{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,25]],"date-time":"2026-09-25T05:57:12Z","timestamp":1790315832128,"version":"4.1.0"},"reference-count":26,"publisher":"Springer Science and Business Media LLC","issue":"4","license":[{"start":{"date-parts":[[2026,3,13]],"date-time":"2026-03-13T00:00:00Z","timestamp":1773360000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0"},{"start":{"date-parts":[[2026,3,13]],"date-time":"2026-03-13T00:00:00Z","timestamp":1773360000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0"}],"funder":[{"DOI":"10.13039\/100018748","name":"Argenx","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100018748","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Qual Life Res"],"published-print":{"date-parts":[[2026,4]]},"DOI":"10.1007\/s11136-026-04214-y","type":"journal-article","created":{"date-parts":[[2026,3,13]],"date-time":"2026-03-13T09:59:25Z","timestamp":1773395965000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Estimating the minimal clinically important difference for the Myasthenia Gravis Quality of Life revised scale (MG-QOL15R)"],"prefix":"10.1007","volume":"35","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4793-9026","authenticated-orcid":false,"given":"\u00c2ngela Jornada","family":"Ben","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Febe","family":"Brackx","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Glenn","family":"Phillips","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carolina","family":"Barnett-Tapia","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cynthia","family":"Qi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Fanni","family":"Rencz","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah","family":"Dewilde","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2026,3,13]]},"reference":[{"issue":"4","key":"4214_CR1","doi-asserted-by":"publisher","first-page":"407","DOI":"10.1016\/0197-2456(89)90005-6","volume":"10","author":"R Jaeschke","year":"1989","unstructured":"Jaeschke, R., Singer, J., & Guyatt, G. H. (1989). Measurement of health status. ascertaining the minimal clinically important difference. Controlled Clinical Trials, 10(4), 407\u2013415. https:\/\/doi.org\/10.1016\/0197-2456(89)90005-6","journal-title":"Controlled Clinical Trials"},{"key":"4214_CR2","unstructured":"Minimal Clinically Important Difference (MCID) in patient-reported outcome measures for neurological conditions: Review of concept and methods - COSMIN database. (n.d.). Retrieved May 27, 2025, from https:\/\/database.cosmin.nl\/catalog\/2977"},{"issue":"1","key":"4214_CR3","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1038\/s41572-019-0079-y","volume":"5","author":"NE Gilhus","year":"2019","unstructured":"Gilhus, N. E., Tzartos, S., Evoli, A., Palace, J., Burns, T. M., & Verschuuren, J. J. G. M. (2019). Myasthenia gravis. Nature Reviews Disease Primers, 5(1), 1\u201319. https:\/\/doi.org\/10.1038\/s41572-019-0079-y","journal-title":"Nature Reviews Disease Primers"},{"issue":"6","key":"4214_CR4","doi-asserted-by":"publisher","first-page":"1015","DOI":"10.1002\/MUS.25198","volume":"54","author":"TM Burns","year":"2016","unstructured":"Burns, T. M., Sadjadi, R., Utsugisawa, K., Gwathmey, K. G., Joshi, A., Jones, S., Bril, V., Barnett, C., Guptill, J. T., Sanders, D. B., Hobson\u2010Webb, L., Juel, V. C., Massey, J., Gable, K. L., Silvestri, N. J., Wolfe, G., Cutter, G., Nagane, Y., Murai, H., \u2026 Conaway, M. (2016). International clinimetric evaluation of the MG-QOL15, resulting in slight revision and subsequent validation of the MG-QOL15r. Muscle & Nerve, 54(6), 1015\u20131022. https:\/\/doi.org\/10.1002\/MUS.25198","journal-title":"Muscle & Nerve"},{"issue":"2","key":"4214_CR5","doi-asserted-by":"publisher","first-page":"339","DOI":"10.1016\/J.NCL.2018.01.006","volume":"36","author":"C Barnett","year":"2018","unstructured":"Barnett, C., Herbelin, L., Dimachkie, M. M., & Barohn, R. J. (2018). Measuring clinical treatment response in Myasthenia gravis. Neurologic Clinics, 36(2), 339. https:\/\/doi.org\/10.1016\/J.NCL.2018.01.006","journal-title":"Neurologic Clinics"},{"issue":"7","key":"4214_CR6","doi-asserted-by":"publisher","first-page":"1487","DOI":"10.1212\/WNL.52.7.1487","volume":"52","author":"GI