{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,8,21]],"date-time":"2025-08-21T18:48:47Z","timestamp":1755802127895,"version":"3.44.0"},"reference-count":50,"publisher":"Springer Science and Business Media LLC","issue":"8","license":[{"start":{"date-parts":[[2025,8,8]],"date-time":"2025-08-08T00:00:00Z","timestamp":1754611200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.springernature.com\/gp\/researchers\/text-and-data-mining"},{"start":{"date-parts":[[2025,8,8]],"date-time":"2025-08-08T00:00:00Z","timestamp":1754611200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/www.springernature.com\/gp\/researchers\/text-and-data-mining"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Rheumatol Int"],"DOI":"10.1007\/s00296-025-05943-y","type":"journal-article","created":{"date-parts":[[2025,8,8]],"date-time":"2025-08-08T09:26:15Z","timestamp":1754645175000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["The advocacy effect: a grounded theory study on the inclusion of caregivers or nearest support persons in research to better understand patient outcomes in rheumatoid arthritis"],"prefix":"10.1007","volume":"45","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4659-5508","authenticated-orcid":false,"given":"Jos\u00e9 B.","family":"Negr\u00f3n","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5165-8393","authenticated-orcid":false,"given":"Maria A.","family":"Lopez-Olivo","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4401-2551","authenticated-orcid":false,"given":"Loreto","family":"Carmona","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6600-0631","authenticated-orcid":false,"given":"Robin","family":"Christensen","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6727-1273","authenticated-orcid":false,"given":"Francesca","family":"Ingegnoli","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3785-4662","authenticated-orcid":false,"given":"Natalia V.","family":"Zamora","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6517-6344","authenticated-orcid":false,"given":"Laura","family":"Gonzalez-Lopez","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4978-4072","authenticated-orcid":false,"given":"Vibeke","family":"Strand","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5869-5157","authenticated-orcid":false,"given":"Niti","family":"Goel","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tiffany","family":"Westrich-Robertson","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5381-5797","authenticated-orcid":false,"given":"Maria E.","family":"Suarez-Almazor","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2025,8,8]]},"reference":[{"issue":"1","key":"5943_CR1","doi-asserted-by":"publisher","first-page":"24375","DOI":"10.1038\/s41598-025-08540-y","volume":"15","author":"N Abed","year":"2025","unstructured":"Abed N, Knezevic B, Sousa P, Tella S, Srulovici E, Strametz R, Mira JJ (2025) Defining informal caregivers by their characteristics safety roles and training needs in Europe. Sci Rep 15(1):24375. https:\/\/doi.org\/10.1038\/s41598-025-08540-y","journal-title":"Sci Rep"},{"key":"5943_CR2","doi-asserted-by":"publisher","unstructured":"Cattaneo A, Vitali A, Regazzoni D, Rizzi C (2025) The burden of informal family caregiving in europe, 2000\u20132050: a microsimulation modelling study. Lancet Reg Health\u2013Europe 53. https:\/\/doi.org\/10.1016\/j.lanepe.2025.101295","DOI":"10.1016\/j.lanepe.2025.101295"},{"key":"5943_CR3","doi-asserted-by":"publisher","first-page":"111784","DOI":"10.1016\/j.jclinepi.2025.111784","volume":"183","author":"JR Silva","year":"2025","unstructured":"Silva JR, Wu R, Scholes-Robertson N, Hughes A, van Zwieten A, Wong G, Sluiter A, Viecelli AK, Craig JC, McDonald S (2025) Reporting the involvement of patients and caregivers in identifying and designing healthcare interventions: the IDEAS framework. J Clin Epidemiol 183:111784. https:\/\/doi.org\/10.1016\/j.jclinepi.2025.111784","journal-title":"J Clin Epidemiol"},{"key":"5943_CR4","unstructured":"Biegel DE, Sales E, Schulz R (1991) Family caregiving in chronic illness: Alzheimer\u2019s disease, cancer, heart disease, mental illness, and stroke. Sage Publications, Inc."