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Moving beyond barriers: a mixed-method study to develop evidence-based strategies to improve implementation of PROMs in clinical oncology care. 超越障碍:一项混合方法研究,旨在制定以证据为基础的策略,以改善肿瘤临床护理中 PROMs 的实施。
IF 3.3 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-01-01 Epub Date: 2024-09-20 DOI: 10.1007/s11136-024-03787-w
Eva Boomstra, Iris Walraven, Iris M C van der Ploeg, Michel W J M Wouters, Maaike W van de Kamp, Richard Dirven, Elaine Albers, Itske Fraterman, Marit Poulissen, Lonneke V van de Poll-Franse, Kelly M de Ligt

Purpose: This study aimed to identify feasible, evidence-based strategies to improve the use of Patient-reported outcome measures (PROMs) implemented in clinical oncology practice.

Methods: A mixed-method study involving observations of consultations and semi-structured interviews with patients and healthcare professionals (HCPs) was conducted to identify facilitators and barriers for using PROMs; barriers and facilitators were structured following the Theoretical Domains Framework. For each barrier, evidence-based improvement strategies were selected using the Behaviour Change Techniques Taxonomy v1. Subsequently, improvement strategies were ranked on priority and feasibility by an expert panel of HCPs, information technology professionals, and PROMs implementation specialists, creating an implementation improvement strategy.

Results: Ten consultations were observed and 14 interviews conducted. Barriers for implementation included that the electronic health record and PROMs did not align to the individual needs of end users, the HCPs' hesitance to advice patients about health-related quality-of-life issues, and a lack of consensus on which HCPs were responsible for discussing PROMs with patients. Forty-one improvement strategies were identified, of which 25 remained after ranking. These included: redesigning the PROMs dashboard by including patient management advice, enhancing patient support to complete PROMs, and clarifying HCPs' responsibilities for discussing PROMs. Strategies currently considered less feasible were: improving user-friendliness of the patient portal due to technical constraints, aligning PROMs assessment frequency with clinical courses, and using baseline PROMs for early identification of vulnerabilities and supportive care needs. These will be studied in future research.

Conclusion: Evidence-based improvement strategies to ensure lasting adoption of PROMs in clinical practice were identified.

目的:本研究旨在确定可行的循证策略,以改进临床肿瘤学实践中患者报告结果测量(PROMs)的使用:方法:本研究采用混合方法,通过观察会诊情况以及对患者和医护人员(HCPs)进行半结构化访谈,来确定使用患者报告结果指标(PROMs)的促进因素和障碍。随后,由医护人员、信息技术专业人员和 PROMs 实施专家组成的专家小组根据优先级和可行性对改进策略进行了排序,并制定了实施改进策略:结果:观察了 10 次会诊,进行了 14 次访谈。实施障碍包括:电子健康记录和 PROMs 与最终用户的个性化需求不一致;医疗保健人员不愿就与健康相关的生活质量问题向患者提供建议;在由哪位医疗保健人员负责与患者讨论 PROMs 的问题上缺乏共识。最终确定了 41 项改进策略,其中 25 项经过排序后仍然有效。这些策略包括:重新设计 PROMs 面板,加入患者管理建议;加强对患者完成 PROMs 的支持;明确 HCP 讨论 PROMs 的责任。目前认为可行性较低的策略包括:由于技术限制,改善患者门户网站的用户友好性,使 PROMs 评估频率与临床课程保持一致,以及利用基线 PROMs 及早识别薄弱环节和支持性护理需求。这些都将在今后的研究中加以探讨:结论:确定了以证据为基础的改进策略,以确保在临床实践中持久采用 PROMs。
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引用次数: 0
Bidirectional association between frailty and quality of life within English longitudinal study of aging. 英国老龄化纵向研究中虚弱与生活质量之间的双向关联。
IF 3.3 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-01-01 Epub Date: 2024-10-14 DOI: 10.1007/s11136-024-03809-7
Ali Alattas, Farag Shuweihdi, Kate Best, Silviya Nikolova, Robert West

Purpose: The relationship between quality of life (QoL) and frailty has previously been investigated cross-sectionally and longitudinally as unidirectional where QoL depends upon frailty and where frailty depends on QoL. Here a bidirectional relationship is examined.

