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Exploring the factors influencing the health-related quality of life in patients experiencing adverse drug reactions: a cross-sectional study. 探索影响药物不良反应患者健康相关生活质量的因素:一项横断面研究。
IF 2.4 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-27 DOI: 10.1186/s41687-024-00790-0
Garapati Pavan, Manish Kumar, Krishna Murti, Sameer Dhingra, V Ravichandiran

Background: This study aimed to assess the factors influencing health-related quality of life (HRQoL) in patients experiencing adverse drug reactions (ADRs) at a tertiary care public sector hospital. A cross-sectional study was conducted over a period of 18 months, and included both male and female patients aged 18 years and above. Patients who visited the outpatient and inpatient departments with complaints associated with ADRs were included in this study. HRQoL data were collected using the EuroQol-5 Dimension-5 Level (EQ-5D-5L) questionnaire to assess five dimensions of health on a five-level scale. Descriptive statistics, t-tests, and analysis of variance were used to analyze the data. Multivariate regression analysis was performed to identify the potential determinants of HRQoL.

Results: A total of 316 patients were included in the study among these participants, of which 54% were female, and 65% were from rural areas. The majority (68%) of the patients had moderately severe ADRs, and 63% of the participants had an income < 2.5 lakh Indian rupees (3009 USD). The mean EQ-5D-5L and EuroQoL Visual Analog Scale (EQ VAS) scores of the study participants were 0.714 and 69.73, respectively. The variables ADR severity, income, and age showed a significant difference (p < 0.05) in HRQoL.

Conclusion: This study provides insights into HRQoL among patients with ADRs and identifies the determinants of HRQoL. The findings of this study will contribute to improving patient-centered care and optimizing patient outcomes.

研究背景本研究旨在评估影响一家公立三级医院药物不良反应(ADR)患者健康相关生活质量(HRQoL)的因素。这项横断面研究为期 18 个月,包括 18 岁及以上的男性和女性患者。研究对象包括在门诊和住院部就诊、主诉与 ADR 相关的患者。HRQoL 数据采用 EuroQol-5 Dimension-5 Level (EQ-5D-5L) 问卷收集,以五级量表评估五个健康维度。数据分析采用了描述性统计、t 检验和方差分析。此外,还进行了多变量回归分析,以确定影响 HRQoL 的潜在决定因素:研究共纳入 316 名患者,其中 54% 为女性,65% 来自农村地区。大多数患者(68%)有中度严重的 ADR,63%的参与者有收入:本研究有助于深入了解 ADR 患者的 HRQoL,并确定 HRQoL 的决定因素。研究结果将有助于改善以患者为中心的护理和优化患者的治疗效果。
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引用次数: 0
Can the different versions of the Shirom-Melamed Burnout Measure be used to measure burnout among healthcare professionals? A systematic review of psychometric properties. 不同版本的 Shirom-Melamed 职业倦怠测量法能否用于测量医护人员的职业倦怠?心理测量学特性系统回顾。
IF 2.4 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-26 DOI: 10.1186/s41687-024-00788-8
Sabrina Figueiredo, Jacques Arrieux, Samia Abdallah, Timothy C McCall, Ulrich Koch, Eliezer Oliveira
<p><strong>Background: </strong>The prevalence of Occupational Burnout is high among healthcare professionals (HCP). Hence, it is crucial to have robust measures for ascertaining burnout in this population. The Shirom-Melamed Burnout Measure is a prevalent tool used in the diagnosis of burnout, and in the delivery planning of mental health services. The 14-item Shirom-Melamed Burnout Measure (SMBM) was developed after a methodological revision of the 22-item Shirom-Melamed Burnout Questionnaire (SMBQ). Studies on the psychometric properties of the SMBM and SMBQ exist, but there remains a need for thorough evaluation to assess the methodological quality of individual studies. To address this gap, this systematic review aimed to critically appraise the measurement properties of the different versions of the Shirom-Melamed Burnout Measure/Questionnaire (SMBM/Q) used among healthcare professionals.</p><p><strong>Methodology: </strong>Four databases (PubMed, CINAHL, PsychINFO, and Scopus) were searched for studies on the psychometric properties of all versions of the SMBM/Q among HCP. The methodological quality of the studies was evaluated using the COSMIN Risk of Bias checklist. Evidence supporting the measurement properties (EMP) of the SMBM was synthesized using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach.</p><p><strong>Results: </strong>Our final pool consisted of five research articles. One study on the 12-item SMBM was included to estimate content validity, two studies reported on the 14-item SMBM, while the other two employed the 22-item version. Interestingly, each study used the SMBM in a different language, namely English/Hebrew, Chinese, French, Serbian, and Swedish. Structural validity, internal consistency, and construct validity are the SMBM's most assessed measurement properties. The Hebrew and French versions demonstrated high levels of structural validity and internal consistency, and the remaining reports on validity demonstrated low levels due to methodological flaws.</p><p><strong>Conclusions: </strong>Per COSMIN guidelines, the SMBM should not be utilized for clinical purposes due to insufficient content validity, but has promising potential with ongoing research. Engaging critical stakeholders for concept elicitation will ensure the relevance, comprehensiveness, and comprehensibility of the PRO items. Likewise, establishing an MIC will allow capturing change over time, which will benefit longitudinal experimental studies. Occupational burnout is a significant problem among healthcare professionals, and it is crucial to have a reliable tool to measure it. The Shirom-Melamed Burnout Measure (SMBM) is commonly used to diagnose burnout and plan mental health services. Studies on the psychometric properties of the SMBM exist, but there remains a need for thorough evaluation to assess the methodological quality of individual studies. To address this gap, this systematic review critically appr
背景:医疗保健专业人员(HCP)的职业倦怠发生率很高。因此,制定可靠的措施来确定这一人群的职业倦怠至关重要。Shirom-Melamed 职业倦怠测量法是诊断职业倦怠和规划心理健康服务的常用工具。由 14 个项目组成的 Shirom-Melamed 职业倦怠测量(SMBM)是在对由 22 个项目组成的 Shirom-Melamed 职业倦怠问卷(SMBQ)进行方法修订后开发的。目前已有关于 SMBM 和 SMBQ 心理测量特性的研究,但仍需对其进行全面评估,以确定各项研究的方法质量。为了填补这一空白,本系统性综述旨在对医疗保健专业人员使用的不同版本的希罗姆-梅拉梅德职业倦怠测量/问卷(SMBM/Q)的测量特性进行严格评估:在四个数据库(PubMed、CINAHL、PsychINFO 和 Scopus)中搜索了有关所有版本的 SMBM/Q 在医护人员中的心理测量特性的研究。使用 COSMIN 偏差风险检查表对研究的方法学质量进行了评估。采用建议评估、发展和评价分级法(GRADE)对支持 SMBM 测量特性(EMP)的证据进行了综合:我们最终汇集了五篇研究文章。其中一项研究使用了 12 个项目的 SMBM,以评估其内容效度;两项研究使用了 14 个项目的 SMBM,而另外两项研究则使用了 22 个项目的 SMBM。有趣的是,每项研究都使用了不同语言的 SMBM,即英语/希伯来语、中文、法语、塞尔维亚语和瑞典语。结构效度、内部一致性和建构效度是 SMBM 最值得评估的测量属性。希伯来语和法语版本显示出较高的结构效度和内部一致性,而其余的效度报告则由于方法上的缺陷而显示出较低的效度:结论:根据 COSMIN 的指导方针,由于 SMBM 的内容有效性不足,因此不应将其用于临床目的,但随着研究的不断深入,SMBM 仍有很大的发展潜力。让重要的利益相关者参与概念激发,将确保 PRO 项目的相关性、全面性和可理解性。同样,建立 MIC 可以捕捉随时间推移而发生的变化,这将有利于纵向实验研究。职业倦怠是医护专业人员面临的一个重大问题,因此拥有一个可靠的工具来测量职业倦怠至关重要。Shirom-Melamed 职业倦怠测量法(SMBM)通常用于诊断职业倦怠和规划心理健康服务。目前已有关于 SMBM 心理测量特性的研究,但仍有必要对其进行全面评估,以评价各项研究的方法质量。为了弥补这一不足,本系统性综述对医护人员使用的不同版本的希罗姆-梅拉梅德职业倦怠测量法(SMBM)的测量特性进行了严格评估。我们的研究结果表明,只有少数研究对 SMBM 进行了研究,而且这些研究使用了不同语言的工具。结构效度、内部一致性和构造效度是 SMBM 最值得评估的测量属性。我们建议需要开展更多的研究来评估 SMBM 的内容效度。我们还建议,重要的利益相关者应参与到 SMBM 的开发中来,以确保其相关性、全面性和易理解性。
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引用次数: 0
Economic burden and quality of life of caregivers of patients with sickle cell disease in the United Kingdom and France: a cross-sectional study. 英国和法国镰状细胞病患者照顾者的经济负担和生活质量:一项横断面研究。
IF 2.4 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-26 DOI: 10.1186/s41687-024-00784-y
Martin Besser, Sian Bissell O'Sullivan, Siobhan Bourke, Louise Longworth, Giovanna Tedesco Barcelos, Yemi Oluboyede

