{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,24]],"date-time":"2026-02-24T15:51:02Z","timestamp":1771948262313,"version":"3.50.1"},"reference-count":33,"publisher":"Springer Science and Business Media LLC","issue":"11","license":[{"start":{"date-parts":[[2020,7,1]],"date-time":"2020-07-01T00:00:00Z","timestamp":1593561600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2020,7,1]],"date-time":"2020-07-01T00:00:00Z","timestamp":1593561600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Qual Life Res"],"published-print":{"date-parts":[[2020,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n<jats:title>Purpose<\/jats:title>\n<jats:p>The ankylosing spondylitis quality of life (ASQoL) instrument is widely used to assess health-related quality of life in patients with ankylosing spondylitis (AS). We assessed the relevance of the ASQoL items in patients with non-radiographic axial spondyloarthritis (nr-axSpA), a distinct subgroup within the axSpA disease spectrum.<\/jats:p>\n<\/jats:sec><jats:sec>\n<jats:title>Methods<\/jats:title>\n<jats:p>This observational, cross-sectional, qualitative interview study recruited patients from clinic settings. Interviews from patients with axSpA who participated in a prior qualitative study were also used. Patients initially underwent a concept elicitation interview using open-ended questions to evaluate relevance of the concepts measured by the ASQoL. They then completed the ASQoL and underwent a cognitive interview to assess their understanding of the items, instructions and response options. Transcripts from patients who participated in the previous qualitative study (who did not complete the ASQoL or undergo cognitive interview) were evaluated to identify expressions of the concepts in the ASQoL.<\/jats:p>\n<\/jats:sec><jats:sec>\n<jats:title>Results<\/jats:title>\n<jats:p>A total of 18 patients with nr-axSpA participated. The concept elicitation interview findings supported the relevance of the ASQoL items. Cognitive interviews determined that the ASQoL was easily understood; the 13 new patients chose a response for each item that matched their experience with nr-axSpA. Transcripts for the five previously interviewed patients confirmed the concepts presented in the ASQoL items were relevant and important to their experience of living with nr-axSpA.<\/jats:p>\n<\/jats:sec><jats:sec>\n<jats:title>Conclusions<\/jats:title>\n<jats:p>Our results represent an important first step in confirming the relevance of the concepts in the ASQoL to patients with nr-axSpA, supporting quantitative assessment of ASQoL validity in this population.<\/jats:p>\n<\/jats:sec>","DOI":"10.1007\/s11136-020-02552-z","type":"journal-article","created":{"date-parts":[[2020,7,1]],"date-time":"2020-07-01T02:41:42Z","timestamp":1593571302000},"page":"3155-3166","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["Content validity of the ASQoL for use in a non-radiographic axial spondyloarthritis population: a qualitative study"],"prefix":"10.1007","volume":"29","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-2160-1481","authenticated-orcid":false,"given":"Mark C.","family":"Hwang","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mona","family":"Martin","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kristina","family":"Harris","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Philip","family":"Geerdts","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jeffrey L.","family":"Stark","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"John","family":"Reveille","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2020,7,1]]},"reference":[{"issue":"5","key":"2552_CR1","doi-asserted-by":"publisher","first-page":"262","DOI":"10.1038\/nrrheum.2012.39","volume":"8","author":"M Rudwaleit","year":"2012","unstructured":"Rudwaleit, M., & Sieper, J. (2012). Referral strategies for early diagnosis of axial spondyloarthritis. Nature Reviews Rheumatology, 8(5), 262\u2013268.","journal-title":"Nature Reviews Rheumatology"},{"issue":"3","key":"2552_CR2","doi-asserted-by":"publisher","first-page":"543","DOI":"10.1002\/art.37803","volume":"65","author":"J