念和知识差距。研究问题是:如何衡量老年人以患者为中心的结果,哪些以患者为中心的结果对老年人最重要?
    方法:范围综述。
    方法:搜索电子数据库中的相关出版物,2000年至2021年的灰色文献数据库和网站。两名审稿人独立筛选标题和摘要,接下来是全文回顾和使用数据提取框架提取数据。
    结果:纳入了18项研究,其中6名患者和/或专家参与了确定结果的过程。对老年人来说最重要的结果被解释为:获得护理和体验,自治和控制,认知,日常生活,情绪健康,falls,一般健康,药物,总生存率,疼痛,参与决策,物理功能,身体健康,死亡的地方,社会角色功能,症状负担,和在医院度过的时间。最常提及/使用的结果测量工具是成人社会护理结果工具包(ASCOT),EQ-5D,步态速度,Katz-ADL指数,患者健康问卷(PHQ9),SF/RAND-36和4项筛选Zarit负担访谈。
    结论:很少有研究调查老年人对他们最重要的事情的看法,这形成了该领域的知识鸿沟。未来的研究应该集中在为老年人提供他们认为对他们最重要的声音。
    BACKGROUND: The aging population is a challenge for the healthcare system that must identify strategies that meet their needs. Practicing patient-centered care has been shown beneficial for this patient-group. The effect of patient-centered care is called patient-centered outcomes and can be appraised using outcomes measurements.
    OBJECTIVE: The main aim was to review and map existing knowledge related to patient-centered outcomes and patient-centered outcomes measurements for older people, as well as identify key-concepts and knowledge-gaps. The research questions were: How can patient-centered outcomes for older people be measured, and which patient-centered outcomes matters the most for the older people?
    METHODS: Scoping review.
    METHODS: Search for relevant publications in electronical databases, grey literature databases and websites from year 2000 to 2021. Two reviewers independently screened titles and abstracts, followed by full text review and extraction of data using a data extraction framework.
    RESULTS: Eighteen studies were included, of which six with involvement of patients and/or experts in the process on determine the outcomes. Outcomes that matter the most to older people was interpreted as: access to- and experience of care, autonomy and control, cognition, daily living, emotional health, falls, general health, medications, overall survival, pain, participation in decision making, physical function, physical health, place of death, social role function, symptom burden, and time spent in hospital. The most frequently mentioned/used outcomes measurements tools were the Adult Social Care Outcomes Toolkit (ASCOT), EQ-5D, Gait Speed, Katz- ADL index, Patient Health Questionnaire (PHQ9), SF/RAND-36 and 4-Item Screening Zarit Burden Interview.
    CONCLUSIONS: Few studies have investigated the older people\'s opinion of what matters the most to them, which forms a knowledge-gap in the field. Future research should focus on providing older people a stronger voice in what they think matters the most to them.
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  • 文章类型: Journal Article
    空间忽视通常发生在中风后,根据类型和严重程度产生不同的影响。有将近300种评估忽视的工具,然而,对这些工具的心理测量特性缺乏了解。本系统综述的目的,注册于Prospero(CRD42021271779),是确定评估空间忽视的证据质量,按忽略子类型分类。从数据库开始,于2022年5月3日搜索了以下数据库:OvidEmcare,Embase,OvidMEDLINE,APAPsycINFO,WebofScience(SCI-EXPANDED;SSCI;A&HCI;ESCI)和Scopus。所有成人卒中后的主要同行评审研究(>5名参与者),报告了33种常用的忽视评估工具的任何心理测量特性。使用基于COSMIN(基于CONSensus的健康测量指标选择标准)的偏见风险工具来评估研究的方法学质量,并总结每种工具的心理测量特性。包括164篇文章,共有12463人中风。证据的总体质量较差,没有一个工具具有高质量的有效性和可靠性证据。11种工具显示出一些希望,因为它们满足了有效性和可靠性的良好测量特性的最低标准。
    Spatial neglect commonly occurs after a stroke, resulting in diverse impacts depending on the type and severity. There are almost 300 tools for assessing neglect, yet there is a lack of knowledge on the psychometric properties of these tools. The objective of this systematic review, registered on Prospero (CRD42021271779), was to determine the quality of the evidence for assessing spatial neglect, categorized by neglect subtype. The following databases were searched on 3rd May 2022 from database inception: Ovid Emcare, Embase, Ovid MEDLINE, APA PsycINFO, Web of Science (SCI-EXPANDED; SSCI; A&HCI; ESCI) and Scopus. All primary peer-reviewed studies (>5 participants) of adults post stroke, reporting any psychometric property of 33 commonly used neglect assessment tools were included. The COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) risk of bias tool was used to assess the methodological quality of the studies and summarize the psychometric properties of each tool. 164 articles were included, with a total of 12,463 people with stroke. The general quality of the evidence was poor and no one tool had high-quality evidence of both validity and reliability. Eleven tools show some promise as they meet the minimum criteria for good measurement properties for both validity and reliability.
