{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,5]],"date-time":"2026-05-05T01:34:03Z","timestamp":1777944843556,"version":"3.51.4"},"reference-count":60,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2025,6,29]],"date-time":"2025-06-29T00:00:00Z","timestamp":1751155200000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2025,6,29]],"date-time":"2025-06-29T00:00:00Z","timestamp":1751155200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"name":"Children\u2019s Tumour Foundation of Australia"},{"name":"Human Genetics Society of Australia and the Nigel Clarke Memorial Education Bursary"},{"name":"RNSH No. 2 Trust Fund supported the Advanced Trainee Research Program"},{"name":"Joint Venture Partners"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Womens Health (Lond Engl)"],"published-print":{"date-parts":[[2025,10]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>Women with neurofibromatosis type 1 (NF1) have an increased risk of breast cancer and poorer 5-year survival. Current breast surveillance patient information resources may be inappropriate for this cohort due to increased cognitive deficits and cancer worry.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objectives:<\/jats:title>\n                    <jats:p>This study aimed to develop and evaluate NF1-specific patient-centric educational resources about breast cancer surveillance.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design:<\/jats:title>\n                    <jats:p>A pilot, prospective longitudinal cohort study was conducted through a Sydney tertiary hospital (Royal North Shore Hospital) adult NF1 clinic and an established breast cancer risk management clinic.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>A brochure was developed with input from stakeholders and women with NF1 participating in breast surveillance. The content was adapted to create a webpage and animation evaluated through clinician and patient surveys. Final iterations of the resources were based on stakeholder feedback.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>Nine semi-structured interviews were conducted with women with NF1 after breast surveillance. All considered the brochure acceptable and valuable and supported sharing the resource. Fifty-seven patient and clinician surveys were also completed, with the webpage and animation highly rated regarding acceptability, usefulness, and relevance.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions:<\/jats:title>\n                    <jats:p>Information in three media has been developed specifically for women with NF1, considering breast surveillance to increase understanding, provide reassurance, and as a memory aid to support clinician consultation.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/17455057251337118","type":"journal-article","created":{"date-parts":[[2025,6,29]],"date-time":"2025-06-29T13:38:19Z","timestamp":1751204299000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":1,"title":["The development and evaluation of educational resources for young women with neurofibromatosis type 1 undergoing breast cancer surveillance"],"prefix":"10.1177","volume":"21","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0131-1954","authenticated-orcid":false,"given":"Caitlin","family":"Forwood","sequence":"first","affiliation":[{"name":"Department of Clinical Genetics, Royal North Shore Hospital, Sydney, NSW, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1163-176X","authenticated-orcid":false,"given":"Emma","family":"Hartley","sequence":"additional","affiliation":[{"name":"Faculty of Health and Medicine, Northern Clinical School, University of Sydney, Sydney, NSW, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jane","family":"Fleming","sequence":"additional","affiliation":[{"name":"Department of Clinical Genetics, Royal North Shore