},{"issue":"1","key":"5943_CR5","doi-asserted-by":"publisher","first-page":"27","DOI":"10.1111\/j.1547-5069.2003.00027.x","volume":"35","author":"CK Hunt","year":"2003","unstructured":"Hunt CK (2003) Concepts in caregiver research. J Nurs Scholarsh 35(1):27\u201332. https:\/\/doi.org\/10.1111\/j.1547-5069.2003.00027.x","journal-title":"J Nurs Scholarsh"},{"issue":"18","key":"5943_CR6","doi-asserted-by":"publisher","first-page":"1955","DOI":"10.1200\/JCO.21.00402","volume":"39","author":"AJ Applebaum","year":"2021","unstructured":"Applebaum AJ, Kent EE, Lichtenthal WG (2021) Documentation of caregivers as a standard of care. J Clin Oncol 39(18):1955. https:\/\/doi.org\/10.1200\/JCO.21.00402","journal-title":"J Clin Oncol"},{"issue":"4","key":"5943_CR7","doi-asserted-by":"publisher","first-page":"570","DOI":"10.1002\/art.20528","volume":"51","author":"WB Brouwer","year":"2004","unstructured":"Brouwer WB, van Exel NJA, Van De Berg B, Dinant HJ, Koopmanschap MA, van den Bos GA (2004) Burden of caregiving: evidence of objective burden, subjective burden, and quality of life impacts on informal caregivers of patients with rheumatoid arthritis. Arthritis Care Res 51(4):570\u2013577. https:\/\/doi.org\/10.1002\/art.20528","journal-title":"Arthritis Care Res"},{"issue":"4","key":"5943_CR8","doi-asserted-by":"publisher","first-page":"24","DOI":"10.3928\/0098-9134-19860401-07","volume":"12","author":"SP Hirst","year":"2013","unstructured":"Hirst SP, Metcalf BJ (2013) Learning needs of caregivers. J Gerontol Nurs 12(4):24\u201328. https:\/\/doi.org\/10.3928\/0098-9134-19860401-07","journal-title":"J Gerontol Nurs"},{"issue":"6","key":"5943_CR9","doi-asserted-by":"publisher","first-page":"683","DOI":"10.1191\/0269215504cr743oa","volume":"18","author":"NJ van Exel","year":"2004","unstructured":"van Exel NJ, Brouwer WB, Van den Berg B, Koopmanschap M, van den Bos GA (2004) What really matters: an inquiry into the relative importance of dimensions of informal caregiver burden. Clin Rehabil 18(6):683\u2013693. https:\/\/doi.org\/10.1191\/0269215504cr743oa","journal-title":"Clin Rehabil"},{"issue":"1","key":"5943_CR10","doi-asserted-by":"publisher","first-page":"867","DOI":"10.1186\/s12889-025-22074-y","volume":"25","author":"ST Malki","year":"2025","unstructured":"Malki ST, Johansson P, Andersson G, Andr\u00e9asson F, Mourad G (2025) Caregiver burden, psychological well-being, and support needs among Swedish informal caregivers. BMC Public Health 25(1):867. https:\/\/doi.org\/10.1186\/s12889-025-22074-y","journal-title":"BMC Public Health"},{"issue":"10","key":"5943_CR11","doi-asserted-by":"publisher","first-page":"1002","DOI":"10.3390\/healthcare12101002","volume":"12","author":"JY Choi","year":"2024","unstructured":"Choi JY, Lee SH, Yu S (2024) Exploring factors influencing caregiver burden: A systematic review of family caregivers of older adults with chronic illness in local communities. Healthcare 12(10):1002. https:\/\/doi.org\/10.3390\/healthcare12101002","journal-title":"Healthcare"},{"key":"5943_CR12","doi-asserted-by":"publisher","DOI":"10.1007\/s00296-025-05925-0","author":"D Ferahman","year":"2025","unstructured":"Ferahman D, Bucak \u00d6F, Arik S, \u015eahbaz T (2025) The hidden burden of fibromyalgia: exploring work impairment and quality of life in caregivers. Clin Exp