{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,29]],"date-time":"2026-10-29T16:00:11Z","timestamp":1793289611031,"version":"4.5.0"},"reference-count":53,"publisher":"MDPI AG","issue":"6","license":[{"start":{"date-parts":[[2021,3,17]],"date-time":"2021-03-17T00:00:00Z","timestamp":1615939200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Cancers"],"abstract":"<jats:p>Background: Adolescents and young adults (AYAs) with cancer are at risk of therapy-induced infertility. The importance of initial and specialized fertility counselling to this patient group is undisputed. Despite international guidelines, oncofertility counselling is still inadequate. The purpose of this study was to examine how female AYA cancer patients and survivors experienced initial and specialized oncofertility counselling, and to present their specific suggestions on how to improve the oncofertility counselling. Methods: Twelve individual semi-structured interviews were performed with AYAs aged 20\u201335 with cancer or who were survivors. Participants were recruited via a youth support centre and social organization for AYAs with cancer. Data was analysed using thematic analysis. Results: Three main themes were found: Support is needed for navigating the fertility information jungle; The doctor\u2019s approach determines the content of the patient consultation; Inadequate and worrying information causes mistrust and frustration. Conclusion: Results indicate a continuing problem regarding insufficient oncofertility counselling to AYAs with cancer. To ensure adequate and uniform information, especially in the initial oncofertility counselling, national guidelines for oncology specialists are suggested including multidisciplinary effort and collaboration between oncology and fertility specialists in mind. In addition, participants suggest focus on communication skills.<\/jats:p>","DOI":"10.3390\/cancers13061355","type":"journal-article","created":{"date-parts":[[2021,3,17]],"date-time":"2021-03-17T11:48:22Z","timestamp":1615981702000},"page":"1355","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":28,"title":["How Do Young Women with Cancer Experience Oncofertility Counselling during Cancer Treatment? A Qualitative, Single Centre Study at a Danish Tertiary Hospital"],"prefix":"10.3390","volume":"13","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-2459-6462","authenticated-orcid":false,"given":"Line","family":"Bentsen","sequence":"first","affiliation":[{"name":"Department of Oncology, Copenhagen University Hospital, Rigshospitalet, Blegdamsvej 9, 2100 Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3570-5372","authenticated-orcid":false,"given":"Helle","family":"Pappot","sequence":"additional","affiliation":[{"name":"Department of Oncology, Copenhagen University Hospital, Rigshospitalet, Blegdamsvej 9, 2100 Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9210-8753","authenticated-orcid":false,"given":"Maiken","family":"Hjerming","sequence":"additional","affiliation":[{"name":"Department of Hematology, Copenhagen University Hospital, Rigshospitalet, Blegdamsvej 9, 2100 Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7570-2822","authenticated-orcid":false,"given":"Lotte B.","family":"Colmorn","sequence":"additional","affiliation":[{"name":"The Fertility Clinic, Copenhagen University Hospital, Rigshospitalet, Blegdamsvej 9, 2100 Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8830-513X","authenticated-orcid":false,"given":"Kirsten T.","family":"Macklon","sequence":"additional","affiliation":[{"name":"The Fertility Clinic, Copenhagen University Hospital, Rigshospitalet, Blegdamsvej 9, 2100 Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0336-1584","authenticated-orcid":false,"given":"Signe","family":"Hangh\u00f8j","sequence":"additional","affiliation":[{"name":"Center of Adolescent Medicine, Department of Pediatrics and Adolescent Medicine, Copenhagen University Hospital, Rigshospitalet, Blegdamsvej 9, 2100 Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2021,3,17]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"325","DOI":"10.1007\/s11912-013-0324-6","article-title":"The adolescent and young adult with cancer: State of the art-psychosocial aspects","volume":"15","author":"Epelman","year":"2013","journal-title":"Curr. Oncol. Rep."