Methods: This work uses a latent curve model with structured residuals to address the bidirectional association between QoL and frailty in older English people considering within-person and group levels. The study measures frailty using a functional frailty measure and quality of life using CASP-12. The sample size is 17,529.

Results: There is a strong relationship between QoL (Quality of Life) and frailty, which is almost linear and inversely proportional over time. Although the cross-lagged coefficients from QoL to frailty and vice versa showed statistical significance, the impact was found to be minimal. The time between assessments (which are two years apart) and/or the few observations available per individual may have impacted the effect of this relationship. When accounting for gender, age, net wealth, and multimorbidity, some variations in the results were observed at the group level but not at the within-person level.

Conclusion: The study provides empirical evidence that supports a bidirectional association between QoL and frailty in older individuals who reside at home. These results offer valuable insights for healthcare providers, as participants did not exhibit an advanced need for health services. Additionally, involving participants in evaluating and assessing these services enhances their effectiveness and overall benefit.

目的:以前曾对生活质量(QoL)与虚弱之间的关系进行过横向和纵向研究,认为两者之间存在单向关系,即生活质量取决于虚弱程度,而虚弱程度取决于生活质量。这里研究的是一种双向关系:本研究采用具有结构化残差的潜在曲线模型来研究英国老年人的 QoL 与虚弱之间的双向关系,同时考虑到个人和群体层面。研究使用功能性虚弱测量法测量虚弱程度,使用 CASP-12 测量生活质量。样本量为 17529 个:结果:QoL(生活质量)与虚弱之间存在密切关系,两者之间几乎呈线性关系,并随着时间的推移成反比。虽然从 QoL 到虚弱程度以及从虚弱程度到 QoL 的交叉滞后系数显示出统计学意义,但发现其影响微乎其微。评估之间的时间间隔(相隔两年)和/或每个人可用的观测数据较少可能会影响这种关系的效果。在考虑性别、年龄、净财富和多病症的情况下,在群体层面观察到的结果存在一些差异,但在个人层面则没有:本研究提供的经验证据支持了居家老年人的 QoL 与虚弱之间的双向关系。这些结果为医疗服务提供者提供了宝贵的见解,因为参与者并未表现出对医疗服务的高度需求。此外,让参与者参与评价和评估这些服务可提高服务的有效性和整体效益。
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引用次数: 0
PRISMA-COSMIN: response from ISOQOL's ANZ SIG leadership. PRISMA-COSMIN:来自ISOQOL ANZ SIG领导层的回应。
IF 3.3 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-01-01 Epub Date: 2024-12-05 DOI: 10.1007/s11136-024-03744-7
Imogen Ramsey, Nadia Corsini, Jessica Roydhouse

ISOQOL's Australia and New Zealand Special Interest Group (ISOQOL ANZ SIG) connects local researchers and clinicians in a geographically remote region of the world. Members of our ANZ SIG have been conducting a review following COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) guidance, which outlines a comprehensive process to critically evaluate the properties of outcome measurement instruments, including patient-reported outcome measures (PROMs). Our experience has highlighted challenges for undertaking this type of review, notably a lack of consistency in how COSMIN guidance is applied and reported. In this Letter to the Editor, members of the ANZ SIG leadership discuss the PRISMA-COSMIN for Outcome Measurement Instruments; a new guideline developed to support and improve reporting of systematic reviews of outcome measurement instruments. We explore the potential of this guidance to improve how systematic reviews of PROMs are conducted and reported, from the perspective of a regional SIG.

