Deciding on future fertility: considerations of girls with Turner syndrome and their parents to opt for or against ovarian tissue cryopreservation
Open accessAbstract
RESEARCH QUESTION: What are the considerations of girls with Turner syndrome and their parents to opt for or against ovarian tissue cryopreservation (OTC)? DESIGN: Semi-structured in-depth interviews were conducted with girls with Turner syndrome and their parents until data saturation was reached. Participants were recruited through purposive sampling. Data were analysed using a thematic analysis approach. RESULTS: Thirteen parents and five girls who opted for OTC, and seven parents and three girls who declined OTC, were interviewed. Parents and girls mentioned that OTC offered hope, an opportunity to have genetic offspring and clarity about their current fertility status. Most participants were not afraid of the risks of surgery and trusted healthcare providers with this procedure. In contrast, families had to deal with uncertainties, owing to the lack of information on the success rate and long-term consequences of OTC in this group. Families indicated that they had to go through an important decision-making process in a short period of time, because of the limited number of participants in the OTC study. CONCLUSION: A new opportunity and hope for future fertility were considerations for opting for OTC. However, OTC also came with uncertainties owing to the experimental nature of this procedure in girls with Turner syndrome. Healthcare providers could share these experiences with girls with Turner syndrome and their parents to improve fertility-preservation counselling in this group.
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Early referral for fertility preservation, including for pre-adolescent or adolescent individuals with TS, might improve outcomes.
“Early referral for fertility preservation—including for pre-adolescent or adolescent individuals with TS—might improve outcomes572,623 and allow time to consider goals/implications and the possibility of fertility preservation.”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [623]
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Cites
Using thematic analysis in psychology
Braun, V., & Clarke, V. (2006) · Qualitative Research in Psychology · doi:10.1191/1478088706qp063oa · Cited by 194,414 · see citing works
Tong, A., Sainsbury, P., & Craig, J. (2007) · International Journal for Quality in Health Care · doi:10.1093/intqhc/mzm042 · Cited by 42,509 · see citing works
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., et al. (2017) · European Journal of Endocrinology · doi:10.1530/eje-17-0430 · Cited by 1,101 · see citing works
Prevalence, incidence, diagnostic delay, and mortality in Turner syndrome
Stochholm, K., Juul, S., Juel, K., Naeraa, R. W., & Højbjerg Gravholt, C. (2006) · The Journal of Clinical Endocrinology & Metabolism · doi:10.1210/jc.2006-0558 · Cited by 652 · see citing works
Dolmans, M., von Wolff, M., Poirot, C., Díaz‐García, C., Cacciottola, L., Boissel, N., Liebenthron, J., Pellicer, A., Donnez, J., & Andersen, C. Y. (2021) · Fertility and Sterility · doi:10.1016/j.fertnstert.2021.03.008 · Cited by 341 · see citing works
van der Ven, H., Liebenthron, J., Beckmann, M. W., Tóth, B., Korell, M., Krüssel, J.-S., Frambach, T., Kupka, M. S., Höhl, M., Winkler-Crepaz, K., et al. (2016) · Human Reproduction · doi:10.1093/humrep/dew165 · Cited by 310 · see citing works
Spontaneous fertility and pregnancy outcomes amongst 480 women with Turner syndrome
Bernard, V., Donadille, B., Zenaty, D., Courtillot, C., Salenave, S., Brac de la Perrière, A., Albarel, F., Fèvre, A., Kerlan, V., Brue, T., et al. (2016) · Human Reproduction · doi:10.1093/humrep/dew012 · Cited by 266 · see citing works
Birgit, B., Julius, H., Carsten, R., Maryam, S., Gabriel, F., Victoria, K., Margareta, F., & Outi, H. (2009) · The Journal of Clinical Endocrinology & Metabolism · doi:10.1210/jc.2008-0708 · Cited by 254 · see citing works
Accelerated germ cell apoptosis in sex chromosome aneuploid fetal human gonads
Modi, D. N. (2003) · Molecular Human Reproduction · doi:10.1093/molehr/gag031 · Cited by 253 · see citing works
Saenger, P. H. (1996) · New England Journal of Medicine · doi:10.1056/nejm199612053352307 · Cited by 248 · see citing works