},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"19","DOI":"10.2147\/PROM.S51658","article-title":"Quality of life in adolescent and young adult cancer patients: A systematic review of the literature","volume":"6","author":"Quinn","year":"2015","journal-title":"Patient Relat. Outcome Meas."},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"453","DOI":"10.1089\/jayao.2017.0110","article-title":"A Life Put on Pause: An Exploration of the Health-Related Quality of Life Issues Relevant to Adolescents and Young Adults with Cancer","volume":"7","author":"Sodergren","year":"2018","journal-title":"J. Adolesc. Young Adult Oncol."},{"key":"ref_4","first-page":"77","article-title":"Adolescents and young adults with cancer: Aspects of adherence\u2014a questionnaire study","volume":"9","author":"Kleinke","year":"2018","journal-title":"Adolesc. Health Med. Ther."},{"key":"ref_5","doi-asserted-by":"crossref","unstructured":"Webber, L. (2020, November 01). ESHRE Guidelines Fertility Preservation in Women. Available online: https:\/\/www.eshre.eu\/Guidelines-and-Legal\/Guidelines\/Female-fertility-preservation.","DOI":"10.1093\/hropen\/hoaa052"},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"359","DOI":"10.1093\/humupd\/dmn063","article-title":"The current knowledge on radiosensitivity of ovarian follicle development stages","volume":"15","author":"Adriaens","year":"2009","journal-title":"Hum. Reprod. Update"},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"363","DOI":"10.1093\/humupd\/7.4.363","article-title":"Testicular function following chemotherapy","volume":"7","author":"Howell","year":"2001","journal-title":"Hum. Reprod. Update"},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"pkz008","DOI":"10.1093\/jncics\/pkz008","article-title":"Cancer Treatment-Related Infertility: A Critical Review of the Evidence","volume":"3","author":"Poorvu","year":"2019","journal-title":"JNCI Cancer Spectr."},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"480","DOI":"10.5468\/ogs.20003","article-title":"Knowledge and awareness about fertility preservation among female patients with cancer: A cross-sectional study","volume":"63","author":"Mahey","year":"2020","journal-title":"Obstet. Gynecol. Sci."},{"key":"ref_10","doi-asserted-by":"crossref","first-page":"233","DOI":"10.1016\/j.critrevonc.2019.03.010","article-title":"EUropean REcommendations for female FERtility preservation (EU-REFER): A joint collaboration between oncologists and fertility specialists","volume":"138","author":"Dolmans","year":"2019","journal-title":"Crit. Rev. Oncol. Hematol."},{"key":"ref_11","doi-asserted-by":"crossref","first-page":"241","DOI":"10.1007\/s00404-017-4594-3","article-title":"Practical recommendations for fertility preservation in women by the FertiPROTEKT network. Part I: Indications for fertility preservation","volume":"297","author":"Fehm","year":"2018","journal-title":"Arch. Gynecol. Obstet."},{"key":"ref_12","doi-asserted-by":"crossref","first-page":"257","DOI":"10.1007\/s00404-017-4595-2","article-title":"Practical recommendations for fertility preservation in women by the FertiPROTEKT network. Part II: Fertility preservation techniques","volume":"297","author":"Germeyer","year":"2018","journal-title":"Arch. Gynecol. Obstet."},{"key":"ref_13","doi-asserted-by":"crossref","first-page":"1994","DOI":"10.1200\/JCO.2018.78.1914","article-title":"Fertility Preservation in Patients With Cancer: ASCO Clinical Practice Guideline Update","volume":"36","author":"Oktay","year":"2018","journal-title":"J. Clin. Oncol. Off. J. Am. Soc. Clin. Oncol."},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"1664","DOI":"10.1016\/j.annonc.2020.09.006","article-title":"Fertility preservation and post-treatment pregnancies in post-pubertal cancer patients: ESMO Clinical Practice Guidelines","volume":"31","author":"Lambertini","year":"2020","journal-title":"Ann. Oncol. Off. J. Eur. Soc. Med. Oncol."