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Calcium Carbonate as a Potential Intervention to Prevent Labor Dystocia: Narrative Review of the Literature. 碳酸钙作为预防难产的潜在干预措施:文献综述。
IF 1.7 Pub Date : 2023-01-01 DOI: 10.17294/2330-0698.2010
Sabahat Raees, Marie Forgie, Rita Mitchell, Emily Malloy

Anecdotally, there are attestations from clinicians of calcium carbonate being used successfully for laboring people experiencing labor dystocia. The goal of this narrative review was to provide a synopsis of pertinent literature on calcium use in obstetrics to explore the potential benefit of calcium carbonate as a simple and low-cost intervention for prevention or treatment of labor dystocia. To answer how calcium and carbonate physiologically contribute to myometrium contractility, we conducted a literature search of English-language peer-reviewed articles, with no year limitation, consisting of the keywords "calcium," "calcium carbonate," "calcium gluconate," "pregnancy," "hemorrhage," and variations of "smooth muscle contractility" and "uterine contractions." Though no overt evidence on calcium carbonate's ability to prevent labor dystocia was identified; relevant information was found regarding smooth muscle contractility, calcium's influence on uterine muscle contractility, and carbonate's potential impact on reducing amniotic fluid lactate levels to restore uterine contractility during labor. Studies reporting the potential effectiveness of calcium gluconate and sodium bicarbonate in preventing labor dystocia offer background, safety information, and rationale for a future randomized control trial to evaluate the ability of calcium carbonate to prevent labor dystocia and reduce rates of cesarean section.

有趣的是,有临床医生证明碳酸钙被成功地用于劳动人民经历难产。这篇叙述性综述的目的是提供有关钙在产科应用的相关文献摘要,以探讨碳酸钙作为一种简单和低成本的干预措施预防或治疗难产的潜在益处。为了回答钙和碳酸钙在生理上如何促进肌层收缩,我们对英文同行评审的文章进行了文献检索,没有年份限制,包括关键词“钙”、“碳酸钙”、“葡萄糖酸钙”、“怀孕”、“出血”以及“平滑肌收缩”和“子宫收缩”的变化。虽然没有明确的证据表明碳酸钙能够预防难产;我们发现了平滑肌收缩力、钙对子宫肌肉收缩力的影响以及碳酸盐对降低羊水乳酸水平以恢复分娩时子宫收缩力的潜在影响。研究报告了葡萄糖酸钙和碳酸氢钠预防难产的潜在有效性,为未来评估碳酸钙预防难产和降低剖宫产率的随机对照试验提供了背景、安全信息和基本原理。
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引用次数: 0
Impact of Perioperative Dexamethasone on Hospital Length of Stay and Glycemic Control in Patients With Type 2 Diabetes Undergoing Total Hip Arthroplasty. 地塞米松对2型糖尿病全髋关节置换术患者住院时间和血糖控制的影响
IF 1.7 Pub Date : 2023-01-01 DOI: 10.17294/2330-0698.1971
Vanessa Williams, Mohammad J Uddin Ansari, Amruta Jaju, Stacey Ward, Daniel O'Keefe, Jumana Abdelkarim, Nicole Montes, Ula Tarabichi, Albert Botchway, Michael G Jakoby

Purpose: This study aimed to evaluate effects of perioperative dexamethasone on hospital length of stay (LOS) and glycemic control for patients with type 2 diabetes mellitus undergoing total hip arthroplasty (THA).

Methods: We performed retrospective case review of THA performed in adults (≥18 years old) with type 2 diabetes at Springfield Memorial Hospital (Springfield, IL) immediately before (2013), during (2014), and after (2015) publication of consensus guidelines for use of perioperative dexamethasone. Hospital LOS was the primary endpoint. Capillary blood glucose by hospital day, proportion of patients treated with insulin, and median insulin dose by hospital day were secondary endpoints.