ISOQOL的澳大利亚和新西兰特别兴趣小组(ISOQOL ANZ SIG)将世界上地理偏远地区的当地研究人员和临床医生联系起来。我们的ANZ小组成员一直在按照COSMIN(基于共识的健康测量工具选择标准)指南进行审查,该指南概述了一个全面的过程,以严格评估结果测量工具的特性,包括患者报告的结果测量(PROMs)。我们的经验突出了进行这类审查的挑战,特别是在如何应用和报告COSMIN指南方面缺乏一致性。在这封致编辑的信中,ANZ SIG领导成员讨论了prism - cosmin结果测量仪器;制定了一项新的指南,以支持和改进结果衡量工具的系统审查报告。我们从区域SIG的角度探讨了该指南的潜力,以改进对prom进行系统审查和报告的方式。
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引用次数: 0
Comparing patient-reported outcomes measurement information system® (PROMIS®)-16 domain scores with the PROMIS-29 and 5-item PROMIS cognitive function scores. 比较患者报告结果测量信息系统® (PROMIS®)-16 领域评分与 PROMIS-29 和 5 项 PROMIS 认知功能评分。
IF 3.3 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-01-01 Epub Date: 2024-08-14 DOI: 10.1007/s11136-024-03747-4
Chengbo Zeng, Ron D Hays, Anthony Rodriguez, Janel Hanmer, Patricia M Herman, Maria Orlando Edelen

Purpose: This study evaluates the interpretability of Patient-Reported Outcomes Measurement Information System® (PROMIS®)-16 profile domain scores (physical function, ability to participate in social roles and activities, anxiety, depression, sleep disturbance, pain interference, cognitive function - abilities, and fatigue) compared to the PROMIS-29 scores and a 5-item PROMIS cognitive function score. The study aims to provide insights into using these measures in clinical and research settings.

Methods: Analyses were conducted using data from 4130 adults from a nationally representative, probability-based internet panel between September and October 2022. A subset of 1256 individuals with back pain was followed up at six months. We compared the PROMIS-16 profile with the corresponding domain scores from the PROMIS-29 and a custom five-item cognitive function measure. We evaluated (1) reliability through inter-item correlations within each domain and (2) criterion validity by comparing PROMIS-16 profile with the corresponding longer PROMIS measures: (a) standardized mean differences in domain scores, (b) correlations, and (c) concordance of change (i.e., got worse, stayed the same, got better) among those with back pain from baseline to six months later using the reliable change index. We report the Kappa coefficient of agreement and the frequency and percentage of participants with concordant classifications.

Results: Inter-item correlations for the PROMIS-16 domains ranged from 0.65 in cognitive function to 0.92 in pain interference. Standardized mean differences between PROMIS-16 and the scores for the corresponding longer PROMIS domains were minimal (< 0.2). Correlations among the corresponding domain scores ranged from 0.82 for sleep disturbance to 0.98 for pain interference. The percentage of concordance in change groups ranged from 63% for sleep disturbance to 88% for pain interference. Except for sleep disturbance, the change groups derived from the PROMIS-16 showed moderate to substantial agreement with scores estimated from the longer PROMIS measures (Kappa coefficients ≥ 0.41).

Conclusion: The PROMIS-16 domain scores perform similarly to the longer PROMIS measures and can be interpreted in the same way. This similarity indicates that PROMIS-16 can be useful for research as a brief health-related quality-of-life profile measure.

