pros

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  • 文章类型: Journal Article
    背景:患者报告结果(PRO)正在成为乳腺癌护理提供的质量标志。患者报告经验(PRE)同样重要,但定性研究和文献方面的挑战导致有关肿瘤增生保乳手术(OPBCS)的数据有限.这项定性研究旨在探讨接受OPBCS的患者的经历。
    方法:对2015年至2021年在乌普萨拉大学医院乳腺科接受OPBCS的女性进行纵向随访。所有参与者都被邀请通过日记分享他们在PRO之外的经验。\“患者\”护理经验,术前和术后,以及他们认为重要的其他见解和想法被记录下来并进行了分析。叙事研究方法,随着主题分析,被雇用。
    结果:在122名女性中,60人(49.2%)希望进一步阐述他们在专业人员相关方面之外的经验。最常见的主题包括术后副作用,应对问卷的挑战,辅助治疗的不良反应,影响术前和术后整体健康状况的外部因素,以及对手术和医务人员的满意度。具体来说,26.7%的受访者表示,他们认为专业人员不够具体,有进一步的思考。
    结论:根据手术技术,患者没有报告不同的经历。他们的经验集中在PRO问卷中对整体性和潜在歧义的看法。记录PRE至关重要,因为它可以在乳腺癌治疗后进行个性化评估,从而加强以病人为中心的护理。
    BACKGROUND: Patient-reported outcomes (PROs) are emerging as a quality marker for breast cancer care provision. Patient-reported experience (PRE) is equally important, but challenges in qualitative research and documentation have resulted in limited data on oncoplastic breast-conserving surgery (OPBCS). This qualitative study aimed to explore the experiences of patients who underwent OPBCS.
    METHODS: Women who underwent OPBCS between 2015 and 2021 at the Breast Unit of Uppsala University Hospital were followed up longitudinally using PROs. All participants were invited to share their experiences beyond PROs through a \"diary.\" Patients\' experiences with care, pre- and postoperatively, and other insights and thoughts that they considered important were documented and analyzed. A narrative research methodology, along with thematic analysis, was employed.
    RESULTS: Of the 122 women, 60 (49.2 %) desired to further elaborate on their experiences beyond PROs-related aspects. The most common themes included postoperative side effects, challenges responding to questionnaires, adverse effects of adjuvant treatment, external factors contributing to the preoperative and postoperative overall health status, and satisfaction with the surgery and medical staff. Specifically, 26.7 % of the respondents stated that they felt that PROs were not adequately specific and had further reflections.
    CONCLUSIONS: Patients did not report different experiences depending on the operative technique. Their experience focused on the perception of wholeness and potential ambiguities in the PRO questionnaires. Documenting PRE is crucial, as it enables individualized assessment following breast cancer treatment, thereby strengthening patient-centered care.
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  • 文章类型: Journal Article
    背景:在癌症患者的临床研究中越来越多地使用电子患者报告结果(ePRO)的评估,并能够在患者的日常生活中进行结构化和标准化的数据收集。到目前为止,很少有研究或分析关注ePROs对患者的医疗益处。
    目的:当前的探索性分析旨在初步表明,与不使用真实世界护理应用程序的对照组相比,使用ConsiliumCare应用程序(最近更名为medidux;mobileHealthAG)对ePro的副作用进行结构化和定期自我评估对癌症患者的计划外咨询和住院的发生率具有可识别的影响。为了分析这一点,使用ConsiliumCare应用程序记录的癌症患者的计划外会诊和住院治疗的发生率,作为患者报告结局(PRO)研究的一部分,我们将其与在标准护理治疗期间在瑞士2个肿瘤中心收集的癌症患者的可比人群的相应数据进行回顾性比较.
    方法:PRO研究中接受新辅助或非治疗性全身治疗的癌症患者(本分析中包括178例)通过ConsiliumCare应用程序在90天的观察期内对副作用进行了自我评估。在这个时期,参与医师记录了计划外(紧急)会诊和住院情况.将这些事件的发生率与从瑞士2个肿瘤中心获得的一组癌症患者的回顾性数据进行比较。
    结果:两组患者在年龄和性别比例方面具有可比性,以及癌症实体和癌症分期联合委员会的分布。总的来说,每组139例患者接受化疗,39例接受其他治疗。看着所有的病人,Consilium组和对照组在每位患者的事件中没有发现显著差异(比值比0.742,90%CI0.455~1.206).然而,多元回归模型显示,Consilium组和"化疗"因子之间的相互作用项在5%水平上显著(P=.048).这激发了相应的亚组分析,表明在接受化疗的患者亚组中,干预组的风险相关降低。相应的比值比为0.53,90%CI0.288-0.957相当于Consilium组患者的风险减半,并表明临床相关效应在双侧10%水平上显著(P=.08,Fisher精确检验)。
    结论:PRO研究的计划外会诊和住院情况与来自癌症患者的可比队列的回顾性数据的比较表明,定期使用基于应用程序的ePRO对接受化疗的患者具有积极作用。这些数据将在正在进行的随机PRO2研究(在ClinicalTrials.gov;NCT05425550注册)中得到验证。
    背景:ClinicalTrials.govNCT03578731;https://www.clinicaltrials.gov/ct2/show/NCT03578731.
