Inconsistencies in fertility preservation for young people with cancer in the UK

2021 ◽  
pp. archdischild-2021-321873
Author(s):  
Hannah L Newton ◽  
Helen M Picton ◽  
Amanda Jane Friend ◽  
Catherine M Hayden ◽  
Mark Brougham ◽  
...  

ObjectiveTo assess the utilisation of and funding structure for fertility preservation for children diagnosed with cancer in the UK.DesignSurvey of paediatric oncologists/haematologists. Questionnaires were sent electronically with reminder notifications to non-responders.SettingUK Paediatric Oncology Principal Treatment Centres (PTCs).ParticipantsPaediatric oncologists/haematologists with an interest in the effects of treatment on fertility representing the 20 PTCs across the UK.Main outcome measuresReferral practices, sources and length of funding for storage of gametes or gonadal tissue for children diagnosed with cancer in the preceding 12 months.ResultsResponses were received from 18 PTCs (90%) with responses to 98.3% of questions. All centres had referred patients for fertility preservation: ovarian tissue collection/storage 100% (n=18 centres), sperm banking 100% (n=17; one centre was excluded due to the age range of their patients), testicular tissue storage 83% (n=15), mature oocyte collection 35% (n=6; one centre was excluded due to the age range of their patients). All centres with knowledge of their funding source reported sperm cryopreservation was NHS funded. Only 60% (n=9) centres reported the same for mature oocyte storage. Of the centres aware of their funding source, half reported that ovarian and testicular tissue storage was funded by charitable sources; this increased in England compared with the rest of the UK.ConclusionsInequality exists in provision of fertility preservation for children with cancer across the UK. There is lack of formalised government funding to support international guidelines, with resultant geographical variation in care. Centralised funding of fertility preservation for children and young adults is needed alongside establishment of a national advisory panel to support all PTCs.

2018 ◽  
Author(s):  
Chantae S Sullivan-Pyke ◽  
Clarisa Gracia

Fertility preservation has becoming increasingly important for patients at risk for gonadal failure, including those needing treatment for cancer or autoimmune conditions, genetic conditions that predispose to gonadal insufficiency, and age-related fertility decline. Embryo cryopreservation and mature oocyte cryopreservation are the standards for fertility preservation in postpubertal women. Ovarian tissue cryopreservation and gonadotropin-releasing hormone agonist use for ovarian suppression are experimental methods that may be offered to patients for whom embryo and/or mature oocyte cryopreservation are not applicable. The cryopreservation of spermatozoa is the standard for fertility preservation in postpubertal males, but testicular tissue cryopreservation may be offered to prepubertal males.   This review contains 10 figures, 6 tables and 53 references Key words: controlled ovarian stimulation, embryo cryopreservation, gonadotropin-releasing hormone agonist, in vitro maturation, oocyte cryopreservation, ovarian tissue cryopreservation, sperm extraction, testicular tissue cryopreservation  


2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
E Yasmin ◽  
S Latif ◽  
C Dia. Garcia ◽  
S. Martin. D Silva