},{"key":"ref_15","doi-asserted-by":"crossref","unstructured":"Practice Committee of the American Society for Reproductive Medicine (2019). Electronic address: Asrm@asrm.org Fertility preservation in patients undergoing gonadotoxic therapy or gonadectomy: A committee opinion. Fertil. Steril., 112, 1022\u20131033.","DOI":"10.1016\/j.fertnstert.2019.09.013"},{"key":"ref_16","first-page":"333","article-title":"Fertility as a priority among at-risk adolescent males newly diagnosed with cancer and their parents","volume":"23","author":"Klosky","year":"2015","journal-title":"Support. Care Cancer Off. J. Multinatl. Assoc. Support. Care Cancer"},{"key":"ref_17","doi-asserted-by":"crossref","first-page":"935","DOI":"10.1002\/cncr.29133","article-title":"Experiencing reproductive concerns as a female cancer survivor is associated with depression","volume":"121","author":"Gorman","year":"2015","journal-title":"Cancer"},{"key":"ref_18","doi-asserted-by":"crossref","first-page":"1151","DOI":"10.1200\/JCO.2013.52.8877","article-title":"Prospective study of fertility concerns and preservation strategies in young women with breast cancer","volume":"32","author":"Ruddy","year":"2014","journal-title":"J. Clin. Oncol. Off. J. Am. Soc. Clin. Oncol."},{"key":"ref_19","doi-asserted-by":"crossref","first-page":"200","DOI":"10.1007\/s11764-011-0211-9","article-title":"How do you feel about fertility and parenthood? The voices of young female cancer survivors","volume":"6","author":"Gorman","year":"2012","journal-title":"J. Cancer Surviv. Res. Pract."},{"key":"ref_20","doi-asserted-by":"crossref","first-page":"1763","DOI":"10.1016\/j.fertnstert.2016.08.034","article-title":"Which female cancer patients fail to receive fertility counseling before treatment in the state of Georgia?","volume":"106","author":"Chin","year":"2016","journal-title":"Fertil. Steril."},{"key":"ref_21","doi-asserted-by":"crossref","first-page":"1710","DOI":"10.1002\/cncr.26459","article-title":"Pretreatment fertility counseling and fertility preservation improve quality of life in reproductive age women with cancer","volume":"118","author":"Letourneau","year":"2012","journal-title":"Cancer"},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"e45","DOI":"10.1016\/S1470-2045(20)30594-5","article-title":"Fertility preservation for female patients with childhood, adolescent, and young adult cancer: Recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group","volume":"22","author":"Mulder","year":"2021","journal-title":"Lancet Oncol."},{"key":"ref_23","doi-asserted-by":"crossref","first-page":"1602","DOI":"10.1038\/bjc.2013.139","article-title":"Fertility preservation in cancer survivors: A national survey of oncologists\u2019 current knowledge, practice and attitudes","volume":"108","author":"Adams","year":"2013","journal-title":"Br. J. Cancer"},{"key":"ref_24","unstructured":"NORDCAN (2020, October 03). Database Cancer Incidence in Women Aged 18\u201339 in Denmark 2016. Available online: https:\/\/www-dep.iarc.fr\/NORDCAN\/DK\/Table4n.asp?registry=208&sort=0&sex=2&type=0&stat=1&period=2016&submit=Execute."},{"key":"ref_25","unstructured":"(2021, February 25). Copenhagen University Hospital of Copenhagen, Rigshospitalet. Available online: https:\/\/www.rigshospitalet.dk\/om-hospitalet\/organisation\/Sider\/noegletal.aspx."},{"key":"ref_26","doi-asserted-by":"crossref","first-page":"98","DOI":"10.1089\/jayao.2018.0077","article-title":"Developing Age-Appropriate Supportive Facilities, Resources, and Activities for Adolescents and Young Adults with Cancer across Departments and Diagnoses: A Single-Center Experience","volume":"8","author":"Elsbernd","year":"2019","journal-title":"J. Adolesc. Young Adult Oncol."},{"key":"ref_27","unstructured":"Kvale, S. (1996). InterViews: An Introduction to Qualitative Research Interviewing, Sage. [2nd ed.]."