Objective To assess the utilisation of and funding structure for fertility preservation for children diagnosed with cancer in the UK.
Design Survey of paediatric oncologists/haematologists. Questionnaires were sent electronically with reminder notifications to non-responders.
Setting UK Paediatric Oncology Principal Treatment Centres (PTCs).
Participants Paediatric oncologists/haematologists with an interest in the effects of treatment on fertility representing the 20 PTCs across the UK.
Main outcome measures Referral practices, sources and length of funding for storage of gametes or gonadal tissue for children diagnosed with cancer in the preceding 12 months.
Results Responses 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.
Conclusions Inequality 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.
- data collection
Data availability statement
All data relevant to the study are included in the article or uploaded as supplementary information. All data relevant to the study are included in the article or uploaded as supplementary information.
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Contributors The idea for this study came from AG, CMH and HLN. The survey was designed by HLN, with input from AG, CMH, HMP and AJF. MB, RC, VG, MK-W, SL, RTM, RS, WHS and DY assisted with data collection and analysis. All authors contributed to the final manuscript and have approved it for publication.
Funding HLN and AJF are recipients of a Candlelighters Clinical Research Fellowship awards (grant 11061473 CACL) and completed this study as postgraduate research students based at the University of Leeds.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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