    RR2-10.2196/29271。
    BACKGROUND: The evaluation of electronic patient-reported outcomes (ePROs) is increasingly being used in clinical studies of patients with cancer and enables structured and standardized data collection in patients\' everyday lives. So far, few studies or analyses have focused on the medical benefit of ePROs for patients.
    OBJECTIVE: The current exploratory analysis aimed to obtain an initial indication of whether the use of the Consilium Care app (recently renamed medidux; mobile Health AG) for structured and regular self-assessment of side effects by ePROs had a recognizable effect on incidences of unplanned consultations and hospitalizations of patients with cancer compared to a control group in a real-world care setting without app use. To analyze this, the incidences of unplanned consultations and hospitalizations of patients with cancer using the Consilium Care app that were recorded by the treating physicians as part of the patient reported outcome (PRO) study were compared retrospectively to corresponding data from a comparable population of patients with cancer collected at 2 Swiss oncology centers during standard-of-care treatment.
    METHODS: Patients with cancer in the PRO study (178 included in this analysis) receiving systemic therapy in a neoadjuvant or noncurative setting performed a self-assessment of side effects via the Consilium Care app over an observational period of 90 days. In this period, unplanned (emergency) consultations and hospitalizations were documented by the participating physicians. The incidence of these events was compared with retrospective data obtained from 2 Swiss tumor centers for a matched cohort of patients with cancer.
    RESULTS: Both patient groups were comparable in terms of age and gender ratio, as well as the distribution of cancer entities and Joint Committee on Cancer stages. In total, 139 patients from each group were treated with chemotherapy and 39 with other therapies. Looking at all patients, no significant difference in events per patient was found between the Consilium group and the control group (odds ratio 0.742, 90% CI 0.455-1.206). However, a multivariate regression model revealed that the interaction term between the Consilium group and the factor \"chemotherapy\" was significant at the 5% level (P=.048). This motivated a corresponding subgroup analysis that indicated a relevant reduction of the risk for the intervention group in the subgroup of patients who underwent chemotherapy. The corresponding odds ratio of 0.53, 90% CI 0.288-0.957 is equivalent to a halving of the risk for patients in the Consilium group and suggests a clinically relevant effect that is significant at a 2-sided 10% level (P=.08, Fisher exact test).
    CONCLUSIONS: A comparison of unplanned consultations and hospitalizations from the PRO study with retrospective data from a comparable cohort of patients with cancer suggests a positive effect of regular app-based ePROs for patients receiving chemotherapy. These data are to be verified in the ongoing randomized PRO2 study (registered on ClinicalTrials.gov; NCT05425550).
    BACKGROUND: ClinicalTrials.gov NCT03578731; https://www.clinicaltrials.gov/ct2/show/NCT03578731.
    UNASSIGNED: RR2-10.2196/29271.
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  • 文章类型: Journal Article
    目的:评估多发性骨软骨瘤患者的健康相关生活质量和相关危险因素。
    方法:横截面,观察性研究于2022年5月至12月在罕见骨骼疾病转诊中心的常规访视期间进行.纳入所有年龄≥3岁的多发性骨软骨瘤患者。EuroQol5维问卷,和人口统计学,临床,并收集手术史资料.描述性统计,费希尔的精确检验,单样本t检验,斯皮尔曼的相关性,并进行多元线性和逻辑回归分析。根据STROBE指南报告结果。
    结果:共有128名患者被纳入研究,平均年龄为14岁[SD,10]年。平均EQ-5D指数值为0.863[SD,0.200],EQ-VAS为84[SD,19]两个评分之间呈正相关[r=0.541,p<0.001]。患者经常提到疼痛/不适的问题[78.8%],焦虑/抑郁[50%],和通常活动[38.8%]。年龄增长是健康相关生活质量的常见危险因素[p<0.000],手术患者的指数值和VAS评分均显著降低[分别为p=0.001和p<0.001]。
    结论:发现年龄增加和外科手术与多发性骨软骨瘤患者健康相关生活质量下降高度相关。我们的发现提供了相关信息,以支持建立以患者为中心的医疗保健途径,并为进一步研究这些患者的医学和非医学治疗策略铺平道路。
    OBJECTIVE: To evaluate the health-related quality of life and associated risk factors for Multiple Osteochondromas patients.