Rheumatol. https:\/\/doi.org\/10.1007\/s00296-025-05925-0","journal-title":"Clin Exp Rheumatol"},{"issue":"6","key":"5943_CR13","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1007\/s00520-025-09505-7","volume":"33","author":"EC Blackstone","year":"2025","unstructured":"Blackstone EC, Mazanec SR, Daly BJ, Dorth JA, Montero AJ, Aulisio MP, Brandt PT, Foley H, Loue S (2025) Stakeholder perspectives on the role of caregivers in cancer clinical trial decision-making: results of a qualitative study. Support Care Cancer 33(6):1\u201312. https:\/\/doi.org\/10.1007\/s00520-025-09505-7","journal-title":"Support Care Cancer"},{"issue":"1","key":"5943_CR14","doi-asserted-by":"publisher","first-page":"e13940","DOI":"10.1111\/hex.13940","volume":"27","author":"B Bowness","year":"2024","unstructured":"Bowness B, Henderson C, Akhter Khan SC, Akiba M, Lawrence V (2024) Participatory research with carers: A systematic review and narrative synthesis. Health Expect 27(1):e13940. https:\/\/doi.org\/10.1111\/hex.13940","journal-title":"Health Expect"},{"issue":"7","key":"5943_CR15","doi-asserted-by":"publisher","first-page":"1784","DOI":"10.1111\/jgs.17340","volume":"69","author":"L Frank","year":"2021","unstructured":"Frank L, Jennings LA, Petersen RC, Majid T, Gilmore-Bykovskyi A, Schicker L, Karlawish J (2021) Participation of persons with dementia and their caregivers in research. J Am Geriatr Soc 69(7):1784\u20131792. https:\/\/doi.org\/10.1111\/jgs.17340","journal-title":"J Am Geriatr Soc"},{"issue":"12","key":"5943_CR16","doi-asserted-by":"publisher","first-page":"e1790","DOI":"10.1093\/oncolo\/oyae247","volume":"29","author":"Y Wang","year":"2024","unstructured":"Wang Y, Nightingale CL, Braun-Inglis C, Sterba K, Weaver KE, Wood E, Kadambi S, Gada U, Montes A, Magnuson A (2024) Recruitment of informal caregivers into community oncology research studies: results from the 2022 landscape assessment. Oncologist 29(12):e1790\u2013e3. https:\/\/doi.org\/10.1093\/oncolo\/oyae247","journal-title":"Oncologist"},{"issue":"2","key":"5943_CR17","doi-asserted-by":"publisher","first-page":"84","DOI":"10.1080\/13651501.2018.1492728","volume":"23","author":"I Coskun Benlidayi","year":"2019","unstructured":"Coskun Benlidayi I, Gokcen N, Sariyildiz A, Sarpel T (2019) They have got the blues: patient\u2019s mood-and disease activity-related psychological burden of rheumatoid arthritis on caregivers. Int J Psychiatry Clin Pract 23(2):84\u201389. https:\/\/doi.org\/10.1080\/13651501.2018.1492728","journal-title":"Int J Psychiatry Clin Pract"},{"issue":"10","key":"5943_CR18","doi-asserted-by":"publisher","first-page":"1226","DOI":"10.1093\/rheumatology\/keg366","volume":"42","author":"C Jacobi","year":"2003","unstructured":"Jacobi C, van den Berg B, Boshuizen H, Rupp I, Dinant H, Van den Bos G (2003) Dimension-specific burden of caregiving among partners of rheumatoid arthritis patients. Rheumatology 42(10):1226\u20131233. https:\/\/doi.org\/10.1093\/rheumatology\/keg366","journal-title":"Rheumatology"},{"issue":"4","key":"5943_CR19","doi-asserted-by":"publisher","first-page":"794","DOI":"10.1093\/schbul\/sby130","volume":"45","author":"E Mittendorfer-Rutz","year":"2018","unstructured":"Mittendorfer-Rutz E, Rahman S, Tanskanen A, Majak M, Meht\u00e4l\u00e4 J, Hoti F, Jedenius E, Enkusson D, Leval A, Sermon J (2018) Burden for parents of patients with Schizophrenia\u2014A nationwide comparative study of parents of offspring with rheumatoid arthritis, multiple sclerosis, epilepsy, and healthy controls. Schizophr Bull 45(4):794\u2013803. https:\/\/doi.org\/10.1093\/schbul\/sby130","journal-title":"Schizophr Bull"},{"key":"5943_CR20","doi-asserted-by":"publisher","first-page":"1443529","DOI":"10.3389\/fped.2025.1443529","volume":"13","author":"H