Background: Sickle cell disease (SCD), a genetic blood disorder that affects red blood cells and oxygen delivery to body tissues, is characterized by haemolytic anaemia, pain episodes, fatigue, and end-organ damage with acute and chronic dimensions. Caring for patients with SCD imposes a high burden on informal caregivers. This study aims to capture the impact on health-related quality of life (HRQoL) and economic burden of caregiving for patients with SCD.

Methods: Validated instruments of HRQoL (EQ-5D-5L, Carer Quality of Life-7 dimensions [CarerQol-7D]) and productivity (Work Productivity and Activity Impairment Questionnaire: Specific Health Problem [WPAI: SHP]) were administered via a cross-sectional online survey to caregivers in the United Kingdom (UK) and France. Demographics, HRQoL, and economic burden data were analyzed using descriptive statistics. Economic burden was determined using country-specific minimum and average wage values. Subgroup analysis examined caregivers with and without SCD.

Results: Sixty-nine caregivers were recruited (UK, 43; France, 26), 83% were female, and 22% had SCD themselves. The mean (SD) caregiver EQ-5D-5L score was 0.66 (0.28) (UK, 0.62; France, 0.73), and the mean CarerQol-7D score was 80.69 (24.40) (UK, 78.72 [25.79]; France, 83.97 [22.01]). Mental health problems were reported in 72% and 70% of caregivers measured using the EQ-5D-5L and CarerQol-7D, respectively. Financial problems were reported by 68% of caregivers, with mean annual minimum wage productivity losses of £4209 and €3485, increasing to £5391 and €9319 for average wages. Sensitivity analysis determined additional HRQoL decrements for caregivers with and without, SCD.

Conclusion: Caring for patients with SCD impacts the HRQoL and economic burden of caregivers. Further research to support the complex needs of SCD caregivers is required.

