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The Multimorbidity Questionnaire (MMQ1): English translation and validation of a Danish patient reported outcome measure for quality of life in people with multiple long-term conditions in a cross-sectional survey.
IF 3.3 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-01-23 DOI: 10.1007/s11136-025-03901-6
Kieran Sweeney, Kristine Bissenbakker, Volkert Siersma, Alexandra Jønsson, Eddie Donaghy, David Henderson, Stewart W Mercer, John Brandt Brodersen

Purpose: MMQ1 is a Danish-language patient-reported outcome measure (PROM) for quality of life (QOL) in people with multiple long-term conditions (MLTC). It measures needs-based QOL across six scales: Physical ability, Concerns and worries, Limitations in daily life, Social life, Personal finances and Self-image. There is currently no such measure available in English. This study aimed to translate and validate MMQ1 for use in the United Kingdom.

Methods: Translation used a two-panel method (expert panel: n = 5; and lay panel: n = 6). Content validity was assessed via cognitive interviews (n = 6). A postal survey of 2,753 patients with MLTC recruited through eight GP practices in Scotland included EQ-5D-5L and ICE-CAP as comparator measures alongside MMQ1. Classical test theory psychometric analysis of survey responses followed the International Society for Quality of Life Research minimum reporting standards.

Results: Translation resulted in an English-language MMQ1 with good face validity. Cognitive interviews established good content validity. 597 survey responses were received (response rate 22%). Good internal consistency reliability and concurrent validity were demonstrated. Confirmatory factor analysis showed acceptable fit to the six-scales of MMQ1. Five of the six scales also demonstrated good discriminative ability for detecting clinically meaningful differences in QOL. However, inter-item and inter-scale correlations suggested item redundancy and scale overlap.

Conclusion: The English-language MMQ1 demonstrated adequate psychometric properties using classical test theory. Further validation using Rasch analysis is planned, and may help optimise and abbreviate the measure. This PROM has the potential to improve the measurement of QOL in MLTC research, including trials.

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引用次数: 0
Wellbeing and quality of life among parents of individuals with Fontan physiology. Fontan生理个体的父母的健康和生活质量。
IF 3.3 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-01-22 DOI: 10.1007/s11136-025-03890-6
Kate H Marshall, Yves d'Udekem, David S Winlaw, Diana Zannino, David S Celermajer, Karen Eagleson, Ajay J Iyengar, Dominica Zentner, Rachael Cordina, Gary F Sholler, Susan R Woolfenden, Nadine A Kasparian

Purpose: To examine global and health-related quality of life (QOL) among parents of individuals with Fontan physiology and determine associations with sociodemographic, parent and child-related health, psychological, and relational factors.

Methods: Parents participating in the Australian and New Zealand Fontan Registry (ANZFR) QOL Study (N = 151, Parent Mean age = 47.9 ± 10.2 years, age range: 31.6-79.6 years, 66% women; child Mean age = 16.3 ± 8.8, age range: 6.9-48.7 years, 40% female) completed a series of validated measures. Health-related QOL was assessed using the PedsQL 4.0 Core Generic Scales for adults and global QOL was assessed using a visual analogue scale (0-10).

Results: Most parents (81%) reported good global QOL (≥ 6), consistent with broader population trends. Nearly one-third of parents (28%) reported at-risk health-related QOL (based on total PedsQL scores) with physical functioning most affected (44%). Psychological factors, including psychological stress and sense of coherence, emerged as the strongest correlates of global and health-related QOL, explaining an additional 16 to 30% of the variance (using marginal R2). Final models explained 35 and 57% and of the variance in global and health-related QOL, respectively (marginal R2). Relational factors, including perceived social support and family functioning contributed minimally when analyzed alongside psychological variables.

Conclusion: While parents of individuals with Fontan physiology report good global QOL, challenges in health-related QOL exist. We identified key psychological, sociodemographic, and health-related factors associated with parental QOL outcomes. These data may aid early identification of physical and psychosocial difficulties and guide targeted health resource allocation for this population.

