Amylo-AFFECT-QOL, a self-reported questionnaire to assess health-related quality of life and to determine the prognosis in cardiac amyloidosis

被引：6

作者：

Kharoubi, Mounira ^{[1
,2
,3
,4
]}

Bezard, Melanie ^{[1
,2
,3
,4
]}

Broussier, Amaury ^{[5
,6
]}

Galat, Arnault ^{[1
,2
,3
,4
]}

Gounot, Romain ^{[2
,3
,7
]}

Poullot, Elsa ^{[2
,8
]}

Molinier-Frenkel, Valerie ^{[2
,7
,9
]}

Fanen, Pascale ^{[9
,10
]}

Funalot, Benoit ^{[2
,10
]}

Itti, Emmanuel ^{[2
,3
,9
,11
]}

Lemonnier, Francois ^{[2
,3
]}

Chadha, Gagan Deep Sing ^{[2
,3
,4
]}

Guendouz, Soulef ^{[1
,2
,3
,4
]}

Mallet, Sophie ^{[1
,2
,3
,4
]}

Zaroui, Amira ^{[1
,2
,3
,4
]}

Audard, Vincent ^{[9
,12
]}

Audureau, Etienne ^{[13
]}

Le Corvoisier, Philippe ^{[14
]}

Hittinger, Luc ^{[1
,2
,3
,4
]}

Bordeneuve, Violaine Plante ^{[1
,15
]}

Lefaucheur, Jean-Pascal ^{[1
,16
]}

Amiot, Aurelien ^{[1
,17
]}

Bequignon, Emilie ^{[1
,18
]}

Bartier, Sophie ^{[1
,18
]}

Leroy, Vincent ^{[1
,17
]}

Teiger, Emmanuel ^{[1
,2
,3
,4
]}

Oghina, Silvia ^{[1
,2
,3
]}

Damy, Thibaud ^{[1
,2
,3
,4
,14
]}

机构：

[1] Henri Mondor Univ Hosp, AP HP, Dept Cardiol, Creteil, France

[2] Henri Mondor Univ Hosp, AP HP, French Natl Referral Ctr Cardiac Amyloidosis, Cardiogen Network, Creteil, France

[3] Henri Mondor Univ Hosp, AP HP, GRC Amyloid Res Inst, Creteil, France

[4] Henri Mondor Univ Hosp, AP HP, DHU A TVB, Creteil, France

[5] Univ Paris Est Creteil UPEC, Creteil, France

[6] Hop Henri Mondor Emile Roux, AP HP, Dept Geriatr, Limeil Brevannes, France

[7] Henri Mondor Univ Hosp, AP HP, Lymphoid Malignancies, Creteil, France

[8] Henri Mondor Univ Hosp, AP HP, Dept Pathol, Creteil, France

[9] Univ Paris Est Creteil, INSERM, U955, IMRB, Creteil, France

[10] Hop Univ Henri Mondor, AP HP, Dept Genet, Creteil, France

[11] Henri Mondor Univ Hosp, AP HP, Dept Nucl Med, Creteil, France

[12] Henri Mondor Hosp Univ, AP HP, Ctr Reference Malad Rare Syndrome Nephrot Idiopat, Nephrol & Renal Transplantat Dept,Federat Hosp Un, Creteil, France

[13] Henri Mondor Univ Hosp, AP HP, Publ Hlth Dept, Creteil, France

[14] Henri Mondor Univ Hosp, AP HP, INSERM Clin Invest Ctr 1430, Creteil, France

[15] Henri Mondor Univ Hosp, AP HP, Dept Neurol, Creteil, France

[16] Henri Mondor Univ Hosp, AP HP, Dept Neurophysiol, Creteil, France

[17] Henri Mondor Univ Hosp, AP HP, Hepato Gastro Enterol Dept, Creteil, France

[18] Henri Mondor Univ Hosp, AP HP, Dept Otolaryngol, Creteil, France

来源：

FRONTIERS IN CARDIOVASCULAR MEDICINE | 2023年 / 10卷

关键词：

cardiac amyloidosis; quality of life; prognosis; transthyretin; self-reported questionnaire; HEART-FAILURE QUESTIONNAIRE; NATURAL-HISTORY; STAGING SYSTEM; TRANSTHYRETIN; CARDIOMYOPATHY; VALIDATION; TAFAMIDIS; DIAGNOSIS; VALIDITY;

D O I：

10.3389/fcvm.2023.1124660

中图分类号：

R5 [内科学];

学科分类号：

1002 ; 100201 ;

摘要：

Background and aimsSelf-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. MethodsA 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. ResultsAmylo-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, p < 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, p-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). ConclusionAmylo-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.

引用

页数：15

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