Silim","year":"2025","unstructured":"Silim H, Wamithi S, Riang\u2019a RM, Migowa A (2025) Experiences among parents caring for children with juvenile idiopathic arthritis at a tertiary referral hospital in Kenya. Front Pead 13:1443529. https:\/\/doi.org\/10.3389\/fped.2025.1443529","journal-title":"Front Pead"},{"issue":"1","key":"5943_CR21","doi-asserted-by":"publisher","first-page":"7","DOI":"10.1186\/s12969-025-01063-w","volume":"23","author":"KG Putri","year":"2025","unstructured":"Putri KG, Sampath S, Richardson CL, McCloskey A, Rathbone AP (2025) A qualitative study exploring experiences of treatment in paediatric rheumatology-children\u2019s, young people\u2019s, parents\u2019 and carers\u2019 perspectives. Pediatr Rheumatol 23(1):7. https:\/\/doi.org\/10.1186\/s12969-025-01063-w","journal-title":"Pediatr Rheumatol"},{"issue":"2","key":"5943_CR22","doi-asserted-by":"publisher","first-page":"187","DOI":"10.1177\/20494637209251","volume":"15","author":"T Smith","year":"2021","unstructured":"Smith T, Fletcher J, Lister S (2021) Lived experiences of informal caregivers of people with chronic musculoskeletal pain: a systematic review and meta-ethnography. Br J Pain 15(2):187\u2013198. https:\/\/doi.org\/10.1177\/20494637209251","journal-title":"Br J Pain"},{"issue":"10","key":"5943_CR23","doi-asserted-by":"publisher","first-page":"1410","DOI":"10.1002\/acr.24032","volume":"72","author":"A Kelly","year":"2020","unstructured":"Kelly A, Tymms K, de Wit M, Bartlett SJ, Cross M, Dawson T, De Vera M, Evans V, Gill M, Hassett G (2020) Patient and caregiver priorities for medication adherence in gout, osteoporosis, and rheumatoid arthritis: nominal group technique. Arthritis Care Res 72(10):1410\u20131419. https:\/\/doi.org\/10.1002\/acr.24032","journal-title":"Arthritis Care Res"},{"issue":"sup2","key":"5943_CR24","doi-asserted-by":"publisher","first-page":"5","DOI":"10.1080\/03007995.2021.1992371","volume":"37","author":"I Galetti","year":"2021","unstructured":"Galetti I, Nunzio Sd, Brogelli L, Mirisola V, Garbagnati C (2021) How do systemic sclerosis manifestations influence patients\u2019 lives? Results from a survey on patients and caregivers. Curr Med Res Opin 37(sup2):5\u201315. https:\/\/doi.org\/10.1080\/03007995.2021.1992371","journal-title":"Curr Med Res Opin"},{"key":"5943_CR25","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1186\/s12969-021-00540-2","volume":"19","author":"A Verwoerd","year":"2021","unstructured":"Verwoerd A, Armbrust W, Cowan K, van den Berg L, de Boer J, Bookelman S, Britstra M, Cappon J, Certan M, Dedding C (2021) Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis. Pediatr Rheumatol 19:1\u201310. https:\/\/doi.org\/10.1186\/s12969-021-00540-2","journal-title":"Pediatr Rheumatol"},{"issue":"3","key":"5943_CR26","doi-asserted-by":"publisher","first-page":"312","DOI":"10.1136\/ard-2022-223561","volume":"82","author":"CG Schoemaker","year":"2023","unstructured":"Schoemaker CG, Richards DP, De Wit M (2023) Matching researchers\u2019 needs and patients\u2019 contributions: practical tips for meaningful patient engagement from the field of rheumatology. Ann Rheum Dis 82(3):312\u2013315. https:\/\/doi.org\/10.1136\/ard-2022-223561","journal-title":"Ann Rheum Dis"},{"issue":"10","key":"5943_CR27","doi-asserted-by":"publisher","first-page":"1849","DOI":"10.1007\/s00296-024-05639-9","volume":"44","author":"CW Hansen","year":"2024","unstructured":"Hansen CW, N\u00f8rgaard MW, de Thurah A, Midtgaard J, Cromhout PF, Esbensen BA (2024) Significant others in inflammatory arthritis: roles, influences, and challenges\u2014a scoping review. Rheumatol Int 44(10):1849\u20131859. https:\/\/doi.org\/10.1007\/s00296-024-05639-9","journal-title":"Rheumatol