目的:检查Fontan生理个体的父母的整体和健康相关生活质量(QOL),并确定其与社会人口统计学、父母和儿童相关健康、心理和相关因素的关系。方法:参加澳大利亚和新西兰Fontan Registry (ANZFR) QOL研究的父母(N = 151),父母平均年龄= 47.9±10.2岁,年龄范围:31.6-79.6岁,女性66%;平均年龄= 16.3±8.8岁,年龄范围:6.9-48.7岁,女性占40%)完成了一系列验证措施。健康相关生活质量采用成人PedsQL 4.0核心通用量表进行评估,整体生活质量采用视觉模拟量表(0-10)进行评估。结果:大多数家长(81%)报告了良好的总体生活质量(≥6),与更广泛的人口趋势一致。近三分之一(28%)的父母报告了与健康相关的生活质量风险(基于PedsQL总分),其中身体功能受影响最大(44%)。心理因素,包括心理压力和连贯感,成为整体和健康相关生活质量的最强相关因素,解释了额外的16%至30%的方差(使用边际R2)。最终模型分别解释了35%和57%的总体生活质量和与健康相关的生活质量方差(边际R2)。当与心理变量一起分析时,包括感知到的社会支持和家庭功能在内的关系因素的影响最小。结论:虽然Fontan生理个体的父母报告了良好的总体生活质量,但存在与健康相关的生活质量挑战。我们确定了与父母生活质量结果相关的关键心理、社会人口统计学和健康相关因素。这些数据可能有助于早期识别身体和心理困难,并指导有针对性地为这一人群分配卫生资源。
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引用次数: 0
Patient-reported outcome measures (PROMs) used among liver transplant recipients: a systematic review and methodological quality appraisal. 肝移植受者中使用的患者报告结果测量(PROMs):系统回顾和方法学质量评价。
IF 3.3 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-01-20 DOI: 10.1007/s11136-025-03893-3
Qi Zhang, Xiao Chen, YiChen Kang, JingXian Yu, YuXia Zhang

Aim: To identify instruments used to measure patient-reported outcomes after LT, and critically evaluate their measurement properties.

Methods: Five online databases were searched to find English-language LT-specific PROMs from their inception to October 2024. Studies describing the development or validation of PROMs were included. Two reviewers extracted and synthesized information about the characteristics of the studies and instruments. The methodological quality of the included studies was evaluated using the Consensus-Based Standards for the Selection of Health Measurement Instrument (COSMIN). Two reviewers independently evaluated the methodological quality of the included instruments.

Results: A total of 17 studies involving 14 PROMs met the inclusion criteria and were included in this review. The included PROMs assessed a range of outcomes, including health-related quality of life, therapeutic adherence, symptom experience, social participation, feeling for the donor, satisfaction and informational needs. None of the 14 scales reported the ten boxes of measurement properties outlined by the COSMIN. Among all the measurement properties, content validity from expert (64.3%, 9/14) and internal consistency (57.1%, 8/14) were the two most frequently measured attributes. Less than half of the studies evaluated the content validity from the patients' perspective. Four studies evaluated structural validity using exploratory factor analysis, but no study conducted confirmatory factor analysis or used IRT method to measure the structural validity.

Conclusion: This systematic review provided an overall picture and detailed analysis of LT-specific PROMs, and highlighted the paucity of well-developed and validated instruments. Further studies are urgently needed, both in terms of exploring patients' health concerns after LT and validating the instruments.

Reporting method: This study is reported according to the PRISMA Statement.