    METHODS: A cross-sectional, observational study was conducted from May to December 2022 during the routine visit to the referral center for rare skeletal disorders. All patients with Multiple Osteochondromas aged ≥ 3 years were included. EuroQol 5-dimension questionnaires, and demographic, clinical, and surgical history data were collected. Descriptive statistics, Fisher\'s exact test, One-sample t-test, Spearman\'s correlation, and multiple linear and logistic regression were performed to analyze the data. Results are reported following STROBE guidelines.
    RESULTS: A total of 128 patients were included in the study, with a mean age of 14 [SD, 10] years. The mean EQ-5D Index Value was 0.863 [SD, 0.200] and the EQ-VAS was 84 [SD, 19] with a positive correlation between two scores [r = 0.541, p < 0.001]. Patients frequently referred problems in pain/discomfort [78.8%], anxiety/depression [50%], and usual activities [38.8%] dimensions. Increasing age was the common risk factor for health-related quality of life [p < 0.000], as well as Index Value and VAS scores were significantly lower in surgical patients [p = 0.001 and p < 0.001, respectively].
    CONCLUSIONS: Increasing age and surgical procedures were found highly associated with reduced health-related quality of life in Multiple Osteochondromas patients. Our findings provide relevant information to support the establishment of patient-centered healthcare pathways and pave the way for further research into medical and non-medical therapeutic strategies for these patients.
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  • 文章类型: Randomized Controlled Trial
    术后牙痛普遍存在,会影响患者的生活质量。采用以患者为中心的方法进行疼痛管理,包括获取患者疼痛经历的同期信息,并将其用于个性化护理。
    在这项研究中,我们评估了使用移动健康(mHealth)平台在患者接受疼痛诱导牙科手术后7天内收集疼痛相关患者报告结局的情况;然后,我们将信息转送至牙医,并确定其对患者疼痛体验的影响.
    这项研究使用了一个分组随机实验研究设计,在第1、3、5和7天,患者在智能手机上收到自动文本通知后,会被提示完成一系列与疼痛体验相关的问题,并将由此产生的信息反馈给牙医,和一个控制臂,病人接受常规护理。供应商被随机分配,患者随后接受其提供者的登记状态.提供者或其工作人员确定了符合条件的患者,并邀请他们参与研究。进行了提供者访谈和调查,以评估对mHealth平台的接受度。
    共有42名提供者和1525名患者参加。对于主要结果(疼痛强度在1到10量表上,其中10个是最痛苦的),干预组患者的平均疼痛强度为4.8(SD2.6),而对照组的平均疼痛强度为4.7(SD2.8)。这些差异并不显著。次要结局也没有显着差异,包括疼痛干扰活动或睡眠,患者对疼痛管理的满意度,或阿片类药物处方。患者调查显示,不愿使用该应用程序主要是由于技术挑战,数据隐私问题,更喜欢打电话而不是发短信。提供商对该应用程序非常满意,并建议集成其他功能,例如用于患者上传手术部位的图片和视频的系统内摄像头,并与电子健康记录系统集成。
    虽然mHealth平台对急性术后疼痛体验没有重大影响,患者和提供者表示患者与提供者之间的沟通有所改善,患者与提供者的关系,术后并发症管理,以及管理止痛药处方的能力。mHealth开发人员和一线医疗保健提供者之间扩大的合作可以促进这些平台的适用性,进一步帮助改善其与正常临床工作流程的整合,并协助朝着更加以患者为中心的疼痛管理方法迈进。
    Postoperative dental pain is pervasive and can affect a patient\'s quality of life. Adopting a patient-centric approach to pain management involves having contemporaneous information about the patient\'s experience of pain and using it to personalize care.
    In this study, we evaluated the use of a mobile health (mHealth) platform to collect pain-related patient-reported outcomes over 7 days after the patients underwent pain-inducing dental procedures; we then relayed the information to the dentist and determined its impact on the patient\'s pain experience.
