{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,7]],"date-time":"2026-03-07T02:27:56Z","timestamp":1772850476407,"version":"3.50.1"},"reference-count":41,"publisher":"Springer Science and Business Media LLC","issue":"3","license":[{"start":{"date-parts":[[2018,2,15]],"date-time":"2018-02-15T00:00:00Z","timestamp":1518652800000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/100008272","name":"Novartis Pharmaceuticals Corporation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100008272","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Adv Ther"],"published-print":{"date-parts":[[2018,3]]},"DOI":"10.1007\/s12325-018-0669-1","type":"journal-article","created":{"date-parts":[[2018,2,15]],"date-time":"2018-02-15T09:40:44Z","timestamp":1518687644000},"page":"424-437","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":14,"title":["Using Self-Reported Patient Experiences to Understand Patient Burden: Learnings from Digital Patient Communities in Ankylosing Spondylitis"],"prefix":"10.1007","volume":"35","author":[{"given":"Prashanth","family":"Sunkureddi","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Dawn","family":"Gibson","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Stephen","family":"Doogan","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"John","family":"Heid","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Samir","family":"Benosman","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Yujin","family":"Park","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2018,2,15]]},"reference":[{"key":"669_CR1","doi-asserted-by":"publisher","first-page":"1379","DOI":"10.1016\/S0140-6736(07)60635-7","volume":"369","author":"J Braun","year":"2007","unstructured":"Braun J, Sieper J. Ankylosing spondylitis. Lancet. 2007;369:1379\u201390.","journal-title":"Lancet"},{"key":"669_CR2","doi-asserted-by":"publisher","first-page":"777","DOI":"10.1136\/ard.2009.108233","volume":"68","author":"M Rudwaleit","year":"2009","unstructured":"Rudwaleit M, van der Heijde D, Landewe R, et al. The development of Assessment of SpondyloArthritis international Society classification criteria for axial spondyloarthritis (part II): validation and final selection. Ann Rheum Dis. 2009;68:777\u201383.","journal-title":"Ann Rheum Dis"},{"key":"669_CR3","doi-asserted-by":"publisher","first-page":"650","DOI":"10.1093\/rheumatology\/ket387","volume":"53","author":"LE Dean","year":"2014","unstructured":"Dean LE, Jones GT, MacDonald AG, Downham C, Sturrock RD, Macfarlane GJ. Global prevalence of ankylosing spondylitis. Rheumatology (Oxford). 2014;53:650\u20137.","journal-title":"Rheumatology (Oxford)"},{"key":"669_CR4","doi-asserted-by":"publisher","first-page":"282","DOI":"10.1002\/art.39298","volume":"68","author":"MM Ward","year":"2016","unstructured":"Ward MM, Deodhar A, Akl EA, et al. American College of Rheumatology\/Spondylitis Association of America\/Spondyloarthritis Research and Treatment Network 2015 recommendations for the treatment of ankylosing spondylitis and nonradiographic axial spondyloarthritis. Arthritis Rheumatol. 2016;68:282\u201398.","journal-title":"Arthritis Rheumatol"},{"key":"669_CR5","doi-asserted-by":"publisher","first-page":"978","DOI":"10.1136\/annrheumdis-2016-210770","volume":"76","author":"D Heijde van der","year":"2017","unstructured":"van der Heijde D, Ramiro S, Landewe R, et al. 2016 update of the ASAS-EULAR management recommendations for axial spondyloarthritis. Ann Rheum Dis. 2017;76:978\u201391.","journal-title":"Ann Rheum Dis"},{"key":"669_CR6","doi-asserted-by":"publisher","first-page":"812","DOI":"10.1093\/rheumatology\/kep457","volume":"49","author":"MC Reilly","year":"2010","unstructured":"Reilly MC, Gooch KL, Wong RL, Kupper H, van der Heijde D. Validity, reliability and responsiveness of the work productivity and activity impairment questionnaire in ankylosing spondylitis. Rheumatology (Oxford). 