目的:确定用于测量肝移植后患者报告结果的仪器,并批判性地评估其测量特性。方法:检索5个在线数据库,查找从成立到2024年10月的英语lt特异性prom。描述PROMs开发或验证的研究包括在内。两位审稿人提取并综合了有关研究和仪器特征的信息。采用基于共识的健康测量工具选择标准(COSMIN)评估纳入研究的方法学质量。两名审稿人独立评估了纳入的仪器的方法学质量。结果:共有17项研究,涉及14个PROMs符合纳入标准,被纳入本综述。纳入的PROMs评估了一系列结果,包括健康相关的生活质量、治疗依从性、症状体验、社会参与、对供体的感觉、满意度和信息需求。14个尺度中没有一个报告了COSMIN概述的10个测量属性。在所有测量属性中,来自专家的内容效度(64.3%,9/14)和内部一致性(57.1%,8/14)是测量频率最高的两个属性。不到一半的研究从患者的角度评估内容效度。有4项研究采用探索性因子分析评估结构效度,但没有研究采用验证性因子分析或IRT方法测量结构效度。结论:本系统综述提供了lt特异性PROMs的总体情况和详细分析,并强调了发达和经过验证的仪器的缺乏。我们迫切需要进一步的研究,无论是在探索患者在肝移植后的健康问题方面,还是在验证这些仪器方面。报告方法:本研究按照PRISMA声明进行报告。
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引用次数: 0
Clinical cut-offs for hip- and knee arthroplasty outcome - minimal clinically important improvement (MCII) and patient acceptable symptom state (PASS) of patient-reported outcome measures (PROM). 髋关节和膝关节置换术结果的临床临界值-患者报告的结果测量(PROM)的最小临床重要改善(MCII)和患者可接受症状状态(PASS)。
IF 3.3 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-01-20 DOI: 10.1007/s11136-025-03896-0
Aksel Paulsen, Ane Djuv, Ingvild Dalen

Purpose: Clinical cut-offs like minimum clinically important improvement (MCII) and patient acceptable symptom state (PASS) increase the interpretability of patient reported outcome measures (PROMs), but cut-off estimates vary considerably, clouding a clear definition of a successful surgical outcome. We report estimates of MCII and PASS following hip- and knee arthroplasty using multiple methods and compare the different estimation methods.

Methods: Elective hip or knee arthroplasty patients who underwent the regular pre- and postoperative assessments 2014-2018 were included. The generic EQ-5D-5L and either the Hip or Knee disability/injury and Osteoarthritis Outcome Score (HOOS/KOOS) were used. MCII and PASS were estimated based on multiple estimation techniques.

Results: Distributions were skewed, with up to 95% being acceptable according to anchor questions. MCII estimates for HOOS/KOOS Pain ranged 21-60/10-47, with fewest in-sample misclassifications for the lowest cut-offs, provided by the 75th percentile approach. PASS estimates for HOOS/KOOS Pain ranged 84-93/78-91, for EQ-5D Index/EQ-VAS 0.87-0.92/66-79 (for hip), and 0.79-0.88/66-76 (for knee), with fewest misclassifications for the 75th percentile approach (hip) and Pythagoras approach (knee). The 75th percentile approach was the approach most often giving MCII estimates below the minimal detectable change (MDC).

Conclusions: We report new one-year estimates of MCII and PASS of HOOS, KOOS and EQ-5D subscales following hip- and knee arthroplasty. Estimates varied considerably when using different anchors and estimation techniques. Overall, the 75th percentile approach had fewest misclassifications, and had the lowest thresholds for the MCII estimations, but which were often below the MDC.

目的:最小临床重要改善(MCII)和患者可接受症状状态(PASS)等临床截止值增加了患者报告的结果测量(PROMs)的可解释性,但截止值估计差异很大,模糊了成功手术结果的明确定义。我们报道使用多种方法估计髋关节和膝关节置换术后的MCII和PASS,并比较不同的估计方法。方法:纳入2014-2018年定期接受术前和术后评估的选择性髋关节或膝关节置换术患者。使用通用的EQ-5D-5L和髋关节或膝关节残疾/损伤和骨关节炎结局评分(HOOS/ oos)。MCII和PASS是基于多重估计技术估计的。结果:分布是偏斜的,根据锚定问题,可接受的比例高达95%。hos / oos疼痛的MCII估计值范围为21-60/10-47,样本内错误分类最少,下限最低,由第75百分位方法提供。HOOS/ oos疼痛的PASS估计范围为84-93/78-91,EQ-5D Index/EQ-VAS 0.87-0.92/66-79(髋关节)和0.79-0.88/66-76(膝关节),第75个百分点入路(髋关节)和毕达哥拉斯入路(膝关节)的错误分类最少。第75百分位方法是最常给出低于最小可检测变化(MDC)的MCII估计值的方法。结论:我们报告了髋关节和膝关节置换术后HOOS、oos和EQ-5D亚量表的MCII和PASS的新一年估计。当使用不同的锚点和估计技术时,估计会有很大差异。总体而言,第75百分位方法的错误分类最少,并且MCII估计的阈值最低,但通常低于MDC。
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引用次数: 0
Comparison of patient-reported symptoms with multi-item patient-reported outcome measures of fatigue, anxiety, and depression in the clinical care of women undergoing chemotherapy for early breast cancer. 早期乳腺癌化疗妇女临床护理中患者报告的症状与多项患者报告的疲劳、焦虑和抑郁结局指标的比较
IF 3.3 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-01-17 DOI: 10.1007/s11136-025-03891-5
Kirsten A Nyrop, Allison M Deal, Coral H Aman, Hyman B Muss, Bryce B Reeve

