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Abstract：
Background: Patient reported outcomes (PROs) are important measures in acquired heart disease but have not been well defined in Adult Congenital Heart Disease (ACHD). Our aim was to explore the discriminatory capacity of PRO survey tools in Fontan circulatory failure (FCF). Methods: Consecutive adults were enrolled from our ambulatory clinics. Inclusion criteria were age ≥18 years, a Fontan circulation or a hemodynamically insignificant shunt lesion, and sufficient cognitive/language abilities to complete PROs. A comprehensive package of PRO measures, designed to assess perceived health-related quality of life (HRQOL) was administered (including the Kansas City Cardiomyopathy Questionnaire [KCCQ-12], EuroQol-5-dimension [EQ5D], Short Form Health Status Survey [SF-12], self-reported New York Heart Association [NYHA] Functional Class, and Specific Activity Scale [SAS]). Results: We compared 54 Fontan patients (35 ± 10 years) to 25 simple shunt lesion patients (34 ± 11 years). The KCCQ-12 score was lower in Fontan versus shunt lesion patients (87 [IQR 79, 95] versus 100 [IQR 97, 100], p-value < 0.001). The FCF subgroup was associated with lower KCCQ-12 scores as compared with the non-FCF subgroup (82 [IQR 56, 89] versus 93 [IQR 81, 98], p-value = 0.002). Although the KCCQ-12 had the best discriminatory capacity for determination of FCF of all PRO tools studied (c-statistic 0.75 [CI 0.62, 0.88]), superior FCF discrimination was achieved when the KCCQ-12 was combined with all PRO tools (c-statistic 0.82 [CI 0.71, 0.93]). Conclusions: The KCCQ-12 questionnaire demonstrated good discriminatory capacity for the identification of FCF, which was further improved through the addition of complementary PRO tools. Further research will establish the value of PRO tools to guide management strategies in ACHD.
摘要：
背景：患者报告的结果（PRO）是获得性心脏病的重要指标，但在成人先天性心脏病（ACHD）中尚未明确定义。我们的目的是探索PRO调查工具在Fontan循环衰竭（FCF）中的歧视性能力。方法：从我们的门诊诊所连续招募成年人。纳入标准为年龄≥18岁，Fontan循环或血流动力学上不明显的分流损伤,和足够的认知/语言能力来完成PRO。一套全面的PRO措施，旨在评估感知的健康相关生活质量（HRQOL）（包括堪萨斯城心肌病问卷[KCCQ-12]，EuroQol-5维[EQ5D]，简式健康状况调查[SF-12]，自我报告的纽约心脏协会[NYHA]功能班，和特定活动量表[SAS])。结果：我们比较了54例Fontan患者（35±10年）与25例单纯分流病变患者（34±11年）。Fontan与分流病变患者的KCCQ-12评分较低（87[IQR79,95]对100[IQR97,100]，p值<0.001)。与非FCF亚组相比，FCF亚组的KCCQ-12得分较低（82[IQR56,89]对93[IQR81,98]，p值=0.002)。尽管KCCQ-12具有确定所有研究的PRO工具的FCF的最佳判别能力（c统计量0.75[CI0.62，0.88]），当KCCQ-12与所有PRO工具结合使用时,获得了较好的FCF判别(c统计量0.82[CI0.71,0.93]).结论：KCCQ-12问卷对FCF的识别具有良好的辨别能力，通过添加互补的PRO工具进一步改进。进一步的研究将确立PRO工具的价值，以指导ACHD的管理策略。