2010;49:812\u20139.","journal-title":"Rheumatology (Oxford)"},{"key":"669_CR7","doi-asserted-by":"publisher","first-page":"137","DOI":"10.4103\/2229-3485.86879","volume":"2","author":"PR Deshpande","year":"2011","unstructured":"Deshpande PR, Rajan S, Sudeepthi BL, Abdul Nazir CP. Patient-reported outcomes: a new era in clinical research. Perspect Clin Res. 2011;2:137\u201344.","journal-title":"Perspect Clin Res"},{"key":"669_CR8","doi-asserted-by":"publisher","first-page":"552","DOI":"10.1093\/rheumatology\/ket397","volume":"53","author":"KL Haywood","year":"2014","unstructured":"Haywood KL, Packham JC, Jordan KP. Assessing fatigue in ankylosing spondylitis: the importance of frequency and severity. Rheumatology (Oxford). 2014;53:552\u20136.","journal-title":"Rheumatology (Oxford)"},{"key":"669_CR9","first-page":"S-105","volume":"32","author":"U Kiltz","year":"2014","unstructured":"Kiltz U, van der Heijde D, Boonen A, Braun J. The ASAS health index (ASAS HI)\u2014a new tool to assess the health status of patients with spondyloarthritis. Clin Exp Rheumatol. 2014;32:S-105\u20138.","journal-title":"Clin Exp Rheumatol"},{"issue":"1","key":"669_CR10","doi-asserted-by":"publisher","first-page":"20","DOI":"10.1136\/ard.62.1.20","volume":"62","author":"LC Doward","year":"2003","unstructured":"Doward LC, Spoorenberg A, Cook SA, et al. Development of the ASQoL: a quality of life instrument specific to ankylosing spondylitis. Ann Rheum Dis. 2003;62(1):20\u20136.","journal-title":"Ann Rheum Dis"},{"key":"669_CR11","first-page":"2286","volume":"21","author":"S Garrett","year":"1994","unstructured":"Garrett S, Jenkinson T, Kennedy LG, Whitelock H, Gaisford P, Calin A. A new approach to defining disease status in ankylosing spondylitis: the Bath Ankylosing Spondylitis Disease Activity Index. J Rheumatol. 1994;21:2286\u201391.","journal-title":"J Rheumatol"},{"key":"669_CR12","first-page":"2281","volume":"21","author":"A Calin","year":"1994","unstructured":"Calin A, Garrett S, Whitelock H, et al. A new approach to defining functional ability in ankylosing spondylitis: the development of the Bath Ankylosing Spondylitis Functional Index. J Rheumatol. 1994;21:2281\u20135.","journal-title":"J Rheumatol"},{"key":"669_CR13","first-page":"946","volume":"17","author":"LH Daltroy","year":"1990","unstructured":"Daltroy LH, Larson MG, Roberts NW, Liang MH. A modification of the Health Assessment Questionnaire for the Spondyloarthropathies. J Rheumatol. 1990;17:946\u201350.","journal-title":"J Rheumatol"},{"key":"669_CR14","doi-asserted-by":"publisher","first-page":"39","DOI":"10.1136\/annrheumdis-2013-204231","volume":"73","author":"R Landewe","year":"2014","unstructured":"Landewe R, Braun J, Deodhar A, et al. Efficacy of certolizumab pegol on signs and symptoms of axial spondyloarthritis including ankylosing spondylitis: 24-week results of a double-blind randomised placebo-controlled Phase 3 study. Ann Rheum Dis. 2014;73:39\u201347.","journal-title":"Ann Rheum Dis"},{"key":"669_CR15","doi-asserted-by":"publisher","first-page":"2534","DOI":"10.1056\/NEJMoa1505066","volume":"373","author":"D Baeten","year":"2015","unstructured":"Baeten D, Sieper J, Braun J, on behalf of the MEASURE 1 Study Group, MEASURE 2 Study Group. Secukinumab, an interleukin-17A inhibitor, in ankylosing spondylitis. N Engl J Med. 2015;373:2534\u201348.","journal-title":"N Engl J Med"},{"key":"669_CR16","doi-asserted-by":"publisher","first-page":"3230","DOI":"10.1002\/art.11325","volume":"48","author":"JC Davis Jr","year":"2003","unstructured":"Davis JC Jr, Van Der Heijde D, Braun J, on behalf of the Enbrel Ankylosing Spondylitis Study Group. Recombinant human tumor necrosis factor receptor (etanercept) for treating ankylosing spondylitis: a randomized, controlled trial. Arthritis Rheum. 