背景:镰状细胞病(SCD)是一种遗传性血液疾病,会影响红细胞和向身体组织输送氧气,其特征是溶血性贫血、疼痛发作、疲劳以及急性和慢性内脏器官损伤。照顾 SCD 患者给非正规护理人员带来了沉重的负担。本研究旨在了解护理 SCD 患者对其健康相关生活质量(HRQoL)和经济负担的影响:经过验证的 HRQoL(EQ-5D-5L、Carer Quality of Life-7 dimensions [CarerQol-7D])和生产力(工作生产力和活动障碍问卷:我们通过横断面在线调查对英国和法国的照护者进行了问卷调查。采用描述性统计方法对人口统计学、HRQoL 和经济负担数据进行了分析。经济负担是根据特定国家的最低工资和平均工资值确定的。分组分析对患有和不患有 SCD 的护理人员进行了研究:共招募了 69 名护理人员(英国 43 名;法国 26 名),其中 83% 为女性,22% 本身患有 SCD。照顾者 EQ-5D-5L 平均得分(标清)为 0.66 (0.28)(英国为 0.62;法国为 0.73),照顾者 Qol-7D 平均得分为 80.69 (24.40)(英国为 78.72 [25.79];法国为 83.97 [22.01])。使用 EQ-5D-5L 和 CarerQol-7D 测量的护理人员中,分别有 72% 和 70% 的人报告存在心理健康问题。68%的护理人员报告了经济问题,平均每年最低工资生产率损失为 4209 英镑和 3485 欧元,平均工资生产率损失增至 5391 英镑和 9319 欧元。敏感性分析确定了患有和未患有 SCD 的护理人员的额外 HRQoL 下降情况:结论:照顾 SCD 患者会影响照顾者的 HRQoL 和经济负担。需要进一步开展研究,以支持 SCD 照护者的复杂需求。
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引用次数: 0
Comparison of patient-reported outcomes between alternative care provider-led and physician-led care for severe sleep disordered breathing: secondary analysis of a randomized clinical trial. 由替代护理提供者主导和由医生主导的严重睡眠呼吸紊乱护理的患者报告结果比较:随机临床试验的二次分析。
IF 2.4 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-26 DOI: 10.1186/s41687-024-00747-3
Maria J Santana, Oyindamola Jaja, Qiuli Duan, Erika D Penz, Kristin L Fraser, Patrick J Hanly, Sachin R Pendharkar

Background: Previous research has suggested that alternative (respiratory) care providers (ACP) may provide affordable, accessible care for sleep-disordered breathing (SDB) that decreases wait-times and improves clinical outcomes. The objective of this study was to compare ACP-led and sleep physician-led care for SDB on patient reported outcome and experiences, with a focus on general and health-related quality of life, sleepiness, and patient satisfaction.

Methods: We conducted a secondary analysis of a randomized trial in which participants with severe SDB were assigned to either ACP-led or physician-led management. We created longitudinal linear mixed models to assess the impacts of treatment arm and timepoint on total and domain-level scores of multiple patient-reported outcome measures and patient-reported experience measures.

Results: Patients in both treatment arms (ACP-led n = 81; sleep-physician = 75) reported improved outcomes on the Sleep Apnea Quality of Life Index, Health Utilities Index, and Epworth Sleepiness Scale. Patients in each group had similar and clinically meaningful improvements on domains assessing cognition, emotion, and social functioning. The linear mixed models suggested no significant difference between treatment arms on the patient-reported outcomes. However, scores significantly improved over time.

Conclusions: Management of SDB using ACPs was comparable to physician-led care, as measured bypatient-reported outcome and experience measures. While loss to follow-up limits our findings, these results provide some support for the use of this novel health service delivery model to improve access to high quality SDB care.

Clinical trial registration: This is analysis of data from the study registered Clinicaltrials.gov (NCT02191085).

