Comparing longitudinal assessments of quality of life by patient and parent in newly diagnosed children with cancer: the value of both raters’ perspectives

Susan K. Parsons; Diane L. Fairclough; Jim Wang; Pamela S. Hinds

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Comparing longitudinal assessments of quality of life by patient and parent in newly diagnosed children with cancer: the value of both raters’ perspectives

机译：比较患者和父母对新诊断的癌症儿童的生活质量的纵向评估：评估者观点的价值

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摘要

Health-related quality of life (HRQoL) information from children facing rare and/or life-threatening disease serves important clinical functions. Longitudinal HRQoL ratings from 222 child–parent dyads collected at four time points during the first 16 weeks of cancer treatment are presented. Patient and parent HRQoL reports at the domain level, based on the Pediatric Quality of Life Inventory™ 4.0 Generic Core Scales, were compared over time, and variation in child/parent agreement by age, treatment intensity, and time on treatment was explored.

机译：来自面临罕见和/或威胁生命的疾病的儿童的健康相关生活质量（HRQoL）信息具有重要的临床功能。提出了在癌症治疗的前16周中四个时间点收集的222个儿童父母双胞胎的纵向HRQoL评分。根据儿童生活质量量表4.0通用核心量表对患者和父母的HRQoL报告进行了域范围内的比较，并根据年龄，治疗强度和治疗时间探讨了儿童/父母协议的变化。

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《Quality of Life Research》 |2012年第5期|p.915-923|共9页
作者
Susan K. Parsons; Diane L. Fairclough; Jim Wang; Pamela S. Hinds;
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作者单位

The Health Institute, Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, 800 Washington St., #345, Boston, MA, 02111, USA;

Department of Biostatistics and Informatics, Colorado School of Public Health and Colorado Health Outcomes Program School of Medicine, University of Colorado Denver, Denver, CO, USA;

J&ampJ Pharmaceutical Research and Development, LLC, Raritan, NJ, USA;

Children’s National Medical Center, George Washington University, Washington, DC, USA;

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Pediatric oncology; Patient- and parent-reported health-related quality of life; Patient and parent agreement; Instrumentation; Proxy ratings;

机译：小儿肿瘤科;患者和父母报告的与健康相关的生活质量;患者和父母的协议;仪器;代理人评级;

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1. Comparing longitudinal assessments of quality of life by patient and parent in newly diagnosed children with cancer: the value of both raters' perspectives. [J] . Susan K Parsons, Diane L Fairclough, Jim Wang, Quality of life research: An international journal of quality of life aspects of treatment, care and rehabilitation . 2012,第5期

机译：比较患者和家长对新诊断的癌症儿童的生活质量进行的纵向评估：两种评估者观点的价值。
2. Child–parent agreement on health-related quality of life in children with newly diagnosed chronic health conditions: a longitudinal study [J] . Rana A. Qadeer, Mark A. Ferro International Journal of Adolescence and Youth . 2018,第1期

机译：初诊慢性病儿童健康相关生活质量的儿童父母协议：一项纵向研究
3. Parental Uncertainty Parents' perceptions of health-related quality of life in newly diagnosed children with cancer [J] . Eche Ijeoma Julie, Aronowitz Teri, Shi Ling, Clinical journal of oncology nursing . 2019,第6期

机译：父母的不确定性父母对新诊断癌症儿童的健康相关生活质量的看法
4. Prenatal, Early-Life and Lifetime Exposure to Air Pollution and Childhood Lung Function and Asthma: The Avon Longitudinal Study of Parents and Children (ALSPAC) Cohort Study [C] . Yutong Cai, Anna Hansell, Raquel Granell, Joint annual meeting of the International Society of Exposure Science and the International Society for Environmental Epidemiology . 2018

机译：产前，生命中和生命中的空气污染与儿童肺功能和哮喘的暴露：父母和儿童的Avon纵向研究（ALSPAC）队列研究
5. Comparing outpatient to inpatient diabetes education for newly diagnosed pediatric patients: An exploratory study. [D] . Siminerio, Linda M. 1998

机译：新诊断的小儿患者的门诊与住院糖尿病教育比较：一项探索性研究。
6. Children’s and parents’ perspectives of health-related quality of life in newly diagnosed adolescent idiopathic scoliosis [O] . Nick Kontodimopoulos, Konstantia Damianou, Eleni Stamatopoulou, 2018