Wolfe","year":"1999","unstructured":"Wolfe, G. I., Herbelin, L., Nations, S. P., Foster, B., Bryan, W. W., & Barohn, R. J. (1999). Myasthenia gravis activities of daily living profile. Neurology, 52(7), 1487\u20131489. https:\/\/doi.org\/10.1212\/WNL.52.7.1487","journal-title":"Neurology"},{"issue":"6","key":"4214_CR7","doi-asserted-by":"publisher","first-page":"630","DOI":"10.1002\/MUS.27476","volume":"65","author":"S Muppidi","year":"2022","unstructured":"Muppidi, S., Silvestri, N. J., Tan, R., Riggs, K., Leighton, T., & Phillips, G. A. (2022). Utilization of MG-ADL in Myasthenia gravis clinical research and care. Muscle & Nerve, 65(6), 630\u2013639. https:\/\/doi.org\/10.1002\/MUS.27476","journal-title":"Muscle & Nerve"},{"issue":"1","key":"4214_CR8","doi-asserted-by":"publisher","first-page":"14","DOI":"10.1002\/MUS.21883","volume":"43","author":"TM Burns","year":"2011","unstructured":"Burns, T. M., Grouse, C. K., Wolfe, G. I., Conaway, M. R., & Sanders, D. B. (2011). The MG-QOL15 for following the health-related quality of life of patients with Myasthenia gravis. Muscle & Nerve, 43(1), 14\u201318. https:\/\/doi.org\/10.1002\/MUS.21883","journal-title":"Muscle & Nerve"},{"issue":"7","key":"4214_CR9","doi-asserted-by":"publisher","first-page":"526","DOI":"10.1016\/S1474-4422(21)00159-9","volume":"20","author":"JF Howard","year":"2021","unstructured":"Howard, J. F., Bril, V., Vu, T., Karam, C., Peric, S., Margania, T., Murai, H., Bilinska, M., Shakarishvili, R., Smilowski, M., Guglietta, A., Ulrichts, P., Vangeneugden, T., Utsugisawa, K., Verschuuren, J., Mantegazza, R., De Bleecker, J. L., De Koning, K., De Mey, K., \u2026 Frishberg, B. (2021). Safety, efficacy, and tolerability of efgartigimod in patients with generalised Myasthenia gravis (ADAPT): A multicentre, randomised, placebo-controlled, phase 3 trial. The Lancet. Neurology, 20(7), 526\u2013536. https:\/\/doi.org\/10.1016\/S1474-4422(21)00159-9","journal-title":"The Lancet. Neurology"},{"key":"4214_CR10","doi-asserted-by":"publisher","DOI":"10.1136\/BMJOPEN-2022-068104","author":"S Berrih-Aknin","year":"2023","unstructured":"Berrih-Aknin, S., Palace, J., Meisel, A., Claeys, K. G., Muppidi, S., Sacc\u00e0, F., Amini, F., Larkin, M., Quinn, C., Beauchamp, J., Philips, G., De Ruyck, F., Ramirez, J., & Paci, S. (2023). Patient-reported impact of myasthenia gravis in the real world: Findings from a digital observational survey-based study (MyRealWorld MG). British Medical Journal Open. https:\/\/doi.org\/10.1136\/BMJOPEN-2022-068104","journal-title":"British Medical Journal Open"},{"key":"4214_CR11","doi-asserted-by":"publisher","DOI":"10.1136\/BMJOPEN-2022-066445","author":"S Dewilde","year":"2023","unstructured":"Dewilde, S., Philips, G., Paci, S., Beauchamp, J., Chiroli, S., Quinn, C., Day, L., Larkin, M., Palace, J., Berrih-Aknin, S., Claeys, K. G., Muppidi, S., Mantegazza, R., Sacc\u00e0, F., Meisel, A., Bassez, G., Murai, H., & Janssen, M. F. (2023). Patient-reported burden of myasthenia gravis: Baseline results of the international prospective, observational, longitudinal real-world digital study MyRealWorld-MG. British Medical Journal Open. https:\/\/doi.org\/10.1136\/BMJOPEN-2022-066445","journal-title":"British Medical Journal Open"},{"issue":"1","key":"4214_CR12","doi-asserted-by":"publisher","first-page":"16","DOI":"10.1212\/WNL.55.1.16","volume":"55","author":"A Jaretzki","year":"2000","unstructured":"Jaretzki, A., Barohn, R. J., Ernstoff, R. M., Kaminski, H. J., Keesey, J. C., Penn, A. S., & Sanders, D. B. (2000). Myasthenia gravis: Recommendations for clinical research standards. Task Force of the Medical Scientific Advisory Board of the Myasthenia Gravis Foundation of America. Neurology, 55(1), 16\u201323. https:\/\/doi.org\/10.1212\/WNL.55.1.16","journal-title":"Neurology"},{"key":"4214_CR13","unstructured":"Evans, J. D. . (1996). Straightforward statistics for the behavioral sciences, 600. Retrieved from, https:\/\/books.google.com\/books\/about\/Straightforward_Statistics_for_the_Behav.html?hl=nl&id=8Ca2AAAAIAAJ"},{"issue":"10","key":"4214_CR14","doi-asserted-by":"publisher","first-page":"2729","DOI":"10.1007\/S11136-021-02925-Y","volume":"30","author":"CB