背景:以前的研究表明,替代性(呼吸)护理提供者(ACP)可以为睡眠呼吸障碍(SDB)提供可负担、可获得的护理,从而减少等待时间并改善临床效果。本研究的目的是比较由 ACP 主导和由睡眠医师主导的 SDB 护理对患者报告结果和体验的影响,重点关注一般和健康相关的生活质量、嗜睡和患者满意度:我们对一项随机试验进行了二次分析,在该试验中,患有严重 SDB 的参与者被分配到由 ACP 主导或由医生主导的治疗方案中。我们建立了纵向线性混合模型,以评估治疗臂和时间点对多个患者报告结果指标和患者报告体验指标的总分和领域分的影响:两个治疗组(ACP 主导治疗组 81 例;睡眠医师治疗组 75 例)的患者在睡眠呼吸暂停生活质量指数、健康效用指数和埃普沃思嗜睡量表方面的结果均有所改善。每组患者在认知、情绪和社会功能评估方面都有类似且有临床意义的改善。线性混合模型显示,治疗组之间在患者报告的结果上没有明显差异。然而,随着时间的推移,评分有了明显改善:结论:通过患者报告的结果和体验测量,使用 ACPs 对 SDB 进行管理的效果与医生主导的护理效果相当。虽然随访损失限制了我们的研究结果,但这些结果在一定程度上支持了使用这种新型医疗服务提供模式来改善高质量 SDB 护理的可及性:这是对注册于 Clinicaltrials.gov (NCT02191085) 的研究数据进行的分析。
{"title":"Comparison of patient-reported outcomes between alternative care provider-led and physician-led care for severe sleep disordered breathing: secondary analysis of a randomized clinical trial.","authors":"Maria J Santana, Oyindamola Jaja, Qiuli Duan, Erika D Penz, Kristin L Fraser, Patrick J Hanly, Sachin R Pendharkar","doi":"10.1186/s41687-024-00747-3","DOIUrl":"https://doi.org/10.1186/s41687-024-00747-3","url":null,"abstract":"<p><strong>Background: </strong>Previous research has suggested that alternative (respiratory) care providers (ACP) may provide affordable, accessible care for sleep-disordered breathing (SDB) that decreases wait-times and improves clinical outcomes. The objective of this study was to compare ACP-led and sleep physician-led care for SDB on patient reported outcome and experiences, with a focus on general and health-related quality of life, sleepiness, and patient satisfaction.</p><p><strong>Methods: </strong>We conducted a secondary analysis of a randomized trial in which participants with severe SDB were assigned to either ACP-led or physician-led management. We created longitudinal linear mixed models to assess the impacts of treatment arm and timepoint on total and domain-level scores of multiple patient-reported outcome measures and patient-reported experience measures.</p><p><strong>Results: </strong>Patients in both treatment arms (ACP-led n = 81; sleep-physician = 75) reported improved outcomes on the Sleep Apnea Quality of Life Index, Health Utilities Index, and Epworth Sleepiness Scale. Patients in each group had similar and clinically meaningful improvements on domains assessing cognition, emotion, and social functioning. The linear mixed models suggested no significant difference between treatment arms on the patient-reported outcomes. However, scores significantly improved over time.</p><p><strong>Conclusions: </strong>Management of SDB using ACPs was comparable to physician-led care, as measured bypatient-reported outcome and experience measures. While loss to follow-up limits our findings, these results provide some support for the use of this novel health service delivery model to improve access to high quality SDB care.</p><p><strong>Clinical trial registration: </strong>This is analysis of data from the study registered Clinicaltrials.gov (NCT02191085).</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"107"},"PeriodicalIF":2.4,"publicationDate":"2024-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11427643/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142355769","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
Translation, cultural adaptation and validation of the Tamil version of the Cardiff Acne Disability Index (CADI) in Sri Lanka. 斯里兰卡卡迪夫痤疮残疾指数(CADI)泰米尔语版的翻译、文化适应和验证。
IF 2.4 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-26 DOI: 10.1186/s41687-024-00782-0
Shamini Prathapan, Achala Liyanage, Sailakshmi Logeeswaran, Wathsala Ratnayake, Lilangi Devapriya, Jennifer Perera

Background: Assessment of QoL has become an essential component in the holistic care of patients with acne. The Cardiff Acne Disability Index (CADI) is used globally to assess quality of life (QoL) in patients with acne. This study was done to validate CADI in Tamil, as 90 million of the global population are native speakers and Tamil is an official language of several countries.

Methods: CADI was translated and validated into Tamil according to published guidelines. The Tamil versions of both CADI and Dermatology Life Quality Index (DLQI), was administered to 150 Sri Lankan young adults with acne. The clinical severity was assessed using the Global Acne Grading System (GAGS). Discriminant validity was tested by comparing the results of CADI with those of GAGS and DLQI, using reliability, validity, Cronbach's alpha, and Spearman's correlation coefficient measurements. Construct validity was assessed by factor analysis.

Results: 70% were female, and the mean age was 25.1 (SD, 5.2). The majority (91.3%) had acne of mild to moderate severity when measured by GAGS. CADI-Tamil showed high internal consistency and reliability (Cronbach's alpha coefficient = 0.83). The CADI total score showed a strong correlation (0.86) with that of DLQI. The correlation between CADI and GAGS was low, whereas CADI had a high and significant correlations with the DLQI. The construct validity explained 61% of the variability.

Conclusions: The CADI-Tamil is a reliable and valid tool for assessing the QoL of Tamil speaking patients with acne. This tool will help clinicians understand the patient's perspective on acne.

