{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,30]],"date-time":"2026-10-30T04:38:38Z","timestamp":1793335118555,"version":"4.5.0"},"reference-count":56,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2024,10,2]],"date-time":"2024-10-02T00:00:00Z","timestamp":1727827200000},"content-version":"vor","delay-in-days":1,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2024,10]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>The aim of this study is to identify and explore the unmet needs of adolescents and young adults living with endometriosis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>An open\u2010ended online survey was conducted, with questions derived from prior research looking at areas of unmet need in healthcare, career and work, financial, information, psychological, social and cultural domains.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting and Population<\/jats:title>\n                    <jats:p>Self\u2010selecting 18\u201025 year olds with surgically diagnosed endometriosis (self\u2010reported) currently living in Australia were included as participants.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Invitation to participate in an open\u2010ended online survey was shared through the social media of Australian endometriosis organisations and the Royal Women's Hospital, Melbourne. Surveys were analysed qualitatively through template analysis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Main Outcome Measures<\/jats:title>\n                    <jats:p>Recording of the unmet supportive care needs of this population was carried out.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>One hundred and thirty\u2010one respondents fit the eligibility criteria of being aged 18\u201325 years (median age 23 years). Most were born in Australia (94%), university\u2010educated (54%) and lived in a metropolitan setting (69%). There was a range of unmet needs that were presented across education, work, healthcare and relationships. Group\u2010specific challenges were identified: doctors either over\u2010 or underemphasising future fertility; disrupted sexual and romantic life due to painful sex; managing pain in the classroom and workplace where periods are taboo; and being gender\u2010queer in gynaecological medical spaces.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>The increasingly young age at which patients are receiving an endometriosis diagnosis precipitates a shift in patient care. The treatment decisions that are being made must be reflective of the unique needs of the adolescents who carry the burden of the disease. Clinicians are advised to be aware of and discuss needs with their patients.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Patient or Public Contribution<\/jats:title>\n                    <jats:p>The nine open\u2010ended questions in this survey were developed from data from a preliminary series of interviews with endometriosis patients in a tertiary women's healthcare centre. In asking these data\u2010informed questions to the online endometriosis community, patients across broader sociocultural demographics and disease states (including less symptomatic endometriosis) have provided a broader understanding of their supportive care needs.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hex.70045","type":"journal-article","created":{"date-parts":[[2024,10,3]],"date-time":"2024-10-03T01:40:41Z","timestamp":1727919641000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":12,"title":["Supportive Care Needs of Young Adults With Endometriosis: An Open\u2010Ended Online Survey and Exploration of Unmet Needs"],"prefix":"10.1111","volume":"27","author":[{"given":"Louis","family":"Taffs","sequence":"first","affiliation":[{"name":"Department of Obstetrics, Gynaecology, and Newborn Health The Royal Women's Hospital and The University of Melbourne Melbourne Australia"},{"name":"Faculty of Medicine and Health, Sydney Medical School The University of Sydney Sydney Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Niamh","family":"Waters","sequence":"additional","affiliation":[{"name":"Department of Obstetrics, Gynaecology, and Newborn Health The Royal Women's Hospital and The University of Melbourne Melbourne Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jennifer","family":"Marino","sequence":"additional","affiliation":[{"name":"Faculty of Medicine and Health, Sydney Medical School The University of Sydney Sydney Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charlene","family":"Rapsey","sequence":"additional","affiliation":[{"name":"Department of Psychological Medicine, Dunedin School of Medicine University of Otago Dunedin, Aotearoa New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michelle","family":"Peate","sequence":"additional","affiliation":[{"name":"Department of Obstetrics, Gynaecology, and Newborn Health The Royal Women's Hospital and The University of Melbourne Melbourne Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jane E.","family":"Girling","sequence":"additional","affiliation":[{"name":"Department of Obstetrics, Gynaecology, and Newborn Health The Royal Women's Hospital and The University of Melbourne Melbourne Australia"},{"name":"Department of Anatomy, School of Biomedical Sciences University of Otago Dunedin, Aotearoa New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2024,10,2]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.1111\/1471-0528.16447"},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41572-018-0008-5"},{"key":"e_1_2_12_4_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41574-019-0245-z"},{"key":"e_1_2_12_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.maturitas.2023.04.272"},{"key":"e_1_2_12_6_1","unstructured":"Ernst & Young The Cost of Endometriosis in Australia EY and EndoActive Report (2019) https:\/\/endoactive.org.au\/report\/."},{"key":"e_1_2_12_7_1","doi-asserted-by":"publisher","DOI":"10.1530\/RAF-22-0003"},{"key":"e_1_2_12_8_1","volume-title":"Historic Medicare Changes for Women Battling Endometriosis","author":"Butler M.","year":"2024"},{"key":"e_1_2_12_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/ajo.13080"},{"key":"e_1_2_12_10_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00520-015-2994-0"},{"key":"e_1_2_12_11_1","doi-asserted-by":"publisher","DOI":"10.1111\/ecc.13525"},{"key":"e_1_2_12_12_1","doi-asserted-by":"publisher","DOI":"10.3109\/0284186X.2012.742204"},{"key":"e_1_2_12_13_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41598-020-73389-2"},{"key":"e_1_2_12_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jadohealth.2020.02.024"},{"key":"e_1_2_12_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpag.2022.10.011"},{"key":"e_1_2_12_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jadohealth.2018.06.027"},{"key":"e_1_2_12_17_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpag.2020.06.007"},{"key":"e_1_2_12_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpag.2023.09.004"},{"key":"e_1_2_12_19_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpag.2019.11.007"},{"key":"e_1_2_12_20_1","doi-asserted-by":"publisher","DOI":"10.1002\/ijgo.15554"},{"key":"e_1_2_12_21_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpag.2011.07.005"},{"key":"e_1_2_12_22_1","first-page":"156","article-title":"Endometriosis in Adolescents","volume":"27","author":"Chatman D. 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