Hospital, Sydney, NSW, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5578-0460","authenticated-orcid":false,"given":"Ashley","family":"Crook","sequence":"additional","affiliation":[{"name":"Department of Clinical Genetics, Royal North Shore Hospital, Sydney, NSW, Australia"},{"name":"Department of Cancer Services, NSLHD Familial Cancer Service, Royal North Shore Hospital, Sydney, NSW, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-9201-6526","authenticated-orcid":false,"given":"Diana","family":"Nawara","sequence":"additional","affiliation":[{"name":"Graduate School of Health, University of Technology Sydney, Sydney, NSW, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6054-039X","authenticated-orcid":false,"given":"Mathilda","family":"Wilding","sequence":"additional","affiliation":[{"name":"Department of Cancer Services, NSLHD Familial Cancer Service, Royal North Shore Hospital, Sydney, NSW, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lavvina","family":"Thiyagarajan","sequence":"additional","affiliation":[{"name":"Department of Clinical Genetics, Royal North Shore Hospital, Sydney, NSW, Australia"},{"name":"School of Clinical Medicine, University of New South Wales, Sydney, NSW, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Katrina","family":"Moore","sequence":"additional","affiliation":[{"name":"Department of Breast Surgery, Royal North Shore Hospital, Sydney, NSW, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Yobelli","family":"Jimenez","sequence":"additional","affiliation":[{"name":"Faculty of Medicine and Health, Discipline of Medical Imaging Science, University of Sydney, Sydney NSW, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rebecca B.","family":"Saunderson","sequence":"additional","affiliation":[{"name":"Faculty of Health and Medicine, Northern Clinical School, University of Sydney, Sydney, NSW, Australia"},{"name":"Department of Dermatology, Royal North Shore Hospital, Sydney, NSW, Australia"},{"name":"Consentic, Sydney, NSW, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9372-3325","authenticated-orcid":false,"given":"Nicola","family":"Poplawski","sequence":"additional","affiliation":[{"name":"Adult Genetics Unit, Royal Adelaide Hospital, Adelaide, SA, Australia"},{"name":"Adelaide Medical School, University of Adelaide, Adelaide, SA, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Yemima","family":"Berman","sequence":"additional","affiliation":[{"name":"Department of Clinical Genetics, Royal North Shore Hospital, Sydney, NSW, Australia"},{"name":"Faculty of Health and Medicine, Northern Clinical School, University of Sydney, Sydney, NSW, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2025,6,29]]},"reference":[{"key":"e_1_3_3_2_2","unstructured":"eviQ. Clinical resource: NF1 (neurofibromatosis type 1)\u2014risk management. 752 v. nine https:\/\/www.eviq.org.au\/cancer-genetics\/adult\/risk-management\/752-nf1-neurofibromatosis-type-1-risk-manageme#cancer-tumour-risk-management-guidelines (2023 accessed 21 May 23)."},{"key":"e_1_3_3_3_2","doi-asserted-by":"publisher","DOI":"10.1038\/bjc.2016.403"},{"key":"e_1_3_3_4_2","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2015.65.3576"},{"key":"e_1_3_3_5_2","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.2007.049346"},{"key":"e_1_3_3_6_2","doi-asserted-by":"publisher","DOI":"10.1186\/s13053-019-0110-z"},{"key":"e_1_3_3_7_2","doi-asserted-by":"publisher","DOI":"10.1038\/s41436-019-0651-6"},{"key":"e_1_3_3_8_2","doi-asserted-by":"publisher","DOI":"10.3390\/cancers11050707"},{"key":"e_1_3_3_9_2","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.35550"},{"key":"e_1_3_3_10_2","doi-asserted-by":"publisher","DOI":"10.1038\/bjc.2015.78"},{"key":"e_1_3_3_11_2","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-015-9829-5"},{"key":"e_1_3_3_12_2","doi-asserted-by":"publisher","DOI":"10.1111\/cge.12627"},{"key":"e_1_3_3_13_2","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.35840"},{"key":"e_1_3_3_14_2","volume-title":"Neurofibromatosis\u2014current trends and future directions","author":"Potter BS","year":"2019","unstructured":"Potter BS, Mendoza L. Cognitive issues experienced by individuals living with neurofibromatosis. In: Francesco Signorelli RM (ed.) Neurofibromatosis\u2014current trends and future directions. IntechOpen, 2019."