背景:生活质量评估已成为痤疮患者整体护理的重要组成部分。卡迪夫痤疮残疾指数(CADI)在全球范围内被用于评估痤疮患者的生活质量(QoL)。全球有 9000 万人口以泰米尔语为母语,而泰米尔语又是多个国家的官方语言,因此本研究旨在验证泰米尔语的 CADI:方法:根据已发布的指南,将 CADI 翻译成泰米尔语并进行验证。对 150 名患有痤疮的斯里兰卡年轻人进行了泰米尔语版 CADI 和皮肤科生活质量指数(DLQI)的测试。临床严重程度采用全球痤疮分级系统(GAGS)进行评估。通过比较 CADI 与 GAGS 和 DLQI 的结果,使用信度、效度、Cronbach's alpha 和 Spearman's 相关系数测量来检验判别效度。通过因子分析评估了结构效度:70%为女性,平均年龄为 25.1 岁(标准差为 5.2 岁)。大多数人(91.3%)的痤疮程度在 GAGS 测量中为轻度至中度。CADI-Tamil 显示出较高的内部一致性和可靠性(Cronbach's alpha coefficient = 0.83)。CADI 的总分与 DLQI 的总分有很强的相关性(0.86)。CADI 与 GAGS 的相关性较低,而 CADI 与 DLQI 的相关性较高且显著。建构效度解释了 61% 的变异性:CADI-泰米尔语是评估泰米尔语痤疮患者 QoL 的可靠而有效的工具。该工具有助于临床医生了解患者对痤疮的看法。
{"title":"Translation, cultural adaptation and validation of the Tamil version of the Cardiff Acne Disability Index (CADI) in Sri Lanka.","authors":"Shamini Prathapan, Achala Liyanage, Sailakshmi Logeeswaran, Wathsala Ratnayake, Lilangi Devapriya, Jennifer Perera","doi":"10.1186/s41687-024-00782-0","DOIUrl":"https://doi.org/10.1186/s41687-024-00782-0","url":null,"abstract":"<p><strong>Background: </strong>Assessment of QoL has become an essential component in the holistic care of patients with acne. The Cardiff Acne Disability Index (CADI) is used globally to assess quality of life (QoL) in patients with acne. This study was done to validate CADI in Tamil, as 90 million of the global population are native speakers and Tamil is an official language of several countries.</p><p><strong>Methods: </strong>CADI was translated and validated into Tamil according to published guidelines. The Tamil versions of both CADI and Dermatology Life Quality Index (DLQI), was administered to 150 Sri Lankan young adults with acne. The clinical severity was assessed using the Global Acne Grading System (GAGS). Discriminant validity was tested by comparing the results of CADI with those of GAGS and DLQI, using reliability, validity, Cronbach's alpha, and Spearman's correlation coefficient measurements. Construct validity was assessed by factor analysis.</p><p><strong>Results: </strong>70% were female, and the mean age was 25.1 (SD, 5.2). The majority (91.3%) had acne of mild to moderate severity when measured by GAGS. CADI-Tamil showed high internal consistency and reliability (Cronbach's alpha coefficient = 0.83). The CADI total score showed a strong correlation (0.86) with that of DLQI. The correlation between CADI and GAGS was low, whereas CADI had a high and significant correlations with the DLQI. The construct validity explained 61% of the variability.</p><p><strong>Conclusions: </strong>The CADI-Tamil is a reliable and valid tool for assessing the QoL of Tamil speaking patients with acne. This tool will help clinicians understand the patient's perspective on acne.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"109"},"PeriodicalIF":2.4,"publicationDate":"2024-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11427624/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142355676","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
Characteristics of longitudinal changes in quality of life and associated factors in patients post cardiac and thoracic aortic surgery: insights from a prospective cohort study. 心脏和胸主动脉手术后患者生活质量纵向变化的特点及相关因素:一项前瞻性队列研究的启示。
IF 2.4 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-26 DOI: 10.1186/s41687-024-00787-9
Masaaki Sato, Hitoshi Mutai, Shuhei Yamamoto, Daichi Tsukakoshi, Keisuke Furuhashi, Hajime Ichimura, Yuko Wada, Tatsuichiro Seto, Hiroshi Horiuchi

Background: Although quality of life (QOL) is an outcome of postoperative cardiac rehabilitation (CR), its course and related factors from postoperative hospitalization to the post-discharge period have not been adequately investigated. Additionally, the EuroQol-5Dimension-5Level (EQ-5D-5L) index score has not been characterized over the same period. We aimed to characterize QOL changes assessed by the EQ-5D-5L, over the period from hospitalization to 1 year post-discharge, in patients post-cardiac and thoracic aortic surgery, and investigate the factors associated with these temporal changes.

Methodology: This prospective, single-center study included 117 patients who underwent open cardiovascular surgery (median age, 72 years; men, 69%). Patients were assessed for QOL status when transferred to the general ward; at discharge; and at 6 and 12 months after discharge, using the EQ-5D-5L index score and a generalized linear mixed model with random intercepts. Patients were classified into two groups based on score changes post-discharge. Logistic regression analysis evaluated factors associated with QOL decrease post-discharge.

Results: The EQ-5D-5L index score significantly increased over time, except between 6 and 12 months post-discharge; "Common activities" was the most common dimension showing score improvement. In 25 patients (21%), the EQ-5D-5L index scores were lower after discharge compared to their scores at discharge. In the logistic regression analysis, Barthel Index pre-admission, preoperative hemoglobin level, and Mini-Mental State Examination-Japanese scores pre-discharge were significantly associated with QOL decline after adjusting for the European System for Cardiac Operative Risk Evaluation II score.

Conclusions: Most patients post-cardiac or thoracic aortic surgery experienced improved QOL from postoperative hospital stay to 1 year post-discharge. However, in patients with pre-operative basic activities of daily living, hemoglobin and post-operative cognitive decline may require ongoing comprehensive CR because of reduced QOL. Given the potential selection bias introduced by the relatively small sample size in this study, future research involving larger populations is necessary.