Jadoul, P., Guilmain, A., Squifflet, J. P., Luyckx, M., Votino, R., Wyns, C., & Dolmans, M. (2017) · Human Reproduction · doi:10.1093/humrep/dex040 · Cited by 211 · see citing works
Oktay, K., Bedoschi, G., Berkowitz, K. M., BRONSON, R. A., Kashani, B. N., McGovern, P. G., Pal, L., Quinn, G. P., & Rubin, K. (2015) · Journal of Pediatric and Adolescent Gynecology · doi:10.1016/j.jpag.2015.10.011 · Cited by 210 · see citing works
Follicles Are Found in the Ovaries of Adolescent Girls with Turner's Syndrome
Hreinsson, J. G., Otala, M., Fridström, M., Borgström, B., Rasmussen, C., Lundqvist, M., Tuuri, T., Simberg, N. H., Mikkola, M., Dunkel, L., et al. (2002) · The Journal of Clinical Endocrinology & Metabolism · doi:10.1210/jcem.87.8.8753 · Cited by 192 · see citing works
Turner syndrome: four challenges across the lifespan
Sutton, E. J., McInerney‐Leo, A., Bondy, C. A., Gollust, S. E., King, D., & Biesecker, B. (2005) · American Journal of Medical Genetics Part A · doi:10.1002/ajmg.a.30911 · Cited by 171 · see citing works
Hadnott, T. N., Gould, H. N., Gharib, A. M., & Bondy, C. A. (2011) · Fertility and Sterility · doi:10.1016/j.fertnstert.2011.03.085 · Cited by 153 · see citing works
Dittrich, R., Hackl, J., Lotz, L., et al. (2014) · Fertility and Sterility · doi:10.1016/j.fertnstert.2014.10.045 · Cited by 148 · see citing works
Number of ovarian follicles in human fetuses with the 45,x karyotype
Reynaud, K., Cortvrindt, R. G., Verlinde, F., Schepper, J. D., Bourgain, C., & Smitz, J. E. J. (2004) · Fertility and Sterility · doi:10.1016/j.fertnstert.2003.12.011 · Cited by 146 · see citing works
Fertility preservation in Turner syndrome
Grynberg, M., Bidet, M., Bénard, J., Poulain, M., Sonigo, C., Cédrin‐Durnerin, I., & Polak, M. (2015) · Fertility and Sterility · doi:10.1016/j.fertnstert.2015.11.042 · Cited by 124 · see citing works
Recent advances in fertility preservation
Dolmans, M., & Manavella, D. D. (2018) · Journal of obstetrics and gynaecology research · doi:10.1111/jog.13818 · Cited by 103 · see citing works
Ginsberg, J. P., Li, Y., Carlson, C. A., Gracia, C. R., Hobbie, W. L., Miller, V. A., Mulhall, J. P., Shnorhavorian, M., Brinster, R. L., & Kolon, T. F. (2014) · Pediatric Blood & Cancer · doi:10.1002/pbc.25078 · Cited by 102 · see citing works
Reproductive Issues in Women with Turner Syndrome
Folsom, L. J., & Fuqua, J. S. (2015) · Endocrinology and Metabolism Clinics of North America · doi:10.1016/j.ecl.2015.07.004 · Cited by 79 · see citing works
Peek, R., Schleedoorn, M., Smeets, D., van de Zande, G., Groenman, F., Braat, D., van der Velden, J., & Fleischer, K. (2019) · Human Reproduction · doi:10.1093/humrep/dez135 · Cited by 67 · see citing works
Self-citationLife with Turner's syndrome—a psychosocial report from 22 middle-aged women
Sylvén, L., Magnusson, C., Hagenfeldt, K., & von Schoultz, B. (1993) · European Journal of Endocrinology · doi:10.1530/acta.0.1290188 · Cited by 61 · see citing works
McDougall, R. J., Gillam, L. H., Delany, C. M., et al. (2017) · Journal of Medical Ethics · doi:10.1136/medethics-2016-104042 · Cited by 61 · see citing works
Frequencies of spontaneous breast development and spontaneous menarche in Turner syndrome in Japan
Tanaka, T., Igarashi, Y., Ozono, K., Ohyama, K., Ogawa, M., Osada, H., Onigata, K., Kanzaki, S., Kohno, H., Seino, Y., et al. (2015) · Clinical Pediatric Endocrinology · doi:10.1297/cpe.24.167 · Cited by 50 · see citing works
Li, N., Jayasinghe, Y., Kemertzis, M. A., et al. (2016) · Journal of Adolescent and Young Adult Oncology · doi:10.1089/jayao.2016.0061 · Cited by 46 · see citing works
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) · Human Reproduction · doi:10.1093/humrep/deaa007 · Cited by 43 · see citing works
Self-citationReasons Why Young Women Accept or Decline Fertility Preservation After Cancer Diagnosis
Hershberger, P. E., Sipsma, H. L., Finnegan, L., et al. (2015) · Journal of Obstetric, Gynecologic & Neonatal Nursing · doi:10.1016/j.jogn.2015.10.003 · Cited by 38 · see citing works
Schleedoorn, M., van der Velden, J., Braat, D., Beerendonk, I., van Golde, R., Peek, R., & Fleischer, K. (2019) · BMJ Open · doi:10.1136/bmjopen-2019-030855 · Cited by 26 · see citing works
Self-citationTo Freeze or Not to Freeze? An Update on Fertility Preservation In Females with Turner Syndrome.
