National Guidelines and Multilingual Age‐adapted Patient Brochures and Videos As Decision Aids for Fertility Preservation (FP) of Children and Teenagers with Cancer—a Multidisciplinary Effort to Improve Children's Information and Access to FP in Sweden

Acta Obstetricia et Gynecologica ScandinavicaVolume 98, Issue 5 p. 679-680 LETTER TO THE EDITORFree Access National guidelines and multilingual age-adapted patient brochures and videos as decision aids for fertility preservation (FP) of children and teenagers with cancer—A multidisciplinary effort to improve children's information and access to FP in Sweden Kenny A. Rodriguez-Wallberg, Corresponding Author Kenny A. Rodriguez-Wallberg kenny.rodriguez-wallberg@ki.se orcid.org/0000-0003-4378-6181 Department of Oncology and Pathology, Karolinska Institutet, Stockholm, Sweden Division of Gynecology and Reproduction, Department of Reproductive Medicine, Karolinska University Hospital, Stockholm, Sweden Correspondence Kenny A. Rodriguez-Wallberg Email: kenny.rodriguez-wallberg@ki.seSearch for more papers by this authorBirgit Borgström, Birgit Borgström Division of Pediatrics, CLINTEC, Karolinska Institutet, Stockholm, SwedenSearch for more papers by this authorCecilia Petersen, Cecilia Petersen Pediatric Oncology Unit, Queen Silvia Children's Hospital, Sahlgrenska University Hospital, Gothenburg, SwedenSearch for more papers by this authorAnn Thurin-Kjellberg, Ann Thurin-Kjellberg Department of Obstetrics and Gynecology, Institute of Clinical Sciences, Sahlgrenska Academy, Gothenburg University, Gothenburg, Sweden Reproductive Medicine, Sahlgrenska University Hospital, Gothenburg, SwedenSearch for more papers by this authorHelena Mörse, Helena Mörse Department of Pediatric Oncology, Skåne University Hospital, Lund, SwedenSearch for more papers by this authorAleksander Giwercman, Aleksander Giwercman Division of Molecular Reproductive Medicine, Department of Translational Medicine, Lund University, Malmö, SwedenSearch for more papers by this authorMarianne Jarfelt, Marianne Jarfelt Department of Pediatrics, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden Swedish National Guidelines for Long-Term Follow-Up of Childhood Cancer, Confederation of Regional Cancer Centers, SwedenSearch for more papers by this author On behalf of the Work Group UNGA (YOUNG) for the Swedish Association of Local Authorities and Regions, SALAR (Sveriges Kommuner och Landsting, SKL), the Work Group UNGA (YOUNG) for the Swedish Association of Local Authorities and Regions, SALAR (Sveriges Kommuner och Landsting, SKL)Search for more papers by this author Kenny A. Rodriguez-Wallberg, Corresponding Author Kenny A. Rodriguez-Wallberg kenny.rodriguez-wallberg@ki.se orcid.org/0000-0003-4378-6181 Department of Oncology and Pathology, Karolinska Institutet, Stockholm, Sweden Division of Gynecology and Reproduction, Department of Reproductive Medicine, Karolinska University Hospital, Stockholm, Sweden Correspondence Kenny A. Rodriguez-Wallberg Email: kenny.rodriguez-wallberg@ki.seSearch for more papers by this authorBirgit Borgström, Birgit Borgström Division of Pediatrics, CLINTEC, Karolinska Institutet, Stockholm, SwedenSearch for more papers by this authorCecilia Petersen, Cecilia Petersen Pediatric Oncology Unit, Queen Silvia Children's Hospital, Sahlgrenska University Hospital, Gothenburg, SwedenSearch for more papers by this authorAnn Thurin-Kjellberg, Ann Thurin-Kjellberg Department of Obstetrics and Gynecology, Institute of Clinical Sciences, Sahlgrenska Academy, Gothenburg University, Gothenburg, Sweden Reproductive Medicine, Sahlgrenska University Hospital, Gothenburg, SwedenSearch for more papers by this authorHelena Mörse, Helena Mörse Department of Pediatric Oncology, Skåne University Hospital, Lund, SwedenSearch for more papers by this authorAleksander Giwercman, Aleksander Giwercman Division of Molecular Reproductive Medicine, Department of Translational Medicine, Lund University, Malmö, SwedenSearch for more papers by this authorMarianne Jarfelt, Marianne Jarfelt Department of Pediatrics, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden Swedish National Guidelines for Long-Term Follow-Up of Childhood Cancer, Confederation