Results: A total of 209 patients were included: 109 not dosed with dexamethasone ("no dexamethasone"), and 100 treated with perioperative dexamethasone. The most common dose of dexamethasone was 4 mg (63% of patients). Mean (95% CI) reduction in adjusted hospital LOS for dexamethasone-treated patients, compared to controls, was -2.8 (-3.7 to -1.9) days for all patients, -1.6 (-2.7 to -0.5) days for those with arthritis as the indication for THA, and -4.0 (-5.9 to -2.1) days for those with fracture as indication for THA (P<0.001 for all). Glycemic control measured by median capillary blood glucose was no different or slightly better in the dexamethasone group than the no dexamethasone group, except for postoperative day 1 among patients treated with insulin prior to surgery.

Conclusions: Perioperative dexamethasone significantly reduces hospital LOS for patients with type 2 diabetes undergoing THA, with modest effects on hyperglycemia.

目的:本研究旨在评价地塞米松对2型糖尿病患者全髋关节置换术(THA)围手术期住院时间(LOS)和血糖控制的影响。方法:我们对在Springfield纪念医院(Springfield, IL)接受2型糖尿病成人(≥18岁)THA治疗的病例进行回顾性分析,这些患者在(2013年)、(2014年)和(2015年)发表地塞米松围手术期使用共识指南之前、期间和之后接受THA治疗。医院LOS是主要终点。住院日的毛细血管血糖、接受胰岛素治疗的患者比例和住院日的中位胰岛素剂量是次要终点。结果:共纳入209例患者:109例未使用地塞米松(“未使用地塞米松”),100例围手术期使用地塞米松。地塞米松最常见的剂量为4mg(63%的患者)。与对照组相比,地塞米松治疗的患者调整后的医院LOS平均(95% CI)减少为:所有患者-2.8(-3.7至-1.9)天,关节炎患者-1.6(-2.7至-0.5)天,骨折患者-4.0(-5.9至-2.1)天(pp结论:围手术期地塞米松可显著降低2型糖尿病患者接受THA的医院LOS,对高血糖的影响较小)。
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引用次数: 0
Identifying Patient Perceptions of Inequality in Public Health Care Services: Evidence From a Single Indian Administrative District. 确定患者对公共卫生保健服务不平等的看法:来自单一印度行政区的证据。
IF 1.7 Pub Date : 2023-01-01 DOI: 10.17294/2330-0698.2013
Barnali Biswas, Piyal Basu Roy

Purpose: Assessment of patient experiences is an essential step to revamp patient-centered care and identify systemic effectiveness as part of universal health coverage. This paper analyzes the variation of health care at different levels of the public health care system in India by measuring patients' experience with the care they have received in the Alipurduar district of India.

Methods: From May 2021 to April 2022, stratified sampling technique was applied to collect primary data from 450 patients having different health problems from different levels of the public health care system. In addition, Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey results were used to evaluate patient experience, with the reliability of questions measured by Cronbach's alpha. Collected data were categorized with the help of exploratory factor analysis; after which, analysis of variance and post-hoc tests were applied to understand specific variations in patient experiences.

Results: This study identified that the services delivered in the health centers were not suitable (6.160 out of 10) to fulfill the needs of the patients. Among the three domains of health care services - namely, proficiency, tangibility, and information - the experience of patients significantly varied (P<0.001) when comparing primary, secondary, and tertiary levels of the public health care system.

Conclusions: Patients receiving services from the centers under the tertiary level have expressed lesser satisfaction than those patients who have received care at primary or secondary levels because of excessive patient load, inadequate manpower, and other infrastructure deficits at the tertiary level.

目的:评估患者经验是改革以患者为中心的护理和确定作为全民健康覆盖一部分的系统有效性的重要步骤。本文通过测量患者在印度Alipurduar地区获得的护理经验,分析了印度不同级别公共卫生保健系统的医疗保健差异。方法:于2021年5月至2022年4月,采用分层抽样方法,收集来自不同层次公共卫生系统的450例不同健康问题患者的原始资料。此外,使用消费者对医疗服务提供者和系统的评估(CAHPS)调查结果来评估患者体验,并使用Cronbach's alpha测量问题的可靠性。利用探索性因子分析对收集到的数据进行分类;之后,应用方差分析和事后检验来了解患者经历的具体变化。结果:本研究发现,卫生中心提供的服务不适合满足患者的需求(6.160 / 10)。在卫生保健服务的三个领域中,即熟练程度、有形性和信息,患者的体验差异显著(p结论:由于患者负荷过重、人力不足和三级其他基础设施不足,从三级以下中心接受服务的患者表达的满意度低于接受初级或二级中心服务的患者。
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引用次数: 0
Neighborhood Condition Prevalence Rates Correlate With COVID-19 Mortality in Milwaukee County, Wisconsin. 威斯康星州密尔沃基县社区状况患病率与COVID-19死亡率相关
IF 1.7 Pub Date : 2023-01-01 DOI: 10.17294/2330-0698.1967
George L Morris

