What do families affected by Turner Syndrome think of ovarian tissue freezing in childhood?

References

• Abdallah, Y., Briggs, J., Jones, J., Horne, G., & Fitzgerald, C. (2018). A nationwide UK survey of female fertility preservation prior to cancer treatment. Human Fertility, 21(1), 27–34. https://doi.org/10.1080/14647273.2017.1321787
   PubMed Web of Science ®Google Scholar
• Aidley, D., & Fearon, K. (2021). Doing accessible social research: A practical guide. Policy Press.
   Google Scholar
• Bach, A. S., Macklon, K. T., & Kristensen, S. G. (2020). Futures and fears in the freezer: Danish women’s experiences with ovarian tissue cryopreservation and transplantation. Reproductive Biomedicine Online, 41(3), 555–565. https://doi.org/10.1016/j.rbmo.2020.06.009
   PubMed Web of Science ®Google Scholar
• Bahíllo-Curieses, M. P., Galbis-Soto, S., & Mombiedro-Arizmendi, M. C. (2016). Diagnosis of turner syndrome in two mothers following their daughters’ diagnosis. Endocrine, 53(1), 337–338. https://doi.org/10.1007/s12020-016-0879-8
   PubMed Web of Science ®Google Scholar
• Barlevy, D., Wangmo, T., Elger, B. S., & Ravitsky, V. (2016). Attitudes, beliefs, and trends regarding adolescent oncofertility discussions: A systematic literature review. Journal of Adolescent and Young Adult Oncology, 5(2), 119–134. https://doi.org/10.1089/jayao.2015.0055
   PubMed Web of Science ®Google Scholar
• Beresford, B., & Sloper, T. (2008). Understanding the dynamics of decision-making and choice: A scoping study of key psychological theories to inform the design and analysis of the panel study. Social Policy Research Unit, University of York.
   Google Scholar
• Bernard, V., Donadille, B., Zenaty, D., Courtillot, C., Salenave, S., Brac de la Perrière, A., Albarel, F., Fèvre, A., Kerlan, V., Brue, T., Delemer, B., Borson-Chazot, F., Carel, J. C., Chanson, P., Léger, J., Touraine, P., & Christin-Maitre, S. (2016). Spontaneous fertility and pregnancy outcomes amongst 480 women with Turner syndrome. Human Reproduction, 31(4), 782–788. https://doi.org/10.1093/humrep/dew012
   PubMed Web of Science ®Google Scholar
• Burt, E., Davies, M., Ephia, Y., Cameron-Pimblett, A., & Conway, G. (2021). Pregnancy outcome in Turner syndrome’. Fertility 2021 Barriers and breakthroughs 6–10th January 2021. Human Fertility, 24(1), 46–69. https://doi.org/10.1080/14647273.2021.1872160
   Google Scholar
• Calanchini, M., Baker, K., Fabbri, A., Grossman, A., Orchard, E., Child, T., & Turner, H. (2017). Oocyte donation in women with Turner. Endocrine Abstracts, 49, EP1145. https://doi.org/10.1530/endoabs.49.EP1145
   Google Scholar
• Cameron-Pimblett, A., La Rosa, C., King, T. F. J., Davies, M. C., & Conway, G. S. (2017). The Turner syndrome life course project: Karyotype-phenotype analyses across the lifespan. Clinical Endocrinology, 87(5), 532–538. https://doi.org/10.1111/cen.13394
   PubMed Web of Science ®Google Scholar
• Cauldwell, M., Steer, P. J., Adamson, D., Alexander, C., Allen, L., Bhagra, C., Bolger, A., Bonner, S., Calanchini, M., Carroll, A., Casey, R., Curtis, S., Head, C., English, K., Hudsmith, L., James, R., Joy, E., Keating, N., MacKiliop, L., McAuliffe, F., … Turner, H. E. (2022). Pregnancies in women with Turner syndrome: A retrospective multicentre UK study. An International Journal of Obstetrics and Gynaecology, 129(5), 796–803. https://doi.org/10.1111/1471-0528.17025
   Google Scholar
• Charmaz, K. (2014). Constructing grounded theory. SAGE.