    The study used a cluster-randomized experimental study design with an intervention arm where patients were prompted to complete a series of questions relating to their pain experience after receiving automated text notifications on their smartphone on days 1, 3, 5, and 7, with the resulting information fed back to dentists, and a control arm where patients received usual care. Providers were randomized, and patients subsequently assumed the enrollment status of their providers. Providers or their staff identified eligible patients and invited them to participate in the study. Provider interviews and surveys were conducted to evaluate acceptance of the mHealth platform.
    A total of 42 providers and 1525 patients participated. For the primary outcome (pain intensity on a 1 to 10 scale, with 10 being the most painful), intervention group patients reported an average pain intensity of 4.8 (SD 2.6), while those in the control group reported an average pain intensity of 4.7 (SD 2.8). These differences were not significant. There were also no significant differences in secondary outcomes, including pain interference with activity or sleep, patient satisfaction with pain management, or opioid prescribing. Patient surveys revealed reluctance to use the app was mostly due to technological challenges, data privacy concerns, and a preference for phone calls over texting. Providers had high satisfaction with the app and suggested integrating additional features, such as an in-system camera for patients to upload pictures and videos of the procedural site, and integration with the electronic health record system.
    While the mHealth platform did not have a significant impact on acute postoperative pain experience, patients and providers indicated improvement in patient-provider communication, patient-provider relationship, postoperative complication management, and ability to manage pain medication prescribing. Expanded collaboration between mHealth developers and frontline health care providers can facilitate the applicability of these platforms, further help improve its integration with the normal clinic workflow, and assist in moving toward a more patient-centric approach to pain management.
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  • 文章类型: Journal Article
    患者报告的结果(PRO)正日益成为临床试验的重要组成部分,因为它们有助于分析癌症等慢性疾病治疗的安全性和有效性。
    我们报告了在转染重排(RET)融合阳性非小细胞肺癌(NSCLC)的中国患者中,使用selpercatinib治疗的PRO和与健康相关的生活质量(HRQoL)。RET融合阳性甲状腺癌(TC),和RET突变髓质TC(MTC)作为LIBRETTO-321试验的探索性分析。
    共77例患者(47例RET融合阳性非小细胞肺癌,1RET融合阳性TC,和29个RET突变MTC)被登记。欧洲癌症研究和治疗组织(EORTC)生活质量问卷-核心30(QLQ-C30)的依从性在基线为100%,在每个时间点>90%。
    使用EORTCQLQ-C30评估PRO,并使用全身治疗诱导腹泻评估工具对MTC患者进行肠道日记评估。在给药前;从第3周期每8周;和第13周期后每12周收集数据。从基线的>10点变化被认为是有临床意义的。通过第13周期总结了PRO变化。
    大多数NSCLC或MTC患者在总体健康状况和功能分量表上表现出改善或保持稳定。对于全球健康状况,47.4%的NSCLC和MTC患者表现出明确的改善,只有19.7%的患者表现出明确的恶化。对于功能分量表,不到30%的患者出现明确恶化。对于症状分量表,超过64%的患者症状改善或保持稳定.对于有肠道日记评估的MTC患者(n=5),在使用selpercatinib治疗期间观察到的腹泻发作没有出现严重程度或相对于基线的恶化.
    该研究表明,在中国RET融合阳性NSCLC患者中,良好的PROs,TC,和RET突变型MTC用selpercatinib治疗。根据EORTCQLQ-30评估,HRQoL改善或稳定。
    本研究注册于ClinicalTrials.gov(https://clinicaltrials.gov/ct2/show/NCT04280081)ClinicalTrials.gov标识符:NCT04280081。
    UNASSIGNED: Patient-reported outcomes (PROs) are increasingly becoming an important part of clinical trials as they are helpful in analyzing the safety and efficacy of treatment in chronic diseases like cancer.
    UNASSIGNED: We report PROs and health-related quality of life (HRQoL) with selpercatinib treatment among Chinese patients with rearranged in transfection (RET) fusion-positive non-small-cell lung cancer (NSCLC), RET fusion-positive thyroid cancer (TC), and RET-mutant medullary TC (MTC) as an exploratory analysis of the LIBRETTO-321 trial.
    UNASSIGNED: A total of 77 patients (47 RET fusion-positive NSCLC, 1 RET fusion-positive TC, and 29 RET-mutant MTC) were enrolled. Compliance for European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire-Core 30 (QLQ-C30) was 100% at baseline and >90% at each time point.
