{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,12]],"date-time":"2026-11-12T05:12:28Z","timestamp":1794460348947,"version":"4.9.1"},"reference-count":29,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2020,8,17]],"date-time":"2020-08-17T00:00:00Z","timestamp":1597622400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2020,8,17]],"date-time":"2020-08-17T00:00:00Z","timestamp":1597622400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"PCORnet Autoimmune and Systemic Inflammatory Syndromes Collaborative Research Group","award":["N\/A"],"award-info":[{"award-number":["N\/A"]}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Pediatr Rheumatol"],"published-print":{"date-parts":[[2020,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n<jats:title>Background<\/jats:title>\n<jats:p>The purpose of this study was to identify reproductive health knowledge gaps and topics that concern adolescent and young adult (AYA) women with pediatric rheumatic diseases and their parents.<\/jats:p>\n<\/jats:sec><jats:sec>\n<jats:title>Methods<\/jats:title>\n<jats:p>Data collection occurred in two cohorts. In the first cohort, young women (15\u201320\u2009years old) with pediatric-onset rheumatic conditions and their parents were recruited from a single, academic pediatric rheumatology center. In the second cohort, young women (18\u201325\u2009years old) with pediatric-onset rheumatic conditions were recruited from a national conference for families with pediatric rheumatic diseases. This resulted in 20 adolescents and young adults (18.3\u2009\u00b1\u20092.4\u2009years old), and 7 parent focus group participants. Focus group leaders facilitated discussions centered on reproductive health topics that participants identified as important, their sources of knowledge, and preferences for patient education and ongoing follow-up. Data were summarized independently by 4 researchers to reduce potential bias and subsequently analyzed using rapid qualitative analysis.<\/jats:p>\n<\/jats:sec><jats:sec>\n<jats:title>Results<\/jats:title>\n<jats:p>All participants, regardless of diagnosis, medication, current sexual activity, or current intention to have children, expressed concern about the effect of their rheumatic condition and medications on fertility, risks to mother and child during and after pregnancy, and obtaining safe and effective contraception. Additionally, some participants discussed the burden of disease and its potential impact on motherhood. Finally, participants raised concern around the effect of disease and medication on routine reproductive health care, such as menstrual cycles, feminine self-care, and preventive exams. Three themes emerged: 1) participants had been advised to avoid unplanned pregnancy, however reported receiving inadequate explanation to support this instruction, 2) participants conceptualized reproductive health as tied to rheumatic disease management and thus suggested ways to include family members in discussion, and 3) rheumatology practitioners were not considered a resource of reproductive health information.<\/jats:p>\n<\/jats:sec><jats:sec>\n<jats:title>Conclusions<\/jats:title>\n<jats:p>Young women and their parents reported dissatisfaction with the availability, quantity, and quality of reproductive health information they received, particularly when related to their pediatric-onset rheumatic disease. These findings provide an initial step in understanding the patient perspective of reproductive health in rheumatology, and how to address these concerns in the care of young women with rheumatic diseases.<\/jats:p>\n<\/jats:sec>","DOI":"10.1186\/s12969-020-00460-7","type":"journal-article","created":{"date-parts":[[2020,8,31]],"date-time":"2020-08-31T12:47:55Z","timestamp":1598878075000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":25,"title":["Reproductive health needs of adolescent and young adult women with pediatric rheumatic diseases"],"prefix":"10.1186","volume":"18","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0159-6374","authenticated-orcid":false,"given":"Kristine","family":"Carandang","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Veronica","family":"Mruk","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stacy P.","family":"Ardoin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brittany","family":"Huynh","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Megan E. B.","family":"Clowse","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elise