   Google Scholar
• Collin, J. (2013). The perceived information needs of girls with turner syndrome and their parents [Unpublished dissertation (PhD)]. The University of Manchester.
   Google Scholar
• Condorelli, M., & Demeestere, I. (2019). Challenges of fertility preservation in non-oncological diseases. Acta Obstetricia et Gynecologica Scandinavica, 98(5), 638–646. https://doi.org/10.1111/aogs.13577
   PubMed Web of Science ®Google Scholar
• Demeestere, I., Simon, P., Dedeken, L., Moffa, F., Tsépélidis, S., Brachet, C., Delbaere, A., Devreker, F., & Ferster, A. (2015). Live birth after autograft of ovarian tissue cryopreserved during childhood. Human Reproduction, 30(9), 2107–2109. https://doi.org/10.1093/humrep/dev128
   PubMed Web of Science ®Google Scholar
• Di Iorio, C., Kelley, M., & Hockenberry-Eaton, M. (1999). Communication about sexual issues: Mothers, fathers, and friends. The Journal of Adolescent Health, 24(3), 181–189. https://doi.org/10.1016/s1054-139x(98)00115-3
   PubMed Web of Science ®Google Scholar
• Donnez, J., Dolmans, M. M., Demylle, D., Jadoul, P., Pirard, C., Squifflet, J., Martinez-Madrid, B., & van Langendonckt, A. (2004). Livebirth after orthotopic transplantation of cryopreserved ovarian tissue. Lancet, 364(9443), 1405–1410. https://doi.org/10.1016/S0140-6736(04)17222-X
   PubMed Web of Science ®Google Scholar
• Donnez, J., & Dolmans, M. M. (2017). Fertility preservation in women. New England Journal of Medicine, 377(17), 1657–1665. https://doi.org/10.1056/NEJMra1614676
   PubMed Web of Science ®Google Scholar
• Donnez, J., Dolmans, M. M., Squifflet, J., Kerbrat, G., & Jadoul, P. (2011). Live birth after allografting of ovarian cortex between monozygotic twins with Turner syndrome (45,XO/46,XX mosaicism) and discordant ovarian function. Fertility and Sterility, 96(6), 1407–1411. https://doi.org/10.1016/j.fertnstert.2011.09.012
   PubMed Web of Science ®Google Scholar
• Dotters-Katz, S. K., Humphrey, W. M., Senz, K. L., Lee, V. R., Shaffer, B. L., & Caughey, A. B. (2016). The effects of turner syndrome, 45,X on obstetric and neonatal outcomes: A retrospective cohort evaluation. American Journal of Perinatology, 33(12), 1152–1158. https://doi.org/10.1055/s-0036-1585083
   PubMed Web of Science ®Google Scholar
• Dudgeon, M. R., & Inhorn, M. C. (2004). Men’s influences on women’s reproductive health: Medical anthropological perspectives. Social Science & Medicine, 59(7), 1379–1395. https://doi.org/10.1016/j.socscimed.2003.11.035
   PubMed Web of Science ®Google Scholar
• ESHRE Guideline Group on Female Fertility Preservation, Anderson, R. A., Amant, F., Braat, D., D’Angelo, A., Chuva de Sousa Lopes, S. M., Demeestere, I., Dwek, S., Frith, L., Lambertini, M., Maslin, C., Moura-Ramos, M., Nogueira, D., Rodriguez-Wallberg, K., & Vermeulen, N. (2020). ESHRE guideline: Female fertility preservation. Human Reproduction Open, 2020(4), hoaa052. https://doi.org/10.1093/hropen/hoaa052
   PubMedGoogle Scholar
• Falsey, E., Cirino, A. L., Snyder, E., Steeves, M., & Lin, A. E. (2022). Parenthood among individuals with Turner syndrome: Results of an online survey of attitudes towards pregnancy, adoption, and surrogacy. Journal of Community Genetics, 13(3), 263–270. https://doi.org/10.1007/s12687-022-00588-x
   PubMed Web of Science ®Google Scholar
• Fearon, K. (2019). ‘Have you ever talked to any women with Turner syndrome?’ Using universal design and photo elicitation interviews in research with women with mild cognitive impairment. Methodological Innovations, 12(2), 205979911984193. https://doi.org/10.1177/2059799119841933
   Google Scholar
• Fearon, K. (2020). Reproductive decision-making, parenthood and the use of assisted conception: An exploratory study of the perceptions and experiences of women with Turner Syndrome [PhD Thesis]. De Montfort University.