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  • 文章类型: Comparative Study
    该研究旨在评估现有文献,并比较使用经腹膜(TP)和腹膜后(RP)入路的机器人辅助肾部分切除术(RAPN)治疗后外侧肾肿瘤的围手术期结果。系统地搜索了Embase,PubMed,和Cochrane图书馆的文献数据库。合格的研究是比较TP-RAPN和RP-RAPN治疗后外侧肾肿瘤的研究。使用ReviewManager5.3对纳入研究的数据进行分析和总结,包括比较基线患者和肿瘤特征,术中和术后结果,和肿瘤结果。分析包括五项符合纳入标准的研究,共有1440例患者(814例接受RP-RAPN,626例接受TP-RAPN)。两组在年龄上无显著差异,性别,BMI,R.E.N.A.L.得分,和肿瘤大小。值得注意的是,与TP-RAPN相比,RP-RPN组手术时间(OT)较短(MD:17.25,P=0.01),住院时间(LOS)(MD:0.37,P<0.01),估计失血量(EBL)较低(MD:15.29,P<0.01)。然而,两组患者热缺血时间(WIT)差异无统计学意义(MD:-0.34,P=0.69),总并发症(RR:1.25,P=0.09),主要并发症(Clavien-Dindo分级≥3)(RR:0.97,P=0.93),和阳性手术切缘(PSM)(RR:1.06,P=0.87)。系统评价和荟萃分析提示RP-RPN在OT方面可能更有利于后外侧肾肿瘤。EBL,还有LOS,但是在WIT中没有发现显着差异,整体并发症,主要并发症,和PSM。两种手术方法都是安全的,但是最终的优势仍然不确定。
    The study aims to assess the available literature and compare the perioperative outcomes of robotic-assisted partial nephrectomy (RAPN) for posterior-lateral renal tumors using transperitoneal (TP) and retroperitoneal (RP) approaches. Systematically searched the Embase, PubMed, and Cochrane Library databases for literature. Eligible studies were those that compared TP-RAPN and RP-RAPN for posterior-lateral renal tumors. The data from the included studies were analyzed and summarized using Review Manager 5.3, which involved comparing baseline patient and tumor characteristics, intraoperative and postoperative outcomes, and oncological outcomes. The analysis included five studies meeting the inclusion criteria, with a total of 1440 patients (814 undergoing RP-RAPN and 626 undergoing TP-RAPN). Both groups showed no significant differences in age, gender, BMI, R.E.N.A.L. score, and tumor size. Notably, compared to TP-RAPN, the RP-RAPN group demonstrated shorter operative time (OT) (MD: 17.25, P = 0.01), length of hospital stay (LOS) (MD: 0.37, P < 0.01), and lower estimated blood loss (EBL) (MD: 15.29, P < 0.01). However, no significant differences were found between the two groups in terms of warm ischemia time (WIT) (MD: -0.34, P = 0.69), overall complications (RR: 1.25, P = 0.09), major complications (the Clavien-Dindo classification ≥ 3) (RR: 0.97, P = 0.93), and positive surgical margin (PSM) (RR: 1.06, P = 0.87). The systematic review and meta-analysis suggests RP-RAPN may be more advantageous for posterior-lateral renal tumors in terms of OT, EBL, and LOS, but no significant differences were found in WIT, overall complications, major complications, and PSM. Both surgical approaches are safe, but a definitive advantage remains uncertain.