Schleedoorn, M., van der Velden, J. A. E. M., Braat, D. D. M., Peek, R., & Fleischer, K. (2019) · PubMed · doi:10.17458/per.vol16.2019.svb.tofreezeornot · Cited by 21 · see citing works
Self-citationGalvin, K. M., & Clayman, M. L. (2010) · Cancer treatment and research · doi:10.1007/978-1-4419-6518-9_33 · Cited by 15 · see citing works
Sullivan-Pyke, C. S., Carlson, C. A., Prewitt, M., Gracia, C. R., & Ginsberg, J. P. (2018) · Journal of Assisted Reproduction and Genetics · doi:10.1007/s10815-018-1123-7 · Cited by 15 · see citing works
Life with Turnerʼs Syndrome—A Psychosocial Report From 22 Middle-Aged Women
Sylvén, L., Magnusson, C., Hagenfeldt, K., & von Schoultz, B. (1994) · Obstetrical & Gynecological Survey · doi:10.1097/00006254-199404000-00019 · Cited by 9 · see citing works
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Research works printed but not linked: 2
- Pasquino, A.M., Passeri, F., Pucarelli, I., Segni, M., Municchi, G., 1997. Spontaneous pubertal development in Turner's syndrome. Italian Study Group for Turner's Syndrome. J. Clin. Endocrinol. Metab. 82 (6), 1810 -1813. http://refhub.elsevier.com/S1472-6483(2300124-4/sbref0021)
- van der Coelen, S., Schleedoorn, M.J., Nadesapillai, S., Peek, R., Braat, D.D.M., van der Velden, A.A.E.M., Fleischer, K., Oerlemans, A.J.M., 2022. Evaluation of the decision-making process on ovarian tissue cryopreservation in girls with Turner syndrome by patients, parents and caregivers. Human Reproduction. http://refhub.elsevier.com/S1472-6483(2300124-4/sbref0034)
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Clinical practice guidelines for the care of girls and women with Turner syndrome.
Gravholt, C. H., Andersen, N. H., Christin-Maitre, S., Davis, S. M., Duijnhouwer, A., Gawlik, A., Maciel-Guerra, A. T., Gutmark-Little, I., Fleischer, K., Hong, D., et al. (2024) · European Journal of Endocrinology · doi:10.1093/ejendo/lvae050 · Cited by 224 · see citing works
Self-citation
- Authors
- Nadesapillai, S., van der Coelen, S., Goebel, L., Peek, R., Braat, D. D., van der Velden, J. A., Fleischer, K., & Oerlemans, A. J.
- Affiliations
- Radboud University Nijmegen (NL)
- Corresponding author
- Nadesapillai, Sapthami
- Venue
- Reproductive BioMedicine Online
- Publisher
- Elsevier BV
- Published
- 2023-06
- Volume
- 46
- Issue
- 6
- Pages
- 1017-1025
- ISSN
- 1472-6483 (ISSN-L)
- OpenAlex
- W4323075005
- Cited by
- 7
- References
- 33
- Citations by year
- 2025: 4 · 2024: 2 · 2023: 1
- FWCI
- 1.80
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- Reproductive BioMedicine Online (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Radboud Repository (Radboud University) (submittedVersion)
- Radboud Repository (Radboud University) (submittedVersion, other-oa)
- Funders
- Ferring Pharmaceuticals
- EMD Serono (A16-1395)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Reproductive Biology and Fertility
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Ethics and Legal Issues in Pediatric Healthcare
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Genetic and Clinical Aspects of Sex Determination and Chromosomal Abnormalities
- Keywords
- Turner syndrome, ovarian tissue cryopreservation, fertility preservation, decision-making, parents, girls, fertility counseling, uncertainty, hope, trust in healthcare providers, surgical risk
- MeSH terms
- Female, Fertility, Humans, Parents, Turner Syndrome, Cryopreservation, Fertility Preservation
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