2003;48:3230\u20136.","journal-title":"Arthritis Rheum"},{"key":"669_CR17","doi-asserted-by":"publisher","first-page":"3402","DOI":"10.1002\/art.23969","volume":"58","author":"RD Inman","year":"2008","unstructured":"Inman RD, Davis JC Jr, Heijde D, et al. Efficacy and safety of golimumab in patients with ankylosing spondylitis: results of a randomized, double-blind, placebo-controlled, phase III trial. Arthritis Rheum. 2008;58:3402\u201312.","journal-title":"Arthritis Rheum"},{"key":"669_CR18","doi-asserted-by":"publisher","first-page":"582","DOI":"10.1002\/art.20852","volume":"52","author":"D Heijde van der","year":"2005","unstructured":"van der Heijde D, Dijkmans B, Geusens P, on behalf of the Ankylosing Spondylitis Study for the Evaluation of Recombinant Infliximab Therapy Study Group. Efficacy and safety of infliximab in patients with ankylosing spondylitis: results of a randomized, placebo-controlled trial (ASSERT). Arthritis Rheum. 2005;52:582\u201391.","journal-title":"Arthritis Rheum"},{"key":"669_CR19","doi-asserted-by":"publisher","first-page":"2136","DOI":"10.1002\/art.21913","volume":"54","author":"D Heijde van der","year":"2006","unstructured":"van der Heijde D, Kivitz A, Schiff MH, on behalf of the ATLAS Study Group. Efficacy and safety of adalimumab in patients with ankylosing spondylitis: results of a multicenter, randomized, double-blind, placebo-controlled trial. Arthritis Rheum. 2006;54:2136\u201346.","journal-title":"Arthritis Rheum"},{"key":"669_CR20","doi-asserted-by":"publisher","first-page":"243","DOI":"10.1186\/1471-2474-13-243","volume":"13","author":"R Cooksey","year":"2010","unstructured":"Cooksey R, Brophy S, Husain MJ, Irvine E, Davies H, Siebert S. The information needs of people living with ankylosing spondylitis: a questionnaire survey. BMC Musculoskelet Disord. 2010;13:243.","journal-title":"BMC Musculoskelet Disord"},{"key":"669_CR21","doi-asserted-by":"publisher","first-page":"724","DOI":"10.3899\/jrheum.150414","volume":"43","author":"AL Betegnie","year":"2016","unstructured":"Betegnie AL, Gauchet A, Lehmann A, et al. Why do patients with chronic inflammatory rheumatic diseases discontinue their biologics? An assessment of patients\u2019 adherence using a self-report questionnaire. J Rheumatol. 2016;43:724\u201330.","journal-title":"J Rheumatol"},{"key":"669_CR22","first-page":"169","volume":"23","author":"JS Tyrell","year":"2016","unstructured":"Tyrell JS, Redshaw CH. Physical activity in ankylosing spondylitis: evaluation and analysis of an eHealth tool. J Innov Health Inform. 2016;23:169.","journal-title":"J Innov Health Inform"},{"key":"669_CR23","doi-asserted-by":"publisher","first-page":"451","DOI":"10.1093\/jamia\/ocw176","volume":"24","author":"S Zhang","year":"2017","unstructured":"Zhang S, O\u2019Carroll Bantum E, Owen J, Bakken S, Elhadad N. Online cancer communities as informatics intervention for social support: conceptualization, characterization, and impact. J Am Med Inform Assoc. 2017;24:451\u20139.","journal-title":"J Am Med Inform Assoc"},{"key":"669_CR24","unstructured":"Spondylitis Association of America. 