},{"key":"ref_28","doi-asserted-by":"crossref","first-page":"795","DOI":"10.1177\/1403494812465030","article-title":"Systematic text condensation: A strategy for qualitative analysis","volume":"40","author":"Malterud","year":"2012","journal-title":"Scand. J. Public Health"},{"key":"ref_29","doi-asserted-by":"crossref","first-page":"26152","DOI":"10.3402\/qhw.v9.26152","article-title":"What can \u201cthematic analysis\u201d offer health and wellbeing researchers?","volume":"9","author":"Braun","year":"2014","journal-title":"Int. J. Qual. Stud. Health Well Being"},{"key":"ref_30","doi-asserted-by":"crossref","first-page":"328","DOI":"10.1097\/PPO.0000000000000344","article-title":"Oncofertility: Meeting the Fertility Goals of Adolescents and Young Adults With Cancer","volume":"24","author":"Lee","year":"2018","journal-title":"Cancer J. Sudbury Mass"},{"key":"ref_31","doi-asserted-by":"crossref","first-page":"338","DOI":"10.1016\/j.pec.2009.09.007","article-title":"Impact of physicians\u2019 personal discomfort and patient prognosis on discussion of fertility preservation with young cancer patients","volume":"77","author":"Quinn","year":"2009","journal-title":"Patient Educ. Couns."},{"key":"ref_32","doi-asserted-by":"crossref","first-page":"20","DOI":"10.1002\/pon.3365","article-title":"Young childless women with breast cancer in the UK: A qualitative study of their fertility-related experiences, options, and the information given by health professionals","volume":"23","author":"Corney","year":"2014","journal-title":"Psychooncology"},{"key":"ref_33","doi-asserted-by":"crossref","first-page":"2","DOI":"10.1186\/s12978-017-0441-z","article-title":"Need for information, honesty and respect: Patient perspectives on health care professionals communication about cancer and fertility","volume":"15","author":"Ussher","year":"2018","journal-title":"Reprod. Health"},{"key":"ref_34","doi-asserted-by":"crossref","first-page":"146","DOI":"10.1007\/s11764-007-0019-9","article-title":"Discussion of fertility preservation with newly diagnosed patients: Oncologists\u2019 views","volume":"1","author":"Quinn","year":"2007","journal-title":"J. Cancer Surviv. Res. Pract."},{"key":"ref_35","doi-asserted-by":"crossref","first-page":"99","DOI":"10.1111\/ecc.12379","article-title":"Talking about fertility in the context of cancer: Health care professional perspectives","volume":"25","author":"Ussher","year":"2016","journal-title":"Eur. J. Cancer Care (Engl.)"},{"key":"ref_36","doi-asserted-by":"crossref","first-page":"748","DOI":"10.1002\/pon.4518","article-title":"Clinician provision of oncofertility support in cancer patients of a reproductive age: A systematic review","volume":"27","author":"Logan","year":"2018","journal-title":"Psychooncology"},{"key":"ref_37","doi-asserted-by":"crossref","first-page":"e27673","DOI":"10.1002\/pbc.27673","article-title":"A qualitative study of sexual and reproductive health communication with adolescent and young adult oncology patients","volume":"66","author":"Frederick","year":"2019","journal-title":"Pediatr. Blood Cancer"},{"key":"ref_38","doi-asserted-by":"crossref","first-page":"575","DOI":"10.1016\/j.ejon.2015.03.003","article-title":"Experiences of teenagers and young adults treated for cancer in Sweden","volume":"19","author":"Olsson","year":"2015","journal-title":"Eur. J. Oncol. Nurs. Off. J. Eur. Oncol. Nurs. Soc."},{"key":"ref_39","doi-asserted-by":"crossref","first-page":"e27087","DOI":"10.1002\/pbc.27087","article-title":"Barriers and facilitators to sexual and reproductive health communication between pediatric oncology clinicians and adolescent and young adult patients: The clinician perspective","volume":"65","author":"Frederick","year":"2018","journal-title":"Pediatr. Blood Cancer"},{"key":"ref_40","doi-asserted-by":"crossref","first-page":"401","DOI":"10.1002\/pon.4502","article-title":"A systematic review of patient oncofertility support needs in reproductive cancer patients aged 14 to 45 years of age","volume":"27","author":"Logan","year":"2018","journal-title":"Psychooncology"},{"key":"ref_41","doi-asserted-by":"crossref","first-page":"126","DOI":"10.1007\/s11764-016-0570-3","article-title":"Barriers to follow-up care among survivors of adolescent and young adult cancer","volume":"11","author":"Kaul","year":"2017","journal-title":"J. Cancer Surviv. Res. Pract."},{"key":"ref_42","doi-asserted-by":"crossref","first-page":"257","DOI":"10.1891\/1541-6577.27.4.257","article-title":"Toward Theoretical Understanding of the Fertility Preservation Decision-Making Process: Examining Information Processing Among Young Women With Cancer","volume":"27","author":"Hershberger","year":"2013","journal-title":"Res. Theory Nurs. Pract."