Purpose: We sought to determine if census tract-level (ie, neighborhood) COVID-19 death rates in Milwaukee County correlated with the census tract-level condition prevalence rates (CPRs) for individual COVID-19 mortality risk.

Methods: This study used Milwaukee County-reported COVID-19 death rates per 100,000 lives for the 296 census tracts within the county to perform a linear regression with individual COVID-19 mortality risk CPR, mean age, racial composition of census tract (by percentage of non-White residents), and poverty (by percentage within census tract), followed by multiple regression with all 7 CPRs as well as the 7 CPRs combined with the additional demographic variables. CPR estimates were accessed from the Centers for Disease Control and Prevention 500 Cities Project. Demographics were accessed from the U.S. Census. The Milwaukee County Medical Examiner's office identified 898 deaths from COVID-19 in Milwaukee County from March 2020 to June 2021.

Results: Among the variables included, crude death rate demonstrated a statistically significant association with the 7 COVID-19 mortality risk CPRs (as analyzed collectively), census tract mean age, and several of the CPRs individually. The addition of census tract age, race, and poverty in multiple regression did not improve the association of the 7 CPRs with crude death rate.

Conclusions: Results from this population-level study indicated that census tracts with high COVID-19 mortality correlated with high-risk condition prevalence estimates within those census tracts, illustrating how health data collection and analysis at a census tract level could be helpful when planning pandemic-mitigating public health efforts.

目的:我们试图确定密尔沃基县人口普查区水平(即社区)COVID-19死亡率是否与人口普查区水平疾病患病率(CPRs)与个体COVID-19死亡风险相关。方法:本研究使用密尔沃基县报告的该县296个人口普查区每10万人的COVID-19死亡率,对个体COVID-19死亡风险CPR、平均年龄、人口普查区的种族构成(以非白人居民的百分比计算)和贫困(以人口普查区内的百分比计算)进行线性回归,然后对所有7个CPR以及7个CPR与其他人口统计学变量进行多元回归。美国疾病控制和预防中心的500个城市项目获得了CPR的估计数据。人口统计数据来自美国人口普查。密尔沃基县法医办公室确定,从2020年3月到2021年6月,密尔沃基县有898人死于COVID-19。结果:在所纳入的变量中,粗死亡率与7个COVID-19死亡风险cpr(集体分析)、人口普查区平均年龄以及个别cpr有统计学显著相关。在多元回归中加入人口普查区年龄、种族和贫困因素并没有改善7种cpr与粗死亡率的相关性。结论:这项人口水平研究的结果表明,高COVID-19死亡率的人口普查区与这些人口普查区内的高风险疾病患病率估计值相关,说明了人口普查区水平的卫生数据收集和分析如何有助于规划减轻大流行的公共卫生工作。
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引用次数: 0
Shifting Perspectives: A Qualitative Study to Understand Family Expectations at the Time of Their Child's Admission. 转变视角:一项了解孩子入学时家庭期望的定性研究。
IF 1.7 Pub Date : 2023-01-01 DOI: 10.17294/2330-0698.1947
RosaMarie Maiorella, Avital Fischer, Sumeet L Banker

Purpose: Patient-centered approaches to health care acknowledge the important role that families have in patients' lives. Shared expectations between families and providers have the potential to improve patient and family experience, hospital care, and outcomes. We aimed to understand families' expectations for their child's admission from the vantage point of the start of a hospital stay.

Methods: This qualitative research studied families of hospitalized children at a large pediatric tertiary care center. Family members were approached if their child was admitted to the general pediatrics team, was under 18 years of age, had a length of stay less than 5 days, and had an English-speaking family member present. Semi-structured interviews were conducted by study personnel during the inpatient stay and audio-recorded. Written transcripts were independently coded by multiple investigators to generate codes, which were reconciled via triangulation. Codes were translated into broad themes to provide insight into the views of the study population. An accompanying survey included demographic questions.