Sieper","year":"2013","unstructured":"Sieper, J., & van der Heijde, D. (2013). Review: Nonradiographic axial spondyloarthritis: New definition of an old disease? Arthritis and Rheumatism, 65(3), 543\u2013551.","journal-title":"Arthritis and Rheumatism"},{"issue":"4","key":"2552_CR3","doi-asserted-by":"publisher","first-page":"361","DOI":"10.1002\/art.1780270401","volume":"27","author":"S van der Linden","year":"1984","unstructured":"van der Linden, S., Valkenburg, H. A., & Cats, A. (1984). Evaluation of diagnostic criteria for ankylosing spondylitis. A proposal for modification of the New York criteria. Arthritis and Rheumatism, 27(4), 361\u2013368.","journal-title":"Arthritis and Rheumatism"},{"issue":"1","key":"2552_CR4","doi-asserted-by":"publisher","first-page":"286","DOI":"10.1186\/s13075-017-1493-8","volume":"19","author":"N Ghosh","year":"2017","unstructured":"Ghosh, N., & Ruderman, E. M. (2017). Nonradiographic axial spondyloarthritis: Clinical and therapeutic relevance. Arthritis Research & Therapy, 19(1), 286.","journal-title":"Arthritis Research & Therapy"},{"issue":"6","key":"2552_CR5","doi-asserted-by":"publisher","first-page":"525","DOI":"10.1080\/1744666X.2018.1477591","volume":"14","author":"M Protopopov","year":"2018","unstructured":"Protopopov, M., & Poddubnyy, D. (2018). Radiographic progression in non-radiographic axial spondyloarthritis. Expert Review of Clinical Immunology, 14(6), 525\u2013533.","journal-title":"Expert Review of Clinical Immunology"},{"issue":"51","key":"2552_CR6","doi-asserted-by":"publisher","first-page":"e5652","DOI":"10.1097\/MD.0000000000005652","volume":"95","author":"M Landi","year":"2016","unstructured":"Landi, M., Maldonado-Ficco, H., Perez-Alamino, R., Maldonado-Cocco, J. A., Citera, G., Arturi, P., et al. (2016). Gender differences among patients with primary ankylosing spondylitis and spondylitis associated with psoriasis and inflammatory bowel disease in an iberoamerican spondyloarthritis cohort. Medicine (Baltimore), 95(51), e5652.","journal-title":"Medicine (Baltimore)"},{"issue":"1","key":"2552_CR7","doi-asserted-by":"publisher","first-page":"218","DOI":"10.1186\/s13075-018-1705-x","volume":"20","author":"A Ortolan","year":"2018","unstructured":"Ortolan, A., van Lunteren, M., Ramiro, S., Ramonda, R., Landewe, R. B. M., Dagfinrud, H., et al. (2018). Are gender-specific approaches needed in diagnosing early axial spondyloarthritis? Data from the SPondyloArthritis Caught Early cohort. Arthritis Research & Therapy, 20(1), 218.","journal-title":"Arthritis Research & Therapy"},{"issue":"Suppl 1","key":"2552_CR8","doi-asserted-by":"publisher","first-page":"e000053","DOI":"10.1136\/rmdopen-2015-000053","volume":"1","author":"X Baraliakos","year":"2015","unstructured":"Baraliakos, X., & Braun, J. (2015). Non-radiographic axial spondyloarthritis and ankylosing spondylitis: What are the similarities and differences? RMD Open, 1(Suppl 1), e000053.","journal-title":"RMD Open"},{"issue":"11","key":"2552_CR9","doi-asserted-by":"publisher","first-page":"1661","DOI":"10.1002\/acr.23534","volume":"70","author":"PJ Mease","year":"2018","unstructured":"Mease, P. J., Heijde, D. V., Karki, C., Palmer, J. B., Liu, M., Pandurengan, R., et al. (2018). Characterization of patients with ankylosing spondylitis and nonradiographic axial spondyloarthritis in the US-based Corrona Registry. Arthritis Care & Research (Hoboken), 70(11), 1661\u20131670.","journal-title":"Arthritis Care & Research (Hoboken)"},{"issue":"5","key":"2552_CR10","doi-asserted-by":"publisher","first-page":"556","DOI":"10.1016\/j.semarthrit.2014.10.009","volume":"44","author":"A Boonen","year":"2015","unstructured":"Boonen, A., Sieper, J., van der Heijde, D., Dougados, M., Bukowski, J. F., Valluri, S., et al. (2015). The burden of non-radiographic axial spondyloarthritis. Seminars in Arthritis and Rheumatism, 44(5), 556\u2013562.","journal-title":"Seminars in Arthritis and Rheumatism"},{"issue":"4","key":"2552_CR11","doi-asserted-by":"publisher","first-page":"529","DOI":"10.1007\/s40744-019-00172-9","volume":"6","author":"PJ Mease","year":"2019","unstructured":"Mease, P. J., Liu, M., Rebello, S., Kang, H., Yi, E., Park, Y., et al. (2019). Comparative disease burden in patients with rheumatoid arthritis, psoriatic arthritis, or axial spondyloarthritis: data from two Corrona Registries. Rheumatology and Therapy, 6(4), 529\u2013542.","journal-title":"Rheumatology and Therapy"},{"key":"2552_CR12","doi-asserted-by":"crossref","unstructured":"Mease, P. J., van Tubergen, A., Deodhar, A., Coteur, G., Nurminen, T., & van der Heijde, D. (2013). Comparing health-related quality of life across rheumatoid arthritis, psoriatic arthritis and axial spondyloarthritis: analyses from certolizumab pegol clinical trial baseline data. Annals of the Rheumatic Diseases, doi: 10.1016\/j.jval.2013.08.1528","DOI":"10.1016\/j.jval.2013.08.1528"},{"key":"2552_CR13","doi-asserted-by":"crossref","unstructured":"Ward, M. M., Deodhar, A., Gensler, L. S., Dubreuil, M., Yu, D., Khan, M. A., et al. (2019). 2019 Update of the American College of Rheumatology\/Spondylitis Association of America\/Spondyloarthritis Research and Treatment Network Recommendations for the treatment of ankylosing spondylitis and nonradiographic axial spondyloarthritis. Arthritis Care & Research (Hoboken), 71.","DOI":"10.1002\/acr.24025"},{"issue":"4","key":"2552_CR14","doi-asserted-by":"publisher","first-page":"300","DOI":"10.1080\/03009742.2018.1559878","volume":"48","author":"NJ Mars","year":"2019","unstructured":"Mars, N. J., Kerola, A. M., Kauppi, M. J., Pirinen, M., Elonheimo, O., & Sokka-Isler, T. (2019). Patients with rheumatic diseases share similar patterns of healthcare resource utilization. Scandinavian Journal of Rheumatology, 48(4), 300\u2013307.","journal-title":"Scandinavian Journal of Rheumatology"},{"issue":"4","key":"2552_CR15","doi-asserted-by":"publisher","first-page":"e0123582","DOI":"10.1371\/journal.pone.0123582","volume":"10","author":"B Michelsen","year":"2015","unstructured":"Michelsen, B., Fiane, R., Diamantopoulos, A. P., Soldal, D. M., Hansen, I. J., Sokka, T., et al. (2015). A comparison of disease burden in rheumatoid arthritis, psoriatic arthritis and axial spondyloarthritis. PLoS ONE, 10(4), e0123582.","journal-title":"PLoS ONE"},{"key":"2552_CR16","doi-asserted-by":"publisher","first-page":"25","DOI":"10.1186\/1477-7525-7-25","volume":"7","author":"F Salaffi","year":"2009","unstructured":"Salaffi, F., Carotti, M., Gasparini, S., Intorcia, M., & Grassi, W. (2009). The health-related quality of life in rheumatoid arthritis, ankylosing spondylitis, and psoriatic arthritis: a comparison with a selected sample of healthy people. Health and Quality of Life Outcomes, 7, 25.","journal-title":"Health and Quality of Life Outcomes"},{"key":"2552_CR17","unstructured":"Zink, A., Thiele, K., Huscher, D., Listing, J., Sieper, J., Krause, A., et al. (2006). Healthcare and burden of disease in psoriatic arthritis. A comparison with rheumatoid arthritis and ankylosing spondylitis. The Journal of Rheumatology, 33(1), 86\u201390."},{"key":"2552_CR18","unstructured":"Yu, D. T., & van Tubergen, A. (2019). Patient education: Axial spondyloarthritis, including ankylosing spondylitis (Beyond the Basics). Available from: https:\/\/www.uptodate.com\/contents\/axial-spondyloarthritis-including-ankylosing-spondylitis-beyond-the-basics. Last updated January 2019."},{"issue":"6","key":"2552_CR19","first-page":"975","volume":"34","author":"J Sieper","year":"2016","unstructured":"Sieper, J., Holbrook, T., Black, C. M., Wood, R., Hu, X., & Kachroo, S. (2016). Burden of illness associated with non-radiographic axial spondyloarthritis: a multiperspective European cross-sectional observational study. Clinical and Experimental Rheumatology, 34(6), 975\u2013983.","journal-title":"Clinical and Experimental Rheumatology"},{"issue":"1","key":"2552_CR20","doi-asserted-by":"publisher","first-page":"20","DOI":"10.1136\/ard.62.1.20","volume":"62","author":"LC Doward","year":"2003","unstructured":"Doward, L. C., Spoorenberg, A., Cook, S. A., Whalley, D., Helliwell, P. S., Kay, L. J., et