    UNASSIGNED: PROs were assessed using the EORTC QLQ-C30, and a bowel diary assessment for MTC patients with baseline diarrhea using the Systemic Therapy-Induced Diarrhea Assessment Tool. Data were collected at pre-dose; every 8 weeks from cycle 3; and every 12 weeks after cycle 13. A >10-point change from baseline was considered clinically meaningful. PRO changes were summarized through cycle 13.
    UNASSIGNED: Most patients with NSCLC or MTC showed improvement or remained stable on the global health status and functional subscales. For global health status, 47.4% of NSCLC and MTC patients showed definite improvement with only 19.7% showing definite worsening. For functional subscales, less than 30% of the patients showed definite worsening. For symptom subscales, more than 64% of the patients either improved or remained stable for the symptoms. For MTC patients with bowel diary assessment (n = 5), there was no severity or worsening from baseline in the diarrheal episodes observed during treatment with selpercatinib.
    UNASSIGNED: The study demonstrated favorable PROs in Chinese patients with RET fusion-positive NSCLC, TC, and RET-mutant MTC treated with selpercatinib. HRQoL was improved or stable as assessed by EORTC QLQ-30.
    UNASSIGNED: This study was registered at ClinicalTrials.gov (https://clinicaltrials.gov/ct2/show/NCT04280081) ClinicalTrials.gov Identifier: NCT04280081.
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  • 文章类型: Journal Article
    许多寻求减肥手术的患者的健康相关生活质量(HRQOL)降低。一个简单的临床工具,患者报告的肥胖结果(PROS),旨在解决临床咨询期间患者的HRQOL问题,并促进有意义的对话。本研究旨在探讨其对变化的敏感性。
    对接受减肥手术的患者进行了前瞻性研究。患者在手术前对PROS和肥胖相关问题量表(OP)上的项目做出了反应,术后12个月和24个月。纵向混合效应模型用于估计PROS和OP评分随时间的变化。
    38例患者被纳入。检测到24个月时具有最大效应大小的PROS随时间的显着变化(效应大小-1.34,p=0.001),而OP的相应效应大小为-1.32(p=0.001)。在PROS的所有项目中,大多数患者在24个月时没有反应.身体活动项目,疼痛,睡眠和自尊显示,从基线至术后24个月,报告患者中没有受到困扰的患者百分比变化最大.
    PROS对随时间的变化很敏感,可以用作摘要,易于管理的工具,以促进在临床咨询中关于肥胖特定生活质量的对话。
    UNASSIGNED: Many patients seeking bariatric surgery experience reduced health-related quality of life (HRQOL). A simple clinical tool, the Patient-Reported Outcomes in Obesity (PROS), was developed to address patients\' HRQOL concerns during clinical consultations and facilitate meaningful dialogue. The present study aims to explore its sensitivity to change.
    UNASSIGNED: A prospective study of patients undergoing bariatric surgery was conducted. The patients responded to items on the PROS and the Obesity-related Problems Scale (OP) before surgery and three, 12 and 24 months after surgery. Longitudinal mixed-effects models were applied to estimate the change in PROS and OP scores over time.
    UNASSIGNED: Thirty-eight patients were included. A significant change over time was detected for the PROS with the largest effect size at 24 months (effect size -1.34, p ˂ 0.001), while the corresponding effect size for the OP was -1.32 (p ˂ 0.001). In all items of the PROS, the majority of patients responded not bothered at 24 months. The items physical activity, pain, sleep and self-esteem showed the largest change in the percentage of patients reporting not bothered from baseline to 24 months after surgery.
    UNASSIGNED: The PROS is sensitive to change over time and may be used as a brief, easy to administer tool to facilitate a conversation about obesity-specific quality of life in clinical consultations.