Background: As patient-reported symptoms are increasingly incorporated into routine clinical practice and captured in electronic medical records these data can be used to conduct health-related quality of life research studies. This study compares symptom reports from the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) and its precursor patient reported symptom monitoring (PRSM) (hereafter PRSM/PRO-CTCAE) with multi-item patient-reported outcome (PRO) scales for fatigue (Functional Assessment of Chronic Illness Therapy/FACIT-Fatigue) and depression and anxiety (Mental Health Index/MHI).

Methods: This is a secondary analysis of data collected from women with early breast cancer (Stage I-III) scheduled for chemotherapy who completed PRSM/PRO-CTCAE, FACIT-Fatigue, and MHI scales pre- and post-chemotherapy. Spearman correlation coefficients estimated the magnitude and direction of correlations between measures (convergent validity). For each symptom, patients were then categorized based on who improved, stayed the same, or worsened on the composite PRSM/PRO-CTCAE score, and changes in scores on the PRO scales were compared.

Results: In a sample of 374 women, mean age was 57 years (SD 12.6) with 76% White. PRSM/PRO-CTCAE fatigue measures were strongly correlated with FACIT-Fatigue total scale and had mixed moderate to strong correlation for individual items within the FACIT-Fatigue scale. PRSM/PRO-CTCAE Sad and Anxiety measures were strongly correlated with MHI-Depression and MHI-Anxiety total scales, respectively, and had mixed moderate to strong correlation with individual items within the MHI subscales. PRSM/PRO-CTCAE pre-post changes in symptom scores mirrored pre-post changes in FACIT-Fatigue and MHI subscales.