Terwee","year":"2021","unstructured":"Terwee, C. B., Peipert, J. D., Chapman, R., Lai, J. S., Terluin, B., Cella, D., Griffiths, P., & Mokkink, L. B. (2021). Minimal important change (MIC): A conceptual clarification and systematic review of MIC estimates of PROMIS measures. Quality of Life Research, 30(10), 2729\u20132754. https:\/\/doi.org\/10.1007\/S11136-021-02925-Y","journal-title":"Quality of Life Research"},{"issue":"4","key":"4214_CR15","doi-asserted-by":"publisher","first-page":"539","DOI":"10.1007\/S11136-010-9606-8","volume":"19","author":"LB Mokkink","year":"2010","unstructured":"Mokkink, L. B., Terwee, C. B., Patrick, D. L., Alonso, J., Stratford, P. W., Knol, D. L., Bouter, L. M., & De Vet, H. C. W. (2010). The COSMIN checklist for assessing the methodological quality of studies on measurement properties of health status measurement instruments: An international Delphi study. Quality of Life Research, 19(4), 539\u2013549. https:\/\/doi.org\/10.1007\/S11136-010-9606-8","journal-title":"Quality of Life Research"},{"issue":"2","key":"4214_CR16","doi-asserted-by":"publisher","first-page":"171","DOI":"10.1586\/ERP.11.9\/ASSET\/C0522ED7-1EF2-40EE-B518-0B0B0CF02FD9\/ASSETS\/IMAGES\/IERP_A_11215436_ILG0005.GIF","volume":"11","author":"MT King","year":"2011","unstructured":"King, M. T. (2011). A point of minimal important difference (MID): A critique of terminology and methods. Expert Review of Pharmacoeconomics and Outcomes Research, 11(2), 171\u2013184. https:\/\/doi.org\/10.1586\/ERP.11.9\/ASSET\/C0522ED7-1EF2-40EE-B518-0B0B0CF02FD9\/ASSETS\/IMAGES\/IERP_A_11215436_ILG0005.GIF","journal-title":"Expert Review of Pharmacoeconomics and Outcomes Research"},{"key":"4214_CR17","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-4-54","volume":"4","author":"HC de Vet","year":"2006","unstructured":"de Vet, H. C., Terwee, C. B., Ostelo, R. W., Beckerman, H., Knol, D. L., & Bouter, L. M. (2006). Minimal changes in health status questionnaires: Distinction between minimally detectable change and minimally important change. Health and Quality of Life Outcomes, 4, Article 54. https:\/\/doi.org\/10.1186\/1477-7525-4-54","journal-title":"Health and Quality of Life Outcomes"},{"issue":"5","key":"4214_CR18","doi-asserted-by":"publisher","first-page":"541","DOI":"10.1016\/J.SPINEE.2007.01.008","volume":"7","author":"AG Copay","year":"2007","unstructured":"Copay, A. G., Subach, B. R., Glassman, S. D., Polly, D. W., & Schuler, T. C. (2007). Understanding the minimum clinically important difference: A review of concepts and methods. The Spine Journal, 7(5), 541\u2013546. https:\/\/doi.org\/10.1016\/J.SPINEE.2007.01.008","journal-title":"The Spine Journal"},{"key":"4214_CR19","doi-asserted-by":"publisher","unstructured":"Kolen, M. J., & Brennan, R. L. (2014). Test Equating, Scaling, and Linking: Methods and Practices: Third Edition (pp. 1\u2013566). https:\/\/doi.org\/10.1007\/978-1-4939-0317-7\/COVER","DOI":"10.1007\/978-1-4939-0317-7\/COVER"},{"issue":"3","key":"4214_CR20","doi-asserted-by":"publisher","first-page":"608","DOI":"10.1080\/10618600.2020.1714633","volume":"29","author":"B Efron","year":"2020","unstructured":"Efron, B., & Narasimhan, B. (2020). The automatic construction of bootstrap confidence intervals. Journal of Computational and Graphical Statistics, 29(3), 608\u2013619. https:\/\/doi.org\/10.1080\/10618600.2020.1714633","journal-title":"Journal of Computational and Graphical Statistics"},{"issue":"1","key":"4214_CR21","doi-asserted-by":"publisher","first-page":"65","DOI":"10.1002\/MUS.27837","volume":"68","author":"S Dewilde","year":"2023","unstructured":"Dewilde, S., Janssen, M. F., Tollenaar, N. H., Vanoli, F., Frangiamore, R., Phillips, G., Paci, S., Mantegazza, R., Meisel, A., & Stascheit, F. (2023). Concordance between patient- and physician-reported Myasthenia Gravis Activities of Daily Living (MG-ADL) scores. Muscle & Nerve, 68(1), 65\u201372. https:\/\/doi.org\/10.1002\/MUS.27837","journal-title":"Muscle & Nerve"},{"key":"4214_CR22","doi-asserted-by":"publisher","unstructured":"Hosmer, D. W., Lemeshow, S., & Sturdivant, R. X. (2013). Applied Logistic Regression: Third Edition (pp. 1\u2013510). https:\/\/doi.org\/10.1002\/9781118548387","DOI":"10.1002\/9781118548387"},{"issue":"7","key":"4214_CR23","doi-asserted-by":"publisher","DOI":"10.1111\/ENE.16280","volume":"31","author":"A