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  • 文章类型: Journal Article
    背景:移动健康(mHealth)作为一种健康促进方法正在迅速扩展,但是一些干预措施可能对潜在用户不熟悉或不舒服。短信作为一种低成本的短信,提供疫苗提醒的可访问方式。大多数(97%)美国成年人拥有手机,其中大多数成年人使用SMS短信。然而,了解不同初级保健人群的短信计划类型和使用模式需要更多的调查。
    目的:我们试图使用一项调查来检查愿意接受SMS短信疫苗提醒的家庭的基线SMS短信和数据计划模式。
    方法:作为美国国立卫生研究院(NIH)资助的国家研究(Flu2Text)的一部分,在2017-2018和2018-2019流感季节进行,需要第二次季节性流感疫苗接种的儿童家庭在第一次接种时被招募到儿科初级保健办公室.实践来自美国儿科学会(AAP)办公室设置儿科研究(PROS)研究网络,费城儿童医院,和哥伦比亚大学。在注册时通过电话(第1季)或电子(第2季)进行了调查。使用逻辑回归计算SMS文本消息计划类型和发短信频率的标准化(调整)比例,并针对儿童和护理人员的人口统计进行了调整。
    结果:收集了1439名参与者(69%的参与者)的回答。平均照顾者年龄为32(SD6)岁,大多数儿童(n=1355,94.2%)年龄为6-23个月。大多数(n=1357,94.3%)家庭说英语。大多数(n=1331,92.8%)但并非所有参与者都有无限的SMS短信计划,并且每天至少发送或接收一次短信(n=1313,91.5%)。SMS文本消息传递计划类型和基线使用在大多数但不是所有子组中是统一的。然而,研究人群的短信计划类型和使用情况存在一些差异。想要西班牙语短信的护理人员比那些选择英语的护理人员不太可能拥有无限短信短信计划(n=61,86.7%vsn=1270,94%;风险差异-7.2%,95%CI-27.1至-1.8)。与儿童种族相关的无限制计划没有显著差异,种族,年龄,健康状况,保险类型,或照顾者的教育水平。基线时SMS文本消息的使用在所有子组中并不统一。近四分之三(n=1030,71.9%)的参与者从医生办公室收到某种形式的短信;最常见的是预约提醒(n=1014,98.4%),处方(n=300,29.1%),和实验室通知(n=117,11.4%)。即使是大多数(n=64,61.5%)没有无限计划并且发短信少于每天(n=72,59%)的人报告收到了这些SMS短信。
    结论:在这项研究中,大多数参与者可以使用无限制的SMS短信计划,并且每天至少发一次短信。然而,不经常发短信和无法使用无限制的SMS短信计划并不妨碍在儿科初级保健机构中登记接收SMS短信提醒.
    BACKGROUND: Mobile health (mHealth) is quickly expanding as a method of health promotion, but some interventions may not be familiar or comfortable for potential users. SMS text messaging has been investigated as a low-cost, accessible way to provide vaccine reminders. Most (97%) US adults own a cellphone and of those adults most use SMS text messaging. However, understanding patterns of SMS text message plan type and use in diverse primary care populations needs more investigation.
    OBJECTIVE: We sought to use a survey to examine baseline SMS text messaging and data plan patterns among families willing to accept SMS text message vaccine reminders.
    METHODS: As part of a National Institutes of Health (NIH)-funded national study (Flu2Text) conducted during the 2017-2018 and 2018-2019 influenza seasons, families of children needing a second seasonal influenza vaccine dose were recruited in pediatric primary care offices at the time of their first dose. Practices were from the American Academy of Pediatrics\' (AAP) Pediatric Research in Office Settings (PROS) research network, the Children\'s Hospital of Philadelphia, and Columbia University. A survey was administered via telephone (Season 1) or electronically (Season 2) at enrollment. Standardized (adjusted) proportions for SMS text message plan type and texting frequency were calculated using logistic regression that was adjusted for child and caregiver demographics.
    RESULTS: Responses were collected from 1439 participants (69% of enrolled). The mean caregiver age was 32 (SD 6) years, and most children (n=1355, 94.2%) were aged 6-23 months. Most (n=1357, 94.3%) families were English-speaking. Most (n=1331, 92.8%) but not all participants had an unlimited SMS text messaging plan and sent or received texts at least once daily (n=1313, 91.5%). SMS text messaging plan type and use at baseline was uniform across most but not all subgroups. However, there were some differences in the study population\'s SMS text messaging plan type and usage. Caregivers who wanted Spanish SMS text messages were less likely than those who chose English to have an unlimited SMS text messaging plan (n=61, 86.7% vs n=1270, 94%; risk difference -7.2%, 95% CI -27.1 to -1.8). There were no significant differences in having an unlimited plan associated with child\'s race, ethnicity, age, health status, insurance type, or caregiver education level. SMS text messaging use at baseline was not uniform across all subgroups. Nearly three-quarters (n=1030, 71.9%) of participants had received some form of SMS text message from their doctor\'s office; most common were appointment reminders (n=1014, 98.4%), prescription (n=300, 29.1%), and laboratory notifications (n=117, 11.4%). Even the majority (n=64, 61.5%) of those who did not have unlimited plans and who texted less than daily (n=72, 59%) reported receipt of these SMS text messages.
    CONCLUSIONS: In this study, most participants had access to unlimited SMS text messaging plans and texted at least once daily. However, infrequent texting and lack of access to an unlimited SMS text messaging plan did not preclude enrolling to receive SMS text message reminders in pediatric primary care settings.
