{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,12]],"date-time":"2026-06-12T00:24:50Z","timestamp":1781223890442,"version":"3.54.1"},"reference-count":52,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2021,11,18]],"date-time":"2021-11-18T00:00:00Z","timestamp":1637193600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Med."],"abstract":"<jats:p><jats:bold>Objective:<\/jats:bold>To identify a spectrum of perspectives on functioning and health of patients with primary Sj\u00f6gren's syndrome (pSS) from the five European countries in order to reveal commonalities and insights in their experiences.<\/jats:p><jats:p><jats:bold>Methods:<\/jats:bold>A multicenter focus group study on the patients with pSS about their perspectives of functioning and health was performed. Focus groups were chaired by trained moderators based on an interview guide, audiotaped, and transcribed. After conducting a meaning condensation analysis of each focus group, we subsequently combined the extracted concepts from each country and mapped them to the International Classification of Functioning, Disability and Health (ICF).<\/jats:p><jats:p><jats:bold>Results:<\/jats:bold>Fifty-one patients with pSS participated in 12 focus groups. We identified a total of 82 concepts meaningful to people with pSS. Of these, 55 (67%) were mentioned by the patients with pSS in at least four of five countries and 36 (44%) emerged in all the five countries. Most concepts were assigned to the ICF components<jats:italic>activities and participation<\/jats:italic>(<jats:italic>n<\/jats:italic>= 25, 30%), followed by 22 concepts (27%) that were considered to be<jats:italic>not definable<\/jats:italic>or<jats:italic>not covered<\/jats:italic>by the ICF; 15 concepts (18%) linked to<jats:italic>body structures and functions<\/jats:italic>. Participants reported several limitations in the daily life due to a mismatch between the capabilities of the person, the demands of the environment and the requirements of the activities.<\/jats:p><jats:p><jats:bold>Conclusion:<\/jats:bold>Concepts that emerged in all the five non-English speaking countries may be used to guide the development and adaption of the patient-reported outcome measures and to enhance the provision of treatment options based on the aspects meaningful to patients with pSS in clinical routine.<\/jats:p>","DOI":"10.3389\/fmed.2021.770422","type":"journal-article","created":{"date-parts":[[2021,11,18]],"date-time":"2021-11-18T07:59:56Z","timestamp":1637222396000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":12,"title":["The Experiences of Functioning and Health of Patients With Primary Sj\u00f6gren's Syndrome: A Multicenter Qualitative European Study"],"prefix":"10.3389","volume":"8","author":[{"given":"Julia","family":"Unger","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Malin","family":"Mattsson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"R\u0103zvan G.","family":"Dr\u0103goi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claudiu","family":"Avram","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carina","family":"Bostr\u00f6m","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Frank","family":"Buttgereit","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angelika","family":"Lackner","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Torsten","family":"Witte","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bernd","family":"Raffeiner","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Peter","family":"Peichl","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Martina","family":"Durechova","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Josef","family":"Hermann","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tanja A.","family":"Stamm","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christian","family":"Dejaco","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1965","published-online":{"date-parts":[[2021,11,18]]},"reference":[{"key":"B1","doi-asserted-by":"publisher","first-page":"12","DOI":"10.1016\/j.clim.2018.04.004","article-title":"Epigenetic alterations in primary Sj\u00f6gren's syndrome\u2014an overview","volume":"196","author":"Imgenberg-Kreuz","year":"2018","journal-title":"Clin Immunol"},{"key":"B2","doi-asserted-by":"publisher","first-page":"321","DOI":"10.1016\/S0140-6736(05)66990-5","article-title":"Sjogren's syndrome","volume":"366","author":"Fox","year":"2005","journal-title":"Lancet."},{"key":"B3","first-page":"S14","article-title":"One year in review 2018: Sj\u00f6gren's syndrome","volume":"36","author":"Argyropoulou","year":"2018","journal-title":"Clin Exp Rheumatol."},{"key":"B4","doi-asserted-by":"publisher","first-page":"e9208","DOI":"10.1097\/MD.0000000000009208","article-title":"Health-related quality of life and psychological status of women with primary Sj\u00f6gren's syndrome","volume":"96","author":"Liu","year":"2017","journal-title":"Medicine."