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  • 文章类型: Systematic Review
    背景:无家可归与显著的健康差异有关。传统的卫生服务往往无法满足无家可归者的独特需求和生活经验,在规划卫生服务时也没有包括参与性设计。这项范围审查旨在检查在寻求和接受医疗保健时经历无家可归的人最常报告的患者经历领域,并确定用于衡量该队列患者体验的现有调查。
    方法:根据PRISMA-ScR2020声明进行了范围审查。2022年12月1日检索数据库:MEDLINE,EMBASE,APAPsychINFO和CINAHL。包括针对无家可归人群的研究,医疗保健服务和患者体验,主要研究,从2010年开始以英文出版。根据国家健康与护理卓越研究所针对无家可归者的护理指南的修改框架,提取并综合了定性论文和发现。医学研究所框架和Lachman的多维质量模型。有无家可归经历的人被聘为研究团队的一部分。
    结果:纳入32项研究。其中,22是定性的,七种定量方法和三种混合方法,来自美利坚合众国(n=17),英国(n=5),澳大利亚(n=5)和加拿大(n=4)。卫生服务范围从初级医疗保健到门诊管理,急性护理,紧急护理和医院医疗保健。在定性论文中,\'可访问和及时\'的域,\'以人为本\',“尊严和尊重”和“仁慈与同情”的价值观最为普遍。在确定的三项患者体验调查中,“可访问和及时”和“以人为本”是最常见的域。最不经常突出显示的域和值是“公平”和“整体”。没有问题解决\“安全\”域。
    结论:初级保健质量-无家可归者问卷最好地反映了在经历无家可归者的定性研究中强调的医疗保健提供的优先事项。经历无家可归的人在寻求医疗保健时表示为重要的最常被引用的领域和价值观在三个调查工具中都有不同程度的反映。研究结果表明,在寻求有关医疗保健经验和“安全”领域的反馈时,“善良和同情”的原则需要进一步强调,\'公平\',和“效率”在现有的患者体验调查中没有得到充分体现。
    BACKGROUND: Homelessness is associated with significant health disparities. Conventional health services often fail to address the unique needs and lived experience of homeless individuals and fail to include participatory design when planning health services. This scoping review aimed to examine areas of patient experience that are most frequently reported by people experiencing homelessness when seeking and receiving healthcare, and to identify existing surveys used to measure patient experience for this cohort.
    METHODS: A scoping review was undertaken reported according to the PRISMA-ScR 2020 Statement. Databases were searched on 1 December 2022: MEDLINE, EMBASE, APA PsychINFO and CINAHL. Included studies focused on people experiencing homelessness, healthcare services and patient experience, primary research, published in English from 2010. Qualitative papers and findings were extracted and synthesized against a modified framework based on the National Institute for Health and Care Excellence guidelines for care for people experiencing homelessness, the Institute of Medicine Framework and Lachman\'s multidimensional quality model. People with lived experience of homelessness were employed as part of the research team.
    RESULTS: Thirty-two studies were included. Of these, 22 were qualitative, seven quantitative and three mixed methods, from the United States of America (n = 17), United Kingdom (n = 5), Australia (n = 5) and Canada (n = 4). Health services ranged from primary healthcare to outpatient management, acute care, emergency care and hospital based healthcare. In qualitative papers, the domains of \'accessible and timely\', \'person-centred\', and values of \'dignity and respect\' and \'kindness with compassion\' were most prevalent. Among the three patient experience surveys identified, \'accessible and timely\' and \'person-centred\' were the most frequent domains. The least frequently highlighted domains and values were \'equitable\' and \'holistic\'. No questions addressed the \'safety\' domain.