Abstract Study question What is the gap between guidance and practice of fertility preservation between countries and within countries with common clinical guidelines? Summary answer Substantial variation in provision of FP exists between countries and within individual countries with gaps between national and international guidelines and policies governing provision. What is known already A robust guideline on female FP was published by ESHRE in 2020, advising the application of FP in cancer and other conditions where treatment with cytotoxic agents or surgery will compromise reproductive function. Across Europe, in 13 countries (43.3%) FP is funded for all available FP procedures, in 13 countries (43.3%) no FP funding is available, and in 4 countries (13.3%) at least one FP option is funded. Variation in state provision of fertility care in different countries in Europe was highlighted in the ESHRE guidance. It did not specifically examine individual national policies or whether a national policy exists. Study design, size, duration Five clinicians performing FP in Europe were contacted to collect current FP provision data. Policies retrieved from the internet were not included as they could not be verified. Finally, FP funding policies for 135 Clinical Commissioning Groups (CCGs) in England, 14 Health Boards in Scotland, 7 Health Boards in Wales and 5 Trusts in Northern Ireland and 17 policies for regional heath services in Spain were included were included. Participants/materials, setting, methods Policies on FP for the UK and Spain were reviewed (n = 178), including policies from the 161 regions from the four nations of the UK and policies of 17 autonomous bodies in Spain. Information on funded procedures, type of conditions included for funding and duration of storage were extracted. The provision of FP was compared to the current European Society of Human Reproduction and Embryology (ESHRE) and National Institute for Health and Care Excellence (NICE) guidelines. Main results and the role of chance In England, 127/128 (99%) CCGs fund cryopreservation of oocytes, sperm and embryos. Cancer is the exclusive indication in 11%. Provision of FP for transgender individuals is specified in 28%, ovarian tissue cryopreservation is funded in 8% and storage funding varies from five to ten years. In Scotland, a national policy is applied. All 14 health boards equitably fund cryopreservation of oocytes, sperm, embryos and ovarian and testicular tissue. Funding is provided for cancer, medical conditions which may impair fertility and transgender individuals. Storage funding is based on a five yearly review until age 43 in women and 60 in men. In Wales and Northern Ireland, cryopreservation of oocytes, sperm and embryos is funded for people undergoing medical or surgical treatment that is likely to make them infertile, provision for transgender individuals is not specified and ovarian tissue cryopreservation is not funded. In Spain, all 17 Health Services fund cryopreservation of oocytes, sperm and embryos for patients whose fertility is at risk due to gonadotoxic treatments or other pathological processes. Ovarian tissue cryopreservation is funded in 94%, provision for transgender individuals is specified in 12%, and storage funding is available until the age of 50 in women and 55 in men. Limitations, reasons for caution Inability to retrieve fertility preservation policies for every country in Europe is a limitation, for which ongoing collaboration is sought. The variable nature of FP provision is likely to be multi-factorial; a lag in publication of guidelines and updated policies, ethical considerations and resource distribution may govern health policies. Wider implications of the findings: The study highlights that provision of FP not only varies between countries but is also inconsistent within the same country. It is clear that there is a gap between ideal, evidence-based practice and actual provision. Variation in policies limits uniform access to care for patients. Trial registration number Not applicable.


2015 ◽  
Vol 1 (2) ◽  
Author(s):  
Shakina Rauff ◽  
Zaraq Khan ◽  
Claus Yding Andersen

 Ovarian tissue cryopreservation has its primary goal in fertility preservation for women diagnosed with a malignancy and who may be rendered infertile because of the potential gonadotoxic chemotherapy and/or radiotherapy involved in treating their disease. Unlike the standard and endorsed methods of fertility preservation like mature oocyte and embryo cryopreservation, ovarian tissue freezing not only conserves the reproductive capacity of the woman but additionally, maintains the steroidogenic competence of the ovary due to the fact that the frozen cortex contains numerous ovarian follicles – the functional unit of the ovary. Not every follicle is fated to aid procreation. In fact more than 99% are destined to end up in atresia, which may be viewed as an enormous waste of inherent resources. In light of this, there have been propositions to expand the scope of ovarian tissue cryopreservation and transplantation beyond its traditional purpose of fertility preservation for medical indications. Some of these ideas include utilizing cryopreserved ovarian tissue for induction of puberty, delaying the menopause and fertility preservation for social motives. Needless to say, these novel ideas will evoke questions, controversy and a plethora of criticism about the safety, superiority, cost-effectiveness, implications and necessity of these different utilities. In this article, we aim to explore some of the issues that shroud these new indications and discuss the advantages for and diatribe against these evolving suggestions.


2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
C Wyns ◽  
CH De Geyter ◽  
C Calhaz-Jorge ◽  
MS Kupka ◽  
T Motrenko ◽  
...  