al. (2003). Development of the ASQoL: a quality of life instrument specific to ankylosing spondylitis. Annals of the Rheumatic Diseases, 62(1), 20\u201326.","journal-title":"Annals of the Rheumatic Diseases"},{"issue":"10","key":"2552_CR21","doi-asserted-by":"publisher","first-page":"1842","DOI":"10.1093\/rheumatology\/kev125","volume":"54","author":"A van Tubergen","year":"2015","unstructured":"van Tubergen, A., Black, P. M., & Coteur, G. (2015). A qualitative and psychometric analysis. Rheumatology (Oxford), 54(10), 1842\u20131851.","journal-title":"Rheumatology (Oxford)"},{"issue":"1","key":"2552_CR22","doi-asserted-by":"publisher","first-page":"25","DOI":"10.1136\/ard.2010.133645","volume":"70","author":"M Rudwaleit","year":"2011","unstructured":"Rudwaleit, M., van der Heijde, D., Landewe, R., Akkoc, N., Brandt, J., Chou, C. T., et al. (2011). The Assessment of SpondyloArthritis International Society classification criteria for peripheral spondyloarthritis and for spondyloarthritis in general. Annals of the Rheumatic Diseases, 70(1), 25\u201331.","journal-title":"Annals of the Rheumatic Diseases"},{"issue":"6","key":"2552_CR23","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., Listing, J., Akkoc, N., Brandt, J., et al. (2009). The development of Assessment of SpondyloArthritis international Society classification criteria for axial spondyloarthritis (part II): validation and final selection. Annals of the Rheumatic Diseases, 68(6), 777\u2013783.","journal-title":"Annals of the Rheumatic Diseases"},{"issue":"12","key":"2552_CR24","first-page":"2286","volume":"21","author":"S Garrett","year":"1994","unstructured":"Garrett, S., Jenkinson, T., Kennedy, L. G., Whitelock, H., Gaisford, P., & Calin, A. (1994). A new approach to defining disease status in ankylosing spondylitis: the Bath Ankylosing Spondylitis Disease Activity Index. Journal of Rheumatology, 21(12), 2286\u20132291.","journal-title":"Journal of Rheumatology"},{"issue":"8","key":"2552_CR25","doi-asserted-by":"publisher","first-page":"1087","DOI":"10.1007\/s11136-010-9677-6","volume":"19","author":"KE Lasch","year":"2010","unstructured":"Lasch, K. E., Marquis, P., Vigneux, M., Abetz, L., Arnould, B., Bayliss, M., et al. (2010). PRO development: rigorous qualitative research as the crucial foundation. Quality of Life Reserach, 19(8), 1087\u20131096.","journal-title":"Quality of Life Reserach"},{"issue":"8","key":"2552_CR26","doi-asserted-by":"publisher","first-page":"967","DOI":"10.1016\/j.jval.2011.06.014","volume":"14","author":"DL Patrick","year":"2011","unstructured":"Patrick, D. L., Burke, L. B., Gwaltney, C. J., Leidy, N. K., Martin, M. L., Molsen, E., et al. (2011). Content validity\u2013establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: part 1\u2013eliciting concepts for a new PRO instrument. Value in Health, 14(8), 967\u2013977.","journal-title":"Value in Health"},{"key":"2552_CR27","unstructured":"Friese, S. (2015). ATLAS.ti 7: User Guide and Reference Berlin. ATLAS.ti Scientific Software Development GmbH. Retrieved from https:\/\/atlasti.com\/wp-content\/uploads\/2014\/05\/QuickTour_a7_en_07.pdf."},{"key":"2552_CR28","doi-asserted-by":"publisher","first-page":"378","DOI":"10.1186\/s13075-015-0897-6","volume":"17","author":"JK Wallman","year":"2015","unstructured":"Wallman, J. K., Kapetanovic, M. C., Petersson, I. F., Geborek, P., & Kristensen, L. E. (2015). Comparison of non-radiographic axial spondyloarthritis and ankylosing spondylitis patients\u2013baseline characteristics, treatment adherence, and development of clinical variables during three years of anti-TNF therapy in clinical practice. Arthritis Research & Therapy, 17, 378.","journal-title":"Arthritis Research & Therapy"},{"issue":"2","key":"2552_CR29","doi-asserted-by":"publisher","first-page":"219","DOI":"10.1007\/s40744-017-0066-2","volume":"4","author":"M Garrido-Cumbrera","year":"2017","unstructured":"Garrido-Cumbrera, M., Hillmann, O., Mahapatra, R., Trigos, D., Zajc, P., Weiss, L., et al. (2017). Improving the management