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  • 文章类型: Randomized Controlled Trial
    背景:儿科肿瘤学中的电子患者报告结果(e-PRO)可能有助于追踪患者的症状和生活质量(QoL)。然而,在临床环境中的实施是有限的,很少有研究检查儿童和父母对e-PRO使用的看法。
    目的:这份简短的报告旨在探讨儿童和父母对使用e-PRO常规报告症状和QoL的益处的看法。
    方法:我们分析了PediQUEST反应试验中嵌入的定性数据,一项针对晚期癌症儿童及其父母的早期姑息治疗整合的随机对照试验.研究二元组合,由一个孩子和他们的父母组成,完成为期18周的每周调查,评估症状和QoL,并被邀请参加音频录制的退出面试,以分享研究反馈。访谈笔录用主题分析方法进行了分析,这里报道的紧急主题集中在e-PRO使用的好处上。
    结果:总共154名随机参与者,我们收集了代表105名儿童参与者的147名退出访谈.接受采访的儿童(n=47)和父母(n=104)大多是白人和非西班牙裔。关于e-PRO的好处出现了两个主要主题:1)提高对自我和他人经验的反思和意识,2)通过调查提示讨论,增加父母与孩子之间或研究小组与护理团队之间的沟通和联系。
    结论:晚期儿科癌症患者及其父母发现在完成常规e-PRO时受益,因为它们促进了更多的反思和认识,并增加了沟通。这些结果可能有助于将e-PRO进一步整合到常规儿科肿瘤护理中。
    Electronic patient-reported outcomes (e-PROs) in pediatric oncology may be useful to track patients\' symptoms and quality of life (QoL). However, implementation in the clinical setting is limited and few studies have examined child and parent perspectives on e-PRO usage.
    This brief report aims to explore child and parent perspectives on the benefits of using e-PROs to routinely report on symptoms and QoL.
    We analyzed qualitative data embedded within the PediQUEST Response trial, a randomized controlled trial aimed at early palliative care integration for children with advanced cancer and their parents. Study dyads, made up of a child and their parent, completed weekly surveys assessing symptoms and QoL for 18 weeks, and were invited to participate in an audio-recorded exit interview to share study feedback. Interview transcripts were analyzed with a thematic analysis approach, with emergent themes centered on the benefits of e-PRO usage reported here.
    Of 154 total randomized participants, we collected 147 exit interviews representing 105 child participants. Interviewed children (n=47) and parents (n=104) were mostly White and non-Hispanic. Two predominant themes emerged regarding e-PRO benefits:1) raised reflection and awareness of self and others\' experiences, and 2) increased communication and connection between parents and children or between study dyads and care teams through survey prompted discussion.
    Advanced pediatric cancer patients and their parents found benefit in completing routine e-PROs as they promoted greater reflection and awareness and increased communication. These results may inform further integration of e-PROs in routine pediatric oncology care.
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  • 文章类型: Journal Article
    在临床接触期间通过访谈或对话评估患者报告的结果(PRO)提供了有关生存的深刻信息。
    这项研究旨在测试自然语言处理(NLP)和机器学习(ML)算法在识别儿童和青少年癌症幸存者所经历的疼痛干扰和疲劳症状的不同属性方面的有效性,以及PRO内容专家的判断作为验证NLP/ML算法的黄金标准。
    这项横断面研究的重点是儿童和青少年癌症幸存者,8至17岁,和照顾者,从中产生疼痛干扰域中的391个含义单位和疲劳域中的423个含义单位用于分析.数据来自圣裘德儿童研究医院治疗完成后的诊所。通过深入访谈报告了经历的疼痛干扰和疲劳症状。逐字转录后,可分析的句子(即,含义单位)由2位内容专家对每个属性(物理,认知,社会,或未分类)。使用两种NLP/ML方法来提取和验证语义特征:来自变压器(BERT)和Word2vec的双向编码器表示以及ML方法之一,支持向量机或极端梯度提升。使用接收器工作特性和精确召回曲线来评估NLP/ML方法的准确性和有效性。
    与Word2vec/支持向量机和Word2vec/极端梯度提升相比,BERT在两个症状领域都表现出更高的准确性,对于疼痛干扰的认知和社会属性问题,分别为0.931(95%CI0.905-0.957)和0.916(95%CI0.887-0.941),分别,和0.929(95%CI0.903-0.953)和0.917(95%CI0.891-0.943)用于疲劳的认知和社会属性问题,分别。此外,BERT在疼痛干扰和疲劳领域的认知属性在受试者工作特征曲线下产生了优越的区域(0.923,95%CI0.879-0.997;0.948,95%CI0.922-0.979),在疼痛干扰和疲劳领域的认知属性在精确召回曲线下产生了优越的区域(0.818,95%CI0.735-0.917;0.855,95%CI0.791-0.930)。
    BERT方法的性能优于其他方法。作为使用标准PRO调查的替代方法,在临床接触期间通过访谈或对话收集非结构化的PRO,并应用NLP/ML方法可以促进儿童和青少年癌症幸存者的PRO评估。
    Assessing patient-reported outcomes (PROs) through interviews or conversations during clinical encounters provides insightful information about survivorship.