D.","family":"Berlan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cuoghi","family":"Edens","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2020,8,17]]},"reference":[{"key":"460_CR1","doi-asserted-by":"publisher","first-page":"795","DOI":"10.1136\/annrheumdis-2015-208840","volume":"75","author":"C G\u00f6testam Skorpen","year":"2016","unstructured":"G\u00f6testam Skorpen C, Hoeltzenbein M, Tincani A, Fischer-Betz R, Elefant E, Chambers C, et al. The EULAR points to consider for use of antirheumatic drugs before pregnancy, and during pregnancy and lactation. Ann Rheum Dis. 2016;75:795\u2013810.","journal-title":"Ann Rheum Dis"},{"key":"460_CR2","doi-asserted-by":"publisher","unstructured":"Sammaritano LR, Bermas BL, Chakravarty EE, Chambers C, Clowse MEB, Lockshin MD, et al. American College of Rheumatology guideline for the management of reproductive health in rheumatic and musculoskeletal diseases. Arthritis Care Res. 2020;72(4). https:\/\/doi.org\/10.1002\/acr.24130.","DOI":"10.1002\/acr.24130"},{"key":"460_CR3","doi-asserted-by":"publisher","first-page":"26","DOI":"10.1186\/s12969-018-0242-0","volume":"16","author":"N Ling","year":"2018","unstructured":"Ling N, Lawson E, von Scheven E. Adverse pregnancy outcomes in adolescents and young women with systemic lupus erythematosus: a national estimate. Pediatr Rheumatol. 2018;16:26.","journal-title":"Pediatr Rheumatol"},{"key":"460_CR4","doi-asserted-by":"publisher","unstructured":"Smith CJF, Bandoli G, Kavanaugh A, Chambers CD. Birth outcomes and disease activity during pregnancy in a prospective cohort of women with psoriatic arthritis and ankylosing spondylitis. Arthritis Care Res. 2019. https:\/\/doi.org\/10.1002\/acr.23924.","DOI":"10.1002\/acr.23924"},{"key":"460_CR5","doi-asserted-by":"publisher","first-page":"263","DOI":"10.1016\/j.rdc.2016.12.006","volume":"43","author":"\u00c9 Vinet","year":"2017","unstructured":"Vinet \u00c9, Bernatsky S. Outcomes in children born to women with rheumatic diseases. Rheum Dis Clin N Am. 2017;43:263\u201373.","journal-title":"Rheum Dis Clin N Am"},{"key":"460_CR6","doi-asserted-by":"publisher","first-page":"125","DOI":"10.1002\/acr2.1016","volume":"1","author":"M Birru Talabi","year":"2019","unstructured":"Birru Talabi M, Eudy AM, Jayasundara M, Haroun T, Nowell WB, Curtis JR, et al. Pregnancy, periods, and \u201cthe pill\u201d: exploring the reproductive experiences of women with inflammatory arthritis. ACR Open Rheumatol. 2019;1:125\u201332.","journal-title":"ACR Open Rheumatol"},{"key":"460_CR7","doi-asserted-by":"publisher","first-page":"73","DOI":"10.1002\/msc.1031","volume":"11","author":"T Meade","year":"2013","unstructured":"Meade T, Sharpe L, Hallab L, Aspanell D, Manolios N. Navigating motherhood choices in the context of rheumatoid arthritis: Women\u2019s stories: motherhood and RA. Musculoskeletal Care. 2013;11:73\u201382.","journal-title":"Musculoskeletal Care"},{"key":"460_CR8","doi-asserted-by":"publisher","first-page":"124","DOI":"10.1016\/1054-139X(95)00282-W","volume":"19","author":"J-C Sur\u00eds","year":"1996","unstructured":"Sur\u00eds J-C, Resnick MD, Cassuto N, Blum RWM. Sexual behavior of adolescents with chronic disease and disability. J Adolesc Health. 1996;19:124\u201331.","journal-title":"J Adolesc Health"},{"key":"460_CR9","doi-asserted-by":"publisher","first-page":"312","DOI":"10.1016\/j.jadohealth.2010.02.002","volume":"47","author":"LB Finer","year":"2010","unstructured":"Finer LB. Unintended pregnancy among U.S. adolescents: accounting for sexual activity. J Adolesc Health. 2010;47:312\u20134.","journal-title":"J Adolesc Health"},{"key":"460_CR10","doi-asserted-by":"publisher","unstructured":"Birru Talabi M, Clowse MEB, Blalock SJ, Moreland L, Siripong N, Borrero S. Contraception use among reproductive-age women with rheumatic diseases. Arthritis Care Res. 2018. https:\/\/doi.org\/10.1002\/acr.23724.","DOI":"10.1002\/acr.23724"},{"key":"460_CR11","doi-asserted-by":"publisher","first-page":"e20151454","DOI":"10.1542\/peds.2015-1454","volume":"137","author":"SL Stancil","year":"2016","unstructured":"Stancil SL, Miller M, Briggs H, Lynch D, Goggin K, Kearns G. Contraceptive provision to adolescent females prescribed teratogenic medications. Pediatrics. 2016;137:e20151454.","journal-title":"Pediatrics."},{"key":"460_CR12","doi-asserted-by":"publisher","first-page":"1119","DOI":"10.1093\/rheumatology\/kes428","volume":"52","author":"JS Chen","year":"2013","unstructured":"Chen JS, Ford JB, Roberts CL, Simpson JM, March LM. Pregnancy outcomes in women with juvenile idiopathic arthritis: a population-based study. Rheumatology. 