of psoriatic arthritis and axial spondyloarthritis: Roundtable discussions with healthcare professionals and patients. Rheumatology and Therapy, 4(2), 219\u2013231.","journal-title":"Rheumatology and Therapy"},{"issue":"2","key":"2552_CR30","doi-asserted-by":"publisher","first-page":"rky017","DOI":"10.1093\/rap\/rky017","volume":"2","author":"NA Pearson","year":"2018","unstructured":"Pearson, N. A., Packham, J. C., Tutton, E., Parsons, H., & Haywood, K. L. (2018). Assessing fatigue in adults with axial spondyloarthritis: A systematic review of the quality and acceptability of patient-reported outcome measures. Rheumatology Advances in Practice, 2(2), rky017.","journal-title":"Rheumatology Advances in Practice"},{"issue":"5","key":"2552_CR31","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., Cieza, A., Stucki, G., Khan, M. A., et al. (2015). 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. Annals of the Rheumatic Diseases, 74(5), 830\u2013835.","journal-title":"Annals of the Rheumatic Diseases"},{"issue":"9","key":"2552_CR32","doi-asserted-by":"publisher","first-page":"1498","DOI":"10.1093\/rheumatology\/kex174","volume":"56","author":"D van der Heijde","year":"2017","unstructured":"van der Heijde, D., Dougados, M., Landewe, R., Sieper, J., Maksymowych, W. P., Rudwaleit, M., et al. (2017). Sustained efficacy, safety and patient-reported outcomes of certolizumab pegol in axial spondyloarthritis: 4-year outcomes from RAPID-axSpA. Rheumatology (Oxford), 56(9), 1498\u20131509.","journal-title":"Rheumatology (Oxford)"},{"issue":"7","key":"2552_CR33","doi-asserted-by":"publisher","first-page":"1101","DOI":"10.1002\/art.40866","volume":"71","author":"A Deodhar","year":"2019","unstructured":"Deodhar, A., Gensler, L. S., Kay, J., Maksymowych, W. P., Haroon, N., Landewe, R., et al. (2019). A fifty-two-week, randomized, placebo-controlled trial of certolizumab pegol in nonradiographic axial spondyloarthritis. Arthritis & Rheumatology, 71(7), 1101\u20131111.","journal-title":"Arthritis & Rheumatology"}],"container-title":["Quality of Life Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11136-020-02552-z.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s11136-020-02552-z\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11136-020-02552-z.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,7,1]],"date-time":"2021-07-01T02:27:00Z","timestamp":1625106420000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s11136-020-02552-z"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,7,1]]},"references-count":33,"journal-issue":{"issue":"11","published-print":{"date-parts":[[2020,11]]}},"alternative-id":["2552"],"URL":"https:\/\/doi.org\/10.1007\/s11136-020-02552-z","relation":{},"ISSN":["0962-9343","1573-2649"],"issn-type":[{"value":"0962-9343","type":"print"},{"value":"1573-2649","type":"electronic"}],"subject":[],"published":{"date-parts":[[2020,7,1]]},"assertion":[{"value":"8 June 2020","order":1,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"1 July 2020","order":2,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Compliance with ethical standards"}},{"value":"MCH is supported by the UTHealth Center for Clinical and Translational Sciences Kl2 Program (1KL2-TR-003168-01). MLM was an employee of Health Research Associates at the time the study was conducted, which received funds to conduct the study. KH was an employee of UCB Pharma at the time the study was conducted. PG is an employee of UCB Pharma. JLS is an employee of UCB Pharma. JDR has consulted in the past year for UCB Pharma, Eli Lilly and Novartis, has received a research grant from the Janssen Pharmaceutical Division of Johnson & Johnson and is engaged in a clinical trial with Pfizer, Inc.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}},{"value":"This was a non-interventional study; ethical approval of the study was provided centrally by Quorum Institutional Review Board. Informed consent: Informed consent was obtained from all individual participants involved in the study.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval"}}]}}