淀粉样变影响生活质量问卷（Amylo-AFFECT-QOL），一种用于评估与健康相关的生活质量并确定心脏淀粉样变性预后的自我报告问卷。
Amylo-AFFECT-QOL, a self-reported questionnaire to assess health-related quality of life and to determine the prognosis in cardiac amyloidosis.
作者信息
Kharoubi Mounira, Bézard Mélanie, Broussier Amaury, Galat Arnault, Gounot Romain, Poullot Elsa, Molinier-Frenkel Valérie, Fanen Pascale, Funalot Benoit, Itti Emmanuel, Lemonnier François, Sing Chadha Gagan Deep, Guendouz Soulef, Mallet Sophie, Zaroui Amira, Audard Vincent, Audureau Etienne, Le Corvoisier Philippe, Hittinger Luc, Planté Bordeneuve Violaine, Lefaucheur Jean-Pascal, Amiot Aurélien, Bequignon Emilie, Bartier Sophie, Leroy Vincent, Teiger Emmanuel, Oghina Silvia, Damy Thibaud
机构信息
AP-HP (Assistance Publique-Hôpitaux de Paris), Department of Cardiology, Henri Mondor University Hospital, Créteil, France.
AP-HP (Assistance Publique-Hôpitaux de Paris), French National Referral Centre for Cardiac Amyloidosis, Cardiogen Network, Henri Mondor University Hospital, Créteil, France.
出版信息
Front Cardiovasc Med. 2023 Mar 14;10:1124660. doi: 10.3389/fcvm.2023.1124660. eCollection 2023.
BACKGROUND AND AIMS
Self-reported questionnaires are useful for estimating the health-related quality of life (HR-QoL), impact of interventions, and prognosis. To our knowledge, no HR-QoL questionnaire has been developed for cardiac amyloidosis (CA). This study aimed to validate Amylo-AFFECT-QOL questionnaire to assess HR-QoL and its prognostic value in CA.
METHODS
A self-reported questionnaire, "Amylo-AFFECT" had been designed and validated for CA symptoms evaluation and screening by physicians. It was adapted here to assess HR-QoL (Amylo-AFFECT-QOL) and its prognostic value in CA. To validate the theoretical model, internal consistency and convergent validity were assessed, particularly correlations between Amylo-AFFECT-QOL and the HR-QoL Minnesota Living Heart Failure (MLHF) questionnaire.
RESULTS
Amylo-AFFECT-QOL was completed by 515 patients, 425 of whom (82.5%) had CA. Wild-type and hereditary transthyretin amyloidosis (ATTRwt and ATTRv) and immunoglobulin light-chain amyloidosis (AL) were diagnosed in 47.8, 14.7, and 18.8% of cases, respectively. The best HR-QoL evaluation was obtained with five dimensions: "Heart failure," "Vascular dysautonomia," "Neuropathy," "Ear, gastrointestinal, and urinary dysautonomia," and "Skin or mucosal involvement." The global Amylo-AFFECT-QOL and MLHF scores showed significant positive correlations (rs = 0.72, < 0.05). Patients with a final diagnosis of CA had a global Amylo-AFFECT-QOL score significantly higher than the control group composed by patients with other diagnoses (22.2 ± 13.6 vs. 16.2 ± 13.8, respectively, -value < 0.01). According to the Amylo-AFFECT-QOL global results, ATTRv patients' QoL was more affected than AL patients' QoL or ATTRwt patients' QoL. Patients with a higher HR-QoL score had a greater risk of death or heart transplant after 1 year of follow-up (log-rank < 0.01).
CONCLUSION
Amylo-AFFECT-QOL demonstrates good psychometric properties and is useful for quantifying HR-QoL and estimating CA prognosis. Its use may help to improve overall management of patients with CA.
背景与目的
自我报告问卷对于评估健康相关生活质量（HR-QoL）、干预措施的影响及预后很有用。据我们所知，尚未开发出用于心脏淀粉样变性（CA）的HR-QoL问卷。本研究旨在验证Amylo-AFFECT-QOL问卷，以评估CA患者的HR-QoL及其预后价值。
方法
一份自我报告问卷“Amylo-AFFECT”已被设计并验证用于CA症状评估及医生筛查。在此对其进行改编以评估CA患者的HR-QoL（Amylo-AFFECT-QOL）及其预后价值。为验证理论模型，评估了内部一致性和收敛效度，特别是Amylo-AFFECT-QOL与HR-QoL明尼苏达生活心力衰竭（MLHF）问卷之间的相关性。
结果
515例患者完成了Amylo-AFFECT-QOL问卷，其中425例（82.5%）患有CA。野生型和遗传性转甲状腺素蛋白淀粉样变性（ATTRwt和ATTRv）以及免疫球蛋白轻链淀粉样变性（AL）分别在47.8%、14.7%和18.8%的病例中被诊断出来。通过五个维度可获得最佳的HR-QoL评估：“心力衰竭”、“血管自主神经功能障碍”、“神经病变”、“耳、胃肠道和泌尿自主神经功能障碍”以及“皮肤或黏膜受累”。Amylo-AFFECT-QOL总分与MLHF总分呈显著正相关（rs = 0.72，P < 0.05）。最终诊断为CA的患者的Amylo-AFFECT-QOL总分显著高于由其他诊断患者组成的对照组（分别为22.2±13.6和16.2±13.8，P值<0.01）。根据Amylo-AFFECT-QOL的总体结果，ATTRv患者的生活质量比AL患者或ATTRwt患者的生活质量受影响更大。HR-QoL得分较高的患者在随访1年后死亡或进行心脏移植的风险更高（对数秩检验P<0.01）。
结论
Amylo-AFFECT-QOL具有良好的心理测量学特性，可用于量化CA患者的HR-QoL并估计其预后。使用该问卷可能有助于改善CA患者的整体管理。
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