2013;52:1119\u201325.","journal-title":"Rheumatology."},{"key":"460_CR13","doi-asserted-by":"publisher","unstructured":"Smith CJF, F\u00f6rger F, Bandoli G, Chambers CD. Factors associated with preterm delivery among women with rheumatoid arthritis and juvenile idiopathic arthritis. Arthritis Care Res. 2018. https:\/\/doi.org\/10.1002\/acr.23730.","DOI":"10.1002\/acr.23730"},{"key":"460_CR14","unstructured":"Hamilton A. Veterans Affairs: Health Services Research & Development. 2013; Available at: https:\/\/www.hsrd.research.va.gov\/for_researchers\/cyber_seminars\/archives\/video_archive.cfm? SessionID=780."},{"key":"460_CR15","doi-asserted-by":"publisher","first-page":"e019993","DOI":"10.1136\/bmjopen-2017-019993","volume":"8","author":"B Taylor","year":"2018","unstructured":"Taylor B, Henshall C, Kenyon S, Litchfield I, Greenfield S. Can rapid approaches to qualitative analysis deliver timely, valid findings to clinical leaders? A mixed methods study comparing rapid and thematic analysis. BMJ Open. 2018;8:e019993. https:\/\/doi.org\/10.1136\/bmjopen-2017-019993.","journal-title":"BMJ Open"},{"issue":"5","key":"460_CR16","doi-asserted-by":"publisher","first-page":"478","DOI":"10.1001\/archpedi.154.5.478","volume":"154","author":"MT Britto","year":"2000","unstructured":"Britto MT, Rosenthal SL, Taylor J, Passo MH. Improving rheumatologists' screening for alcohol use and sexual activity. Arch Pediatr Adolesc Med. 2000;154(5):478\u201383.","journal-title":"Arch Pediatr Adolesc Med"},{"key":"460_CR17","doi-asserted-by":"publisher","unstructured":"Stringer E, Scott R, Mosher D, MacNeil I, Huber AM, Ramsey S, Lang B. Evaluation of a rheumatology transition clinic. Pediatr Rheumatol. 2015;13(22). https:\/\/doi.org\/10.1186\/s12969-015-0016-x.","DOI":"10.1186\/s12969-015-0016-x"},{"key":"460_CR18","doi-asserted-by":"publisher","first-page":"e004081","DOI":"10.1136\/bmjopen-2013-004081","volume":"4","author":"E Chakravarty","year":"2014","unstructured":"Chakravarty E, Clowse MEB, Pushparajah DS, Mertens S, Gordon C. Family planning and pregnancy issues for women with systemic inflammatory diseases: patient and physician perspectives. BMJ Open. 2014;4:e004081.","journal-title":"BMJ Open"},{"key":"460_CR19","doi-asserted-by":"publisher","unstructured":"Gomez AM, Arteaga S, Ingraham N, Arcara J. Medical conditions, pregnancy perspectives and contraceptive decision-making among young people: an exploratory, qualitative analysis. Contraception. 2019. https:\/\/doi.org\/10.1016\/j.contraception.2019.03.046.","DOI":"10.1016\/j.contraception.2019.03.046"},{"key":"460_CR20","doi-asserted-by":"publisher","unstructured":"Clemente D, Leon L, Foster H, Carmona L, Minden K. Transitional care for rheumatic conditions in Europe: current clinical practice and available resources. Pediatr Rheumatol. 2017;15(49). https:\/\/doi.org\/10.1186\/s12969-017-0179-8.","DOI":"10.1186\/s12969-017-0179-8"},{"key":"460_CR21","doi-asserted-by":"publisher","first-page":"32","DOI":"10.1186\/s12969-019-0327-4","volume":"17","author":"SP Ardoin","year":"2019","unstructured":"Ardoin SP, Daly R, Merzoug L, et al. Research priorities in childhood-onset lupus: results of a multidisciplinary prioritization exercise. Pediatr Rheumatol. 2019;17:32.","journal-title":"Pediatr Rheumatol"},{"issue":"3","key":"460_CR22","doi-asserted-by":"publisher","first-page":"452","DOI":"10.1002\/acr.23872","volume":"72","author":"M Birru Talabi","year":"2020","unstructured":"Birru Talabi M, Clowse MEB, Blalock SJ, Hamm M, Borrerro S. Perspectives of adult rheumatologists regarding family planning counseling and care: a qualitative study. Arthritis Care Res. 2020;72(3):452\u20138. https:\/\/doi.org\/10.1002\/acr.23872.","journal-title":"Arthritis Care Res"},{"key":"460_CR23","doi-asserted-by":"publisher","unstructured":"Shaw KL, Southwood TR, McDonagh JE, British Paediatric Rheumatology Group. User perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatology. 2004;43(6). https:\/\/doi.org\/10.1093\/rheumatology\/keh175.","DOI":"10.1093\/rheumatology\/keh175"},{"key":"460_CR24","doi-asserted-by":"publisher","first-page":"639","DOI":"10.1136\/annrheumdis-2016-210112","volume":"76","author":"HE Foster","year":"2017","unstructured":"Foster HE, Minden K, Clemente D, et al. EULAR\/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases. Ann Rheum Dis. 2017;76:639\u201346.","journal-title":"Ann Rheum Dis"},{"key":"460_CR25","first-page":"16","volume":"31","author":"DA Klein","year":"2014","unstructured":"Klein DA, Goldenring JM, Adelman WP. HEEADSSS 3.0: the psychosocial interview for adolescents updated for a new century fueled by media. Contemp Pediatr. 