背景:随着患者报告的症状越来越多地纳入常规临床实践并被捕获到电子病历中,这些数据可用于开展与健康相关的生活质量研究。本研究比较了不良事件通用术语标准(PRO- ctcae)的患者报告结果版本及其前驱患者报告症状监测(PRSM)(以下简称PRSM/PRO- ctcae)与疲劳(慢性疾病治疗功能评估/FACIT-Fatigue)和抑郁和焦虑(心理健康指数/MHI)的多项患者报告结果(PRO)量表的症状报告。方法:这是对计划化疗的早期乳腺癌(I-III期)妇女收集的数据进行二次分析,这些妇女在化疗前后完成了PRSM/PRO-CTCAE、FACIT-Fatigue和MHI量表。Spearman相关系数估计了测量之间相关性的大小和方向(收敛效度)。对于每种症状,然后根据PRSM/PRO- ctcae综合评分的改善,保持不变或恶化对患者进行分类,并比较PRO量表评分的变化。结果:在374名女性样本中,平均年龄为57岁(SD 12.6), 76%为白人。PRSM/PRO-CTCAE疲劳测量与facit -疲劳总量表有很强的相关性,而facit -疲劳量表内的个别项目有中等到强的相关性。PRSM/PRO-CTCAE Sad和Anxiety测量分别与MHI- depression和MHI-Anxiety总量表呈强相关,与MHI子量表内的单项有中等到强的混合相关。PRSM/PRO-CTCAE工作前症状评分的变化反映了工作前FACIT-Fatigue和MHI分量表的变化。
{"title":"Comparison of patient-reported symptoms with multi-item patient-reported outcome measures of fatigue, anxiety, and depression in the clinical care of women undergoing chemotherapy for early breast cancer.","authors":"Kirsten A Nyrop, Allison M Deal, Coral H Aman, Hyman B Muss, Bryce B Reeve","doi":"10.1007/s11136-025-03891-5","DOIUrl":"https://doi.org/10.1007/s11136-025-03891-5","url":null,"abstract":"<p><strong>Background: </strong>As patient-reported symptoms are increasingly incorporated into routine clinical practice and captured in electronic medical records these data can be used to conduct health-related quality of life research studies. This study compares symptom reports from the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) and its precursor patient reported symptom monitoring (PRSM) (hereafter PRSM/PRO-CTCAE) with multi-item patient-reported outcome (PRO) scales for fatigue (Functional Assessment of Chronic Illness Therapy/FACIT-Fatigue) and depression and anxiety (Mental Health Index/MHI).</p><p><strong>Methods: </strong>This is a secondary analysis of data collected from women with early breast cancer (Stage I-III) scheduled for chemotherapy who completed PRSM/PRO-CTCAE, FACIT-Fatigue, and MHI scales pre- and post-chemotherapy. Spearman correlation coefficients estimated the magnitude and direction of correlations between measures (convergent validity). For each symptom, patients were then categorized based on who improved, stayed the same, or worsened on the composite PRSM/PRO-CTCAE score, and changes in scores on the PRO scales were compared.</p><p><strong>Results: </strong>In a sample of 374 women, mean age was 57 years (SD 12.6) with 76% White. PRSM/PRO-CTCAE fatigue measures were strongly correlated with FACIT-Fatigue total scale and had mixed moderate to strong correlation for individual items within the FACIT-Fatigue scale. PRSM/PRO-CTCAE Sad and Anxiety measures were strongly correlated with MHI-Depression and MHI-Anxiety total scales, respectively, and had mixed moderate to strong correlation with individual items within the MHI subscales. PRSM/PRO-CTCAE pre-post changes in symptom scores mirrored pre-post changes in FACIT-Fatigue and MHI subscales.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-01-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143010571","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
Correction: Multiple social factors are associated with wellbeing when accounting for shared genetic and environmental confounding. 更正:当考虑到共同的遗传和环境混杂因素时,多个社会因素与幸福有关。
IF 3.3 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-01-15 DOI: 10.1007/s11136-024-03886-8
Ludvig Daae Bjørndal, Ragnhild Bang Nes, Ziada Ayorech, Olav Vassend, Espen Røysamb
{"title":"Correction: Multiple social factors are associated with wellbeing when accounting for shared genetic and environmental confounding.","authors":"Ludvig Daae Bjørndal, Ragnhild Bang Nes, Ziada Ayorech, Olav Vassend, Espen Røysamb","doi":"10.1007/s11136-024-03886-8","DOIUrl":"10.1007/s11136-024-03886-8","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-01-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142984611","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
Impact of surgery versus follow-up on psychological distress in patients with indeterminate pulmonary nodules: A prospective observational study. 手术与随访对不确定肺结节患者心理困扰的影响:一项前瞻性观察研究。
IF 3.3 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-01-15 DOI: 10.1007/s11136-024-03876-w
Junhan Wu, Weitao Zhuang, Rixin Chen, Haijie Xu, Zijie Li, Zihua Lan, Xin Xia, Zhe He, Shaopeng Li, Cheng Deng, Wei Xu, Qiuling Shi, Yong Tang, Guibin Qiao

Purpose: To investigate whether surgery is more effective than follow-up in reducing psychological distress for patients with observable indeterminate pulmonary nodules (IPNs) and to assess if psychological distress can serve as a potential surgical indication for IPNs.