    CONCLUSIONS: The Primary Care Quality-Homeless questionnaire best reflected the priorities for healthcare provision that were highlighted in the qualitative studies of people experiencing homelessness. The most frequently cited domains and values that people experiencing homelessness expressed as important when seeking healthcare were reflected in each of the three survey tools to varying degrees. Findings suggest that the principles of \'Kindness and compassion\' require further emphasis when seeking feedback on healthcare experiences and the domains of \'safety\', \'equitable\', and \'efficiency\' are not adequately represented in existing patient experience surveys.
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  • 文章类型: Review
    目的:本研究旨在系统回顾评估成人呼吸功能失调(DB)的结局指标的心理测量特性。
    方法:包括关于开发和评估测量特性以评估DB的研究。该研究调查了1990年至2022年2月之间发表的实证研究,并于2023年5月在Cochrane图书馆系统评价数据库和Cochrane中央对照试验登记册中进行了更新搜索。OvidMedline(完整),OvidExcertaMedica数据库,奥维德联合药物和补充药物数据库,护理和相关健康文献的Ebscohost累积指数和物理治疗证据数据库。纳入研究的方法学质量采用基于CONCEN的健康测量指标选择标准(COSMIN)偏倚风险检查表进行评估。数据分析和综合遵循COSMIN方法,以审查结果测量工具。
    结果:16项研究符合纳入标准,并确定了10项结果指标。使用COSMIN评估了这些结果测量的心理测量特性。奈梅亨问卷(NQ)是唯一对内容有效性有“足够”评级的结果衡量标准,内部一致性,信度和结构效度。所有其他结局指标均未报告患者组的内容有效性特征。
    结论:NQ在评估DB时显示出高质量的有效性和可靠性证据。我们的评论表明,使用NQ评估支气管哮喘和过度换气综合征患者的DB是有帮助的。在考虑将其用于临床之前,需要对其余结果指标进行进一步的心理测量特性评估。
    CRD42021274960。
    OBJECTIVE: This study aimed to systematically review the psychometric properties of outcome measures that assess dysfunctional breathing (DB) in adults.
    METHODS: Studies on developing and evaluating measurement properties to assess DB were included. The study investigated the empirical research published between 1990 and February 2022, with an updated search in May 2023 in the Cochrane Library database of systematic reviews and the Cochrane Central Register of Controlled Trials, the Ovid Medline (full), the Ovid Excerta Medica Database, the Ovid allied and complementary medicines database, the Ebscohost Cumulative Index to Nursing and Allied Health Literature and the Physiotherapy Evidence Database. The included studies\' methodological quality was assessed using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) risk of bias checklist. Data analysis and synthesis followed the COSMIN methodology for reviews of outcome measurement instruments.
    RESULTS: Sixteen studies met the inclusion criteria, and 10 outcome measures were identified. The psychometric properties of these outcome measures were evaluated using COSMIN. The Nijmegen Questionnaire (NQ) is the only outcome measure with \'sufficient\' ratings for content validity, internal consistency, reliability and construct validity. All other outcome measures did not report characteristics of content validity in the patients\' group.
    CONCLUSIONS: The NQ showed high-quality evidence for validity and reliability in assessing DB. Our review suggests that using NQ to evaluate DB in people with bronchial asthma and hyperventilation syndrome is helpful. Further evaluation of the psychometric properties is needed for the remaining outcome measures before considering them for clinical use.
    UNASSIGNED: CRD42021274960.