目的:本研究评估了患者报告结果测量信息系统®(PROMIS®)-16 个特征域评分(身体功能、参与社会角色和活动的能力、焦虑、抑郁、睡眠障碍、疼痛干扰、认知功能-能力和疲劳)与 PROMIS-29 评分和 5 项 PROMIS 认知功能评分的可解释性。该研究旨在为在临床和研究环境中使用这些测量方法提供见解:分析使用的数据来自 2022 年 9 月至 10 月期间一个具有全国代表性的、基于概率的互联网面板中的 4130 名成人。我们对 1256 名背痛患者进行了为期 6 个月的随访。我们将 PROMIS-16 资料与 PROMIS-29 中的相应领域得分以及定制的五项认知功能测量进行了比较。我们评估了(1)每个领域内项目间相关性的可靠性;(2)通过比较 PROMIS-16 资料和相应的较长的 PROMIS 测量来评估标准效度:(a) 领域得分的标准化平均差异,(b) 相关性,以及 (c) 背痛患者从基线到六个月后使用可靠变化指数的变化一致性(即变差、不变、变好)。我们报告了一致性的卡帕系数以及分类一致的参与者的频率和百分比:结果:PROMIS-16 各领域的项目间相关性从认知功能的 0.65 到疼痛干扰的 0.92 不等。PROMIS-16 与相应的较长 PROMIS 领域得分之间的标准化均值差异很小(结论:PROMIS-16 领域得分的标准化均值差异很小:PROMIS-16 的领域得分与较长的 PROMIS 测量指标表现相似,可以用相同的方式进行解释。这种相似性表明,PROMIS-16 作为一种简短的健康相关生活质量概况测量方法,可用于研究。
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引用次数: 0
Conceptualizing meaningful between-group difference in change over time: a demonstration of possible viewpoints. 将随时间变化的组间差异概念化:展示可能的观点。
IF 3.3 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-01-01 Epub Date: 2024-10-09 DOI: 10.1007/s11136-024-03798-7
Andrew Trigg, Nicolai D Ayasse, Cheryl D Coon

Purpose: Determining if group-level differences in health outcomes are meaningful has recently been neglected in favour of determining if individuals have experienced a meaningful change. We explore interpretation of a meaningful between-group difference (MBGD) in clinical outcome assessment scores, primarily in the context of randomized clinical trials.

Methods: We constructed a series of possible 'viewpoints' on how to conceptualize MBGD thresholds. Each viewpoint is discussed critically in terms of potential advantages and disadvantages, with simulated data to facilitate their consideration.

Results: Five viewpoints are presented and discussed. The first considers whether thresholds for meaningful within-individual change over time can be equally applied at the group-level, which is shown to be untenable. Viewpoints 2-4 consider what would have to be observed in treatment groups to conclude a meaningful between-group difference has occurred, framed in terms of the proportion of patients perceiving that they had meaningfully improved. The final viewpoint considers an alternative framework where stakeholders are directly questioned on the meaningfulness of varying magnitudes of between-group differences. The choice of a single threshold versus general interpretative guidelines is discussed.

Conclusion: There does not appear to be a single method with clear face validity for determining MBGD thresholds. Additionally, the notion that such thresholds can be purely data-driven is challenged, where a degree of subjective stakeholder judgement is likely required. Areas for future research are proposed, to move towards robust method development.