Methods: This prospective observational study included 341 patients with abnormal psychometric results, as measured by the Hospital Anxiety and Depression Scale (HADS). Of these, 262 patients opted for follow-up and 79 chose surgery. Initial psychological assessments (HADS1) were conducted at enrollment following nodule detection, with a second assessment (HADS2) one year later. A comparative analysis of dynamic psychological changes (ΔHADS: HADS2-HADS1) between the follow-up and surgical groups was performed.

Results: Both groups showed reductions in HADS-A [- 3 (IQR, - 7 to - 1) for follow-up and - 3 (IQR, - 6 to - 1) for surgery] and HADS-D scores [- 2 (IQR, - 4 to 0) for follow-up and - 3 (IQR, - 7 to 0) for surgery]. Univariate analysis revealed that the surgical group had a significantly greater reduction in HADS-D scores compared to the follow-up group (Z = - 2.08, P = 0.037), but there were no significant differences in the changes in HADS-A scores between the groups (Z = - 1.04, P = 0.300). However, in multivariable analysis, surgery did not significantly improve the alleviation of depressive symptoms compared to follow-up (β = - 0.72, 95% CI: - 1.57 to 0.14, P = 0.101). Within the surgical group, female patients reported less relief from anxiety than male patients (Z = - 2.32, P = 0.021), and symptomatic patients experienced less relief from both anxiety (Z = - 2.14, P = 0.032) and depression (Z = - 3.01, P = 0.003).

Conclusions: Surgery does not provide additional psychological benefits over follow-up. This study does not support using psychological distress as a criterion for surgical intervention in IPNs from a psychological perspective. Trial registry ClinicalTrials.gov (NCT04857333).

目的:研究手术是否比随访更能有效减轻可观察到的不确定肺结节(IPNs)患者的心理压力,并评估心理压力是否可作为 IPNs 的潜在手术指征:这项前瞻性观察研究纳入了 341 名心理测量结果异常的患者,测量方法为医院焦虑抑郁量表(HADS)。其中,262 名患者选择了随访,79 名患者选择了手术。最初的心理评估(HADS1)是在发现结节后入院时进行的,一年后进行第二次评估(HADS2)。对随访组和手术组的动态心理变化(ΔHADS:HADS2-HADS1)进行了比较分析:结果:两组患者的HADS-A评分[随访组为-3(IQR,-7至-1),手术组为-3(IQR,-6至-1)]和HADS-D评分[随访组为-2(IQR,-4至0),手术组为-3(IQR,-7至0)]均有所下降。单变量分析显示,与随访组相比,手术组的 HADS-D 评分下降幅度明显更大(Z = - 2.08,P = 0.037),但两组之间的 HADS-A 评分变化无显著差异(Z = - 1.04,P = 0.300)。然而,在多变量分析中,与随访相比,手术并没有明显改善抑郁症状的缓解(β = - 0.72,95% CI:- 1.57 至 0.14,P = 0.101)。在手术组中,女性患者的焦虑缓解程度低于男性患者(Z = - 2.32,P = 0.021),无症状患者的焦虑缓解程度低于男性患者(Z = - 2.14,P = 0.032),抑郁缓解程度低于男性患者(Z = - 3.01,P = 0.003):结论:与随访相比,手术不会带来额外的心理益处。从心理学角度来看,本研究不支持将心理困扰作为 IPN 手术干预的标准。试验注册 ClinicalTrials.gov (NCT04857333)。
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引用次数: 0
Long‑term physical and mental Health-Related Quality of Life in Italian patients post COVID-19 hospitalisation. 意大利COVID-19住院后患者的长期身心健康相关生活质量
IF 3.3 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-01-08 DOI: 10.1007/s11136-024-03882-y
Marco Viola, Carlotta Sacerdote, Giovannino Ciccone, Edoardo Donarelli, Manolis Kogevinas, Assunta Rasulo, Anna Toscano, Eva Pagano, Rosalba Rosato

Purpose: Prior evidence suggests that patients' Health Related Quality of Life (HRQoL) worsens after COVID-19. This study aimed to investigate HRQoL in Italian patients post-hospitalization for COVID-19, focusing on changes in physical and mental HRQoL over time since COVID-19 diagnosis.