Meisel","year":"2024","unstructured":"Meisel, A., Sacc\u00e0, F., Spillane, J., & Vissing, J. (2024). Expert consensus recommendations for improving and standardising the assessment of patients with generalised myasthenia gravis. European Journal of Neurology, 31(7), Article e16280. https:\/\/doi.org\/10.1111\/ENE.16280","journal-title":"European Journal of Neurology"},{"issue":"1","key":"4214_CR24","doi-asserted-by":"publisher","first-page":"94","DOI":"10.1136\/JNNP-2011-301449","volume":"84","author":"C Barnett","year":"2013","unstructured":"Barnett, C., Wilson, G., Barth, D., Katzberg, H. D., & Bril, V. (2013). Changes in quality of life scores with intravenous immunoglobulin or plasmapheresis in patients with myasthenia gravis. Journal of Neurology, Neurosurgery & Psychiatry, 84(1), 94\u201397. https:\/\/doi.org\/10.1136\/JNNP-2011-301449","journal-title":"Journal of Neurology, Neurosurgery & Psychiatry"},{"issue":"5","key":"4214_CR25","doi-asserted-by":"publisher","first-page":"727","DOI":"10.1002\/MUS.22140","volume":"44","author":"S Muppidi","year":"2011","unstructured":"Muppidi, S., Wolfe, G. I., Conaway, M., & Burns, T. M. (2011). MG-ADL: Still a relevant outcome measure. Muscle & nerve, 44(5), 727\u2013731. https:\/\/doi.org\/10.1002\/MUS.22140","journal-title":"Muscle & nerve"},{"key":"4214_CR26","doi-asserted-by":"publisher","unstructured":"Mishra, B., Sudheer, P., Agarwal, A., Srivastava, M. V. P., Nilima, & Vishnu, V. Y. (2023). Minimal Clinically Important Difference (MCID) in patient. Reported outcome measures for neurological conditions: Review of concept and methods. Annals of Indian Academy of Neurology, 26(4), 334\u2013343. https:\/\/doi.org\/10.4103\/AIAN.AIAN_207_23","DOI":"10.4103\/AIAN.AIAN_207_23"}],"container-title":["Quality of Life Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11136-026-04214-y.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s11136-026-04214-y","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11136-026-04214-y.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,5,13]],"date-time":"2026-05-13T13:59:36Z","timestamp":1778680776000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s11136-026-04214-y"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,3,13]]},"references-count":26,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2026,4]]}},"alternative-id":["4214"],"URL":"https:\/\/doi.org\/10.1007\/s11136-026-04214-y","relation":{},"ISSN":["0962-9343","1573-2649"],"issn-type":[{"value":"0962-9343","type":"print"},{"value":"1573-2649","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,3,13]]},"assertion":[{"value":"8 September 2025","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"25 February 2026","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"13 March 2026","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"SD, FB and AJB are employed by Services in Health Economics (SHE). SHE received fees from argenx in relation to this study. GP and CQ are employees of argenx.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}},{"value":"Both studies included in this secondary analysis received ethical approval and were conducted in accordance with the principles of the Declaration of Helsinki. The ADAPT randomized clinical trial was approved by independent ethics committees and institutional review boards, covering the study protocol and all amendments. It is registered on ClinicalTrials.gov (NCT03669588). The MyRealWorld-MG study protocol was reviewed and approved by Salus institutional review board for participants residing in Germany, the United Kingdom, and the United States. Local ethics approval is being sought for additional study countries, including Belgium, Canada, France, Italy, Japan, and Spain. This study is registered on ClinicalTrials.gov (NCT04176211).","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval"}},{"value":"Informed consent was obtained from all participants in both studies used for this secondary analysis.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to participate"}},{"value":"not applicable.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}}],"article-number":"101"}}