Results: We conducted 20 interviews with 23 parents of hospitalized children. Participants were 83% female, 35% White, 22% Black, 35% Hispanic, and 70% publicly insured. Participant responses led to identification of 4 themes: 1) setting the stage; 2) building trust and credibility; 3) partnering with families; and 4) maintaining frequent and transparent communication.

Conclusions: Findings suggest that families' priorities and expectations at the start of their inpatient stay focus on issues of trust, partnership, and communication. These concepts may help providers strengthen communication and create more meaningful partnerships with families.

目的:以患者为中心的卫生保健方法承认家庭在患者生活中的重要作用。家庭和医疗服务提供者之间的共同期望有可能改善患者和家庭的体验、医院护理和结果。我们的目的是从住院开始的有利位置了解家庭对孩子入院的期望。方法:本定性研究以某大型儿科三级护理中心住院儿童的家庭为研究对象。如果他们的孩子被普通儿科小组录取,年龄在18岁以下,住院时间少于5天,并且有讲英语的家庭成员在场,则与家庭成员联系。在住院期间由研究人员进行半结构化访谈并录音。书面记录由多个调查人员独立编码以生成代码,并通过三角测量进行协调。代码被翻译成广泛的主题,以深入了解研究人群的观点。附带的调查包括人口统计问题。结果:对23名住院患儿家长进行了20次访谈。参与者83%为女性,35%为白人,22%为黑人,35%为西班牙裔,70%为公共保险。参与者的回答导致了4个主题的确定:1)设置舞台;2)建立信任和信誉;3)与家庭合作;4)保持频繁和透明的沟通。结论:研究结果表明,家庭在住院治疗开始时的优先事项和期望集中在信任、伙伴关系和沟通问题上。这些概念可以帮助提供者加强沟通,并与家庭建立更有意义的伙伴关系。
{"title":"Shifting Perspectives: A Qualitative Study to Understand Family Expectations at the Time of Their Child's Admission.","authors":"RosaMarie Maiorella,&nbsp;Avital Fischer,&nbsp;Sumeet L Banker","doi":"10.17294/2330-0698.1947","DOIUrl":"https://doi.org/10.17294/2330-0698.1947","url":null,"abstract":"<p><strong>Purpose: </strong>Patient-centered approaches to health care acknowledge the important role that families have in patients' lives. Shared expectations between families and providers have the potential to improve patient and family experience, hospital care, and outcomes. We aimed to understand families' expectations for their child's admission from the vantage point of the start of a hospital stay.</p><p><strong>Methods: </strong>This qualitative research studied families of hospitalized children at a large pediatric tertiary care center. Family members were approached if their child was admitted to the general pediatrics team, was under 18 years of age, had a length of stay less than 5 days, and had an English-speaking family member present. Semi-structured interviews were conducted by study personnel during the inpatient stay and audio-recorded. Written transcripts were independently coded by multiple investigators to generate codes, which were reconciled via triangulation. Codes were translated into broad themes to provide insight into the views of the study population. An accompanying survey included demographic questions.</p><p><strong>Results: </strong>We conducted 20 interviews with 23 parents of hospitalized children. Participants were 83% female, 35% White, 22% Black, 35% Hispanic, and 70% publicly insured. Participant responses led to identification of 4 themes: 1) setting the stage; 2) building trust and credibility; 3) partnering with families; and 4) maintaining frequent and transparent communication.</p><p><strong>Conclusions: </strong>Findings suggest that families' priorities and expectations at the start of their inpatient stay focus on issues of trust, partnership, and communication. These concepts may help providers strengthen communication and create more meaningful partnerships with families.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9851390/pdf/jpcrr-10.1.13.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10576849","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
"Healing Can Be a Very Jagged Line": Reflections on Life as a COVID-19 Long Hauler. “康复可能是一条非常参差不齐的线”:对COVID-19长途跋涉者生活的反思。
IF 1.7 Pub Date : 2023-01-01 DOI: 10.17294/2330-0698.2000
Leah M Hecht, Rhonda Adams, Danielle Dutkiewicz, Debbie Radloff, Mallory N Wales, Jeffory Whitmer, Dana Murphy, Sara Santarossa

