{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T15:48:42Z","timestamp":1787068122369,"version":"build-2736575974"},"reference-count":30,"publisher":"Oxford University Press (OUP)","issue":"5","license":[{"start":{"date-parts":[[2026,2,12]],"date-time":"2026-02-12T00:00:00Z","timestamp":1770854400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"International Society of Amyloidosis"},{"name":"Amyloidosis Research Consortium"},{"name":"IQVIA QualityMetric"},{"DOI":"10.13039\/501100012264","name":"NIH","doi-asserted-by":"publisher","award":["R01HL139671"],"award-info":[{"award-number":["R01HL139671"]}],"id":[{"id":"10.13039\/501100012264","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100012264","name":"NIH","doi-asserted-by":"publisher","award":["R01AG081582-01"],"award-info":[{"award-number":["R01AG081582-01"]}],"id":[{"id":"10.13039\/501100012264","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100006400","name":"Alnylam","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100006400","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100004319","name":"Pfizer","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100004319","id-type":"DOI","asserted-by":"publisher"}]},{"name":"Eidos"},{"DOI":"10.13039\/100015364","name":"Prothena","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100015364","id-type":"DOI","asserted-by":"publisher"}]},{"name":"Ionis"},{"DOI":"10.13039\/100004325","name":"AstraZeneca","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100004325","id-type":"DOI","asserted-by":"publisher"}]},{"name":"Akcea"},{"name":"Intellia"},{"name":"NovoNordisk"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2026,8,11]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Aims<\/jats:title>\n                    <jats:p>Transthyretin amyloidosis (ATTR) is a multisystemic disease impacting quality of life (QOL) through various symptoms. The Transthyretin Amyloidosis\u2014Quality of Life Questionnaire (ATTR-QOL) was developed to assess disease-specific effects on QOL, but its associations with established patient-reported outcomes measures (PROs), clinical markers, and functional tests remain unexplored.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods and results<\/jats:title>\n                    <jats:p>This cross-sectional study included consecutive ATTR patients at Columbia University between 3\/2024 and 1\/2025 who completed the ATTR-QOL. The questionnaire includes 5 symptom and 4 impact scores (range: 0\u2013100, higher scores indicate worse status). Clinical parameters, PROs, and functionality were recorded at the same visit. PROs of interest included the Kansas City Cardiomyopathy Questionnaire (KCCQ), SF36v2 and Composite Autonomic Symptom Score-31 (COMPASS-31), while 6-minute walk test and Short Physical Performance Battery Test were recorded as functionality measures. 194 patients (137 cardiomyopathy, 48 mixed, 9 neuropathy) were included. Most had early-stage disease [National Amyloidosis Centre (NAC) Stage 1: 70%, Stage 2: 22%, Stage 3: 8%], and all were on disease-modifying treatment. ATTR-QOL exhibited good convergent validity with clinical parameters, functionality testing, and established QOL tools. Additionally, ATTR-QOL demonstrated strong known-groups discriminant validity, as evidenced by its ability to differentiate between various clinical and functional groups, as well as established patient-reported outcome (PRO) categories.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>ATTR-QOL, as a disease-specific PRO, effectively captures the multidimensional impact of ATTR and is associated with clinical parameters and functionality in patients with ATTR.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1093\/ehjqcco\/qcag015","type":"journal-article","created":{"date-parts":[[2026,2,11]],"date-time":"2026-02-11T12:46:22Z","timestamp":1770813982000},"page":"743-752","source":"Crossref","is-referenced-by-count":2,"title":["First clinical experience with the Transthyretin Amyloidosis-Quality of Life questionnaire (ATTR-QoL): associations with clinical characteristics and established patient-reported outcomes"],"prefix":"10.1093","volume":"12","author":[{"given":"Dimitrios","family":"Bampatsias","sequence":"first","affiliation":[{"name":"Division of Cardiology, Cardiac Amyloidosis Program, Columbia University Irving Medical Center, New York Presbyterian Hospital , 622 West 168th Street, PH12 Stem Room 134, New York, NY 10032 ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sergio","family":"Teruya","sequence":"additional","affiliation":[{"name":"Division