},{"key":"B5","doi-asserted-by":"publisher","first-page":"623","DOI":"10.1080\/14397595.2016.1249538","article-title":"Primary Sj\u00f6gren's syndrome impact on smell, taste, sexuality and quality of life in female patients: a systematic review and meta-analysis","volume":"27","author":"Al-Ezzi","year":"2017","journal-title":"Mod Rheumatol."},{"key":"B6","doi-asserted-by":"publisher","first-page":"554","DOI":"10.1136\/ard.61.6.554","article-title":"Classification criteria for Sj\u00f6gren's syndrome: a revised version of the Erupean criteria proposed by the American- European Consensus Group","volume":"61","author":"Vitali","year":"2002","journal-title":"Ann Rheum Dis."},{"key":"B7","doi-asserted-by":"publisher","first-page":"218","DOI":"10.1177\/0308022617745006","article-title":"Experience of sleep disruption in primary Sj\u00f6gren's syndrome: a focus group study","volume":"81","author":"Hackett","year":"2018","journal-title":"Br J Occup Ther"},{"key":"B8","doi-asserted-by":"publisher","first-page":"e00586","DOI":"10.1002\/brb3.586","article-title":"Cognition, depression, fatigue, and quality of life in primary Sj\u00f6gren's syndrome: correlations","volume":"6","author":"Ko\u00e7er","year":"2016","journal-title":"Brain Behav."},{"key":"B9","doi-asserted-by":"publisher","first-page":"1291","DOI":"10.1002\/acr.21956","article-title":"Pain severity and neuropathic pain symptoms in primary Sj\u00f6gren's syndrome: a comparison study of seropositive and seronegative Sj\u00f6gren's syndrome patients","volume":"65","author":"Segal","year":"2013","journal-title":"Arthritis Care Res."},{"key":"B10","doi-asserted-by":"publisher","first-page":"174","DOI":"10.1002\/msc.1128","article-title":"Patients' perceptions of their rheumatic condition: why moes it Matter and how can healthcare professionals influence or deal with these perceptions?","volume":"14","author":"Arat","year":"2016","journal-title":"Musculoskelet Care."},{"key":"B11","doi-asserted-by":"publisher","first-page":"380","DOI":"10.1111\/j.1756-185X.2012.01752.x","article-title":"Comparison of expectations of physicians and patients with rheumatoid arthritis for rheumatology clinic visits: a pilot, multicenter, international study","volume":"15","author":"Wen","year":"2012","journal-title":"Int J Rheum Dis."},{"key":"B12","doi-asserted-by":"publisher","first-page":"536","DOI":"10.7861\/clinmedicine.6-6-536","article-title":"Why illness perceptions matter","volume":"6","author":"Petrie","year":"2016","journal-title":"Cinical Med."},{"key":"B13","doi-asserted-by":"crossref","DOI":"10.1093\/oxfordhb\/9780195342819.013.0013","article-title":"Health and illness perceptions","volume-title":"The Oxford Handbook of Health Psychology.","author":"Benyamini","year":"2011"},{"key":"B14","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1186\/s42358-018-0036-6","article-title":"The effects of cultural background on patient-perceived impact of psoriatic arthritis-a qualitative study conducted in Brazil and France","volume":"58","author":"Palominos","year":"2018","journal-title":"Adv Rheumatol"},{"key":"B15","doi-asserted-by":"publisher","first-page":"234","DOI":"10.3109\/03009742.2013.846409","article-title":"Pain in primary Sj\u00f6gren's syndrome: the role of catastrophizing and negative illness perceptions","volume":"43","author":"Segal","year":"2014","journal-title":"Scand J Rheumatol"},{"key":"B16","doi-asserted-by":"publisher","first-page":"1671","DOI":"10.1007\/s00296-014-3008-0","article-title":"Illness perceptions and psychological distress associated with physical health-related quality of life in primary Sj\u00f6gren's syndrome compared to systemic lupus erythematosus and rheumatoid arthritis","volume":"34","author":"Kotsis","year":"2014","journal-title":"Rheumatol Int."},{"key":"B17","doi-asserted-by":"publisher","first-page":"342","DOI":"10.1002\/acr.20411","article-title":"Intentional and unintentional treatment nonadherence in patients with systemic lupus erythematosus","volume":"63","author":"Daleboudt","year":"2012","journal-title":"Arthritis Care Res."