"Long COVID" - a term referring to COVID-19-associated symptoms and conditions (ie, sequelae) that remain or emerge after resolution of a SARS-CoV-2 infection - is a multifaceted condition about which little is known. As part of formalized patient-engaged research at a large Midwestern health system, patient stakeholders with long COVID (N=5) wrote stories based on their lived experience, as this was their preferred format for detailing their experience with the condition. These patient stakeholders reviewed one another's stories, identified relevant quotes, and provided opportunities for elaboration. Independently, a trained researcher extracted quotes from the stories, identified themes, and wove the quotes together to share the independent, yet similar, stories. Emergent themes were that of uncertainty about the symptomatology of long COVID and its effects on patients' mental health, physical functioning, family unit, self-identity, and future outlook. Further patient-engaged research on understanding the lived experience of long COVID may serve to advance knowledge and treatment. Health care providers caring for those with long COVID can benefit from listening and validating the stories of individuals suffering from this condition.

“长冠状病毒”是指在SARS-CoV-2感染消退后仍存在或出现的与COVID-19相关的症状和状况(即后遗症),是一种多方面的状况,人们对其知之甚少。作为中西部大型卫生系统中正式的患者参与研究的一部分,具有长COVID (N=5)的患者利益相关者根据他们的生活经历撰写了故事,因为这是他们详细描述其病情经历的首选格式。这些耐心的利益相关者回顾了彼此的故事,确定了相关的引用,并提供了详细阐述的机会。独立地,训练有素的研究人员从故事中提取引语,确定主题,并将引语编织在一起,分享独立但相似的故事。新冠肺炎的症状及其对患者心理健康、身体功能、家庭单位、自我认同和未来前景的影响的不确定性是新冠肺炎的新兴主题。进一步开展患者参与的研究,了解长期COVID的生活经历,可能有助于推进知识和治疗。照顾长冠状病毒感染者的卫生保健提供者可以从倾听和验证患有这种疾病的人的故事中受益。
{"title":"\"Healing Can Be a Very Jagged Line\": Reflections on Life as a COVID-19 Long Hauler.","authors":"Leah M Hecht,&nbsp;Rhonda Adams,&nbsp;Danielle Dutkiewicz,&nbsp;Debbie Radloff,&nbsp;Mallory N Wales,&nbsp;Jeffory Whitmer,&nbsp;Dana Murphy,&nbsp;Sara Santarossa","doi":"10.17294/2330-0698.2000","DOIUrl":"https://doi.org/10.17294/2330-0698.2000","url":null,"abstract":"<p><p>\"Long COVID\" - a term referring to COVID-19-associated symptoms and conditions (ie, sequelae) that remain or emerge after resolution of a SARS-CoV-2 infection - is a multifaceted condition about which little is known. As part of formalized patient-engaged research at a large Midwestern health system, patient stakeholders with long COVID (N=5) wrote stories based on their lived experience, as this was their preferred format for detailing their experience with the condition. These patient stakeholders reviewed one another's stories, identified relevant quotes, and provided opportunities for elaboration. Independently, a trained researcher extracted quotes from the stories, identified themes, and wove the quotes together to share the independent, yet similar, stories. Emergent themes were that of uncertainty about the symptomatology of long COVID and its effects on patients' mental health, physical functioning, family unit, self-identity, and future outlook. Further patient-engaged research on understanding the lived experience of long COVID may serve to advance knowledge and treatment. Health care providers caring for those with long COVID can benefit from listening and validating the stories of individuals suffering from this condition.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10117531/pdf/jpcrr-10.2.77.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9387743","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Exploring the Possible Phenomenon of Viral Interference Between the Novel Coronavirus and Common Respiratory Viruses. 探讨新型冠状病毒与常见呼吸道病毒之间可能存在的病毒干扰现象。
IF 1.7 Pub Date : 2023-01-01 DOI: 10.17294/2330-0698.1995
Spencer Deleveaux, Alexandria Clarke-Kregor, Xavier Fonseca-Fuentes, Essam Mekhaiel