   Google Scholar
• Gould, H. N., Bakalov, V. K., Tankersley, C., & Bondy, C. A. (2013). High levels of education and employment among women with Turner syndrome. Journal of Women’s Health, 22(3), 230–235. https://doi.org/10.1089/jwh.2012.3931
   PubMed Web of Science ®Google Scholar
• Gravholt, C. H., Andersen, N. H., Conway, G. S., Dekkers, O. M., Geffner, M. E., Klein, K. O., Lin, A. E., Mauras, N., Quigley, C. A., Rubin, K., Sandberg, D. E., Sas, T. C. J., Silberbach, M., Söderström-Anttila, V., Stochholm, K., van Alfen-van derVelden, J. A., Woelfle, J., & Backeljauw, P. F., (2017). Clinical practice guidelines for the care of girls and women with Turner syndrome: Proceedings from the 2016 Cincinnati International Turner Syndrome Meeting. European Journal of Endocrinology, 177(3), G1–G70. https://doi.org/10.1530/EJE-17-0430
   PubMed Web of Science ®Google Scholar
• Grynberg, M., Bidet, M., Benard, J., Poulain, M., Sonigo, C., Cédrin-Durnerin, I., & Polak, M. (2016). Fertility preservation in Turner syndrome. Fertility and Sterility, 105(1), 13–19. https://doi.org/10.1016/j.fertnstert.2015.11.042
   PubMed Web of Science ®Google Scholar
• Harper, D. (2003). Framing photographic ethnography: A case study. Ethnography, 4(2), 241–266. https://www.jstor.org/stable/24047811 https://doi.org/10.1177/14661381030042005
   Google Scholar
• Hewitt, J. K., Jayasinghe, Y., Amor, D. J., Gillam, L. H., Warne, G. L., Grover, S., & Zacharin, M. R. (2013). Fertility in Turner syndrome. Clinical Endocrinology, 79(5), 606–614. https://doi.org/10.1111/cen.12288
   PubMed Web of Science ®Google Scholar
• Hinkle, K., Orwig, K. E., Valli-Pulaski, H., Taylor, S., van Leeuwen, K., Carpentieri, D., & Walsh, A. (2021). Cryopreservation of Ovarian tissue for pediatric fertility. Biopreservation and Biobanking, 19(2), 130–135. https://doi.org/10.1089/bio.2020.0124
   PubMed Web of Science ®Google Scholar
• Jadoul, P., Dolmans, M. M., & Donnez, J. (2010). Fertility preservation in girls during childhood: Is it feasible, efficient and safe and to whom should it be proposed? Human Reproduction Update, 16(6), 617–630. https://doi.org/10.1093/humupd/dmq010
   PubMed Web of Science ®Google Scholar
• Jayasuriya, S., Peate, M., Allingham, C., Li, N., Gillam, L., Zacharin, M., Downie, P., Moore, P., Super, L., Orme, L., Agresta, F., Stern, C., & Jayasinghe, Y. (2019). Satisfaction, disappointment and regret surrounding fertility preservation decisions in the paediatric and adolescent cancer population. Journal of Assisted Reproduction and Genetics, 36(9), 1805–1822. https://doi.org/10.1007/s10815-019-01536-4
   PubMed Web of Science ®Google Scholar
• Jeve, Y. B., Gelbaya, T., & Fatum, M. (2019). Time to consider ovarian tissue cryopreservation for girls with Turner’s syndrome: An opinion paper. Human Reproduction Open, 2019(3), hoz016. https://doi.org/10.1093/hropen/hoz016
   PubMedGoogle Scholar
• Karnis, M. F., Zimon, A. E., Lalwani, S. I., Timmreck, L. S., Klipstein, S., & Reindollar, R. H. (2003). Risk of death in pregnancy achieved through oocyte donation in patients with Turner syndrome: A national survey. Fertility and Sterility, 80(3), 498–501. https://doi.org/10.1016/s0015-0282(03)00974-9