2016. http:\/\/www.spondylitis.org\/ . Accessed 20 Sept 2016."},{"key":"669_CR25","unstructured":"PatientsLikeMe: ankylosing spondylitis. 2018. https:\/\/www.patientslikeme.com\/conditions\/201-ankylosing-spondylitis . Accessed 12 Jan 2018."},{"key":"669_CR26","unstructured":"KickAS. In: KickAS. 2016. http:\/\/kickas.org\/ . Accessed 29 Sept 2016."},{"key":"669_CR27","unstructured":"World Health Organization. International Classification of Functioning, Disability and Health (ICF). 2016. http:\/\/www.who.int\/classifications\/icf\/en\/ . Accessed 20 Sept 2016."},{"key":"669_CR28","doi-asserted-by":"publisher","first-page":"830","DOI":"10.1136\/annrheumdis-2013-203967","volume":"74","author":"U Kiltz","year":"2015","unstructured":"Kiltz U, van der Heijde D, Boonen A, et al. Development of a health index in patients with ankylosing spondylitis (ASAS HI): final result of a global initiative based on the ICF guided by ASAS. Ann Rheum Dis. 2015;74:830\u20135.","journal-title":"Ann Rheum Dis"},{"key":"669_CR29","doi-asserted-by":"publisher","first-page":"137","DOI":"10.1002\/art.1780230202","volume":"23","author":"JF Fries","year":"1980","unstructured":"Fries JF, Spitz P, Kraines RG, Holman HR. Measurement of patient outcome in arthritis. Arthritis Rheum. 1980;23:137\u201345.","journal-title":"Arthritis Rheum"},{"key":"669_CR30","doi-asserted-by":"crossref","first-page":"652","DOI":"10.1136\/annrheumdis-2017-eular.2629","volume":"76","author":"F Yurdakul","year":"2017","unstructured":"Yurdakul F, Garip Y, Ko\u00e7ak RU, Almaz E, U\u00e7kun A, Bodur H. Psychiatric disorders associated with ankylosing spondylitis. Ann Rheum Dis. 2017;76:652\u20133.","journal-title":"Ann Rheum Dis"},{"key":"669_CR31","doi-asserted-by":"publisher","first-page":"625","DOI":"10.3899\/jrheum.150388","volume":"43","author":"CC Shen","year":"2016","unstructured":"Shen CC, Hu LY, Yang AC, Kuo BI, Chiang YY, Tsai SJ. Risk of psychiatric disorders following ankylosing spondylitis: a nationwide population-based retrospective cohort study. J Rheumatol. 2016;43:625\u201331.","journal-title":"J Rheumatol"},{"key":"669_CR32","doi-asserted-by":"publisher","first-page":"473","DOI":"10.1097\/00005650-199206000-00002","volume":"30","author":"JE Ware Jr","year":"1992","unstructured":"Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992;30:473\u201383.","journal-title":"Med Care"},{"key":"669_CR33","doi-asserted-by":"publisher","first-page":"353","DOI":"10.2165\/00019053-199304050-00006","volume":"4","author":"MC Reilly","year":"1993","unstructured":"Reilly MC, Zbrozek AS, Dukes EM. The validity and reproducibility of a work productivity and activity impairment instrument. Pharmacoeconomics. 1993;4:353\u201365.","journal-title":"Pharmacoeconomics"},{"key":"669_CR34","doi-asserted-by":"publisher","first-page":"295","DOI":"10.1016\/j.jbspin.2015.06.012","volume":"83","author":"I-H Song","year":"2016","unstructured":"Song I-H, Brenneis C, Hammel L, et al. Ankylosing spondylitis self-help organisations\u2014do members differ from non-members? Joint Bone Spine. 2016;83:295\u2013300.","journal-title":"Joint Bone Spine."},{"key":"669_CR35","doi-asserted-by":"publisher","first-page":"441","DOI":"10.1016\/j.rdc.2012.09.003","volume":"38","author":"C Stolwijk","year":"2012","unstructured":"Stolwijk C, Boonen A, van Tubergen A, Reveille JD. Epidemiology of spondyloarthritis. Rheum Dis Clin North Am. 2012;38:441\u201376.","journal-title":"Rheum Dis Clin North Am"},{"key":"669_CR36","doi-asserted-by":"publisher","first-page":"468","DOI":"10.1097\/BOR.0b013e3283620e1d","volume":"25","author":"JD Reveille","year":"2013","unstructured":"Reveille JD. A registry of ankylosing spondylitis registries and prospects for global interfacing. Curr Opin Rheumatol. 