At the peak of the 2021 wave of the SARS-CoV-2 alpha variant in North America, there was concern for a superimposed wave of viral respiratory infections. There was, however, an apparent shift in the usual epidemiology of these pathogens, especially during the traditional influenza season from approximately October 2020 to March 2021. This article seeks to briefly describe the epidemiology of notable respiratory pathogens during the first wave of the COVID-19 pandemic and to focus on one possible factor for the trends observed. There are many contributory elements to the observed viral trends, but in particular, we present a synopsis of the data supporting the phenomenon of viral interference in relation to the clinically relevant early variants of SARS-CoV-2 (ancestral lineage, alpha, delta, omicron). Viral interference has been implicated in previous pandemics and is currently not well characterized in the setting of the COVID-19 pandemic. It is important to understand this dynamic and its effect on the predominant variants of COVID-19 thus far so that we may appropriately consider its possible influence in patient pathology going forward.

在2021年北美SARS-CoV-2 α变体浪潮的高峰期,人们担心会出现病毒性呼吸道感染的叠加波。然而,这些病原体的通常流行病学发生了明显变化,特别是在大约2020年10月至2021年3月的传统流感季节期间。本文旨在简要描述在COVID-19大流行第一波期间值得注意的呼吸道病原体的流行病学,并重点关注观察到的趋势的一个可能因素。观察到的病毒趋势有许多促成因素,但我们特别提出了支持病毒干扰现象与临床相关的SARS-CoV-2早期变异(祖先谱系、α、δ、组粒)相关的数据摘要。病毒干扰与以往的大流行有关,目前在COVID-19大流行背景下尚未得到很好的描述。了解这种动态及其迄今为止对COVID-19主要变体的影响非常重要,以便我们可以适当地考虑其对患者病理学的可能影响。
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引用次数: 1
Patients and Families as Partners in Patient-Oriented Research: How Should They Be Compensated? 在面向患者的研究中,患者和家属作为合作伙伴:他们应该如何得到补偿?
IF 1.7 Pub Date : 2023-01-01 DOI: 10.17294/2330-0698.1975
Monika Novak-Pavlic, Jan Willem Gorter, Michelle P Phoenix, Samantha K Micsinszki, Kinga Pozniak, Lin Li, Linda Nguyen, Alice K Soper, Elaine Yuen Ling Kwok, Jael N Bootsma, Francine Buchanan, Hanae Davis, Sandra Abdel Malek, Karen M van Meeteren, Peter L Rosenbaum

Patient and family engagement has become a widely accepted approach in health care research. We recognize that research conducted in partnership with people with relevant lived experience can substantially improve the quality of that research and lead to meaningful outcomes. Despite the benefits of patient-researcher collaboration, research teams sometimes face challenges in answering the questions of how patient and family research partners should be compensated, due to the limited guidance and lack of infrastructure for acknowledging partner contributions. In this paper, we present some of the resources that might help teams to navigate conversations about compensation with their patient and family partners and report how existing resources can be leveraged to compensate patient and family partners fairly and appropriately. We also present some of our first-hand experiences with patient and family compensation and offer suggestions for research leaders, agencies, and organizations so that the health care stakeholders can collectively move toward more equitable recognition of patient and family partners in research.