},{"key":"e_1_3_3_15_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0755-4982(06)74570-5"},{"key":"e_1_3_3_16_2","doi-asserted-by":"publisher","DOI":"10.1007\/s10689-021-00259-9"},{"key":"e_1_3_3_17_2","doi-asserted-by":"publisher","DOI":"10.1177\/0883073817749367"},{"key":"e_1_3_3_18_2","doi-asserted-by":"publisher","DOI":"10.1007\/s11060-017-2657-8"},{"key":"e_1_3_3_19_2","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.38680"},{"key":"e_1_3_3_20_2","doi-asserted-by":"publisher","DOI":"10.1258\/jrsm.2008.080149"},{"key":"e_1_3_3_21_2","doi-asserted-by":"publisher","DOI":"10.1177\/109019819802500508"},{"key":"e_1_3_3_22_2","doi-asserted-by":"publisher","DOI":"10.2105\/AJPH.84.1.119"},{"key":"e_1_3_3_23_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1525-1497.2005.40208.x"},{"key":"e_1_3_3_24_2","doi-asserted-by":"publisher","DOI":"10.1111\/hex.12487"},{"key":"e_1_3_3_25_2","doi-asserted-by":"publisher","DOI":"10.1046\/j.1525-1497.1998.00072.x"},{"key":"e_1_3_3_26_2","first-page":"980","article-title":"Website to promote early detection of breast cancer: \u201cwww.thinkhealth.com.\u201d","volume":"2003","author":"Rapchak B","year":"2003","unstructured":"Rapchak B, Kepic T, Naeymi-Rad F, et al. Website to promote early detection of breast cancer: \u201cwww.thinkhealth.com.\u201d AMIA Annu Symp Proc 2003; 2003: 980.","journal-title":"AMIA Annu Symp Proc"},{"key":"e_1_3_3_27_2","doi-asserted-by":"publisher","DOI":"10.1007\/s13187-010-0078-x"},{"issue":"3","key":"e_1_3_3_28_2","first-page":"243","article-title":"[Informed choice in breast cancer screening: the role of education]","volume":"35","author":"Pons-Rodriguez A","year":"2021","unstructured":"Pons-Rodriguez A, Martinez-Alonso M, Perestelo-Perez L, et al. [Informed choice in breast cancer screening: the role of education]. Gac Sanit 2021; 35(3): 243\u2013249.","journal-title":"Gac Sanit"},{"key":"e_1_3_3_29_2","author":"Clinical Excellence Commission","year":"2019","unstructured":"Clinical Excellence Commission. NSW health literacy framework. 2019-2024. Sydney: Clinical Excellence Commission, 2019.","journal-title":"NSW health literacy framework. 2019-2024"},{"key":"e_1_3_3_30_2","unstructured":"Australian Government. Australian Commision on Safety and Quality and Healthcare https:\/\/www.safetyandquality.gov.au\/our-work\/patient-and-consumer-centred-care\/health-literacy (2014 accessed 13 February 2022)."},{"key":"e_1_3_3_31_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1369-7625.2004.00273.x"},{"key":"e_1_3_3_32_2","doi-asserted-by":"publisher","DOI":"10.3109\/17549507.2011.631583"},{"key":"e_1_3_3_33_2","doi-asserted-by":"publisher","DOI":"10.1093\/her\/cym018"},{"key":"e_1_3_3_34_2","doi-asserted-by":"publisher","DOI":"10.1093\/pubmed\/23.3.227"},{"key":"e_1_3_3_35_2","doi-asserted-by":"publisher","DOI":"10.1197\/jamia.M1687"},{"key":"e_1_3_3_36_2","volume-title":"How to write plain English","author":"Flesch R.","year":"2016","unstructured":"Flesch R. How to write plain English. University of Canterbury, 2016."