of Cardiology, Cardiac Amyloidosis Program, Columbia University Irving Medical Center, New York Presbyterian Hospital , 622 West 168th Street, PH12 Stem Room 134, New York, NY 10032 ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alfonsina","family":"Mirabal Santos","sequence":"additional","affiliation":[{"name":"Division of Cardiology, Cardiac Amyloidosis Program, Columbia University Irving Medical Center, New York Presbyterian Hospital , 622 West 168th Street, PH12 Stem Room 134, New York, NY 10032 ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Juliana C","family":"Levy","sequence":"additional","affiliation":[{"name":"Division of Cardiology, Cardiac Amyloidosis Program, Columbia University Irving Medical Center, New York Presbyterian Hospital , 622 West 168th Street, PH12 Stem Room 134, New York, NY 10032 ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kristen","family":"Hsu","sequence":"additional","affiliation":[{"name":"Amyloidosis Research Consortium , Newton, MA 02460 ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Phaedra T","family":"Johnson","sequence":"additional","affiliation":[{"name":"Amyloidosis Research Consortium , Newton, MA 02460 ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sabrina","family":"Rebello","sequence":"additional","affiliation":[{"name":"Amyloidosis Research Consortium , Newton, MA 02460 ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrew","family":"Lovley","sequence":"additional","affiliation":[{"name":"IQVIA Quality Metric, Inc. , Providence, RI 02919 ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kaitlin","family":"LaGasse","sequence":"additional","affiliation":[{"name":"IQVIA Quality Metric, Inc. , Providence, RI 02919 ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kristen L","family":"McCausland","sequence":"additional","affiliation":[{"name":"IQVIA Quality Metric, Inc. , Providence, RI 02919 ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karan","family":"Wats","sequence":"additional","affiliation":[{"name":"Division of Cardiology, Cardiac Amyloidosis Program, Columbia University Irving Medical Center, New York Presbyterian Hospital , 622 West 168th Street, PH12 Stem Room 134, New York, NY 10032 ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mathew S","family":"Maurer","sequence":"additional","affiliation":[{"name":"Division of Cardiology, Cardiac Amyloidosis Program, Columbia University Irving Medical Center, New York Presbyterian Hospital , 622 West 168th Street, PH12 Stem Room 134, New York, NY 10032 ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2026,2,12]]},"reference":[{"key":"2026081102575709200_qcag015-B1","doi-asserted-by":"crossref","first-page":"778","DOI":"10.1001\/jama.2024.0442","article-title":"Cardiac amyloidosis due to transthyretin protein: a review","volume":"331","author":"Ruberg","year":"2024","journal-title":"JAMA"},{"key":"2026081102575709200_qcag015-B2","doi-asserted-by":"crossref","first-page":"117","DOI":"10.1007\/s40119-023-00344-3","article-title":"Clinical and genotype characteristics and symptom migration in patients with mixed phenotype transthyretin amyloidosis from the transthyretin amyloidosis outcomes survey","volume":"13","author":"Gonz\u00e1lez-Moreno","year":"2024","journal-title":"Cardiol Ther"},{"key":"2026081102575709200_qcag015-B3","doi-asserted-by":"crossref","first-page":"350","DOI":"10.1186\/s13023-023-02962-5","article-title":"A 15-year consolidated overview of data in over 6000 patients from the transthyretin amyloidosis outcomes survey (THAOS)","volume":"18","author":"Gentile","year":"2023","journal-title":"Orphanet J Rare Dis"},{"key":"2026081102575709200_qcag015-B4","doi-asserted-by":"crossref","first-page":"A436","DOI":"10.1016\/j.jval.2016.09.518","article-title":"Burden of illness for patients with hereditary ATTR amyloidosis with polyneuropathy begins with symptom onset and increases with disease progression","volume":"19","author":"Denoncourt","year":"2016","journal-title":"Value Health"},{"key":"2026081102575709200_qcag015-B5","doi-asserted-by":"crossref","first-page":"S102","DOI":"10.1016\/j.cardfail.2017.07.298","article-title":"Description of the health-related quality of life of transthyretin amyloid cardiomyopathy subjects from the transthyretin amyloidosis outcomes survey","volume":"23","author":"Grogan","year":"2017","journal-title":"J Card Fail"},{"key":"2026081102575709200_qcag015-B6","doi-asserted-by":"crossref","first-page":"e13598","DOI":"10.1111\/eci.13598","article-title":"Quality of life assessment in amyloid