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. 2023 Mar 14:10:1124660.
doi: 10.3389/fcvm.2023.1124660. eCollection 2023.

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

Mounira Kharoubi  1   2   3   4 , Mélanie Bézard  1   2   3   4 , Amaury Broussier  5   6 , Arnault Galat  1   2   3   4 , Romain Gounot  2   3   7 , Elsa Poullot  2   8 , Valérie Molinier-Frenkel  2   7   9 , Pascale Fanen  9   10 , Benoit Funalot  2   10 , Emmanuel Itti  2   3   9   11 , François Lemonnier  2   3 , Gagan Deep Sing Chadha  2   3   4 , Soulef Guendouz  1   2   3   4 , Sophie Mallet  1   2   3   4 , Amira Zaroui  1   2   3   4 , Vincent Audard  9   12 , Etienne Audureau  13 , Philippe Le Corvoisier  14 , Luc Hittinger  1   2   3   4 , Violaine Planté Bordeneuve  1   15 , Jean-Pascal Lefaucheur  1   16 , Aurélien Amiot  1   17 , Emilie Bequignon  1   18 , Sophie Bartier  1   18 , Vincent Leroy  1   17 , Emmanuel Teiger  1   2   3   4 , Silvia Oghina  1   2   3 , Thibaud Damy  1   2   3   4   14
Affiliations

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

Mounira Kharoubi et al. Front Cardiovasc Med. .

Abstract

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, 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).

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.

Keywords: cardiac amyloidosis; prognosis; quality of life; self-reported questionnaire; transthyretin.

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Conflict of interest statement

TD received grants or consultancy fees from Akcea, Alnylam, Pfizer, and GSK. SO received honoraria from Pfizer. BF received consultancy fees from Pfizer. EI received honoraria from Pfizer and Janssen-Cilag. RG received honoraria from SANOFI. AB received consultancy fees from Pfizer, Novartis, Vifor Pharma, and AstraZeneca. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Figures

FIGURE 1
FIGURE 1
Flowchart of study populations: QoL population and learning and validation population. *Included all patients who completed Amylo-AFFECT questionnaire between January 2017 and January 2019 and a randomly sample of patients who completed Amylo-AFFECT questionnaire between January 2019 and December 2019. **Included a randomly sample of patients who completed Amylo-AFFECT questionnaire between January 2019 and December 2019 and all patients who completed Amylo-AFFECT questionnaire between January 2020 and December 2020.
FIGURE 2
FIGURE 2
Kaplan–Meier curves describing the link between death or heart transplant and the «calculated» prognostic values (green line represents 50% of patients, orange represents 25% of patients, and red represents 25% of patients) for each model (Amylo-AFFECT-QOL scores alone, biological markers alone, and Amylo-AFFECT-QOL scores and associated biological markers). The lower the prognostic value, the worse the prognosis.
See this image and copyright information in PMC

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References

    1. Damy T, Maurer M, Rapezzi C, Planté-Bordeneuve V, Karayal O, Mundayat R, et al. Clinical, ECG and echocardiographic clues to the diagnosis of TTR-related cardiomyopathy. Open Heart. (2016) 3:e000289. - PMC - PubMed
    1. Gillmore J, Maurer M, Falk R, Merlini G, Damy T, Dispenzieri A, et al. Nonbiopsy diagnosis of cardiac transthyretin amyloidosis. Circulation. (2016) 133:2404–12. - PubMed
    1. Damy T, Kristen A, Suhr O, Maurer M, Planté-Bordeneuve V, Yu C, et al. Transthyretin cardiac amyloidosis in continental Western Europe: an insight through the transthyretin amyloidosis outcomes survey (THAOS). Eur Heart J. (2019) 43:391–400. 10.1093/eurheartj/ehz173 - DOI - PMC - PubMed
    1. Mohty D, Damy T, Cosnay P, Echahidi N, Casset-Senon D, Virot P, et al. Cardiac amyloidosis: updates in diagnosis and management. Arch Cardiovasc Dis. (2013) 106:528–40. - PubMed
    1. Milandri A, Farioli A, Gagliardi C, Longhi S, Salvi F, Curti S, et al. Carpal tunnel syndrome in cardiac amyloidosis: implications for early diagnosis and prognostic role across the spectrum of aetiologies. Eur J Heart Fail. (2020) 22:507–15. 10.1002/ejhf.1742 - DOI - PubMed