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  • 文章类型: Journal Article
    胰腺外分泌功能不全(EPI)源于功能性胰腺酶的缺乏,随之而来的消化不良和营养不良。EPI与其他疾病具有共同的临床症状和表现,并且是受影响的个体的相当大的负担。在这篇叙述性评论中,我们分析了文献,以确定与EPI一起生活的相关出版物,包括个性化证据差距的范围,包括那些与症状有关的,健康相关生活质量(HRQoL),情感功能,疾病负担,合并症的存在,和使用胰酶替代疗法(PERT)。腹痛是最突出的症状之一。在EPI中HRQoL受到影响,但是没有文章检查情绪功能。报告的合并症涉及其他胰腺疾病,糖尿病,胃肠道疾病,肌肉减少症和骨质减少症,心血管疾病,细菌过度生长,和营养缺乏。发现PERT可有效改善EPI症状,并且大多数人都能很好地耐受。我们的综述显示,缺乏关于患者使用EPI经验的文献证据,如情绪功能和疾病负担。我们还发现缺乏关于PERT长期影响的研究,以及有助于促进对疾病及其进展的理解的研究,风险/缓解因素,和合并症。未来的研究应该解决这些确定的差距。
    Exocrine pancreatic insufficiency (EPI) stems from a deficiency of functional pancreatic enzymes with consequent maldigestion and malnutrition. EPI shares clinical symptoms and manifestations with other disorders and is a considerable burden to individuals affected. In this narrative review, we analyzed the literature to identify relevant publications on living with EPI with the scope of individuating evidence gaps, including those related to symptoms, health-related quality of life (HRQoL), emotional functioning, disease burden, presence of comorbidities, and the use of pancreatic enzyme replacement therapy (PERT). Abdominal pain emerged as one of the most prominent symptoms. HRQoL was affected in EPI, but no articles examined emotional functioning. Comorbidities reported involved other pancreatic disorders, diabetes, gastrointestinal disorders, sarcopenia and osteopenia, cardiovascular disorders, bacterial overgrowth, and nutritional deficiencies. PERT was found to be effective in improving EPI symptoms and was well tolerated by most individuals. Our review revealed a dearth of literature evidence on patients\' experience with EPI, such as emotional functioning and disease burden. We also revealed that studies on long-term effects of PERT are missing, as are studies that would help advance the understanding of the disease and its progression, risk/mitigating factors, and comorbidities. Future studies should address these identified gaps.
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  • 文章类型: Journal Article
    目的:POLST广泛用于重症患者的护理中,以记录在预先护理计划(ACP)对话中做出的决定作为可操作的医疗命令。我们对现有研究进行了综合审查,以更好地了解POLST使用与关键ACP结果之间的关联,并确定未来研究的方向。
    方法:综合综述。
    方法:不适用。
    方法:我们使用POLST程序的名称查询PubMed和CINAHL数据库,以确定POLST的研究。我们提取了研究信息并评估了研究设计质量。研究结果使用国际ACP成果框架进行分类:过程,行动,护理质量,健康状况,和医疗保健利用。
    结果:在确定的94项POLST研究中,38(40%)的研究设计质量至少处于中等水平,15(16%)包括POLST与非POLST患者组之间的比较。70例ACP结局中有40例(57%)组间存在显着差异。显著结局比例最高的是护理质量(19个中的15个或79%)。在护理质量的子域分析中,POLST的使用与治疗和文件之间的一致性(18个中的14个或78%)以及与文件一致的偏好(1个中的1个或100%)显着相关。行动结果域的阳性率在结果域中第二高;12个行动结果中有9个(75%)是显着的。医疗利用结果是最频繁评估的,大约一半(35%中的16个或46%)是显著的。健康状况结果不显著(4个中的0个或0%),并且没有确定过程结果。
    结论:本综述的研究结果表明,POLST的使用与护理质量和行动结果显著相关,尽管在非随机研究中。未来对POLST的研究应集中在前瞻性混合方法研究和高质量的务实试验上,以评估广泛的个人和卫生系统水平的结果。
    OBJECTIVE: POLST is widely used in the care of seriously ill patients to document decisions made during advance care planning (ACP) conversations as actionable medical orders. We conducted an integrative review of existing research to better understand associations between POLST use and key ACP outcomes as well as to identify directions for future research.
    METHODS: Integrative review.