Methods: A cohort of patients hospitalized for COVID-19 at Molinette Hospital in Turin, Italy, was contacted post-discharge to assess HRQoL using the SF-36 questionnaire. Patients completed the questionnaire only once at a different time since diagnosis. This design allowed for the analysis of responses up to three years after diagnosis. Measured scores were compared with normative data from the Italian population using z-scores. HRQoL differences by gender, comorbidities, and self-perception of health status before and after COVID-19 were tested. The effect of time since diagnosis on physical (PCS) and mental (MCS) SF-36 scores was analysed using multiple linear models and stratified analyses.

Results: A total of 601 patients completed the questionnaire. HRQoL was significantly lower compared to the normative Italian population. Men and individuals without comorbidities had better HRQoL, and self-perceptions of health status before and after COVID-19 influenced HRQoL. Time since diagnosis was associated with improved PCS, but MCS remained unaffected. Mental health declined in patients using anxiolytics post-COVID-19, and increasing age negatively affected physical health.

Conclusion: Our findings highlight the impact of time since diagnosis on HRQoL post-COVID-19 in an Italian population and suggest the need for further investigation into the pandemic's effects on HRQoL. Physicians should implement measures to improve mental HRQoL post-COVID-19.

目的:既往证据表明,COVID-19患者健康相关生活质量(HRQoL)恶化。本研究旨在调查意大利患者COVID-19住院后的HRQoL,重点关注自COVID-19诊断以来身体和精神HRQoL随时间的变化。方法:选取意大利都灵Molinette医院新冠肺炎住院患者为研究对象,在出院后采用SF-36问卷评估HRQoL。患者仅在诊断后的不同时间完成一次问卷。这种设计允许分析诊断后长达三年的反应。测量得分与意大利人口的规范数据使用z分数进行比较。检测不同性别、合并症和COVID-19前后自我健康状况感知的HRQoL差异。采用多元线性模型和分层分析分析自诊断时间对生理(PCS)和心理(MCS) SF-36评分的影响。结果:共601例患者完成问卷调查。与意大利标准人群相比,HRQoL显著降低。男性和无合并症个体的HRQoL较好,自我认知的健康状况对HRQoL有影响。诊断后的时间与PCS改善有关,但MCS不受影响。covid -19后使用抗焦虑药物的患者心理健康状况下降,年龄增长对身体健康产生负面影响。结论:我们的研究结果突出了自诊断以来时间对意大利人群covid -19后HRQoL的影响,并表明有必要进一步调查大流行对HRQoL的影响。医师应采取措施改善covid -19后患者的心理HRQoL。
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引用次数: 0
Bayesian item response theory to estimate power in clinical trials with patient-reported outcomes as endpoints. 贝叶斯项目反应理论在以患者报告结果为终点的临床试验中估计功效。
IF 3.3 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-01-08 DOI: 10.1007/s11136-024-03874-y
Xiaohang Mei, Joseph C Cappelleri, Jinxiang Hu

Purpose: Patient-Reported Outcomes (PROs) are widely used in clinical trials, epidemiological research, quality of life (QOL) studies, routine clinical care, and medical surveillance. The Patient Reported Outcomes Measurement Information System (PROMIS) is a system of reliable and standardized measures of PROs developed with Item Response Theory (IRT) using latent scores. Power estimation is critical to clinical trials and research designs. However, in clinical trials with PROs as endpoints, observed scores are often used to calculate power rather than latent scores.

Methods: In this paper, we conducted a series of simulations to compare the power obtained with IRT latent scores, including Bayesian IRT, Frequentist IRT, and observed scores, focusing on small sample size common in pilot studies and Phase I/II trials. Taking the PROMIS depression measures as an example, we simulated data and estimated power for two-armed clinical trials manipulating the following factors: sample size, effect size, and number of items. We also examined how misspecification of effect size affected power estimation.

Results: Our results showed that the Bayesian IRT, which incorporated prior information into latent score estimation, yielded the highest power, especially when sample size was small. The effect of misspecification diminished as sample size increased.