of Regional Cancer Centers, SwedenSearch for more papers by this author On behalf of the Work Group UNGA (YOUNG) for the Swedish Association of Local Authorities and Regions, SALAR (Sveriges Kommuner och Landsting, SKL), the Work Group UNGA (YOUNG) for the Swedish Association of Local Authorities and Regions, SALAR (Sveriges Kommuner och Landsting, SKL)Search for more papers by this author First published: 21 February 2019 https://doi.org/10.1111/aogs.13588Citations: 17AboutSectionsPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat Sir, Despite several evidence-based guidelines available to promote fertility preservation (FP) for young patients and children, young patients still report FP as one of the top five unmet needs during their cancer care.1 Surveys have identified barriers that limit patients' access to FP, including organization-related barriers, such as lack of inter-professional cooperation, unclear referral paths for FP and the cost of the procedures.2-4 Organizational issues are particularly a problem for young female patients, who may retain fertility potential after cancer treatment during childhood but have a high risk of developing premature ovarian failure once they reach adulthood. When transitioning from childhood care to adult healthcare, routines for surveillance of infertility risks are lacking. An organization for surveillance of ovarian function is needed to give these patients the opportunity to preserve their fertility before an early menopause. Additionally, although a high proportion of practicing pediatric oncologists recognizes that it is their responsibility to discuss possible fertility impairment following treatment, they also acknowledge low confidence in their knowledge about FP methods.5 In Sweden, all university hospitals covering large regions/counties have developed programs for FP. Currently established FP strategies, including the cryopreservation of sperms, oocytes or embryos,6 are offered free of charge to patients, when indicated for medical reasons, within the tax-funded healthcare system. Previous research has evidenced inequalities in cancer patients' access to counseling and FP despite this healthcare platform.7 Methods that are still considered experimental or under development for FP of children, such as the cryopreservation of ovarian tissue and the cryopreservation of pre-pubertal testicular tissue,6, 8 are restricted to centers that have Ethics Review Board-approved research protocols. To ensure that healthcare providers become familiar with the methods for FP options and that these could be offered to patients in Sweden regardless of their residence, the Swedish Association of Local Authorities and Regions requested national guidelines. A multidisciplinary working group including specialists in reproductive medicine, pediatric oncology, pediatric endocrinology, andrology and assisted reproductive technologies from the Swedish University Hospitals was set up in 2012. The work was summarized in a comprehensive document that describes the group of patients that should be offered FP due to a substantial risk of infertility following cytotoxic treatment of cancer during childhood and adolescence, and the available methods. The guidelines are in line with international recommendations, adapted to the Swedish healthcare system, and intended to be supportive to healthcare personnel in facilitating discussions about FP with pediatric cancer patients and their guardians/relatives. The final recommendations highlight the importance of providing complete and accurate information on the current methods for FP but also their limitations, as well as the provision of information on alternative routes to becoming a parent in the future, such as gamete donation and adoption. Fertility-related information should be provided by healthcare personnel with training in that field. Supportive care by a psychologist or counselor is recommended to assist patients and their families in decision-making. The guidelines also specifically recommend that fertility counseling is offered to evaluate opportunities for undergoing FP after completion of cancer treatment, whenever FP was not possible or performed