患者和家属参与已成为医疗保健研究中广泛接受的方法。我们认识到,与有相关生活经验的人合作进行的研究可以大大提高研究的质量,并产生有意义的结果。尽管患者与研究人员的合作有好处,但由于指导有限和缺乏承认合作伙伴贡献的基础设施,研究团队有时在回答患者和家属研究合作伙伴应如何获得补偿的问题时面临挑战。在本文中,我们提供了一些资源,这些资源可能有助于团队与患者和家属合作伙伴进行关于补偿的对话,并报告如何利用现有资源公平适当地补偿患者和家属合作伙伴。我们还介绍了我们在患者和家属补偿方面的一些第一手经验,并为研究负责人、机构和组织提供建议,以便医疗保健利益相关者能够共同努力,更公平地承认研究中的患者和家属合作伙伴。
{"title":"Patients and Families as Partners in Patient-Oriented Research: How Should They Be Compensated?","authors":"Monika Novak-Pavlic,&nbsp;Jan Willem Gorter,&nbsp;Michelle P Phoenix,&nbsp;Samantha K Micsinszki,&nbsp;Kinga Pozniak,&nbsp;Lin Li,&nbsp;Linda Nguyen,&nbsp;Alice K Soper,&nbsp;Elaine Yuen Ling Kwok,&nbsp;Jael N Bootsma,&nbsp;Francine Buchanan,&nbsp;Hanae Davis,&nbsp;Sandra Abdel Malek,&nbsp;Karen M van Meeteren,&nbsp;Peter L Rosenbaum","doi":"10.17294/2330-0698.1975","DOIUrl":"https://doi.org/10.17294/2330-0698.1975","url":null,"abstract":"<p><p>Patient and family engagement has become a widely accepted approach in health care research. We recognize that research conducted in partnership with people with relevant lived experience can substantially improve the quality of that research and lead to meaningful outcomes. Despite the benefits of patient-researcher collaboration, research teams sometimes face challenges in answering the questions of how patient and family research partners should be compensated, due to the limited guidance and lack of infrastructure for acknowledging partner contributions. In this paper, we present some of the resources that might help teams to navigate conversations about compensation with their patient and family partners and report how existing resources can be leveraged to compensate patient and family partners fairly and appropriately. We also present some of our first-hand experiences with patient and family compensation and offer suggestions for research leaders, agencies, and organizations so that the health care stakeholders can collectively move toward more equitable recognition of patient and family partners in research.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10117530/pdf/jpcrr-10.2.82.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9381853","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 2
Comparison of Parental In-Person Visitation and Webcam Usage Patterns at a Single-Center Neonatal Intensive Care Unit. 在单中心新生儿重症监护病房父母亲自探视和网络摄像头使用模式的比较。
IF 1.7 Pub Date : 2023-01-01 DOI: 10.17294/2330-0698.1960
Shrea Goswami, Emily Mudd, John Chuo, Anirudha Das
Purpose Barriers to parents visiting the neonatal intensive care unit (NICU) in person for infant bonding include socioeconomic status, distance from NICU, and having children at home. Use of NICU bedside webcam can increase access to parent-infant interaction. This study aimed to describe the pattern of webcam logins by parents, relationship of logins to in-person visitation, and maternal factors affecting usage. Methods In this retrospective cohort study, data pertaining to parental webcam logins and in-person visitation, maternal screening for depression, anxiety, and stress, and family sociodemographics were collected from medical records. Relationships between chart variables and webcam or in-person visitation were measured using Pearson's correlation coefficient and Mann-Whitney U test, as applicable. Login data were obtained from weeks 2 through 5 of NICU stay of the infant, while depression, anxiety, and stress scores were obtained in the second week as standard procedure by a dedicated NICU social worker. Results A total of 59 mother-baby dyads were included. Percentage of days visited and webcam logins decreased from week 2 to week 5. A higher rate of webcam login was documented for all parents on days they did not visit in person. Parents who lived ≥15 miles away (P=0.004) and those with government insurance (P=0.01) visited in person significantly less, although webcam logins showed no difference between groups. One negative correlation was found between percentage of in-person visits and DASS-21 depression score (P=0.03), but no such correlation was seen with webcam logins. Conclusions Parents utilized NICU webcams to connect with their infants when unable to be at the bedside. Webcam use reduced visitation disparities known to be exacerbated by insurance status, home-to-hospital distance, and psychological distress.
目的:父母亲自前往新生儿重症监护病房(NICU)进行婴儿关系建立的障碍包括社会经济地位、与NICU的距离以及是否有孩子在家。使用新生儿重症监护室床边网络摄像头可以增加亲子互动的机会。本研究旨在探讨家长上网模式、上网与亲临探视的关系,以及影响家长上网的母亲因素。方法:在这项回顾性队列研究中,从医疗记录中收集了有关父母网络摄像头登录和亲自访问,母亲抑郁,焦虑和压力筛查以及家庭社会人口统计学的数据。图表变量与网络摄像头或亲自访问之间的关系使用Pearson相关系数和Mann-Whitney U检验(如适用)进行测量。从新生儿重症监护病房入住的第2周到第5周获得登录数据,而在第二周由专门的新生儿重症监护病房社会工作者作为标准程序获得抑郁,焦虑和压力评分。结果:共纳入59对母婴。从第2周到第5周,访问天数和网络摄像头登录的百分比有所下降。所有父母在没有亲自拜访的日子里都记录了更高的网络摄像头登录率。居住距离≥15英里的父母(P=0.004)和有政府保险的父母(P=0.01)亲自访问的次数明显减少,尽管网络摄像头登录在两组之间没有差异。面对面访问的百分比与DASS-21抑郁评分呈负相关(P=0.03),但与网络摄像头登录没有这种相关性。结论:当不能在床边时,父母使用NICU网络摄像头与婴儿联系。网络摄像头的使用减少了因保险状况、家到医院的距离和心理困扰而加剧的探视差异。
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引用次数: 0
Understanding Quality of Life in Patients With Acute Leukemia, a Global Survey. 了解急性白血病患者的生活质量,一项全球调查。
IF 1.7 Pub Date : 2023-01-01 DOI: 10.17294/2330-0698.1951
Zack Pemberton-Whiteley, Samantha Nier, Jan Geissler, Sophie Wintrich, Bregje Verhoeven, Rita O Christensen, Sam Salek, Esther Natalie Oliva, Tatyana Ionova, Jennie Bradley