2014;31:16\u201328.","journal-title":"Contemp Pediatr"},{"key":"460_CR26","unstructured":"Goldenring JM, Cohen E. Getting into adolescent heads. Contemp Pediatr. 1998; https:\/\/www.contemporarypediatrics.com\/sites\/default\/files\/legacy\/mm\/Resource-Centers\/GettingintoTeensHeads.pdf."},{"issue":"12","key":"460_CR27","doi-asserted-by":"publisher","first-page":"1029","DOI":"10.1001\/jama.1997.03550120089044","volume":"278","author":"CA Ford","year":"1997","unstructured":"Ford CA, Millstein SG, Halpern-Felsher BL, Irwin CE Jr. Influence of physician confidentiality assurances on adolescents\u2019 willingness to disclose information and seek future health care. A randomized controlled trial. JAMA. 1997;278(12):1029\u201334. https:\/\/doi.org\/10.1001\/jama.1997.03550120089044.","journal-title":"JAMA."},{"issue":"15","key":"460_CR28","doi-asserted-by":"publisher","first-page":"e20172858","DOI":"10.1542\/peds2017-2858","volume":"140","author":"AV Marcell","year":"2017","unstructured":"Marcell AV, Burstein GR, Committee on Adolescence. Sexual and reproductive health care services in the pediatric setting. Pediatrics. 2017;140(15):e20172858. https:\/\/doi.org\/10.1542\/peds2017-2858.","journal-title":"Pediatrics"},{"issue":"1","key":"460_CR29","doi-asserted-by":"publisher","first-page":"1479582","DOI":"10.1080\/17482631.2018.1479582","volume":"13","author":"L Rockliffe","year":"2018","unstructured":"Rockliffe L, Chorley AH, Marlow LAV, Forster AS. It\u2019s hard to reach the \u201chard-to-reach\u201d: the challenges of recruiting people who do not access preventative healthcare services into interview studies. Int J Qual Stud Health Well-being. 2018;13(1):1479582. https:\/\/doi.org\/10.1080\/17482631.2018.1479582.","journal-title":"Int J Qual Stud Health Well-being"}],"container-title":["Pediatric Rheumatology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12969-020-00460-7.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s12969-020-00460-7\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12969-020-00460-7.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,8,17]],"date-time":"2021-08-17T00:07:12Z","timestamp":1629158832000},"score":1,"resource":{"primary":{"URL":"https:\/\/ped-rheum.biomedcentral.com\/articles\/10.1186\/s12969-020-00460-7"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,8,17]]},"references-count":29,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2020,12]]}},"alternative-id":["460"],"URL":"https:\/\/doi.org\/10.1186\/s12969-020-00460-7","relation":{},"ISSN":["1546-0096"],"issn-type":[{"value":"1546-0096","type":"electronic"}],"subject":[],"published":{"date-parts":[[2020,8,17]]},"assertion":[{"value":"4 March 2020","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"3 August 2020","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"17 August 2020","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"The Institutional Review Board Expedited Committee at Nationwide Children\u2019s Hospital reviewed and approved the first part of this study (3 focus groups recruited in clinic; Study ID IRB18\u201300589) on 30 July 2018. Participants ages 15\u201317\u2009years signed an informed assent to participate, and a parent or guardian signed a corresponding informed consent. Participants over the age of 18\u2009years signed an informed consent to participate.The Institutional Review Board Committee at University of Chicago, Biological Science Division, reviewed and approved the second part of this study (survey and focus group conducted at Juvenile Arthritis Conference; Study ID IRB 19\u20131013 and 19\u20131014) on 12 July 2019. All participants were 18+ years old and verbally consented to participate.","order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"Dr. Megan Clowse is consultant for UCB about issues surrounding rheumatoid arthritis and pregnancy and is at Duke University, which has an independent medical education grant from GSK about lupus and pregnancy. Dr. Elise Berlan is a Consultant for Bayer and a Nexplanon Clinical Trainer for Merck. None of the other authors have any relevant conflicts of interest to disclose.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"66"}}