机译：新诊断的青少年特发性脊柱侧弯儿童和父母对健康相关生活质量的看法
7. MODERATED EPOSTERS1385Longitudinal strain assessment in dilated cardiomyopathy patients using a novel accelerated DENSE sequence1407Simultaneous T1 and T2 cardiac quantification with CABIRIA: initial clinical experience1423Head-to-head comparison of acceleration algorithms in 4-dimensional flow CMR1502Left ventricular function and size evaluated by hybrid cardiac positron emission tomography-magnetic resonance: Intraindividual comparison of left ventricular ejection fraction and ventricular volumes derived by two modalities1510Left Atrium assessed by Cardiovascular Magnetic Resonance at 1.5 and 3 Tesla – age and gender effects1514Comparison of Free Breathing Cardiac MRI Radial technique to the Standard Multi breath-hold cine SSFP CMR technique for the assessment of LV Volumes and Function1536Self-navigated free-breathing isotropic 3D whole heart phase sensitive inversion recovery magnetic resonance without navigator for detection of myocardial infarction1547Assessment of Right Ventricular Strain Using Myocardial Deformation Recovery Semi Automated Technique: Initial Experience and Normal Values1586Tissue tracking myocardial deformation analysis and prediction of left ventricular remodeling in acute myocardial infarction1589Investigating strategies for optimal 31P MRS clinical cardiac at 3T: Initial Results1620Quantitative Criteria for the Diagnosis of the Congenital Absence of Pericardium by Cardiac Magnetic Resonance1632Widespread tissue injury during acute myocardial infarction: evidence from advanced CMR relaxometry1322Computed tomography coronary angiography verSus sTRess cArdiac magneTic rEsonance for the manaGement of sYmptomatic revascularized patients: a cost effectiveness study (STRATEGY study)1339Comparison of low- versus high-dose of gadobutrol for late gadolinium enhancement imaging at 1.5 Tesla: a clinical feasibility study1347Multi-parametric Cardiac Magnetic Resonance for Prediction of Cardiac Complications in Thalassemia Intermedia: a Prospective Multicenter Study1461Prognostic value of Cardiovascular Magnetic Resonance derived indexes of myocardial fibrosis in heart transplant recipients1523The role of CMR in the acute phase of hospitalization: changing paradigms1542Preoperative CMR-based score predict ventricular response after surgical left ventricular reconstruction in ischemic heart failure patients1555Excellent response rate to cardiac resynchronization therapy guided with magnetic resonance imaging1626The ECG as a predictor of arrhythmogenic substrate on Cardiac Magnetic Resonance Imaging in patients undergoing ablation for premature ventricular contractions1649Comparison of T1-mapping at 3.0T CMR and angiographic APPROACH score for area at risk assessment in ST-segment elevation myocardial infarction1340Pathological correlates of left bundle branch disease in patients with non-ischemic cardiomyopathy: a cardiovascular magnetic resonance study1342Myocardial remodelling and fibrosis in nonischaemic dilated cardiomyopathy: insights from cardiovascular magnetic resonance1411The association between fibrosis and contractile dysfunction in hypertrophic cardiomyopathy assessed by cardiovascular magnetic resonance1622Persistent myocardial inflammation due to intramyocardial haemorrhage in reperfused STEMI as a precursor to adverse LV remodelling - insights from multi-parametric mapping1566Semiquantitative analysis of low and high b value DWI for detecting myocardial edema in acute myocarditis1567Value of Cardiac MRI In Detecting Coronary Artery Disease In Newly Diagnosed Systolic Dysfunction1570Usefulness of cardiac magnetic resonance in tuberous sclerosis complex1578Papillary muscles offer further insight into hypertrophied hearts: a cardiovascular magnetic resonance study1627Diagnostic and clinical implications of CMR timing (early versus late) in patients with troponin positive acute coronary syndromes and unobstructed coronary arteries: Table 1. [O] . Upasana Tayal, Alexandros Kallifatidis, P. Garg, 2016

机译：在使用新的扩张型心肌病的患者缓和EPOSTERS1385Longitudinal应变评估加速DENSE sequence1407Simultaneous T1和T2与CABIRIA心脏定量：在4维流动的加速算法初始临床experience1423Head对头比较CMR1502Left心室功能和尺寸由混合心脏正电子发射断层摄影术评价 - 磁性共振：由两个modalities1510Left庭派生左室射血分数和心室体积的个体间的比较，在1.5和3特斯拉评估心血管磁共振 - 免费的年龄和性别effects1514Comparison呼吸心脏MRI径向技术标准的多屏气电影SSFP CMR技术的LV卷和Function1536Self-导航自由呼吸各向同性3D整个心脏相位敏感反转恢复磁共振导航仪没有检测右Ventricu心肌infarction1547Assessment的评估拉尔菌株使用心肌变形恢复半自动技术：初步经验和正常Values1586Tissue跟踪心肌变形分析和预测左室重构急性心肌infarction1589Investigating策略优化31P MRS临床心脏在3T：初始Results1620Quantitative标准的先天缺失的诊断心包心脏磁Resonance1632Widespread组织损伤急性心肌梗死时：证据先进CMR relaxometry1322Computed CT冠状动脉成像与压力心脏磁共振对症的管理吻合血管患者：成本效益研究（战略研究）1339Comparison低与高剂量钆布醇在1.5特斯拉晚钆增强成像的临床可行性，在中间型地贫心脏并发症的预测study1347Multi参数心脏核磁共振的前瞻性德穆尔心血管磁共振的ticenter Study1461Prognostic价值衍生心肌纤维化指标在住院的急性期CMR的心脏移植recipients1523The作用：改变基于CMR-paradigms1542Preoperative比分预测缺血性心脏衰竭patients1555Excellent响应速度外科左心室重建心脏再同步化后心室反应治疗与磁共振imaging1626The ECG导引作为心脏磁共振成像致心律失常性基板的在ST段抬高心肌infarction1340Pathological在风险评估经历在3.0T CMR T1映射的室性早搏contractions1649Comparison和血管造影APPROACH分数区域消融患者的预测左束支传导疾病的患者与非缺血性心肌病相关因素：心血管磁共振study1342Myocardial重塑和纤维化nonischaemic扩张型心肌病：在从在由心血管磁性resonance1622Persistent心肌炎症评估肥厚型心肌病的纤维化和收缩功能障碍之间心血管磁性resonance1411The协会由于心肌内出血景点在再灌注STEMI为先导，以不利的LV重塑 - 从低的多参数mapping1566Semiquantitative分析和高的b值DWI的见解为在心脏MRI检测冠状动脉疾病急性myocarditis1567Value在结节性硬化症complex1578Papillary肌肉初诊收缩期Dysfunction1570Usefulness心脏磁共振检测心肌水肿提供进一步的深入了解肥大心脏：心血管磁共振study1627Diagnostic和CMR定时的临床意义（早期与晚）患者肌钙蛋白阳性的急性冠脉综合征和通畅的冠状动脉：表1。

Comparing longitudinal assessments of quality of life by patient and parent in newly diagnosed children with cancer: the value of both raters’ perspectives

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