Endocrinology/Medicine Department, Hospital de Sant Pau, IIB-Sant Pau, Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBERER Unit 747), ISCIII, Universitat Autònoma de Barcelona (UAB), C/Sant Antoni Maria Claret 167, 08025 Barcelona, Spain.
Eur J Endocrinol. 2012 Sep;167(3):337-42. doi: 10.1530/EJE-12-0325. Epub 2012 Jun 7.
To evaluate health-related quality of life (HRQoL) in Cushing's syndrome (CS) with the disease-generated CushingQoL questionnaire and to confirm its psychometric properties of test-retest reliability and sensitivity to change.
Clinical practice conditions in a tertiary referral center.
The CushingQoL and EuroQoL questionnaires were administered at baseline and during follow-up and correlated with clinical parameters in 59 patients with CS. To check test-retest reliability, stable patients (either biochemically cured or with active hypercortisolism) were evaluated twice. To investigate sensitivity to change, new patients were evaluated at diagnosis and twice more following improvement after successful surgery.
At baseline, patients with active disease scored lower (indicating worse HRQoL) than those cured on the CushingQoL (46 ± 14 vs 58 ± 20, P<0.05) but not on the EuroQoL-visual analog scale (VAS; 64 ± 20 vs 70 ± 16, P NS). Test-retest reliability of CushingQoL was confirmed in stable patients, both in the 'cured group' (intraclass correlation coefficient (ICC)=0.78, n=34) and in the 'active group' (ICC=0.66, n=14). Sensitivity to change was confirmed in the 'improvement group' (n=11), as the CushingQoL score increased 4 ± 1.5 and 9 ± 3 months after surgery (P<0.01 and <0.001 respectively); the EuroQoL-VAS only improved after 9 ± 3 months (P<0.01). Effect sizes were 1.02 and 1.86 for CushingQoL at 4 ± 1.5 and 9 ± 3 months respectively. Finally, scores of both questionnaires were correlated (r=0.504; P<0.001).
The CushingQoL questionnaire shows good test-retest reliability and sensitivity to change in clinical practice conditions.
使用由库欣综合征（CS）引起的 CushingQoL 问卷评估与健康相关的生活质量（HRQoL），并确认其重测信度和对变化的敏感性的心理测量学特性。
在三级转诊中心的临床实践条件下进行。
在基线和随访期间向 59 例 CS 患者使用 CushingQoL 和 EuroQoL 问卷，并将其与临床参数相关联。为了检查重测信度，对稳定的患者（无论是生化治愈还是有活动性皮质醇增多症）进行了两次评估。为了研究敏感性变化，新患者在诊断时进行评估，并在成功手术后改善后再进行两次评估。
在基线时，活动性疾病患者的评分较低（表明 HRQoL 更差），而治愈患者的评分较高（46±14 与 58±20，P<0.05），但在 EuroQoL-视觉模拟量表（VAS）上则无差异（64±20 与 70±16，P NS）。在稳定的患者中，无论是在“治愈组”（组内相关系数（ICC）=0.78，n=34）还是在“活跃组”（ICC=0.66，n=14），均确认了 CushingQoL 的重测信度。在“改善组”（n=11）中也证实了对变化的敏感性，因为 CushingQoL 评分在手术后 4±1.5 和 9±3 个月时分别增加了 4±1.5 和 9±3（P<0.01 和 <0.001）；EuroQoL-VAS 仅在 9±3 个月后改善（P<0.01）。CushingQoL 在 4±1.5 和 9±3 时的效应大小分别为 1.02 和 1.86。最后，两个问卷的评分均相关（r=0.504；P<0.001）。
在临床实践条件下，CushingQoL 问卷具有良好的重测信度和对变化的敏感性。