Conclusion: For power estimation in two-armed clinical trials with standardized PRO endpoints, if a medium effect size or larger is expected, we recommend BIRT simulation with well-grounded informative priors and a total sample size of at least 40.

目的:患者报告结局(pro)被广泛应用于临床试验、流行病学研究、生活质量(QOL)研究、常规临床护理和医学监测。患者报告的结果测量信息系统(PROMIS)是一套可靠的、标准化的PROs测量系统,采用项目反应理论(IRT)开发,使用潜在分数。功率估计对临床试验和研究设计至关重要。然而,在以PROs为终点的临床试验中,观察得分通常用于计算功效,而不是潜在得分。方法:在本文中,我们进行了一系列模拟,将获得的功率与IRT潜在评分(包括Bayesian IRT, Frequentist IRT和观察评分)进行比较,重点是在试点研究和I/II期试验中常见的小样本量。以PROMIS抑郁测量为例,我们模拟数据并估计双臂临床试验的功效,操纵以下因素:样本量、效应量和项目数。我们还研究了效应大小的错误说明如何影响功率估计。结果:我们的研究结果表明,将先验信息纳入潜在分数估计的贝叶斯IRT产生了最高的功率,特别是在样本量较小的情况下。随样本量的增加,错配的影响减小。结论:对于具有标准化PRO终点的双臂临床试验的功率估计,如果预期中等或更大的效应量,我们推荐具有充分基础的信息先验和总样本量至少为40的BIRT模拟。
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引用次数: 0
"I think her life got so much better": parents' perceptions of children's quality of life following treatment of tracheomalacia with aortopexy. “我觉得她的生活好多了”:父母对气管软化症主动脉固定术治疗后孩子生活质量的看法。
IF 3.3 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-01-05 DOI: 10.1007/s11136-024-03888-6
Bethany L Brockbank, Greg S J Dewar, Richard J D Hewitt, Colin C R Butler, Jo Wray

Background: Aortopexy is a procedure to reduce pressure on the trachea in children with severe tracheomalacia. Health-related quality of life (HRQoL) has not been studied in children who have undergone aortopexy; we aimed to explore parents' perceptions of their child's HRQoL before and after aortopexy.

Methods: Parents of children < 18 years who underwent aortopexy at a quaternary specialist centre were purposively sampled and invited to participate in a semi-structured interview. Data were analysed using reflective thematic and content analysis.

Results: Eight interviews (23-56 min) were completed with parents whose children were aged 1.9-12.1 years. HRQoL is explored through themes: a challenging diagnosis, lifechanging, and an understanding of limitations. Parents struggled to obtain a diagnosis of tracheomalacia while their child experienced serious symptoms. Aortopexy was seen as life-saving and allowed a return to family life. Airway safety, having their health and achieving a better quality of life were important outcomes of the procedure.

Conclusion: Quality of life following aortopexy was perceived to be greatly improved. Children still struggled in aspects of their life, however families worked within their child's limitations, appreciating the life-saving nature of the intervention, and accepting the complexities of their child's comorbidities. Holistic interventions are important for those at risk of poor HRQoL outcomes.

背景:主动脉固定术是一种减轻严重气管软化症患儿气管压力的方法。健康相关生活质量(HRQoL)尚未在接受过主动脉固定术的儿童中进行研究;我们的目的是探讨父母对孩子主动脉切除术前后HRQoL的看法。结果:对1.9 ~ 12.1岁儿童的家长进行了8次访谈(23 ~ 56分钟)。HRQoL通过以下主题进行探讨:具有挑战性的诊断,改变生命,以及对局限性的理解。当他们的孩子出现严重症状时,父母们却很难得到气管软化症的诊断。主动脉切除术被视为救命之术,可以让病人回归家庭生活。气道安全、健康和获得更好的生活质量是手术的重要结果。结论:主动脉固定术后患者的生活质量明显改善。孩子们仍然在生活的各个方面挣扎,然而,家庭在孩子的限制范围内工作,欣赏干预的挽救生命的性质,并接受他们孩子的合并症的复杂性。整体干预对于那些有不良HRQoL结果风险的人很重要。
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Quality of Life Research
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