Amylo-AFFECT-QOL, a self-reported questionnaire to assess health-related quality of life and to determine the prognosis in cardiac amyloidosis
oleh: Mounira Kharoubi, Mounira Kharoubi, Mounira Kharoubi, Mounira Kharoubi, Mélanie Bézard, Mélanie Bézard, Mélanie Bézard, Mélanie Bézard, Amaury Broussier, Amaury Broussier, Arnault Galat, Arnault Galat, Arnault Galat, Arnault Galat, Romain Gounot, Romain Gounot, Romain Gounot, Elsa Poullot, Elsa Poullot, Valérie Molinier-Frenkel, Valérie Molinier-Frenkel, Valérie Molinier-Frenkel, Pascale Fanen, Pascale Fanen, Benoit Funalot, Benoit Funalot, Emmanuel Itti, Emmanuel Itti, Emmanuel Itti, Emmanuel Itti, François Lemonnier, François Lemonnier, Gagan Deep Sing Chadha, Gagan Deep Sing Chadha, Gagan Deep Sing Chadha, Soulef Guendouz, Soulef Guendouz, Soulef Guendouz, Soulef Guendouz, Sophie Mallet, Sophie Mallet, Sophie Mallet, Sophie Mallet, Amira Zaroui, Amira Zaroui, Amira Zaroui, Amira Zaroui, Vincent Audard, Vincent Audard, Etienne Audureau, Philippe Le Corvoisier, Luc Hittinger, Luc Hittinger, Luc Hittinger, Luc Hittinger, Violaine Planté Bordeneuve, Violaine Planté Bordeneuve, Jean-Pascal Lefaucheur, Jean-Pascal Lefaucheur, Aurélien Amiot, Aurélien Amiot, Emilie Bequignon, Emilie Bequignon, Sophie Bartier, Sophie Bartier, Vincent Leroy, Vincent Leroy, Emmanuel Teiger, Emmanuel Teiger, Emmanuel Teiger, Emmanuel Teiger, Silvia Oghina, Silvia Oghina, Silvia Oghina, Thibaud Damy, Thibaud Damy, Thibaud Damy, Thibaud Damy, Thibaud Damy
| Format: | Article |
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| Diterbitkan: | Frontiers Media S.A. 2023-03-01 |
Deskripsi
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.