背景:虽然生活质量(QOL)是术后心脏康复(CR)的一个结果,但从术后住院到出院后,其过程和相关因素尚未得到充分研究。此外,在同一时期内,EuroQol-5Dimension-5Level(EQ-5D-5L)指数评分也未得到充分研究。我们的目的是通过 EQ-5D-5L 评估心脏和胸主动脉手术后患者从住院到出院后 1 年期间的 QOL 变化,并研究与这些时间变化相关的因素:这项前瞻性单中心研究纳入了 117 名接受开放式心血管手术的患者(中位年龄 72 岁,男性占 69%)。采用EQ-5D-5L指数评分和带有随机截距的广义线性混合模型,对患者转入普通病房时、出院时、出院后6个月和12个月的QOL状况进行评估。根据出院后的评分变化将患者分为两组。逻辑回归分析评估了出院后 QOL 下降的相关因素:除出院后 6 至 12 个月外,EQ-5D-5L 指数得分随着时间的推移明显增加。有 25 名患者(21%)出院后的 EQ-5D-5L 指数得分低于出院时的得分。在逻辑回归分析中,入院前的巴特尔指数、术前血红蛋白水平和出院前的日文版迷你精神状态检查评分在调整欧洲心脏手术风险评估系统 II 评分后,与 QOL 下降显著相关:大多数心脏或胸主动脉手术后患者从术后住院到出院后 1 年的 QOL 都有所改善。然而,对于术前基本日常生活能力、血红蛋白和术后认知能力下降的患者,由于其 QOL 下降,可能需要持续进行全面的 CR。鉴于本研究的样本量相对较小,可能会造成选择偏差,因此未来有必要开展涉及更多人群的研究。
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引用次数: 0
The psychometric properties of the Quality of Life in Neurological Disorders (Neuro-QoL) measurement system in neurorehabilitation populations: a systematic review 神经系统疾病生活质量(Neuro-QoL)测量系统在神经康复人群中的心理测量特性:系统性综述
IF 2.7 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-18 DOI: 10.1186/s41687-024-00743-7
Rebecca Ataman, Rehab Alhasani, Line Auneau-Enjalbert, Adria Quigley, Henry Ukachukwu Michael, Sara Ahmed
To systematically review the literature of existing evidence on the measurement properties of the Quality of Life in Neurological Disorders (Neuro-QoL) measurement system among neurorehabilitation populations. The Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) guided this systematic review in which we searched nine electronic databases and registries, and hand-searched reference lists of included articles. Two independent reviewers screened selected articles and extracted data from 28 included studies. COSMIN’s approach guided extraction and synthesizing measurement properties evidence (insufficient, sufficient), and the modified GRADE approach guided synthesizing evidence quality (very-low, low, moderate, high) by diagnosis. Neuro-QoL has sufficient measurement properties when used by individuals with Huntington’s disease, Multiple Sclerosis, Parkinson’s disease, stroke, lupus, cognitive decline, and amyotrophic lateral sclerosis. The strongest evidence is for the first four conditions, where test-retest reliability, construct validity, and responsiveness are nearly always sufficient (GRADE: moderate-high). Structural validity is assessed only in multiple sclerosis and stroke but is often insufficient (GRADE: moderate-high). Criterion validity is sufficient in some stroke and Huntington’s disease domains (GRADE: high). Item response theory analyses were reported for some stroke domains only. There is limited, mixed evidence for responsiveness and measurement error (GRADE: moderate-high), and no cross-cultural validity evidence Neuro-QoL domains can describe and evaluate patients with Huntington’s disease, multiple sclerosis, Parkinson’s disease, and stroke, but predictive validity evidence would be beneficial. In the other conditions captured in this review, a limited number of Neuro-QoL domains have evidence for descriptive use only. For these conditions, further evidence of structural validity, measurement error, cross-cultural validity and predictive validity would enhance the use and interpretation of Neuro-QoL.
系统回顾有关神经康复人群中神经系统疾病生活质量(Neuro-QoL)测量系统测量特性的现有证据文献。在《基于共识的健康测量工具选择标准》(COSMIN)的指导下,我们对九个电子数据库和登记处进行了检索,并手工检索了纳入文章的参考文献列表。两位独立审稿人对所选文章进行了筛选,并从 28 项纳入研究中提取了数据。COSMIN方法指导提取和综合测量属性证据(不充分、充分),修改后的GRADE方法指导按诊断综合证据质量(极低、低、中、高)。当亨廷顿氏病、多发性硬化症、帕金森氏病、中风、狼疮、认知功能衰退和肌萎缩性脊髓侧索硬化症患者使用神经量表时,其测量属性是充分的。证据最充分的是前四种情况,其测试重复可靠性、结构效度和反应性几乎都很充分(等级评定:中-高)。结构效度仅在多发性硬化症和中风中进行了评估,但往往不够充分(等级评定:中-高)。在某些中风和亨廷顿病领域,标准效度是充分的(GRADE:高)。项目反应理论分析仅针对某些中风领域。在反应性和测量误差方面的证据有限且参差不齐(GRADE:中-高),没有跨文化有效性证据。神经-QoL 领域可以描述和评估亨廷顿氏病、多发性硬化症、帕金森氏病和中风患者,但预测有效性证据将是有益的。在本综述所涉及的其他病症中,数量有限的神经量表领域仅有描述性使用的证据。对于这些病症,如果能进一步证明结构有效性、测量误差、跨文化有效性和预测有效性,将有助于神经量表的使用和解释。
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引用次数: 0
Health-related quality of life among women diagnosed with in situ or invasive breast cancer and age-matched controls: a population-based study 被诊断患有原位或浸润性乳腺癌的妇女与年龄匹配对照组的健康相关生活质量:一项基于人群的研究
IF 2.7 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-17 DOI: 10.1186/s41687-024-00781-1
Synne K. H. Bøhn, Karianne Svendsen, A. Balto, Ylva Maria Gjelsvik, Tor Åge Myklebust, Elin Børøsund, Hege R. Eriksen, A. Meland, K. Østby, L. Solberg Nes, Cecilie E. Kiserud, Kristin V. Reinertsen, G. Ursin