   PubMed Web of Science ®Google Scholar
• La Rosa, V. L., Shah, M., Kahramanoglu, I., Cerentini, T. M., Ciebiera, M., Lin, L. T., Dirnfeld, M., Minona, P., & Tesarik, J. (2020). Quality of life and fertility preservation counseling for women with gynecological cancer: An integrated psychological and clinical perspective. Journal of Psychosomatic Obstetrics & Gynecology, 41(2), 86–92. https://doi.org/10.1080/0167482X.2019.1648424
   PubMed Web of Science ®Google Scholar
• Latif, S., Martins Da Silva, S., Davies, M., Mavrelos, D., Foo, X., Sangster, P., Lane, S., & Yasmin, E. (2022). Fertility preservation provision in the NHS: A national assessment of care policies. Human Fertility, 1–6. Advance online publication. https://doi.org/10.1080/14647273.2022.2045519
   Web of Science ®Google Scholar
• Liamputtong, P. (2007). Researching the vulnerable: A guide to sensitive research methods. SAGE. https://doi.org/10.4135/9781849209861
   Google Scholar
• Lotz, L., Barbosa, P. R., Knorr, C., Hofbeck, L., Hoffmann, I., Beckmann, M. W., Antoniadis, S., & Dittrich, R. (2020). The safety and satisfaction of ovarian tissue cryopreservation in prepubertal and adolescent girls. Reproductive BioMedicine Online, 40(4), 547–554. https://doi.org/10.1016/j.rbmo.2020.01.009
   PubMed Web of Science ®Google Scholar
• Mamsen, L. S., Charkiewicz, K., Anderson, R. A., Telfer, E. E., McLaughlin, M., Kelsey, T. W., Kristensen, S. G., Gook, D. A., Ernst, E., & Andersen, C. Y. (2019). Characterization of follicles in girls and young women with Turner syndrome who underwent ovarian tissue cryopreservation. Fertility and Sterility, 111(6), 1217–1225.e3. https://doi.org/10.1016/j.fertnstert.2019.02.003
   PubMed Web of Science ®Google Scholar
• Mavridi, A., Ntali, G., Theodora, M., Stamatelopoulos, K., & Michala, L. (2018). A spontaneous pregnancy in a patient with turner syndrome with 45,X/47,XXX mosaicism: A case report and review of the literature. Journal of Pediatric and Adolescent Gynecology, 31(6), 651–654. https://doi.org/10.1016/j.jpag.2018.07.005
   PubMed Web of Science ®Google Scholar
• Moreno-Sepulveda, J., & Checa, M. A. (2019). Risk of adverse perinatal outcomes after oocyte donation: A systematic review and meta-analysis. Journal of Assisted Reproduction and Genetics, 36(10), 2017–2037. https://doi.org/10.1007/s10815-019-01552-4
   PubMed Web of Science ®Google Scholar
• National Institute for Health and Care Excellence. (2013). Quality statement 9: Cryopreservation before cancer treatment [NICE Guideline No. CG156, recommendations 1.16.1.8 and 1.16.1.10]. https://www.nice.org.uk/guidance/qs73/chapter/Quality-statement-9-Cryopreservation-before-cancer-treatment
   Google Scholar
• Oktay, K., Rodriguez-Wallberg, K. A., & Sahin, G. (2010). Fertility preservation by ovarian stimulation and oocyte cryopreservation in a 14-year-old adolescent with Turner syndrome mosaicism and impending premature ovarian failure. Fertility and Sterility, 94(2), 753.e15–753.e7.53E19. https://doi.org/10.1016/j.fertnstert.2010.01.044
   PubMed Web of Science ®Google Scholar
