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Inconsistencies in fertility preservation for young people with cancer in the UK
  1. Hannah L Newton1,2,
  2. Helen M Picton1,
  3. Amanda Jane Friend3,4,
  4. Catherine M Hayden5,
  5. Mark Brougham6,
  6. Rachel Cox7,
  7. Victoria Grandage8,
  8. Michelle Kwok-Williams9,
  9. Sheila Lane10,
  10. Rod Thomas Mitchell11,12,
  11. Roderick Skinner13,14,
  12. W Hamish Wallace15,16,
  13. Daniel Yeomanson17,
  14. Adam W Glaser3,4
  15. on behalf of the Children’s Cancer and Leukaemia Group Late-effects Working Group
  1. 1 University of Leeds Leeds Institute of Cardiovascular and Metabolic Medicine, Leeds, UK
  2. 2 Obstetrics & Gynaecology, Leeds Teaching Hospitals NHS Trust, Leeds, UK
  3. 3 Leeds Institute of Medical Research, University of Leeds, Leeds, UK
  4. 4 Paediatric and Adolescent Oncology, Leeds Teaching Hospitals NHS Trust, Leeds, UK
  5. 5 Leeds Teaching Hospitals NHS Trust, Leeds, UK
  6. 6 Department of Haematology and Oncology, Royal Hospital for Sick Children, Edinburgh, UK
  7. 7 Paediatric Oncology, Bristol Royal Hospital for Children, Bristol, UK
  8. 8 Haematology, University College Hospital, London, UK
  9. 9 Oncology, Leeds Teaching Hospitals NHS Trust, Leeds, UK
  10. 10 Paediatric Oncology, Oxford University Hospitals NHS Foundation Trust, Oxford, UK
  11. 11 MRC Centrre for Reproductive Health, University of Edinburgh, Edinburgh, UK
  12. 12 Department of Diabetes and Endocrinology, Royal Hospital for Sick Children, Edinburgh, UK
  13. 13 Paediatric Haematology, Great North Children's Hospital, Newcastle upon Tyne, UK
  14. 14 Translational and Clinical Research Institute, University of Newcastle upon Tyne, Newcastle upon Tyne, UK
  15. 15 The University of Edinburgh MRC Centre for Reproductive Health, Edinburgh, UK
  16. 16 Royal Hospital for Sick Children, Edinburgh, UK
  17. 17 Paediatric Oncology, Sheffield Children's Hospital, Sheffield, UK
  1. Correspondence to Prof Adam W Glaser, Paediatric and Adolescent Oncology, Leeds Teaching Hospitals NHS Trust, Leeds, UK; a.glaser{at}leeds.ac.uk

Abstract

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
  • growth

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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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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Footnotes

  • Twitter @the_learnaholic, @RodTMitchell

  • 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.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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