A breast cancer (BC) diagnosis may negatively affect health-related quality of life (HRQoL). However, there are few comparisons of HRQoL at several time points for women with BC, and particular when subdivided into invasive and in situ tumors. The purpose of this study was to investigate various aspects of HRQoL in women recently diagnosed with invasive BC or ductal carcinoma in situ (in situ) compared to age-matched BC free controls in a population-wide sample recruited through the Cancer Registry of Norway. This cross-sectional study utilized HRQoL data collected in 2020–2022 from a digital survey including 4117 cases (3867 women with invasive BC and 430 with in situ) and 2911 controls. HRQoL was assessed ≥ 21 days after diagnosis, using EORTC QLQ-C30. This includes scores assessing global quality of life (gHRQoL) and HRQoL functions and symptoms. Multivariable regression analyses were used to compare HRQoL between cases and controls and to identify factors associated with gHRQoL and fatigue. Additionally, HRQoL 14 months after diagnosis was analyzed in 1989 of the included cases and in 1212 of the controls. Score differences of ≥ 10 points were considered clinically relevant and thus presented in the results. Invasive BC cases had lower gHRQoL, role- and social functioning in addition to more fatigue than controls. In situ cases had lower role—and social functioning than controls. Invasive BC cases scored worse than in situ on all domains, but the differences were not considered clinically relevant. Physical activity was associated with better gHRQoL and less fatigue in invasive BC, in situ and controls. Both invasive BC and in situ cases improved their role- and social functioning scores from diagnosis to 14 months follow-up, however no improvement was seen for fatigue. Women with invasive BC and in situ reported lower role- and social functioning scores than controls right after diagnosis with improvements 14 months after diagnosis. Physical activity was associated with better gHRQoL and less fatigue and should, whenever possible, play a key role in the care for BC patients.
乳腺癌(BC)诊断可能会对健康相关生活质量(HRQoL)产生负面影响。然而,很少有研究对患有乳腺癌的女性在几个时间点上的 HRQoL 进行比较,尤其是细分为浸润性和原位肿瘤时。本研究的目的是通过挪威癌症登记处招募的全人口样本,调查新近确诊为浸润性BC或导管原位癌(原位癌)的妇女与年龄匹配的无BC对照组的各方面HRQoL。这项横断面研究利用了2020-2022年从一项数字调查中收集的HRQoL数据,调查对象包括4117名病例(3867名浸润性BC女性和430名原位癌女性)和2911名对照者。HRQoL 采用 EORTC QLQ-C30 进行评估,评估时间≥ 诊断后 21 天。这包括评估总体生活质量(gHRQoL)和 HRQoL 功能与症状的分数。多变量回归分析用于比较病例和对照组的 HRQoL,并确定与 gHRQoL 和疲劳相关的因素。此外,还对 1989 例病例和 1212 例对照组病例诊断后 14 个月的 HRQoL 进行了分析。得分差异≥10分被认为与临床相关,因此在结果中列出。与对照组相比,浸润性 BC 病例的 gHRQoL、角色功能和社会功能较低,而且更容易疲劳。原位癌病例的角色和社会功能低于对照组。浸润性巴塞病例在所有领域的得分均低于原位病例,但这种差异被认为与临床无关。在浸润性BC、原位癌和对照组中,体育锻炼与更好的gHRQoL和更少的疲劳有关。从诊断到随访14个月期间,浸润性BC和原位癌病例的角色和社会功能评分均有所提高,但在疲劳方面未见改善。患有浸润性和原位癌的妇女在确诊后的角色和社会功能评分低于对照组,但在确诊后14个月有所改善。体育锻炼与更好的健康、人格和生活质量以及更少的疲劳有关,在可能的情况下,体育锻炼应在对乳腺癌患者的护理中发挥关键作用。
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引用次数: 0
Cross-cultural adaptation and psychometric validation of the Chichewa (Malawi) PedsQL™ 4.0 Generic Core Scales child self-report and PedsQL™ 4.0 GCS teen self-report 奇切瓦语(马拉维)PedsQL™ 4.0 通用核心量表儿童自我报告和 PedsQL™ 4.0 通用核心量表青少年自我报告的跨文化改编和心理计量验证
IF 2.7 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-10 DOI: 10.1186/s41687-024-00761-5
Lucky Gift Ngwira, Hendramoorthy Maheswaran, Stavros Petrou, Louis W. Niessen, Sarah C. Smith
The PedsQL™ 4.0 Generic Core Scales (GSC) have been translated into over 60 languages, but use in the sub-Saharan African region is limited. This study aimed to cross-culturally adapt and validate the PedsQL™ 4.0 GCS child self-report and teen self-report versions into the Chichewa language for Malawi. The English (USA) versions were adapted (translation, back translation and cognitive interviews to evaluate conceptual equivalence) into Chichewa. We recruited 289 children (8–17 years) in Blantyre, Malawi. Classical psychometrics at the item level (missing data, endorsement frequencies, item redundancy) and scale level (internal consistency, convergent, discriminant and known groups validity) was used to evaluate the new Chichewa versions. Six items were found to need cultural adaptation for Malawi. There were problems with missing data (< 5%) and adjacent endorsement frequency (< 10%) among younger children. Internal consistency reliability was acceptable (Cronbach α > 0.7). Convergent validity was generally strong (correlations > 0.4). Discriminant validity (p > 0.05) was evident with respect to gender and age, but not for school grade (p < 0.05). Effect sizes indicating known groups validity were in the expected direction but of variable magnitude. We have successfully adapted the PedsQL™ 4.0 GCS child self-report and teen self-report into Chichewa for use in Malawi. Many aspects of the psychometric evaluation were promising, though some elements were more mixed and we have not yet been able to evaluate test-retest reliability or responsiveness. We suggest that the PedsQL™4.0 GCS child and teen self-reports should be used with caution among children and adolescents in Malawi.