before the initiation of cancer treatment. This often occurs due to the frequent need to start treatment immediately and/or at a very young age. One suggested time-point for check up is when the children complete their follow up at the pediatric clinic when reaching adult age and are referred to adult healthcare services. Since 2016, the follow up of patients treated for childhood cancer has been standardized through a healthcare program in Sweden.9 After completion, the guidelines were submitted on a cycle of referrals to: academic associations for pediatrics, oncology, endocrinology and reproductive medicine in Sweden; the head and responsible clinician for each of Sweden's pediatric oncology centers; local and county authorities for healthcare provision; pediatric oncology nurses; the Swedish Ethical Council; patient associations; and stakeholders. After approval, the document was made public on the Swedish Human Tissue Authority's website in 2015 (www.vavnad.se).10 The working group recognized the need to periodically update the guidelines in the future, according to relevant advances in reproductive medicine and research. Booklets to provide age-adapted patient information to young children or older adolescents were also created, and these have been available online since November 2017 in Swedish, English, Finnish, Spanish and Arabic. Videos for teenagers explaining reproductive biological facts, the negative impact of cancer treatment on fertility and the available methods for FP are also available on the website (see Supporting Information Appendix S1). Funding information The UNGA network meetings for production of the Swedish guidelines were supported by the Swedish Association of Local Authorities and Regions, SALAR (Sveriges Kommuner och Landsting, SKL). This work was supported by research grants from Stockholm County Council and Karolinska Institutet, the Swedish Childhood Cancer Foundation and the Swedish Cancer Society to K.R.-W. Supporting Information Filename Description aogs13588-sup-0001-AppendixS1.docWord document, 29.5 KB Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article. REFERENCES 1Klosky JL, Simmons JL, Russell KM, et al. Fertility as a priority among at-risk adolescent males newly diagnosed with cancer and their parents. Support Care Cancer. 2015; 23: 333- 341. 2Vadaparampil ST, Clayton H, Quinn GP, King LM, Nieder M, Wilson C. Pediatric oncology nurses' attitudes related to discussing fertility preservation with pediatric cancer patients and their families. J Pediatr Oncol Nurs. 2007; 24: 255- 263. 3Micaux Obol C, Armuand GM, Rodriguez-Wallberg KA, et al. Oncologists and hematologists' perceptions of fertility-related communication—a nationwide survey. Acta Oncol. 2017; 56: 1103- 1110. 4Quinn GP, Vadaparampil ST, Gwede CK, et al. Discussion of fertility preservation with newly diagnosed patients: oncologists' views. J Cancer Surviv. 2007; 1: 146- 155. 5Armuand GM, Nilsson J, Rodriguez-Wallberg KA, et al. Physicians' self-reported practice behaviour regarding fertility-related discussions in paediatric oncology in Sweden. Psychooncology. 2017; 26: 1684- 1690. 6Oktay K, Harvey BE, Partridge AH, et al. Fertility preservation in patients with cancer: ASCO clinical practice guideline update. J Clin Oncol. 2018; 36: 1994- 2001. 7Armuand GM, Rodriguez-Wallberg KA, Wettergren L, et al. Sex differences in fertility-related information received by young adult cancer survivors. J Clin Oncol. 2012; 30: 2147- 2533. 8Rodriguez-Wallberg KA, Oktay K. Fertility preservation medicine: options for young adults and children with cancer. J Pediatr Hematol Oncol. 2010; 32: 390- 396. 9 Swedish National Guidelines for Long-Term Follow-Up of Childhood Cancer. https://www.cancercentrum.se/samverkan/cancerdiagnoser/barn/vardprogram. Accessed January 14, 2019. 10 Swedish National guidelines for fertility preservation of young patients facing treatments with risk of inducing infertility. http://vavnad.se/wp-content/uploads/2016/11/framjande-av-reproduktionsformaga-unga-v1-00.pdf. Accessed January 14, 2019. Citing Literature Volume98, Issue5Special Issue: Fertility Preservation for Women and GirlsMay 2019Pages 679-680 ReferencesRelatedInformation