Purpose: The Acute Leukemia Advocates Network (ALAN) sought to determine which factors are most associated with poor quality of life (QoL) in patients with acute leukemia and to determine key issues and unmet needs through administration of an online survey distributed worldwide via partner patient organizations.

Methods: ALAN developed a questionnaire informed by literature review and based extensively on the hematological malignancy-specific patient-reported outcomes (HM-PRO) measure to assess the impact of acute leukemia on QoL and its relationships with patients' demographics, disease state, disease impact, and support from health care professionals. Univariate and multivariable statistical analysis was used to investigate relationships between HM-PRO scores and the other factors.

Results: Of 552 respondents from 42 countries, 332 had acute myeloid leukemia, 139 had acute lymphoblastic leukemia, and 81 had acute promyelocytic leukemia (survey data collected in 2019). Younger age, female gender, and lower income were all significantly negatively associated with QoL. Weak or moderate correlations were observed between overall support, management, and impact of treatment and diagnosis of acute leukemia. Feeling isolated and having reduced ability to carry out physical or enjoyable activities were the most important individual factors, while the best predictors for QoL impact were age, gender, and income (model r2=0.16, complete case n=449).

Conclusions: Findings indicated key factors, particularly age, gender, and socioeconomic state, that clinicians responsible for the care of patients with acute leukemia should be aware of when designing support strategies. The importance of social functioning in relation to patient QoL also should be included in considerations.

目的:急性白血病倡导网络(ALAN)试图确定哪些因素与急性白血病患者生活质量差(QoL)最相关,并通过合作患者组织在全球范围内进行在线调查,确定关键问题和未满足的需求。方法:ALAN在文献回顾的基础上,广泛基于血液恶性肿瘤特异性患者报告结果(HM-PRO)测量,制定了一份调查问卷,以评估急性白血病对生活质量的影响及其与患者人口统计学、疾病状态、疾病影响和卫生保健专业人员支持的关系。采用单变量和多变量统计分析探讨HM-PRO评分与其他因素的关系。结果:来自42个国家的552名受访者中,332人患有急性髓性白血病,139人患有急性淋巴细胞白血病,81人患有急性早幼粒细胞白血病(调查数据收集于2019年)。年龄较小、女性性别、收入较低与生活质量均呈显著负相关。在急性白血病的总体支持、管理、治疗和诊断的影响之间观察到弱或中度相关性。感到孤立和进行体育活动或愉快活动的能力下降是最重要的个人因素,而对生活质量影响的最佳预测因素是年龄、性别和收入(模型r2=0.16,完整病例n=449)。结论:研究结果表明,在设计支持策略时,负责治疗急性白血病患者的临床医生应该意识到关键因素,特别是年龄、性别和社会经济状况。社会功能对患者生活质量的重要性也应纳入考虑范围。
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引用次数: 1
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Journal of Patient-Centered Research and Reviews
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