},{"key":"B18","doi-asserted-by":"publisher","first-page":"305","DOI":"10.1136\/ard.2008.089888","article-title":"A review of instruments to assess illness representations in patients with rheumatic diseases","volume":"68","author":"Maas","year":"2009","journal-title":"Ann Rheum Dis"},{"key":"B19","doi-asserted-by":"publisher","first-page":"28","DOI":"10.1186\/1471-2474-14-28","article-title":"Illness perceptions in patients receiving rheumatology rehabilitation: association with health and outcomes at 12 months","volume":"14","author":"L\u00f8chting","year":"2013","journal-title":"BMC Musculoskelet Disord"},{"key":"B20","doi-asserted-by":"publisher","first-page":"e0210466","DOI":"10.1371\/journal.pone.0210466","article-title":"Personality, depression and anxiety in primary Sjogren's syndrome\u2014association with sociodemographic factors and comorbidity","volume":"14","author":"Milic","year":"2019","journal-title":"PLoS ONE"},{"key":"B21","doi-asserted-by":"publisher","first-page":"2055102919844504","DOI":"10.1177\/2055102919844504","article-title":"Illness perception and high readmission health outcomes","volume":"6","author":"Sawyer","year":"2019","journal-title":"Heal Psychol Open"},{"key":"B22","unstructured":"2011"},{"key":"B23","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1007\/978-3-319-32851-5","volume-title":"Patient Reported Outcome Measures in Rheumatic Diseases","author":"El Miedany","year":"2016"},{"key":"B24","doi-asserted-by":"publisher","first-page":"e000443","DOI":"10.1136\/rmdopen-2017-000443","article-title":"Patient burden of Sj\u00f6gren's: a comprehensive literature review revealing the range and heterogeneity of measures used in assessments of severity","volume":"3","author":"Hammitt","year":"2017","journal-title":"RMD Open."},{"key":"B25","doi-asserted-by":"publisher","first-page":"174","DOI":"10.1016\/j.rehab.2019.01.006","article-title":"Cross-cultural adaptation of patient-reported outcome measures: a solution or a problem?","volume":"62","author":"Prakash","year":"2019","journal-title":"Ann Phys Rehabil Med"},{"key":"B26","doi-asserted-by":"publisher","first-page":"1177","DOI":"10.1002\/art.1780240911","article-title":"The nature of U","volume":"24","author":"Epstein","year":"1981","journal-title":"Arthritis Rheum"},{"key":"B27","doi-asserted-by":"publisher","first-page":"1037","DOI":"10.1016\/S0895-4356(98)00095-X","article-title":"Translation, adaptation, and validation of the SF-36 Health Survey for use in Japan","volume":"51","author":"Fukuhara","year":"1998","journal-title":"J Clin Epidemiol."},{"key":"B28","doi-asserted-by":"publisher","first-page":"1289","DOI":"10.1016\/S0277-9536(02)00503-8","article-title":"A systematic and critical review of the process of translation and adaptation of generic health-related quality of life measures in Africa Asia Eastern Europe the Middle East South America","volume":"57","author":"Bowden","year":"2003","journal-title":"Soc Sci Med"},{"key":"B29","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1136\/rmdopen-2015-000202","article-title":"Systematic review of patient-reported outcome measures (PROMs) for assessing disease activity in rheumatoid arthritis","volume":"2","author":"Hendrikx","year":"2016","journal-title":"RMD Open."},{"key":"B30","doi-asserted-by":"publisher","first-page":"1453","DOI":"10.1136\/ard.2008.096776","article-title":"Patient perspective of hand osteoarthritis in relation to concepts covered by instruments measuring functioning: a qualitative European multicentre study","volume":"68","author":"Stamm","year":"2009","journal-title":"Ann Rheum Dis."},{"key":"B31","doi-asserted-by":"publisher","DOI":"10.1080\/09546634.2017.1364688","article-title":"Using qualitative methods to understand factors contributing to patient satisfaction among dermatology patients: a systematic review","author":"Gibbons","year":"2017","journal-title":"J Dermatolog Treat"},{"key":"B32","doi-asserted-by":"publisher","first-page":"601","DOI":"10.1007\/s40744-020-00220-9","article-title":"An innovative online qualitative study to explore the symptom experience of patients with primary Sj\u00f6gren's Syndrome","volume":"7","author":"Gairy","year":"2020","journal-title":"Rheumatol Ther"},{"key":"B33","doi-asserted-by":"publisher","first-page":"e0172056","DOI":"10.1371\/journal.pone.0172056","article-title":"It's more than dryness and fatigue: the patient perspective on health-related quality of life in primary Sj\u00f6gren's Syndrome\u2014a qualitative study","volume":"12","author":"Lackner","year":"2017","journal-title":"PLoS ONE."},{"key":"B34","doi-asserted-by":"publisher","first-page":"e0187272","DOI":"10.1371\/journal.pone.0187272","article-title":"A qualitative exploration of physical, mental and ocular fatigue in patients with primary Sj\u00f6gren's Syndrome","volume":"12","author":"Stack","year":"2017","journal-title":"PLoS ONE."},{"key":"B35","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1177\/0308022617724785","article-title":"\u201c\u2018You look fine' they'll say\u201d: a qualitative focus group study exploring the symptoms of fatigue, sleep disturbances and pain in primary Sjogren's syndrome and their impact on everyday life","volume":"80","author":"Hackett","year":"2017","journal-title":"Br J Occup Ther"},{"key":"B36","doi-asserted-by":"publisher","first-page":"7","DOI":"10.1186\/s12903-016-0165-4","article-title":"The lived experience of Sj\u00f6gren's Syndrome","volume":"16","author":"Ngo","year":"2016","journal-title":"BMC Oral Health"},{"key":"B37","volume-title":"Focus Groups: A Practical Guide for Applied research","author":"Krueger","year":"2014"},{"key":"B38","doi-asserted-by":"publisher","first-page":"349","DOI":"10.1093\/intqhc\/mzm042","article-title":"Consolidated criteria for reporting qualitative research (COREQ): a32-item checklist for interviews and focus groups","volume":"19","author":"Tong","year":"2007","journal-title":"Int J Qual Heal Care."