},{"key":"e_1_3_3_37_2","first-page":"8","article-title":"Derivation of new readability formulas (automated readability index, fog count, and flesch reading ease formula) for Navy enlisted personnel","author":"Kincaid P","year":"1975","unstructured":"Kincaid P, Fishburne RP, Rogers RL, et al. Derivation of new readability formulas (automated readability index, fog count, and flesch reading ease formula) for Navy enlisted personnel. Res Branch Rep 1975; 56: 8\u201375.","journal-title":"Res Branch Rep"},{"key":"e_1_3_3_38_2","doi-asserted-by":"publisher","DOI":"10.1007\/s10689-023-00340-5"},{"key":"e_1_3_3_39_2","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-006-9068-x"},{"key":"e_1_3_3_40_2","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"e_1_3_3_41_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2019.103208"},{"key":"e_1_3_3_42_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2008.08.010"},{"key":"e_1_3_3_43_2","unstructured":"IBM. Corp. IBM SPSS Statistics for Windows Version 25.0 2017. https:\/\/www.ibm.com\/support\/pages\/how-cite-ibm-spss-statistics-or-earlier-versions-spss"},{"key":"e_1_3_3_44_2","first-page":"292","article-title":"Sample sizes for saturation in qualitative research: a systematic review of empirical tests","volume":"1982","author":"Hennink M","year":"2022","unstructured":"Hennink M, Kaiser BN. Sample sizes for saturation in qualitative research: a systematic review of empirical tests. Soc Sci Med 2022; 1982: 292.","journal-title":"Soc Sci Med"},{"key":"e_1_3_3_45_2","doi-asserted-by":"publisher","DOI":"10.1080\/2159676X.2019.1704846"},{"key":"e_1_3_3_46_2","doi-asserted-by":"publisher","DOI":"10.1177\/1049732315617444"},{"key":"e_1_3_3_47_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.breast.2020.02.001"},{"key":"e_1_3_3_48_2","doi-asserted-by":"publisher","DOI":"10.1177\/1090198105277329"},{"key":"e_1_3_3_49_2","doi-asserted-by":"publisher","DOI":"10.1186\/1472-6831-14-111"},{"key":"e_1_3_3_50_2","doi-asserted-by":"publisher","DOI":"10.1345\/aph.1C449"},{"key":"e_1_3_3_51_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.pecinn.2021.100003"},{"key":"e_1_3_3_52_2","doi-asserted-by":"publisher","DOI":"10.1186\/1472-6947-13-S2-S7"},{"key":"e_1_3_3_53_2","unstructured":"Australian Government. Government Style Manual https:\/\/www.stylemanual.gov.au\/about-style-manual (2020 accessed 13 February 2022)."},{"key":"e_1_3_3_54_2","volume-title":"How to develop information from guidelines for patients and the public","author":"Graham K","year":"2021","unstructured":"Graham K, Schaefer C, Santesso N. How to develop information from guidelines for patients and the public. Guidelines International Network, 2021."},{"key":"e_1_3_3_55_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jclinepi.2014.04.009"},{"key":"e_1_3_3_56_2","doi-asserted-by":"publisher","DOI":"10.1002\/pon.3023"},{"key":"e_1_3_3_57_2","first-page":"898327","article-title":"Symptom distress associated with biopsy in women with suspect breast lesions","volume":"2012","author":"Kamath J","year":"2012","unstructured":"Kamath J, Cruess DG, Claffey K, et al. Symptom distress associated with biopsy in women with suspect breast lesions. ISRN Oncol 2012; 2012: 898327.","journal-title":"ISRN Oncol"},{"key":"e_1_3_3_58_2","doi-asserted-by":"publisher","DOI":"10.1007\/s00520-018-4307-x"},{"key":"e_1_3_3_59_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.apmr.2009.03.014"},{"key":"e_1_3_3_60_2","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2458-2-4"},{"key":"e_1_3_3_61_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2016.10.026"}],"container-title":["Women's Health"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/17455057251337118","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/17455057251337118","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/17455057251337118","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,5,2]],"date-time":"2026-05-02T08:28:58Z","timestamp":1777710538000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/17455057251337118"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,6,29]]},"references-count":60,"alternative-id":["10.1177\/17455057251337118"],"URL":"https:\/\/doi.org\/10.1177\/17455057251337118","relation":{},"ISSN":["1745-5057","1745-5065"],"issn-type":[{"value":"1745-5057","type":"print"},{"value":"1745-5065","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,6,29]]},"article-number":"17455057251337118"}}