Int"},{"key":"5943_CR28","doi-asserted-by":"crossref","unstructured":"Fuller A, Cai K, Diaz-Torne C, Filippou G, Pascart T, Hensey O, Grossberg D, Christensen R, Shea B, Singh JA (2021) Outcome domains reported by patients, caregivers, healthcare professionals and stakeholders for calcium pyrophosphate deposition (CPPD): a content analysis based on semi-structured qualitative interviews from the OMERACT CPPD working group. Seminars in arthritis and rheumatism;: Elsevier; 2021. pp. 650-4","DOI":"10.1016\/j.semarthrit.2020.09.021"},{"issue":"4","key":"5943_CR29","doi-asserted-by":"publisher","first-page":"303","DOI":"10.1111\/j.1365-2702.1997.tb00319.x","volume":"6","author":"M Mallik","year":"1997","unstructured":"Mallik M (1997) Advocacy in nursing\u2013perceptions of practising nurses. J Clin Nurs 6(4):303\u2013313. https:\/\/doi.org\/10.1111\/j.1365-2702.1997.tb00319.x","journal-title":"J Clin Nurs"},{"issue":"3","key":"5943_CR30","doi-asserted-by":"publisher","first-page":"282","DOI":"10.1111\/j.1471-6712.2006.00406.x","volume":"20","author":"H Vaartio","year":"2006","unstructured":"Vaartio H, Leino-Kilpi H, Salanter\u00e4 S, Suominen T (2006) Nursing advocacy: how is it defined by patients and nurses, what does it involve and how is it experienced? Scand J Caring Sci 20(3):282\u2013292. https:\/\/doi.org\/10.1111\/j.1471-6712.2006.00406.x","journal-title":"Scand J Caring Sci"},{"issue":"7","key":"5943_CR31","doi-asserted-by":"publisher","first-page":"440","DOI":"10.1016\/S2352-4642(25)00141-5","volume":"9","author":"A Agulnik","year":"2025","unstructured":"Agulnik A (2025) Listen to the parents: caregiver concern and development of critical illness. Lancet Child Adolesc Health 9(7):440\u2013441. https:\/\/doi.org\/10.1016\/S2352-4642(25)00141-5","journal-title":"Lancet Child Adolesc Health"},{"key":"5943_CR32","doi-asserted-by":"publisher","unstructured":"Negr\u00f3n JB, Lopez-Olivo MA, Carmona L, Christensen R, Ingegnoli F, Zamora NV, Gamez-Nava JI, Gonzalez-Lopez L, Strand V, Goel N (2022) Patient perspectives on Long-Term outcomes in rheumatoid arthritis. A qualitative study from the OMERACT patient outcomes in longitudinal studies working group. Semin Arthritis Rheum 152028. https:\/\/doi.org\/10.1016\/j.semarthrit.2022.152028","DOI":"10.1016\/j.semarthrit.2022.152028"},{"key":"5943_CR33","doi-asserted-by":"publisher","first-page":"152343","DOI":"10.1016\/j.semarthrit.2023.152343","volume":"64","author":"D Benavent","year":"2024","unstructured":"Benavent D, Carmona L, Lopez-Olivo MA, Hill CL, Westrich-Robertson T, Goel N, Strand V, Shea B, Grosskleg S, Leong A (2024) Patient outcomes in longitudinal observational studies (POLOS) of rheumatoid arthritis: determining the OMERACT core domain set. Semin Arthritis Rheum 64:152343. https:\/\/doi.org\/10.1016\/j.semarthrit.2023.152343","journal-title":"Semin Arthritis Rheum"},{"issue":"5","key":"5943_CR34","doi-asserted-by":"publisher","first-page":"649","DOI":"10.1002\/acr.24163","volume":"73","author":"MA Lopez-Olivo","year":"2021","unstructured":"Lopez-Olivo MA, Zogala RJ, des Bordes J, Zamora NV, Christensen R, Rai D, Goel N, Carmona L, Pratt G, Strand V (2021) Outcomes reported in prospective long\u2010term observational studies and registries of patients with rheumatoid arthritis worldwide: an outcome measures in rheumatology systematic review. Arthritis Care Res 73(5):649\u2013657. https:\/\/doi.org\/10.1002\/acr.24163","journal-title":"Arthritis Care Res"},{"issue":"5","key":"5943_CR35","doi-asserted-by":"publisher","first-page":"1113","DOI":"10.1016\/j.semarthrit.2021.08.003","volume":"51","author":"S Bruera","year":"2021","unstructured":"Bruera S, Carmona L, Lopez-Olivo MA, Westrich-Robertson T, March L, Negron JB, Christensen R, Strand V, Ingegnoli F, Goel N (2021) Development of a patient-centered core domain set for prospective observational longitudinal outcome studies in rheumatoid arthritis: an OMERACT initiative. Semin Arthritis Rheum 51(5):1113\u20131116. https:\/\/doi.org\/10.1016\/j.semarthrit.2021.08.003","journal-title":"Semin Arthritis Rheum"},{"issue":"9","key":"5943_CR36","doi-asserted-by":"publisher","first-page":"1164","DOI":"10.3899\/jrheum.181076","volume":"46","author":"MA Lopez-Olivo","year":"2019","unstructured":"Lopez-Olivo MA, Negr\u00f3n JB, Zogala RJ, Carmona L, Criner K, Goel N, Gonzalez-Lopez L, Ingegnoli F, Leong A, March L (2019) Core outcome sets specifically for longterm observational studies: OMERACT special interest group update in rheumatoid arthritis. J Rhuematol 46(9):1164\u20131167. https:\/\/doi.org\/10.3899\/jrheum.181076","journal-title":"J Rhuematol"},{"issue":"12","key":"5943_CR37","doi-asserted-by":"publisher","first-page":"1894","DOI":"10.3899\/jrheum.161108","volume":"44","author":"NV Zamora","year":"2017","unstructured":"Zamora NV, Christensen R, Goel N, Klokker L, Lopez-Olivo MA, Kristensen LE, Carmona L, Strand V, Curtis JR, Suarez-Almazor ME (2017) Critical outcomes in longitudinal observational studies and registries in patients with rheumatoid arthritis: an OMERACT special interest group report. J Rhuematol 44(12):1894\u20131898. https:\/\/doi.org\/10.3899\/jrheum.161108","journal-title":"J Rhuematol"},{"issue":"7","key":"5943_CR38","doi-asserted-by":"publisher","first-page":"659","DOI":"10.1177\/135910532412376","volume":"29","author":"D Lamb","year":"2024","unstructured":"Lamb D, Russell A, Morant N, Stevenson F (2024) The challenges of open data sharing for qualitative researchers. J Health Psychol 29(7):659\u2013664. https:\/\/doi.org\/10.1177\/135910532412376","journal-title":"J Health Psychol"},{"key":"5943_CR39","doi-asserted-by":"publisher","unstructured":"Kay J, Upchurch KS (2012) ACR\/EULAR 2010 rheumatoid arthritis classification criteria. Rheumatology 51 (suppl_6):vi5-vi9. https:\/\/doi.org\/10.1093\/rheumatology\/kes279","DOI":"10.1093\/rheumatology\/kes279"},{"key":"5943_CR40","unstructured":"Birks M, Mills J (2023) Grounded theory: A practical guide, 3 edn. Sage"},{"key":"5943_CR41","doi-asserted-by":"crossref","unstructured":"Resch K, Enzenhofer E (2018) Collecting data in other languages\u2014strategies for cross-language research in multilingual societies. In: Flick U, ed. The SAGE Handbook of Qualitative Data Collection;: 131\u2013\u200946","DOI":"10.4135\/9781526416070.n9"},{"key":"5943_CR42","doi-asserted-by":"crossref","unstructured":"Flick U (2018) Managing quality in qualitative research,2 Edn. Sage","DOI":"10.4135\/9781529716641"},{"key":"5943_CR43","doi-asserted-by":"publisher","unstructured":"Glaser BG, Strauss AL (2017) Discovery of grounded theory: strategies for qualitative research. Routledge. https:\/\/doi.org\/10.4324\/9780203793206","DOI":"10.4324\/9780203793206"},{"key":"5943_CR44","unstructured":"Salda\u00f1a J (2021) The coding manual for qualitative researchers, 4 edn. Sage"},{"key":"5943_CR45","doi-asserted-by":"publisher","unstructured":"Bahlas S, Fathaldin O, Janoudi N, Almoallim H, Ibrahim A, Algohary S (2015) Do rheumatoid arthritis patients rate their health status different than their caregivers?? Anti-Inflammatory & Anti-Allergy agents in medicinal chemistry 14. 