PDF(Pubmed)
Abstract：
UNASSIGNED: Primary ciliary dyskinesia (PCD) is a congenital disorder characterized by chronic respiratory morbidity. To date, there is no information on PCD-specific preference-based quality of life measures such as health utilities (HU). We cross-sectionally assessed HU in adult PCD patients and explored relationships with genotype, phenotype and quality of life (QOL)-PCD scales.
UNASSIGNED: Diagnostic testing was performed according to international guidelines, while participants completed the visual analog scale (VAS), time trade off (TTO), standard gamble (SG), and EuroQol 5 dimensions (EQ5D) HU instruments, as well as the QOL-PCD questionnaire. Hierarchical regression was used to identify the QOL-PCD scales that are most predictive of HU.
UNASSIGNED: Among 31 patients, median HU are 0.75 (VAS), 0.86 (EQ5D), 0.91 (TTO) and 0.99 (SG). The underlying genotype is not associated with HU measures. VAS and EQ5D are associated with lung function, while TTO and SG values are not sensitive to any of the examined factors. Among the QOL-PCD scales, physical functioning and lower respiratory symptoms explained much of VAS (R2= 0.419) and EQ5D (R2= 0.538) variability.
UNASSIGNED: Our study demonstrates that HU elicitation in PCD is feasible using both direct and indirect methods. Overall, HU scores are relatively high among adult patients, with higher scores observed in SG and TTO, followed by EQ5D and VAS. VAS and EQ5D HU values are sensitive to lung function as well as to QOL-PCD physical functioning and lower respiratory symptom scores.
UNASSIGNED: Diagnostic testing was performed according to international guidelines, while participants completed the visual analog scale (VAS), time trade off (TTO), standard gamble (SG), and EuroQol 5 dimensions (EQ5D) HU instruments, as well as the QOL-PCD questionnaire. Hierarchical regression was used to identify the QOL-PCD scales that are most predictive of HU.
UNASSIGNED: Among 31 patients, median HU are 0.75 (VAS), 0.86 (EQ5D), 0.91 (TTO) and 0.99 (SG). The underlying genotype is not associated with HU measures. VAS and EQ5D are associated with lung function, while TTO and SG values are not sensitive to any of the examined factors. Among the QOL-PCD scales, physical functioning and lower respiratory symptoms explained much of VAS (R2= 0.419) and EQ5D (R2= 0.538) variability.
UNASSIGNED: Our study demonstrates that HU elicitation in PCD is feasible using both direct and indirect methods. Overall, HU scores are relatively high among adult patients, with higher scores observed in SG and TTO, followed by EQ5D and VAS. VAS and EQ5D HU values are sensitive to lung function as well as to QOL-PCD physical functioning and lower respiratory symptom scores.
摘要：
未经证实：原发性纤毛运动障碍（PCD）是一种以慢性呼吸道疾病为特征的先天性疾病。迄今为止,没有关于基于PCD特定偏好的生活质量测量的信息,例如卫生公用事业(HU).我们对成人PCD患者的HU进行了横断面评估，并探讨了与基因型的关系，表型和生活质量(QOL)-PCD量表。
未经评估：根据国际指南进行诊断测试，当参与者完成视觉模拟量表(VAS)时，时间权衡(TTO)，标准赌博(SG)，和EuroQol5尺寸(EQ5D)HU仪器，以及QOL-PCD问卷。使用分层回归来鉴定最能预测HU的QOL-PCD量表。
未经证实：在31名患者中，HU中位数为0.75(VAS)，0.86（EQ5D），0.91（TTO）和0.99（SG）。潜在的基因型与HU测量值无关。VAS和EQ5D与肺功能相关，而TTO和SG值对任何检查因素都不敏感。在QOL-PCD量表中，身体功能和下呼吸道症状解释了大部分VAS（R2=0.419）和EQ5D（R2=0.538）变异性。
UNASSIGNED：我们的研究表明，使用直接和间接方法在PCD中引发HU是可行的。总的来说,成人患者的HU评分相对较高，在SG和TTO中观察到更高的分数，其次是EQ5D和VAS。VAS和EQ5DHU值对肺功能以及QOL-PCD身体功能和下呼吸道症状评分敏感。
未经评估：根据国际指南进行诊断测试，当参与者完成视觉模拟量表(VAS)时，时间权衡(TTO)，标准赌博(SG)，和EuroQol5尺寸(EQ5D)HU仪器，以及QOL-PCD问卷。使用分层回归来鉴定最能预测HU的QOL-PCD量表。
未经证实：在31名患者中，HU中位数为0.75(VAS)，0.86（EQ5D），0.91（TTO）和0.99（SG）。潜在的基因型与HU测量值无关。VAS和EQ5D与肺功能相关，而TTO和SG值对任何检查因素都不敏感。在QOL-PCD量表中，身体功能和下呼吸道症状解释了大部分VAS（R2=0.419）和EQ5D（R2=0.538）变异性。
UNASSIGNED：我们的研究表明，使用直接和间接方法在PCD中引发HU是可行的。总的来说,成人患者的HU评分相对较高，在SG和TTO中观察到更高的分数，其次是EQ5D和VAS。VAS和EQ5DHU值对肺功能以及QOL-PCD身体功能和下呼吸道症状评分敏感。