• Oktay, K., & Bedoschi, G. (2019). Fertility preservation in girls with Turner syndrome: Limitations, current success and future prospects. Fertility and Sterility, 111(6), 1124–1126. https://doi.org/10.1016/j.fertnstert.2019.03.018
   PubMed Web of Science ®Google Scholar
• Periquito, I., Carrusca, C., Morgado, J., Robalo, B., Pereira, C., & de Lurdes Sampaio, M. (2016). Familial Turner syndrome: The importance of information. Journal of Pediatric Endocrinology and Metabolism, 29(5), 617–620. https://doi.org/10.1515/jpem-2015-0277
   PubMed Web of Science ®Google Scholar
• Portnoï, M. F., Chantot-Bastaraud, S., Christin-Maitre, S., Carbonne, B., Beaujard, M. P., Keren, B., Lévy, J., Dommergues, M., Cabrol, S., Hyon, C., & Siffroi, J. P. (2012). Familial Turner syndrome with an X;Y translocation mosaicism: Implications for genetic counseling. European Journal of Medical Genetics, 55(11), 635–640. https://doi.org/10.1016/j.ejmg.2012.07.001
   PubMed Web of Science ®Google Scholar
• Schleedoorn, M. J., Mulder, B. H., Braat, D. D. M., Beerendonk, C. C. M., Peek, R., Nelen, W. L. D. M., Van Leeuwen, E., Van der Velden, A. A. E. M., & Fleischer, K. (2020). International consensus: Ovarian tissue cryopreservation in young Turner syndrome patients: Outcomes of an ethical Delphi study including 55 experts from 16 different countries. Human Reproduction, 35(5), 1061–1072. https://doi.org/10.1093/humrep/deaa007
   PubMed Web of Science ®Google Scholar
• Strypstein, L., Van Moer, E., Nekkebroeck, J., Segers, I., Tournaye, H., Demeestere, I., Dolmans, M. M., Verpoest, W., & De Vos, M. (2022). First live birth after fertility preservation using vitrification of oocytes in a woman with mosaic Turner syndrome. Journal of Assisted Reproduction and Genetics, 39(2), 543–549. https://doi.org/10.1007/s10815-022-02420-4
   PubMed Web of Science ®Google Scholar
• Sutton, E. J., McInerney-Leo, A., Bondy, C. A., Gollust, S. E., King, D., & Biesecker, B. (2005). Turner syndrome: Four challenges across the lifespan. American Journal of Medical Genetics, 139A(2), 57–66. https://doi.org/10.1002/ajmg.a.30911
   PubMed Web of Science ®Google Scholar
• Swain, C. R., Ackerman, L. K., & Ackerman, M. A. (2006). The influence of individual characteristics and contraceptive beliefs on parent-teen sexual communications: A structural model. The Journal of Adolescent Health, 38(6), 753.e9–753.e7.53E18. https://doi.org/10.1016/j.jadohealth.2005.08.015
   PubMedGoogle Scholar
• van der Coelen, S., van der Velden, J., Nadesapillai, S., Peek, R., Braat, D., Schleedoorn, M., Fleischer, K., & Oerlemans, A. (2022). The decision-making process regarding Ovarian tissue cryopreservation in girls with turner syndrome by patients, parents, and healthcare providers: A mixed-methods study. Hormone Research in Paediatrics, 95(4), 374–383. https://doi.org/10.1159/000525374
   PubMed Web of Science ®Google Scholar
• Yasmin, E., Balachandren, N., Davies, M. C., Jones, G. L., Lane, S., Mathur, R., Webber, L., & Anderson, R. A. (2018). Fertility preservation for medical reasons in girls and women: British Fertility Ssociety policy and practice guideline. Human Fertility, 21(1), 3–26. https://doi.org/10.1080/14647273.2017.1422297
   PubMed Web of Science ®Google Scholar