3199\u2013203. https:\/\/doi.org\/10.2174\/1871523015666160111151532","DOI":"10.2174\/1871523015666160111151532"},{"issue":"1","key":"5943_CR46","doi-asserted-by":"publisher","first-page":"137","DOI":"10.1111\/hex.12982","volume":"23","author":"M Brignon","year":"2020","unstructured":"Brignon M, Vioulac C, Boujut E, Delannoy C, Beauvais C, Kivits J, Poivret D, Le Giraudet JS, Untas A, Rat AC (2020) Patients and relatives coping with inflammatory arthritis: care teamwork. Health Expect 23(1):137\u2013147. https:\/\/doi.org\/10.1111\/hex.12982","journal-title":"Health Expect"},{"issue":"7","key":"5943_CR47","doi-asserted-by":"publisher","first-page":"898","DOI":"10.1111\/1756-185X.13893","volume":"23","author":"K Pile","year":"2020","unstructured":"Pile K, Norager R, Skillecorn M, Gibson KA, Elderton S, Favorito W, Li Z, Mu R, Nakahara H, Kishimoto M (2020) Elevating the role of carers in rheumatoid arthritis management in the Asia-Pacific region. Int J Rheum Dis 23(7):898\u2013910. https:\/\/doi.org\/10.1111\/1756-185X.13893","journal-title":"Int J Rheum Dis"},{"key":"5943_CR48","doi-asserted-by":"publisher","unstructured":"Bjork I, Weissler H, Herath T, Patterson M, Patel R, Geraghty P, Menard M, Corriere M, Minc S, Armstrong DG (2025) Engaging patients and their caregivers in research to improve Evidence-Based, Patient-Centered and equitable care for chronic limb threatening ischemia and advanced peripheral artery disease. https:\/\/doi.org\/10.1016\/j.jvsvi.2025.100222. JVS-Vascular Insights","DOI":"10.1016\/j.jvsvi.2025.100222"},{"issue":"3","key":"5943_CR49","doi-asserted-by":"publisher","first-page":"189","DOI":"10.1007\/s00415-025-12912-9","volume":"272","author":"S Rutten","year":"2025","unstructured":"Rutten S, Bradley-Westguard A, Nicholson TR, Pick S (2025) Outcome measurement in functional neurological disorder: A qualitative study on the views of patients, caregivers and healthcare professionals. J Neurol 272(3):189. https:\/\/doi.org\/10.1007\/s00415-025-12912-9","journal-title":"J Neurol"},{"issue":"1","key":"5943_CR50","doi-asserted-by":"publisher","first-page":"137","DOI":"10.1080\/2159676X.2017.1393221","volume":"10","author":"B Smith","year":"2018","unstructured":"Smith B (2018) Generalizability in qualitative research: misunderstandings, opportunities and recommendations for the sport and exercise sciences. Qualitative research in sport. Exerc Health 10(1):137\u2013149. https:\/\/doi.org\/10.1080\/2159676X.2017.1393221","journal-title":"Exerc Health"}],"container-title":["Rheumatology International"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00296-025-05943-y.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s00296-025-05943-y\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00296-025-05943-y.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,8,21]],"date-time":"2025-08-21T06:53:56Z","timestamp":1755759236000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s00296-025-05943-y"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,8,8]]},"references-count":50,"journal-issue":{"issue":"8","published-online":{"date-parts":[[2025,8]]}},"alternative-id":["5943"],"URL":"https:\/\/doi.org\/10.1007\/s00296-025-05943-y","relation":{},"ISSN":["1437-160X"],"issn-type":[{"type":"electronic","value":"1437-160X"}],"subject":[],"published":{"date-parts":[[2025,8,8]]},"assertion":[{"value":"14 May 2025","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"23 July 2025","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"8 August 2025","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"No funding was received for the completion of this research study. However, JBN has received personal grants from the European Alliance of Associations for Rheumatology (EULAR) for activities unrelated to this work. Additionally, JBN held the position of OMERACT fellow in the POLOS in RA Working Group during the data collection period. VS is a founder of OMERACT, an organization that develops and validates outcome measures in rheumatology randomized controlled trials and longitudinal observational studies.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}}],"article-number":"188"}}