目的:最近,确定健康结果的组间差异是否有意义被忽视了,而更倾向于确定个人是否经历了有意义的改变。我们主要在随机临床试验的背景下,探讨了如何解释临床结果评估分数中的有意义组间差异(MBGD):方法:我们就如何概念化 MBGD 临界值提出了一系列可能的 "观点"。方法:我们就如何构思 MBGD 临界值构建了一系列可能的 "观点",并通过模拟数据对每种观点的潜在优缺点进行了批判性讨论,以便于对其进行考虑:结果:提出并讨论了五种观点。第一种观点认为,个体内部随时间发生有意义变化的阈值是否可以同样适用于群体层面,事实证明这种观点是站不住脚的。第二至第四种观点考虑了必须在治疗组中观察到什么情况才能得出结论,即组间出现了有意义的差异,其框架是患者认为自己得到了有意义的改善的比例。最后一个观点考虑了另一种框架,即直接询问利益相关者不同程度的组间差异是否有意义。讨论了选择单一阈值还是一般解释性指南的问题:在确定 MBGD 临界值方面,似乎没有一种方法具有明确的表面有效性。此外,这种阈值可以纯粹由数据驱动的观点也受到了质疑,可能需要利益相关者做出一定程度的主观判断。提出了今后的研究领域,以便开发出可靠的方法。
{"title":"Conceptualizing meaningful between-group difference in change over time: a demonstration of possible viewpoints.","authors":"Andrew Trigg, Nicolai D Ayasse, Cheryl D Coon","doi":"10.1007/s11136-024-03798-7","DOIUrl":"10.1007/s11136-024-03798-7","url":null,"abstract":"<p><strong>Purpose: </strong>Determining if group-level differences in health outcomes are meaningful has recently been neglected in favour of determining if individuals have experienced a meaningful change. We explore interpretation of a meaningful between-group difference (MBGD) in clinical outcome assessment scores, primarily in the context of randomized clinical trials.</p><p><strong>Methods: </strong>We constructed a series of possible 'viewpoints' on how to conceptualize MBGD thresholds. Each viewpoint is discussed critically in terms of potential advantages and disadvantages, with simulated data to facilitate their consideration.</p><p><strong>Results: </strong>Five viewpoints are presented and discussed. The first considers whether thresholds for meaningful within-individual change over time can be equally applied at the group-level, which is shown to be untenable. Viewpoints 2-4 consider what would have to be observed in treatment groups to conclude a meaningful between-group difference has occurred, framed in terms of the proportion of patients perceiving that they had meaningfully improved. The final viewpoint considers an alternative framework where stakeholders are directly questioned on the meaningfulness of varying magnitudes of between-group differences. The choice of a single threshold versus general interpretative guidelines is discussed.</p><p><strong>Conclusion: </strong>There does not appear to be a single method with clear face validity for determining MBGD thresholds. Additionally, the notion that such thresholds can be purely data-driven is challenged, where a degree of subjective stakeholder judgement is likely required. Areas for future research are proposed, to move towards robust method development.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"151-160"},"PeriodicalIF":3.3,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142392642","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Applicability of the PRISMA-COSMIN guidelines for systematic reviews of outcome measurement instruments to ISOQOL's special interest group for clinical practice. 结果测量仪器系统评价PRISMA-COSMIN指南对ISOQOL临床实践特殊兴趣组的适用性。
IF 3.3 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-01-01 Epub Date: 2024-12-05 DOI: 10.1007/s11136-024-03815-9
Angela C Wolff, Elizabeth J Austin, Amy M Cizik
{"title":"Applicability of the PRISMA-COSMIN guidelines for systematic reviews of outcome measurement instruments to ISOQOL's special interest group for clinical practice.","authors":"Angela C Wolff, Elizabeth J Austin, Amy M Cizik","doi":"10.1007/s11136-024-03815-9","DOIUrl":"10.1007/s11136-024-03815-9","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"53-54"},"PeriodicalIF":3.3,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142786665","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Response to letters from the ISOQOL SIGs regarding PRISMA-COSMIN for OMIs 2024. 对国际标准化组织(ISOQOL)关于prism - cosmin用于omis2024的信函的回应。
IF 3.3 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-01-01 Epub Date: 2024-12-05 DOI: 10.1007/s11136-024-03869-9
Ellen B M Elsman, Lidwine B Mokkink, Martin Offringa
{"title":"Response to letters from the ISOQOL SIGs regarding PRISMA-COSMIN for OMIs 2024.","authors":"Ellen B M Elsman, Lidwine B Mokkink, Martin Offringa","doi":"10.1007/s11136-024-03869-9","DOIUrl":"10.1007/s11136-024-03869-9","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"61-62"},"PeriodicalIF":3.3,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142786755","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Health-related quality of life in 205 children with arthrogryposis multiplex congenita. 205 名先天性关节发育不良儿童的健康相关生活质量。
IF 3.3 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-01-01 Epub Date: 2024-10-22 DOI: 10.1007/s11136-024-03808-8
Shahrzad Nematollahi, Emmanouil Rampakakis, Michael Amara, Reggie C Hamdy, Frank Rauch, Lauren C Hyer, Michelle A James, Haluk Altiok, Ellen Raney, Jonathan Pellett, Cary Mielke, Sarah B Nossov, Sena Tavukcu, Philip F Giampietro, Noémi Dahan-Oliel

Purpose: Arthrogryposis multiplex congenita (AMC) describes a heterogeneous group of rare congenital conditions. Health-related quality of life (HRQL) may be reduced in AMC due to broadly heterogeneous physical impairments and participation limitations. This study described HRQL in children and youth with AMC, compared HRQL between child self- and parent-proxy reports, and identified factors associated with better/worse HRQL.