transthyretin (ATTR) amyloidosis","volume":"51","author":"Aimo","year":"2021","journal-title":"Eur J Clin Invest"},{"key":"2026081102575709200_qcag015-B7","doi-asserted-by":"crossref","first-page":"334","DOI":"10.1093\/ehjqcco\/qcad056","article-title":"Quality of life and societal costs in patients with dilated cardiomyopathy","volume":"10","author":"Wiethoff","year":"2024","journal-title":"Eur Heart J Qual Care Clin Outcomes"},{"key":"2026081102575709200_qcag015-B8","doi-asserted-by":"crossref","first-page":"730","DOI":"10.1093\/ehjqcco\/qcae036","article-title":"Association of baseline and changes in health-related quality of life with mortality following myocardial infarction: multicentre longitudinal linked cohort study","volume":"11","author":"Dondo","year":"2025","journal-title":"Eur Heart J Qual Care Clin Outcomes"},{"key":"2026081102575709200_qcag015-B9","doi-asserted-by":"crossref","first-page":"102590","DOI":"10.1016\/j.jchf.2025.102590","article-title":"Temporal changes in biomarkers, functional Status, and quality of life prior to adverse clinical outcomes in heart failure with mildly reduced or preserved ejection fraction","volume":"13","author":"Lu","year":"2025","journal-title":"JACC Heart Fail"},{"key":"2026081102575709200_qcag015-B10","doi-asserted-by":"crossref","first-page":"213","DOI":"10.2147\/PROM.S411721","article-title":"The transthyretin amyloidosis\u2014quality of life (ATTR-QOL) questionnaire: development of a conceptual model and disease-specific patient-reported outcome measure","volume":"14","author":"O'Connor","year":"2023","journal-title":"Patient Relat Outcome Meas"},{"key":"2026081102575709200_qcag015-B11","author":"Rebello"},{"key":"2026081102575709200_qcag015-B12","doi-asserted-by":"crossref","first-page":"44","DOI":"10.1186\/s41687-025-00880-7","article-title":"Reliability and validity of the transthyretin amyloidosis\u2014quality of life (ATTR-QOL) questionnaire impact scales","volume":"9","author":"Lovley","year":"2025","journal-title":"J Patient Rep Outcomes"},{"key":"2026081102575709200_qcag015-B13","first-page":"1076","article-title":"2023 ACC expert consensus decision pathway on comprehensive multidisciplinary care for the patient with cardiac amyloidosis: a report of the American College of Cardiology solution set oversight committee [published correction appears in J Am Coll Cardiol. 2023 Mar 21;81(11):1135. doi: 10.1016\/j.jacc.2023.02.013]","volume":"81","author":"Writing Committee","year":"2023","journal-title":"J Am Coll Cardiol"},{"key":"2026081102575709200_qcag015-B14","doi-asserted-by":"crossref","first-page":"414","DOI":"10.1016\/j.jaccao.2020.06.007","article-title":"Diuretic dose and NYHA functional class are independent predictors of mortality in patients with transthyretin cardiac amyloidosis","volume":"2","author":"Cheng","year":"2020","journal-title":"JACC CardioOncol"},{"key":"2026081102575709200_qcag015-B15","doi-asserted-by":"crossref","first-page":"800","DOI":"10.1097\/EDE.0b013e3181577654","article-title":"The strengthening the reporting of observational studies in epidemiology (STROBE) statement: guidelines for reporting observational studies","volume":"18","author":"von Elm","year":"2007","journal-title":"Epidemiology"},{"key":"2026081102575709200_qcag015-B16","doi-asserted-by":"crossref","first-page":"2379","DOI":"10.1016\/j.jacc.2020.09.542","article-title":"Interpreting the Kansas city cardiomyopathy questionnaire in clinical trials and clinical care: JACC state-of-the-art review","volume":"76","author":"Spertus","year":"2020","journal-title":"J Am Coll Cardiol"},{"key":"2026081102575709200_qcag015-B17","volume-title":"User\u2019s Manual for the SF-36v2 Health Survey","author":"Maruish","year":"2011","edition":"3rd edn"},{"key":"2026081102575709200_qcag015-B18","doi-asserted-by":"crossref","first-page":"1196","DOI":"10.1016\/j.mayocp.2012.10.013","article-title":"COMPASS 31: a refined and abbreviated composite autonomic symptom score","volume":"87","author":"Sletten","year":"2012","journal-title":"Mayo Clin Proc"},{"key":"2026081102575709200_qcag015-B19","doi-asserted-by":"crossref","DOI":"10.1007\/978-3-030-89289-0","volume-title":"Value Sets for EQ-5D-5L: A Compendium, Comparative Review & User Guide","author":"Devlin","year":"2022"},{"key":"2026081102575709200_qcag015-B20","first-page":"111","article-title":"ATS statement: guidelines for the six-minute walk test [published correction appears in Am J Respir Crit Care Med. 2016 May 15;193(10):1185. doi: 10.1164\/rccm.19310erratum]","volume":"166","author":"ATS Committee on