PedsQL™ 4.0 通用核心量表 (GSC) 已被翻译成 60 多种语言,但在撒哈拉以南非洲地区的使用还很有限。本研究旨在将 PedsQL™ 4.0 通用核心量表的儿童自我报告和青少年自我报告版本改编成马拉维奇切瓦语,并进行跨文化验证。我们将英语(美国)版本改编为奇切瓦语(翻译、回译和认知访谈以评估概念等效性)。我们在马拉维布兰太尔招募了 289 名儿童(8-17 岁)。在项目层面(缺失数据、赞同频率、项目冗余)和量表层面(内部一致性、收敛性、区分性和已知群体效度),我们采用了经典的心理测量学方法来评估新的奇切瓦语版本。发现有六个项目需要针对马拉维文化进行调整。存在数据缺失的问题(0.7)。收敛效度一般较强(相关性大于 0.4)。性别和年龄方面的区分效度(p > 0.05)明显,但学校年级方面的区分效度(p < 0.05)不明显。表明已知群体有效性的效应大小与预期方向一致,但大小不一。我们已成功地将 PedsQL™ 4.0 GCS 儿童自我报告和青少年自我报告改编为奇切瓦语,供马拉维使用。心理测量评估的许多方面都很有前景,但也有一些内容比较复杂,而且我们还无法评估测试再测可靠性或响应性。我们建议在马拉维儿童和青少年中谨慎使用 PedsQL™4.0 GCS 儿童和青少年自我报告。
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引用次数: 0
Reliability and validity of the German version of the University of Jyvaskyla Active Aging Scale (UJACAS-G) 日瓦斯基拉大学积极老龄化量表德语版(UJACAS-G)的可靠性和有效性
IF 2.7 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-10 DOI: 10.1186/s41687-024-00786-w
Timo Hinrichs, Taina Rantanen, Erja Portegijs, Lukas Nebiker, Roland Rössler, Fabian Schwendinger, Arno Schmidt-Trucksäss, Ralf Roth
The University of Jyvaskyla Active Aging Scale (UJACAS) assesses active aging through willingness, ability, opportunity, and frequency of involvement in activities. Recognizing the lack of a German version, the Finnish original was translated (UJACAS-G). This study aimed: (1) to evaluate the test-retest reliability of UJACAS-G; and (2) to explore correlations with health-related parameters (concurrent validity). The study (test-retest design) targeted healthy older adults aged 65+. Reliability of UJACAS-G (total and subscores) was assessed using Bland-Altman analyses and Intraclass Correlation Coefficients (ICCs). Furthermore, correlations (Spearman’s rho) between UJACAS-G scores and physical function (walking speed, handgrip strength, balance, 6-minute walk distance), physical activity (International Physical Activity Questionnaire), life-space mobility (Life-Space Assessment), and health-related quality of life (Short Form-36 Health Survey) were calculated. Bland-Altman analyses (N = 60; mean age 72.3, SD 5.9 years; 50% women) revealed mean differences close to zero and narrow limits of agreement for all scores (total score: mean difference −1.9; limits −31.7 to 27.9). The ability subscore showed clustering at its upper limit. ICC was 0.829 (95% CI 0.730 to 0.894) for the total score and ranged between 0.530 and 0.876 for subscores (all p-values < 0.001). The total score correlated with walking speed (rho = 0.345; p = 0.008), physical activity (rho = 0.279; p = 0.033) and mental health (rho = 0.329; p = 0.010). UJACAS-G is reliable for assessing active aging among German-speaking healthy older adults. A potential ‘ceiling effect’ regarding the ability subscore should be considered when applying UJACAS-G to well-functioning populations. Analyses of concurrent validity indicated only weak correlations with health-related parameters.
耶瓦斯基拉大学积极老龄化量表(UJACAS)通过参与活动的意愿、能力、机会和频率对积极老龄化进行评估。由于缺乏德语版本,芬兰语原版已被翻译成德语(UJACAS-G)。本研究旨在:(1)评估 UJACAS-G 的重测可靠性;(2)探讨与健康相关参数的相关性(并发有效性)。研究(重测设计)的对象是 65 岁以上的健康老年人。通过布兰-阿尔特曼分析和类内相关系数(ICC)评估了 UJACAS-G(总分和副分)的可靠性。此外,还计算了 UJACAS-G 分数与身体功能(步行速度、手握力量、平衡能力、6 分钟步行距离)、体力活动(国际体力活动问卷)、生活空间活动能力(生活空间评估)和健康相关生活质量(短表-36 健康调查)之间的相关性(Spearman's rho)。布兰-阿尔特曼分析(N = 60;平均年龄 72.3 岁,标准差 5.9 岁;50% 为女性)显示,所有分数的平均差均接近零,且一致性限值较小(总分:平均差-1.9;限值-31.7 至 27.9)。能力子分数在其上限处出现聚类。总分的 ICC 为 0.829(95% CI 0.730 至 0.894),各子分数的 ICC 在 0.530 和 0.876 之间(所有 p 值均小于 0.001)。总分与步行速度(rho = 0.345;p = 0.008)、体力活动(rho = 0.279;p = 0.033)和心理健康(rho = 0.329;p = 0.010)相关。UJACAS-G 可以可靠地评估德语健康老年人的积极老龄化状况。在将 UJACAS-G 应用于功能良好的人群时,应考虑到能力子分数的潜在 "天花板效应"。同时有效性分析表明,UJACAS-G 与健康相关参数之间的相关性较弱。
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引用次数: 0
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Journal of Patient-Reported Outcomes
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