    This study aims to test the validity of natural language processing (NLP) and machine learning (ML) algorithms in identifying different attributes of pain interference and fatigue symptoms experienced by child and adolescent survivors of cancer versus the judgment by PRO content experts as the gold standard to validate NLP/ML algorithms.
    This cross-sectional study focused on child and adolescent survivors of cancer, aged 8 to 17 years, and caregivers, from whom 391 meaning units in the pain interference domain and 423 in the fatigue domain were generated for analyses. Data were collected from the After Completion of Therapy Clinic at St. Jude Children\'s Research Hospital. Experienced pain interference and fatigue symptoms were reported through in-depth interviews. After verbatim transcription, analyzable sentences (ie, meaning units) were semantically labeled by 2 content experts for each attribute (physical, cognitive, social, or unclassified). Two NLP/ML methods were used to extract and validate the semantic features: bidirectional encoder representations from transformers (BERT) and Word2vec plus one of the ML methods, the support vector machine or extreme gradient boosting. Receiver operating characteristic and precision-recall curves were used to evaluate the accuracy and validity of the NLP/ML methods.
    Compared with Word2vec/support vector machine and Word2vec/extreme gradient boosting, BERT demonstrated higher accuracy in both symptom domains, with 0.931 (95% CI 0.905-0.957) and 0.916 (95% CI 0.887-0.941) for problems with cognitive and social attributes on pain interference, respectively, and 0.929 (95% CI 0.903-0.953) and 0.917 (95% CI 0.891-0.943) for problems with cognitive and social attributes on fatigue, respectively. In addition, BERT yielded superior areas under the receiver operating characteristic curve for cognitive attributes on pain interference and fatigue domains (0.923, 95% CI 0.879-0.997; 0.948, 95% CI 0.922-0.979) and superior areas under the precision-recall curve for cognitive attributes on pain interference and fatigue domains (0.818, 95% CI 0.735-0.917; 0.855, 95% CI 0.791-0.930).
    The BERT method performed better than the other methods. As an alternative to using standard PRO surveys, collecting unstructured PROs via interviews or conversations during clinical encounters and applying NLP/ML methods can facilitate PRO assessment in child and adolescent cancer survivors.
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  • 文章类型: Journal Article
    OBJECTIVE: Onflex™ mesh has replaced Polysoft™ patch on the market, without being clinically evaluated thus far in the transinguinal preperitoneal (TIPP) technique.
    METHODS: All consecutive TIPP registered in our registry during the overlap period of availability of both meshes were included and studied with the chronic postoperative inguinal pain (CPIP) as primary endpoint, assessed with a verbal rating scale (VRS), and included in a patient-related outcome measurement (PROM) phone questionnaire.
    RESULTS: A total of 181 Onflex cases vs 182 Polysoft cases were studied with a 2-year follow-up rate of 92% vs 88%. The overall rate of pain or discomfort was not statistically different in the 2 studied subgroups (16.5% vs 17.6%; p = 0.71), while moderate or severe pain were significantly more frequent in the Polysoft subgroup (5.5% vs 11.6%; p = 0.01). These symptoms did not interfere with the patient daily life in 16% vs 16.5% of cases, and they were self-assessed as more bothersome than the hernia in only 0.5% vs 0.5% of cases, suggesting an overestimation of the pain by the VRS. Patients assessed the result of their hernia repair as excellent or good in 97.8% vs 96.7% and medium or bad in 2.2% vs 3.3% (p = 0.53). The cumulative recurrence rate was 0% vs 2.2%. Two reoperations (one for early and one for late recurrence) were reported in the Polysoft subgroup (1%), none related to the non-absorbable memory ring.
    CONCLUSIONS: These results suggest that TIPP with Onflex provides results at least similar than those with Polysoft.
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