Methods: Data on 205 children with AMC (age 8-21 years) from a North American AMC registry across eight hospital sites was used. HRQL was assessed cross-sectionally using the Patient Reported Outcome Measurement Information System (PROMIS) and European Quality of Life-5 Dimensions-Youth-3 Levels (EQ-5D-Y-3 L) by self-report, parent proxy-report or both.

Results: Mean child-reported PROMIS T-scores were significantly lower than the normal mean for the Upper Extremity (mean = 33.0) and Mobility (mean = 37.2) but in the normal range for Pain Interference (mean = 46.6) and Peer Relationships (mean = 51.7). A lot of problems in EQ-5D-Y-3 L was reported by 37% in Feeling Worried/ Sad/ Unhappy, 46% in Having Pain/Discomfort, 50% in Doing Usual Activities, 56% in Mobility, and 57% in Looking After Myself. Compared to child-report, parents reported significantly worse PROMIS T-scores and higher problems in EQ-5D domains. Wheelchair use, being small for gestational age, prolonged hospitalization after birth, increased number of orthopedic surgeries, and caregiver's stress were associated with lower HRQL scores.

Conclusion: Findings indicate the importance of considering both the child's and parents' reports of HRQL, and to provide multimodal interventions that focus on the effect of childhood and parental characteristics to promote HRQL among children with AMC.

目的:先天性多关节炎(AMC)是一种异质性的罕见先天性疾病。AMC患者的健康相关生活质量(HRQL)可能会因广泛的异质性身体损伤和参与限制而降低。这项研究描述了患有AMC的儿童和青少年的HRQL,比较了儿童自我报告和父母代理报告之间的HRQL,并确定了与更好/更差的HRQL相关的因素:研究使用了205名患有AMC的儿童(8-21岁)的数据,这些数据来自北美的一个AMC登记处,分布在8家医院。采用患者报告结果测量信息系统(PROMIS)和欧洲生活质量-5维度-青年-3水平(EQ-5D-Y-3 L),通过自我报告、家长代理报告或两者兼而有之的方式对HRQL进行横截面评估:结果:儿童报告的PROMIS T分平均值在上肢(平均值=33.0)和活动能力(平均值=37.2)方面明显低于正常平均值,但在疼痛干扰(平均值=46.6)和同伴关系(平均值=51.7)方面处于正常范围。在EQ-5D-Y-3 L中,37%的受试者表示在 "感到担忧/悲伤/不开心"、46%的受试者表示在 "疼痛/不适"、50%的受试者表示在 "进行日常活动"、56%的受试者表示在 "行动能力 "和57%的受试者表示在 "照顾自己 "方面存在很多问题。与儿童报告相比,家长报告的 PROMIS T 分数明显较低,EQ-5D 领域的问题较多。使用轮椅、胎龄小、出生后住院时间长、矫形手术次数增加以及护理人员的压力与较低的 HRQL 评分有关:研究结果表明,必须同时考虑儿童和父母对 HRQL 的报告,并提供多模式干预措施,重点关注儿童和父母特征对促进 AMC 儿童 HRQL 的影响。
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引用次数: 0
Development of a prediction model for clinically-relevant fatigue: a multi-cancer approach. 开发临床相关疲劳预测模型:一种多癌症方法。
IF 3.3 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-01-01 Epub Date: 2024-11-09 DOI: 10.1007/s11136-024-03807-9
Dhirendra Adiprakoso, Dimitris Katsimpokis, Simone Oerlemans, Nicole P M Ezendam, Marissa C van Maaren, Janine A van Til, Thijs G W van der Heijden, Floortje Mols, Katja K H Aben, Geraldine R Vink, Miriam Koopman, Lonneke V van de Poll-Franse, Belle H de Rooij

Purpose: Fatigue is the most prevalent symptom across cancer types. To support clinicians in providing fatigue-related supportive care, this study aims to develop and compare models predicting clinically relevant fatigue (CRF) occurring between two and three years after diagnosis, and to assess the validity of the best-performing model across diverse cancer populations.