},{"key":"ref_43","doi-asserted-by":"crossref","first-page":"1670","DOI":"10.1200\/JCO.2010.31.2462","article-title":"It\u2019s now or never: Fertility-related knowledge, decision-making preferences, and treatment intentions in young women with breast cancer--an Australian fertility decision aid collaborative group study","volume":"29","author":"Peate","year":"2011","journal-title":"J. Clin. Oncol. Off. J. Am. Soc. Clin. Oncol."},{"key":"ref_44","doi-asserted-by":"crossref","first-page":"3938","DOI":"10.1002\/cncr.29637","article-title":"Impact of fertility preservation counseling and treatment on psychological outcomes among women with cancer: A systematic review","volume":"121","author":"Deshpande","year":"2015","journal-title":"Cancer"},{"key":"ref_45","first-page":"ed62","article-title":"Psychological impact of fertility preservation techniques in women with gynaecological cancer","volume":"11","author":"Rapisarda","year":"2017","journal-title":"Ecancermedicalscience"},{"key":"ref_46","doi-asserted-by":"crossref","first-page":"283","DOI":"10.1080\/03009734.2016.1204394","article-title":"Young female cancer patients\u2019 experiences with fertility counselling and fertility preservation-a qualitative small-scale study within the Danish health care setting","volume":"121","author":"Hoeg","year":"2016","journal-title":"Upsala J. Med. Sci."},{"key":"ref_47","doi-asserted-by":"crossref","first-page":"179","DOI":"10.1016\/j.rbmo.2019.05.016","article-title":"The female post-cancer fertility-counselling clinic: Looking beyond the freezer. A much needed addition to oncofertility care","volume":"39","author":"Macklon","year":"2019","journal-title":"Reprod. Biomed. Online"},{"key":"ref_48","doi-asserted-by":"crossref","unstructured":"Hangh\u00f8j, S., Boisen, K.A., Schmiegelow, K., and H\u00f8lge-Hazelton, B. (2017). Youth friendly communication in a transition clinic aimed at adolescents with chronic illness. Int. J. Adolesc. Med. Health, 32.","DOI":"10.1515\/ijamh-2017-0083"},{"key":"ref_49","doi-asserted-by":"crossref","first-page":"328","DOI":"10.1089\/jayao.2019.0133","article-title":"How Can Health Care Professionals Communicate Effectively with Adolescent and Young Adults Who Have Completed Cancer Treatment? A Systematic Review","volume":"9","author":"Smith","year":"2020","journal-title":"J. Adolesc. Young Adult Oncol."},{"key":"ref_50","doi-asserted-by":"crossref","first-page":"174","DOI":"10.1089\/jayao.2017.0056","article-title":"A Connectedness Primer for Healthcare Providers: Adolescents\/Young Adult Cancer Survivors\u2019 Perspectives on Behaviors That Foster Connectedness During Cancer Treatment and the Resulting Positive Outcomes","volume":"7","author":"Phillips","year":"2018","journal-title":"J. Adolesc. Young Adult Oncol."},{"key":"ref_51","unstructured":"NORDCAN (2020, September 15). Statistics. Available online: https:\/\/www-dep.iarc.fr\/NORDCAN\/DK\/graph8.asp?registry=208&period=2016&period=2015&period=2014&period=2013&period=2012&type=0&age_from=5&age_to=8&sex=2&submit=Udf%F8r."},{"key":"ref_52","doi-asserted-by":"crossref","first-page":"347","DOI":"10.1080\/07347332.2016.1196806","article-title":"Fertility concerns among child and adolescent cancer survivors and their parents: A qualitative analysis","volume":"34","author":"Ellis","year":"2016","journal-title":"J. Psychosoc. Oncol."},{"key":"ref_53","unstructured":"(2021, February 28). Definition of AYA-Age 15\u201339, Available online: https:\/\/www.cancer.gov\/types\/aya."}],"container-title":["Cancers"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2072-6694\/13\/6\/1355\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,11]],"date-time":"2025-10-11T05:37:01Z","timestamp":1760161021000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2072-6694\/13\/6\/1355"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,3,17]]},"references-count":53,"journal-issue":{"issue":"6","published-online":{"date-parts":[[2021,3]]}},"alternative-id":["cancers13061355"],"URL":"https:\/\/doi.org\/10.3390\/cancers13061355","relation":{},"ISSN":["2072-6694"],"issn-type":[{"value":"2072-6694","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,3,17]]}}}