    METHODS: Not applicable.
    METHODS: We queried PubMed and CINAHL databases using names of POLST programs to identify research on POLST. We abstracted study information and assessed study design quality. Study outcomes were categorized using the international ACP Outcomes Framework: Process, Action, Quality of Care, Health Status, and Healthcare Utilization.
    RESULTS: Of 94 POLST studies identified, 38 (40%) had at least a moderate level of study design quality and 15 (16%) included comparisons between POLST vs non-POLST patient groups. There was a significant difference between groups for 40 of 70 (57%) ACP outcomes. The highest proportion of significant outcomes was in Quality of Care (15 of 19 or 79%). In subdomain analyses of Quality of Care, POLST use was significantly associated with concordance between treatment and documentation (14 of 18 or 78%) and preferences concordant with documentation (1 of 1 or 100%). The Action outcome domain had the second highest positive rate among outcome domains; 9 of 12 (75%) Action outcomes were significant. Healthcare Utilization outcomes were the most frequently assessed and approximately half (16 of 35 or 46%) were significant. Health Status outcomes were not significant (0 of 4 or 0%), and no Process outcomes were identified.
    CONCLUSIONS: Findings of this review indicate that POLST use is significantly associated with a Quality of Care and Action outcomes, albeit in nonrandomized studies. Future research on POLST should focus on prospective mixed methods studies and high-quality pragmatic trials that assess a broad range of person and health system-level outcomes.
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  • 文章类型: English Abstract
    超敏反应,牙齿外观改变和骨折是磨牙门牙矿化不足的常见问题,会产生功能和社会情绪问题。
    评估MIH对儿童和青少年口腔健康相关生活质量的影响。
    在电子数据库中进行了系统的书目搜索(Pubmed,认识论,牙科和口腔科学来源和虚拟健康图书馆)。在2016-2022年间进行的英语或西班牙语观察性研究,评估了磨牙门牙入矿不足的儿童和青少年的生活质量。大多数研究具有良好的方法学质量。
    在96项确定的研究中,合成中包括13个。磨牙门牙矿化不足的最常见诊断标准是欧洲儿科牙科学会的指数,有9项研究报告了该疾病的严重程度。最广泛使用的生活质量量表是儿童感知问卷(CPQ)。根据孩子们的看法,受影响最大的维度是“口腔症状”和“情绪健康”,根据父母的说法,他们是“口腔症状”和“功能局限性”。磨牙门牙入矿不足的女孩口腔健康相关生活质量较差。
    磨牙门牙入矿不足对儿童口腔健康相关生活质量的负面影响似乎在父母和孩子的感知之间有所不同。
    UNASSIGNED: Hypersensitivity, altered dental appearance and fractures are common problems in molar incisor hypomineralization that generate functional and socio-emotional problems.
    UNASSIGNED: to evaluate the effect of MIH on oral health-related quality of life in children and adolescents.
    UNASSIGNED: A systematic bibliographic search was carried out in electronic databases (Pubmed, Epistemonikos, Dentistry & Oral Sciences Source and Virtual Health Library). Observational studies in English or Spanish conducted between 2016-2022 that evaluated the quality of life of children and adolescents with molar incisor hypomineralization were identified. Most studies were of good methodological quality.
    UNASSIGNED: Of 96 identified studies, thirteen were included in the synthesis. The most frequent diagnostic criterion for hypomineralization of molar incisors was the index of the European Academy of Pediatric Dentistry and nine studies reported the severity of the disease. The most widely used scale to measure quality of life was the Child Perception Questionnaire (CPQ). According to the children\'s perception, the most affected dimensions were \"Oral Symptoms\" and \"Emotional Well-Being\", according to the parents they were \"Oral Symptoms\" and \"Functional Limitations\". Girls with molar incisor hypomineralization had worse oral health-related quality of life.
    UNASSIGNED: The negative effect of molar incisor hypomineralization on children\'s oral health-related quality of life seems to vary between the perception of parents and children.