2013;25:468\u201376.","journal-title":"Curr Opin Rheumatol"},{"key":"669_CR37","doi-asserted-by":"publisher","first-page":"e12","DOI":"10.1136\/annrheumdis-2013-204867","volume":"74","author":"J Sorensen","year":"2015","unstructured":"Sorensen J, Hetland ML, on behalf of all departments of rheumatology in Denmark. Diagnostic delay in patients with rheumatoid arthritis, psoriatic arthritis and ankylosing spondylitis: results from the Danish nationwide DANBIO registry. Ann Rheum Dis. 2015;74:e12.","journal-title":"Ann Rheum Dis"},{"key":"669_CR38","doi-asserted-by":"publisher","first-page":"378","DOI":"10.1186\/s13075-015-0897-6","volume":"17","author":"JK Wallman","year":"2015","unstructured":"Wallman JK, Kapetanovic MC, Petersson IF, Geborek P, Kristensen LE. Comparison of non-radiographic axial spondyloarthritis and ankylosing spondylitis patients\u2013baseline characteristics, treatment adherence, and development of clinical variables during 3\u00a0years of anti-TNF therapy in clinical practice. Arthritis Res Ther. 2015;17:378.","journal-title":"Arthritis Res Ther."},{"key":"669_CR39","doi-asserted-by":"publisher","first-page":"66","DOI":"10.1093\/rheumatology\/35.1.66","volume":"35","author":"SD Jones","year":"1996","unstructured":"Jones SD, Steiner A, Garrett SL, Calin A. The Bath Ankylosing Spondylitis Patient Global Score (BAS-G). Br J Rheumatol. 1996;35:66\u201371.","journal-title":"Br J Rheumatol"},{"key":"669_CR40","doi-asserted-by":"publisher","first-page":"18","DOI":"10.1136\/ard.2008.094870","volume":"68","author":"C Lukas","year":"2009","unstructured":"Lukas C, Landewe R, Sieper J, on behalf of the Assessment of SpondyloArthritis international Society. Development of an ASAS-endorsed disease activity score (ASDAS) in patients with ankylosing spondylitis. Ann Rheum Dis. 2009;68:18\u201324.","journal-title":"Ann Rheum Dis"},{"key":"669_CR41","doi-asserted-by":"publisher","first-page":"42","DOI":"10.1016\/j.jval.2015.10.013","volume":"19","author":"KP McCarrier","year":"2016","unstructured":"McCarrier KP, Bull S, Fleming S, et al. Concept elicitation within patient-powered research networks: a feasibility study in chronic lymphocytic leukemia. Value Health. 2016;19:42\u201352.","journal-title":"Value Health"}],"container-title":["Advances in Therapy"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/link.springer.com\/article\/10.1007\/s12325-018-0669-1\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1007\/s12325-018-0669-1.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1007\/s12325-018-0669-1.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,7,1]],"date-time":"2025-07-01T21:18:59Z","timestamp":1751404739000},"score":1,"resource":{"primary":{"URL":"http:\/\/link.springer.com\/10.1007\/s12325-018-0669-1"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2018,2,15]]},"references-count":41,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2018,3]]}},"alternative-id":["669"],"URL":"https:\/\/doi.org\/10.1007\/s12325-018-0669-1","relation":{},"ISSN":["0741-238X","1865-8652"],"issn-type":[{"value":"0741-238X","type":"print"},{"value":"1865-8652","type":"electronic"}],"subject":[],"published":{"date-parts":[[2018,2,15]]},"assertion":[{"value":"19 October 2017","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"15 February 2018","order":2,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}}]}}