Abstract Study question What are the reported data on cycles in ART, IUI and fertility preservation interventions in 2018 as compared to previous years, as well as the main trends over the years? Summary answer AUTHOR: The 22th ESHRE report on ART and IUI shows a progressive increase in reported treatment cycle numbers in Europe, a small decrease in the number of transfers (IVF + ICSI) with more than one embryo with a trend to decreasing multiple delivery rates, higher pregnancy and delivery rates after FER compared to fresh IVF and ICSI cycles, and outcomes for IUI cycles similar to previous years. What is known already Since 1997, ART aggregated data generated by national registries, clinics or professional societies have been collected, analysed by the European IVF-monitoring Consortium (EIM) and reported in 21 manuscripts published in Human Reproduction and Human Reproduction Open. Study design, size, duration Yearly collection of European medically assisted reproduction (MAR) data by EIM for ESHRE. The data on treatments performed between January 1 and December 31 2018 in 34 European countries were provided by either National Registries or registries based on personal initiatives of medical associations and scientific organisations. Participants/materials, setting, methods In all, 1004 clinics offering ART services in 34 countries reported a total of 827 545 treatment cycles, involving 132 332 with IVF, 342 589 with ICSI, 260 013 with frozen embryo replacement (FER), 44 854 with preimplantation genetic testing (PGT), 42 869 with egg donation (ED), 406 with IVM of oocytes and 4482 cycles with frozen oocyte replacement (FOR). European data on IUI using husband/partner’s semen (IUI-H) and donor semen (IUI-D) were reported from 783 institutions offering IUI in 24 and 20 countries, respectively. A total of 132 624 treatments with IUI-H and 43 140 treatments with IUI-D were included. A total of 12 609 fertility preservation (FP) interventions from 13 countries including oocyte, ovarian tissue, semen and testicular tissue banking in pre-and postpubertal patients were reported. Main results and the role of chance In total, 1004 IVF clinics participated (93.4% of registered clinics in the participating countries). Next to these also 783 IUI units reported their data. In the 34 reporting countries, after IVF the clinical pregnancy rates (PR) per aspiration and per transfer in 2018 were similar to those observed in 2017 (28.7% and 41.6% versus 29.4% and 39.0%, respectively). After ICSI the corresponding rates were also similar to those achieved in 2017 (26.3% en 40.9% versus 27.3% and 40.2%). After FER with own embryos the PR per thawing is still on the rise, from 30.2% in 2017 to 33.0% in 2018. After ED the PR per fresh embryo transfer was 49.8% (49.2% in 2017) and per FOR 39.6% (43.3% in 2017). In IVF and ICSI together, the trend towards the transfer of fewer embryos continues with the transfer of 1, 2, 3 and ≥4 embryos in 51.1%, 45.4%, 3.4% and 0.1% of all treatments, respectively (corresponding to 46.0%, 49.2%, 4.5% and 0.3% in 2017). This resulted in a proportion of singleton, twin and triplet DRs of 86.9%, 12.8% and 0.3%, respectively (compared to 85.5%, 14.2% and 0.3%, respectively in 2017). Treatments with FER in 2017 resulted in twin and triplet DR of 9.3% and 0.1%, respectively (versus 11.2% and 0.2% in 2017). After IUI, the DRs remained similar at 9.1% after IUI-H (8.9% in 2017) and at 12.3% after IUI-D (12.4% in 2017). Twin and triplet DRs after IUI-H were 8.4% and 0.3%, respectively (in 2017: 8.1% and 0.3%) and 6.7% and 0.2% after IUI-D (in 2017: 6.9% and 0.2%). The majority of FP interventions included the cryopreservation of ejaculated sperm (n = 8 257 from 13 countries) and of oocytes (n = 3230 from 13 countries). Limitations, reasons for caution As the methods of data collection and levels of completeness of reported data vary among European countries, the results should be interpreted with caution. For this abstract a number of countries was not able to provide adequate data about the number of centers and initiated cycles and deliveries. Wider implications of the findings The 22nd ESHRE report on ART and IUI shows a continuous increase of reported treatment numbers and MAR-derived livebirths in Europe. Being already the largest data collection on MAR in Europe, continuous efforts to stimulate data collection and reporting strive for future quality control and completeness of the data and offer higher transparency and vigilance in the field of reproductive medicine. Trial registration number: Study funding: Funding source:


2021 ◽  
Author(s):  
Natasha N. Frederick ◽  
James L. Klosky ◽  
Lillian R. Meacham ◽  
Gwendolyn P. Quinn ◽  
Joanne Frankel Kelvin ◽  
...  

PURPOSE Fertility preservation (FP) services are part of comprehensive care for those newly diagnosed with cancer. The capacity to offer these services to children and adolescents with cancer is unknown. METHODS A cross-sectional survey was sent to 220 Children's Oncology Group member institutions regarding institutional characteristics, structure and organization of FP services, and barriers to FP. Standard descriptive statistics were computed for all variables. The association between site-specific factors and selected outcomes was examined using multivariable logistic regression. RESULTS One hundred forty-four programs (65.5%) returned surveys. Fifty-three (36.8%) reported a designated FP individual or team. Sperm banking was offered at 135 (97.8%) institutions, and testicular tissue cryopreservation at 37 (27.0%). Oocyte and embryo cryopreservation were offered at 91 (67.9%) and 62 (46.6%) institutions, respectively; ovarian tissue cryopreservation was offered at 64 (47.8%) institutions. The presence of dedicated FP personnel was independently associated with the ability to offer oocyte or embryo cryopreservation (odds ratio [OR], 4.7; 95% CI, 1.7 to 13.5), ovarian tissue cryopreservation (OR, 2.7; 95% CI, 1.2 to 6.0), and testicular tissue cryopreservation (OR, 3.3; 95% CI, 1.4 to 97.8). Only 26 (18.1%) participating institutions offered all current nonexperimental FP interventions. Barriers included cost (70.9%), inadequate knowledge or training (60.7%), difficulty characterizing fertility risk (50.4%), inadequate staffing (45.5%), and logistics with reproductive specialties (38%-39%). CONCLUSION This study provides the most comprehensive view of the current landscape of FP infrastructure for children and adolescents with cancer and demonstrates that existing infrastructure is inadequate to offer comprehensive services to patients. We discuss modifiable factors to improve patient access to FP.