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  • 文章类型: Systematic Review
    背景:免疫球蛋白A肾病(IgAN)是一种可导致进行性肾脏疾病的肾脏疾病。目前,缺乏对IgAN患者所经历的症状和影响的全面概述,这将有助于为临床试验中使用的符合目的临床结局评估(COA)的选择或发展提供信息.这项研究的目的是建立成人和儿童IgAN患者体验的概念模型,包括疾病体征和症状,治疗副作用,以及对运作和福祉的影响。
    方法:本研究包括对诊断为IgAN的成人和儿童的定性研究的系统评价和主题分析。通过期刊文章的电子数据库搜索确定了数据源(MEDLINE,Embase,PsycINFO;2021年6月),手工搜索会议记录,患者倡导团体网站,灰色文学非英语文章被排除在外。识别数据(患者/护理人员报价,作者总结,和对患者经历的解释)是从文章中提取的。提取的数据进行定性分析,由ATLAS协助。tiv7.代码被应用于数据;概念(即,症状)被确定,named,和精致。通过将相关概念分组到域中,开发了一个概念模型。
    结果:总计,确定了五个来源进行分析:两篇期刊文章,两个在线的病人故事选集,和一个患者组织赞助的“患者之声”会议报告。概念模型症状领域包括肿胀/浮肿(水肿),疼痛/疼痛/不适,疲劳,体重增加,睡眠问题,泌尿问题,还有肠胃问题.影响领域包括情感/心理健康,日常生活的身体功能/活动,社会功能,工作/学校,和关系。
    结论:对已发表的定性文献的二次分析允许开发一种描述IgAN患者经历的新型概念模型;然而,它的深度受到缺乏可用文献的限制。建议进一步的定性研究来完善和/或确认概念和领域,确定它们之间的任何关系,并探索对患者最有意义的结果。完善的模型将提供一个有用的工具来通知选择,发展,和/或COAs的修订,用于未来的IgAN临床试验。
    BACKGROUND: Immunoglobulin A nephropathy (IgAN) is a kidney disorder that can lead to progressive kidney disease. Currently, there lacks a comprehensive overview of the symptoms and impacts experienced by those living with IgAN that would help inform the selection or development of fit-for-purpose clinical outcome assessments (COA) to be used in clinical trials. The aim of this study was to develop a conceptual model of the adult and pediatric patient experience of IgAN, including disease signs and symptoms, treatment side effects, and impact on functioning and well-being.
    METHODS: This study comprised a systematic review and thematic analysis of qualitative studies with adults and children diagnosed with IgAN. Data sources were identified through an electronic database search of journal articles (MEDLINE, Embase, PsycINFO; June 2021), hand-searching of conference proceedings, patient advocacy group websites, and gray literature. Non-English articles were excluded. Identified data (patient/caregiver quotes, author summaries, and interpretations of patient experiences) were extracted from articles. Extracted data were qualitatively analyzed, aided by ATLAS.ti v7. Codes were applied to data; concepts (i.e., symptoms) were identified, named, and refined. A conceptual model was developed by grouping related concepts into domains.
    RESULTS: In total, five sources were identified for analysis: two journal articles, two online anthologies of patient stories, and one patient organization-sponsored \"Voice of the Patient\" meeting report. Conceptual model symptom domains included swelling/puffiness (edema), pain/aches/discomfort, fatigue, weight gain, sleep problems, urinary problems, and gastrointestinal problems. Impact domains included emotional/psychological well-being, physical functioning/activities of daily living, social functioning, work/school, and relationships.
    CONCLUSIONS: Secondary analysis of published qualitative literature permitted development of a novel conceptual model depicting the patient experience of IgAN; however, its depth is limited by a lack of available literature. Further qualitative research is recommended to refine and/or confirm the concepts and domains, determine any relationships between them, and explore the outcomes that are most meaningful to patients. The refined model will provide a useful tool to inform the selection, development, and/or amendment of COAs for use in future IgAN clinical trials.
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