Proficiency Standards for Clinical Pulmonary Function Laboratories","year":"2002","journal-title":"Am J Respir Crit Care Med"},{"key":"2026081102575709200_qcag015-B21","doi-asserted-by":"crossref","first-page":"43","DOI":"10.1016\/j.jacc.2024.04.011","article-title":"Prognostic value of a 6-Minute walk test in patients with transthyretin cardiac amyloidosis","volume":"84","author":"Ioannou","year":"2024","journal-title":"J Am Coll Cardiol"},{"key":"2026081102575709200_qcag015-B22","doi-asserted-by":"crossref","first-page":"412","DOI":"10.1093\/ageing\/afq034","article-title":"Sarcopenia: European consensus on definition and diagnosis: report of the European working group on sarcopenia in older people","volume":"39","author":"Cruz-Jentoft","year":"2010","journal-title":"Age Ageing"},{"key":"2026081102575709200_qcag015-B23","doi-asserted-by":"crossref","first-page":"813","DOI":"10.1016\/j.cardfail.2017.09.009","article-title":"Implementation of real-time assessment of patient-reported outcomes in a heart failure clinic: a feasibility study","volume":"23","author":"Stehlik","year":"2017","journal-title":"J Card Fail"},{"key":"2026081102575709200_qcag015-B24","doi-asserted-by":"crossref","first-page":"120","DOI":"10.1093\/ageing\/24.2.120","article-title":"The SF-36 health survey questionnaire: is it suitable for use with older adults?","volume":"24","author":"Hayes","year":"1995","journal-title":"Age Ageing"},{"key":"2026081102575709200_qcag015-B25","doi-asserted-by":"crossref","first-page":"1124","DOI":"10.1111\/ene.12717","article-title":"Validation of the composite autonomic symptom scale 31 (COMPASS-31) in patients with and without small fiber polyneuropathy","volume":"22","author":"Treister","year":"2015","journal-title":"Eur J Neurol"},{"key":"2026081102575709200_qcag015-B26","doi-asserted-by":"crossref","first-page":"1015","DOI":"10.1093\/ehjqcco\/qcaf024","article-title":"Change in prevalence of ATTR variants in Italy: results from a national survey","volume":"11","author":"Fumagalli","year":"2025","journal-title":"Eur Heart J Qual Care Clin Outcomes"},{"key":"2026081102575709200_qcag015-B27","doi-asserted-by":"crossref","first-page":"1228","DOI":"10.1093\/ehjqcco\/qcaf048","article-title":"If you search, you find: a new lens on hereditary transthyretin amyloidosis in Italy","volume":"11","author":"Mora-Ayestar\u00e1n","year":"2025","journal-title":"Eur Heart J Qual Care Clin Outcomes"},{"key":"2026081102575709200_qcag015-B28","doi-asserted-by":"crossref","first-page":"25","DOI":"10.1016\/j.hjc.2023.09.019","article-title":"Transthyretin amyloidosis cardiomyopathy in Greece: clinical insights from the national referral center","volume":"79","author":"Bampatsias","year":"2024","journal-title":"Hellenic J Cardiol"},{"key":"2026081102575709200_qcag015-B29","doi-asserted-by":"crossref","first-page":"478","DOI":"10.1111\/joim.70020","article-title":"Sixty years of experience with hereditary transthyretin amyloidosis: insights from the Swedish transthyretin amyloidosis registry","volume":"298","author":"Stenberg","year":"2025","journal-title":"J Intern Med"},{"key":"2026081102575709200_qcag015-B30","doi-asserted-by":"crossref","first-page":"407","DOI":"10.1097\/HCO.0000000000001156","article-title":"Treatment of transthyretin cardiac amyloidosis","volume":"39","author":"Bampatsias","year":"2024","journal-title":"Curr Opin Cardiol"}],"container-title":["European Heart Journal - Quality of Care and Clinical Outcomes"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/ehjqcco\/advance-article-pdf\/doi\/10.1093\/ehjqcco\/qcag015\/66866003\/qcag015.pdf","content-type":"application\/pdf","content-version":"am","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/ehjqcco\/article-pdf\/12\/5\/743\/66866003\/qcag015.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/ehjqcco\/article-pdf\/12\/5\/743\/66866003\/qcag015.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,8,11]],"date-time":"2026-08-11T06:58:10Z","timestamp":1786431490000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/ehjqcco\/article\/12\/5\/743\/8475502"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,2,12]]},"references-count":30,"journal-issue":{"issue":"5","published-online":{"date-parts":[[2026,2,12]]},"published-print":{"date-parts":[[2026,8,11]]}},"URL":"https:\/\/doi.org\/10.1093\/ehjqcco\/qcag015","relation":{},"ISSN":["2058-5225","2058-1742"],"issn-type":[{"value":"2058-5225","type":"print"},{"value":"2058-1742","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2026,8]]},"published":{"date-parts":[[2026,2,12]]}}}