Methods: Patients with non-metastatic bladder, colorectal, endometrial, ovarian, or prostate cancer who completed a questionnaire within three months after diagnosis and a subsequent questionnaire between two and three years thereafter, were included. Predictor variables included clinical, socio-demographic, and patient-reported variables. The outcome was CRF (EORTC QLQC30 fatigue ≥ 39). Logistic regression using LASSO selection was compared to more advanced Machine Learning (ML) based models, including Extreme gradient boosting (XGBoost), support vector machines (SVM), and artificial neural networks (ANN). Internal-external cross-validation was conducted on the best-performing model.

Results: 3160 patients were included. The logistic regression model had the highest C-statistic (0.77) and balanced accuracy (0.65), both indicating good discrimination between patients with and without CRF. However, sensitivity was low across all models (0.22-0.37). Following internal-external validation, performance across cancer types was consistent (C-statistics 0.73-0.82).

Conclusion: Although the models' discrimination was good, the low balanced accuracy and poor calibration in the presence of CRF indicates a relatively high likelihood of underdiagnosis of future CRF. Yet, the clinical applicability of the model remains uncertain. The logistic regression performed better than the ML-based models and was robust across cohorts, suggesting an advantage of simpler models to predict CRF.

目的疲劳是各癌症类型中最常见的症状。为了支持临床医生提供与疲劳相关的支持性护理,本研究旨在开发和比较预测诊断后两到三年内发生的临床相关疲劳(CRF)的模型,并评估不同癌症人群中表现最佳模型的有效性:研究对象包括非转移性膀胱癌、结肠直肠癌、子宫内膜癌、卵巢癌或前列腺癌患者,这些患者在确诊后三个月内完成了问卷调查,并在此后两到三年内完成了后续问卷调查。预测变量包括临床、社会人口学和患者报告变量。结果为 CRF(EORTC QLQC30 疲劳度≥39)。使用 LASSO 选择的逻辑回归与更先进的基于机器学习(ML)的模型进行了比较,包括极端梯度提升(XGBoost)、支持向量机(SVM)和人工神经网络(ANN)。对表现最佳的模型进行了内部-外部交叉验证:结果:共纳入 3160 名患者。逻辑回归模型具有最高的 C 统计量(0.77)和平衡准确率(0.65),两者都表明该模型能很好地区分有 CRF 和无 CRF 的患者。然而,所有模型的灵敏度都较低(0.22-0.37)。经过内部-外部验证后,各癌症类型的表现一致(C 统计量为 0.73-0.82):结论:虽然模型的分辨能力较好,但在存在 CRF 的情况下,平衡准确率较低,校准能力较差,这表明未来 CRF 被漏诊的可能性相对较高。然而,该模型的临床适用性仍不确定。逻辑回归的表现优于基于 ML 的模型,并且在不同队列中表现稳健,这表明较简单的模型在预测 CRF 方面具有优势。
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引用次数: 0
Correction: Development of an ultra-short measure of eight domains of health-related quality of life for research and clinical care: the patient-reported outcomes measurement information system PROMIS-16 profile. 更正:开发用于研究和临床护理的健康相关生活质量八个领域的超短测量方法:患者报告结果测量信息系统Ⓡ PROMISⓇ-16概况。
IF 3.3 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-01-01 DOI: 10.1007/s11136-024-03762-5
Maria Orlando Edelen, Chengbo Zeng, Ron D Hays, Anthony Rodriguez, Janel Hanmer, Judy Baumhauer, Judy Cella, Bryce B Reeve, Patricia M Herman
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引用次数: 0
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Quality of Life Research
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