{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,14]],"date-time":"2026-09-14T07:04:04Z","timestamp":1789369444770,"version":"build-2803163510"},"reference-count":42,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2026,9,1]],"date-time":"2026-09-01T00:00:00Z","timestamp":1788220800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2026,9,1]],"date-time":"2026-09-01T00:00:00Z","timestamp":1788220800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/501100001809","name":"National Natural Science Foundation of China","doi-asserted-by":"publisher","award":["82171341"],"award-info":[{"award-number":["82171341"]}],"id":[{"id":"10.13039\/501100001809","id-type":"DOI","asserted-by":"publisher"}]},{"name":"Huashan Hospital, Fudan University Investigator\u2011initiated Research Project","award":["2023QD034"],"award-info":[{"award-number":["2023QD034"]}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Ther Adv Neurol Disord"],"published-print":{"date-parts":[[2026,9]]},"abstract":"<jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) is a rare demyelinating disorder with evolving diagnostic and treatment landscape. Real-world evidence on treatment patterns, access, and disease burden remains limited, particularly in China.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>To characterize the patient journey, treatment patterns, healthcare resource utilization (HCRU) and multidimensional disease burden of MOGAD in China.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>Nationwide, cross-sectional electronic survey.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Patients with MOGAD and their caregivers completed an electronic survey capturing diagnostic and treatment history, HCRU, and patient-reported outcomes. Data were stratified by age and treatment phases. Multivariable linear regression was used to identify determinants of health-related quality of life (HRQoL).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      The cohort (n=336) was predominantly pediatric (69.6%). Corticosteroids remained the most widely used across treatment phases. The use of steroid-sparing immunosuppressants increased during maintenance treatment and showed age-specific patterns (SMD=0.9): children used intravenous immunoglobulin more often (57.7%), whereas adults more frequently received mycophenolate mofetil (54.2%). Barriers to treatment access were reflected by distance to obtain care and profound economic burden with high out-of-pocket expenses (up to 100% of total expenditure), while 66.7% of participants reported lack of reimbursement as a major obstacle. Despite largely preserved physical function, HRQoL remained reduced (SF-6Dv2 0.66) with high productivity loss mainly driven by presenteeism. Withdrawal from education\/employment was the strongest predictor of reduced HRQoL (\u03b2\n                      <jats:sub>std<\/jats:sub>\n                      = -0.252, p&lt;0.001), exceeding clinical and treatment-related factors. Caregiver burden was considerable, with 43% requiring leave from work\/school, and their high levels of psychosocial distress were evidenced by anxiety and depression screening scores.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Real-world management of MOGAD in China is characterized by persistent use of corticosteroids and barriers of access to steroid-sparing immunotherapies. These constraints are associated with impaired quality of life and substantial socioeconomic burden. Improving access to effective and affordable maintenance therapies and strengthening multidisciplinary support may improve long-term outcomes for patients and caregivers.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/17562864261486694","type":"journal-article","created":{"date-parts":[[2026,9,11]],"date-time":"2026-09-11T05:24:52Z","timestamp":1789104292000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Treatment patterns, access, and multidimensional burden of myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) in China: A nationwide cross-sectional study"],"prefix":"10.1177","volume":"19","author":[{"ORCID":"https:\/\/orcid.org\/0009-0008-1388-688X","authenticated-orcid":false,"given":"Yue","family":"Yu","sequence":"first","affiliation":[{"name":"Huashan Hospital"},{"name":"Fudan University"},{"name":"Huashan Hospital"},{"name":"Fudan University"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yuxin","family":"Fan","sequence":"additional","affiliation":[{"name":"Huashan Hospital"},{"name":"Fudan University"},{"name":"Huashan Hospital"},{"name":"Fudan University"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Han","family":"Bao","sequence":"additional","affiliation":[{"name":"Sun Yat-sen University"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Xiaoyan","family":"Ding","sequence":"additional","affiliation":[{"name":"Patient Organization \u201cNMO Family Shanghai\u201d affiliated with Shanghai Rare Disease Prevention and Treatment Foundation, Shanghai, China"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chao","family":"Quan","sequence":"additional","affiliation":[{"name":"Huashan Hospital"},{"name":"Fudan University"},{"name":"Huashan Hospital"},{"name":"Fudan University"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chunlai","family":"Ma","sequence":"additional","affiliation":[{"name":"Huashan Hospital"},{"name":"Fudan University"},{"name":"Huashan Hospital"},{"name":"Fudan University"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,9,10]]},"reference":[{"key":"e_1_3_7_2_2","doi-asserted-by":"publisher","DOI":"10.3389\/fneur.2023.1260358"},{"key":"e_1_3_7_3_2","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(22)00431-8"},{"key":"e_1_3_7_4_2","doi-asserted-by":"publisher","DOI":"10.1177\/13524585231156736"},{"key":"e_1_3_7_5_2","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp-2022-330901"},{"key":"e_1_3_7_6_2","doi-asserted-by":"publisher","DOI":"10.3389\/fimmu.2023.1162647"},{"key":"e_1_3_7_7_2","unstructured":"Levy M Flanagan E K\u00fcmpfel T et al. Safety and Efficacy of Satralizumab in Patients with Relapsing Myelin Oligodendrocyte Glycoprotein Antibody-associated Disease (MOGAD): Results from the Phase 3 METEOROID Trial (PL5.006). Clinical Trials Plenary Session p. 6020."},{"key":"e_1_3_7_8_2","unstructured":"Ucb Biopharma SRL. A Randomized Double-Blind Placebo-Controlled Multicenter Phase 3 Pivotal Study With an Open-Label Extension Period to Evaluate the Efficacy and Safety of Rozanolixizumab in Adult Participants With Myelin Oligodendrocyte Glycoprotein (MOG) Antibody-Associated Disease (MOG-AD). 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