2021 ◽  
pp. 030089162110405
Author(s):  
Simonetta Viviani ◽  
Miriam Dellino ◽  
Safaa Ramadan ◽  
Claudia Peracchio ◽  
Luigi Marcheselli ◽  
...  

Background: Improvement in the prognosis of lymphomas in recent decades has allowed focus on reducing long-term toxicity of treatment, including infertility. The aim of this study was to assess the fertility preservation knowledge and practices among hematologic centers affiliated with Fondazione Italiana Linfomi (FIL) in Italy. Methods: A survey questionnaire was provided to 152 FIL centers between December 2019 and December 2020. Results: Responses from 58 centers (38%) were received. All respondents reported informing patients about treatment-related gonadotoxicity. A minority of patients (10% female, 20% male) refused fertility preservation due to personal reasons. The most common fertility preservation options offered to female patients were mature oocyte cryopreservation (43.1%), ovarian tissue cryopreservation (6.9%), and mature oocyte or ovarian tissue cryopreservation (39.7%). Six centers (10.3%) did not perform any procedures. All centers offered sperm cryopreservation for male patients. Challenges regarding the time intervals between lymphoma diagnosis and fertility consultation (up to 20 days) as well as between consultation and fertility preservation procedure (up to 40 days) were revealed. Conclusions: This survey provides insight into fertility preservation practices among Italian hematologic centers and points out an urgent need to improve close cooperation between hematologists and fertility preservation specialists in order to avoid unacceptable delays in lymphoma treatment.


Reproduction ◽  
2019 ◽  
Vol 158 (5) ◽  
pp. F1-F14 ◽  
Author(s):  
Karen R Kilcoyne ◽  
Rod T Mitchell

Transplantation of testicular tissues and cells has been proposed as a future clinical option for patients who have had testicular tissue cryopreserved prior to receiving gonadotoxic therapies. Whilst this approach remains experimental, success using animal models and successful transplantation of ovarian tissue resulting in live births in female patients provides optimism for the development of clinical applications involving transplantation of testicular tissue in males. Careful consideration must be given to patient groups that may benefit from this approach in the future. Current research is focused on optimising patient selection, methods for tissue cryopreservation and development of transplantation techniques that might restore sperm production or future fertility in males. Crucially, attention must be focused on ensuring safety of transplantation, including eliminating the potential for infection or re-introducing malignancy. Furthermore the genetic/epigenetic integrity of any gametes generated must be ensured to allow generation of normal offspring. This review will provide an overview of the current status of transplantation of testicular tissue and cells for fertility preservation in males.


2021 ◽  
pp. 146531252110216
Author(s):  
Annabelle Carter ◽  
Susan Stokes

Objective: To identify the number of companies providing Do-It-Yourself (DIY) orthodontics and explore information available on websites for DIY brace providers operating in the UK. Design: Web search and review of websites providing DIY braces. Setting: Leeds, UK. Methods: A Web search was completed in November 2020 and April 2021 of all companies providing DIY braces for UK consumers. Each website was evaluated, and the following data collected: name; year started operating; costs; process; involvement of a dental professional; average ‘treatment’ length; retention; consent process; information on risks and benefits; aligner material; social media presence; age suitability; and consumer ratings on Trustpilot. Quality of website information was assessed via the DISCERN tool. Results: Seven DIY orthodontic companies were operating in the UK. Websites reviewed revealed the following: product costs were in the range of £799–£1599, ‘treatment’ length quotes were in the range of 4–12 months; Trustpilot reviews were in the range of 1.6–4.8 stars; and websites claimed their aligners were suitable for individuals with an age range of 12–18 years. Quality of content regarding risks described on websites varied, and there was limited information regarding involvement of a dental professional. Quality of websites information scored ‘poor’ or ‘very poor’ on the DISCERN scoring. Conclusions: There has been an increase in the number of DIY orthodontic companies operating in the UK over the last three years. There is a need to determine whether these products constitute dental treatment in their own right. If so, it is crucial to ensure these are regulated appropriately with adequate information available to satisfy informed consent and have greater transparency over dental professional involvement to safeguard the public.


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