},{"key":"B39","volume-title":"Sj\u00f6gren's Syndrome","author":"Wan-Fai","year":"2016"},{"key":"B40","doi-asserted-by":"publisher","first-page":"1004","DOI":"10.1136\/annrheumdis-2013-204798","article-title":"The patient perspective on remission in rheumatoid arthritis: \u201cYou've got limits, but you're back to being you again\u201d","volume":"74","author":"van Tuyl","year":"2015","journal-title":"Ann Rheum Dis."},{"key":"B41","volume-title":"Interviews\u2014An Introduction to Qualitative Research Interviewing","author":"Kvale","year":"1996"},{"key":"B42","unstructured":"2019"},{"key":"B43","volume-title":"How to Use the ICF. A Practical Manual for Using the International Classification of Functioning, Disability and Health (ICF)","year":"2013"},{"key":"B44","first-page":"1","article-title":"The measurement of functioning using the international classification of functioning, disability and health: comparing qualifier ratings with existing health status instruments","volume":"8288","author":"Prodinger","year":"2017","journal-title":"Disabil Rehabil"},{"key":"B45","doi-asserted-by":"publisher","first-page":"574","DOI":"10.3109\/09638288.2016.1145258","article-title":"Refinements of the ICF linking rules to strengthen their potential for establishing comparability of health information","volume":"41","author":"Cieza","year":"2019","journal-title":"Disabil Rehabil."},{"key":"B46","doi-asserted-by":"publisher","first-page":"1210","DOI":"10.1002\/acr.24256","article-title":"Illness experiences of chilean women with sj\u00f6gren's syndrome from the patient perspective","volume":"73","author":"Herrera","year":"2020","journal-title":"Arthritis Care Res"},{"key":"B47","doi-asserted-by":"publisher","first-page":"233","DOI":"10.1002\/msc.1134","article-title":"Illness experiences in women with oral dryness as a result of Sj\u00f6gren's Syndrome: the patient point of view","volume":"14","author":"Rojas-Alcayaga","year":"2016","journal-title":"Musculoskeletal Care."},{"key":"B48","doi-asserted-by":"publisher","first-page":"16","DOI":"10.3389\/fmed.2020.00016","article-title":"The supply of rheumatology specialist care in real life. Results of a nationwide survey and analysis of supply and needs","volume":"7","author":"Puchner","year":"2020","journal-title":"Front Med"},{"key":"B49","doi-asserted-by":"publisher","first-page":"1874","DOI":"10.1002\/acr.22894","article-title":"Rheumatology workforce planning in western countries: a systematic literature review","volume":"68","author":"Dejaco","year":"2016","journal-title":"Arthritis Care Res"},{"key":"B50","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1186\/s13075-018-1732-7","article-title":"I do not want to suppress the natural process of inflammation: new insights on factors associated with non-adherence in rheumatoid arthritis","volume":"20","author":"Ritschl","year":"2018","journal-title":"Arthritis Res Ther."},{"key":"B51","doi-asserted-by":"publisher","first-page":"118","DOI":"10.1007\/s41970-018-0050-5","article-title":"Experiences of people with Primary Sj\u00f6gren's Syndrome in daily life: a multicentre qualitative European study. Poster: Jahrestagung der \u00d6sterreichischen Gesellschaft f\u00fcr Rheumatologie & Rehabilitation 29. November-1. Dezember 2018, Tech Gate Wien","volume":"25","author":"Unger","year":"2018","journal-title":"J Miner Muskuloskelet Erkrankungen"},{"key":"B52","doi-asserted-by":"publisher","first-page":"140","DOI":"10.1136\/annrheumdis-2018-eular.4699","article-title":"OPO181 patient perspectives of people with primary Sj\u00f6gren's Syndrome: a multicentre qualitative European study","author":"Unger","year":"2018","journal-title":"Ann Rheum Dis"}],"container-title":["Frontiers in Medicine"],"original-title":[],"link":[{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fmed.2021.770422\/full","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,11,12]],"date-time":"2023-11-12T20:37:51Z","timestamp":1699821471000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fmed.2021.770422\/full"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,11,18]]},"references-count":52,"alternative-id":["10.3389\/fmed.2021.770422"],"URL":"https:\/\/doi.org\/10.3389\/fmed.2021.770422","relation":{},"ISSN":["2296-858X"],"issn-type":[{"value":"2296-858X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,11,18]]},"article-number":"770422"}}