Journal Article

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

Leroy, Vincent, Fanen, Pascale, Gounot, Romain, Amiot, Aurélien, Oghina, Silvia, Audard, Vincent, Bézard, Mélanie, Damy, Thibaud, Mallet, Sophie, Le Corvoisier, Philippe, Planté Bordeneuve, Violaine, Funalot, Benoit, Lemonnier, François, Hittinger, Luc, Teiger, Emmanuel, Poullot, Elsa, Molinier-Frenkel, Valérie, Itti, Emmanuel, Broussier, Amaury, Zaroui, Amira, Galat, Arnault, Lefaucheur, Jean-Pascal, Sing Chadha, Gagan Deep, Bequignon, Emilie, Bartier, Sophie, Guendouz, Soulef, Audureau, Etienne, Kharoubi, Mounira

2023

Overview

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. 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. 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). 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.

• Publisher: Frontiers Media SA,Frontiers Media,Frontiers Media S.A
• Subject: Amyloidosis / cardiac amyloidosis / Cardiomyopathy / Cardiovascular Medicine / Heart failure / Life Sciences / Likert scale / Patients / prognosis / Quality of life / Quantitative psychology / Questionnaires / Self report / self-reported questionnaire / Thyroid gland / transthyretin / Validity