Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Article
  • Published:

Survivorship care for allogeneic transplant patients in the UK NHS: changes centre practice, impact of health service policy and JACIE accreditation over 5 years

Bone Marrow Transplantation volume 56, pages 673–678 (2021)Cite this article

Subjects

Abstract

Care of long-term survivors of allogeneic transplant is known to be variable despite international guidelines and accreditation standards. In 2014 a survey of UK NHS-based adult transplant centres identified significant barriers to delivery of long-term follow-up services. In 2019, we repeated the survey to assess changes over a 5-year period when health service policies had mandated JACIE accreditation incorporating standards for long-term care. Improvements were seen in the number of centres having a dedicated long-term follow-up clinic for allogeneic transplant recipients (52% versus 33%) and a standard operating procedure (88% versus 69%). Inclusion of psychological support in standard operating procedures remained low at both time points (32% versus 28%). There was ongoing variation in practice regarding vaccination programmes, access to cancer screening, and audit processes between centres. Perceived barriers to implementation of comprehensive long-term follow-up clinics were similar in 2019; mainly resourcing clinical staff and psychological support. Whilst the survey reflects the changing practice of transplant centres, best explained by increasing recognition of late effects and survivorship by clinicians, health service policy and JACIE accreditation standards, further developments are warranted to address unmet healthcare needs of long-term HSCT survivors, especially access to psychological support, cancer screening and vaccinations.

This is a preview of subscription content, access via your institution

Access options

Buy this article

  • Purchase on Springer Link
  • Instant access to full article PDF
Buy now

Prices may be subject to local taxes which are calculated during checkout

Fig. 1: The average follow-up of patients in relation to time from transplant (24/25 responses received).
Fig. 2: Access to specialists (22/25 responses received).
Fig. 3: This figure illustrates the location of vaccination records.
Fig. 4: A pie chart to show the barriers to implementation of effective late effects service.

Similar content being viewed by others

References

  1. Majhail NS, Rizzo JD, Lee SJ, Aljurf M, Atsuta Y, Bonfim C, et al. Recommended screening and preventive practices for long-term survivors after hematopoietic cell transplantation. Biol Blood Marrow Transplant. 2012;18:348–71.

    Article  Google Scholar 

  2. Hamblin A, Greenfield D, Gilleece M, Salooja N, Kenyon M, Morris E, et al. Provision of long-term monitoring and late effects services following adult allogeneic haematopoietic stem cell transplant: a survey of UK NHS-based programmes. Bone Marrow Transplant. 2017;52:889–94.

    Article  CAS  Google Scholar 

  3. Hashmi S, Lee S, Savani B, Burns L, Wingard J, Perales M, et al. ASBMT practice guidelines committee survey on long-term follow-up clinics for hematopoietic cell transplant survivors. Biol Blood Marrow Transplant. 2018;24:1119–24.

    Article  Google Scholar 

  4. PDE Miller, de Silva T, Skinner R, Gilleece M, Peniket A, Hamblin A, et al. Routine vaccination practice after adult and paediatric allogeneic haematopoietic stem cell transplant: a survey of UK NHS programmes. Bone Marrow Transplant. 2017;52:775–7.

    Article  Google Scholar 

  5. Styczyński J, Tridello G, Koster L, Iacobelli S, van Biezen A, van der Werf S, et al. Death after hematopoietic stem cell transplantation: changes over calendar year time, infections and associated factors. Infectious Diseases Working Party EBMT. Bone Marrow Transplant. 2020;55:126–36.

    Article  Google Scholar 

  6. NHS England (version B04/P/a) Jan 2013. https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2015/01/b04-haematp-stem-cll-transplt.pdf. Accessed 14 Oct 2020.

  7. Snowden JA, McGrath E, Duarte RF, Saccardi R, Orchard K, Worel N, et al. JACIE accreditation for blood and marrow transplantation: past, present and future directions of an international model for healthcare quality improvement. Bone Marrow Transplant. 2017;52:1367–71.

    Article  CAS  Google Scholar 

  8. Saccardi R, McGrath E, Snowden AJ. JACIE Accreditation of HSCT Programs. The EBMT handbook. 2019:35–40.

  9. Snowden JA, Saccardi R, Orchard K, Ljungman P, Duarte RF, Labopin M, et al. Benchmarking of survival outcomes following haematopoietic stem cell transplantation: a review of existing processes and the introduction of an international system from the European Society for Blood and Marrow Transplantation (EBMT) and the Joint Accreditation Committee of ISCT and EBMT (JACIE). Bone Marrow Transplant. 2020;55:681–94.

    Article  CAS  Google Scholar 

  10. BSBMTCT Executive summary of transplant and cellular therapy outcomes in UK/ROI. 10th ed. (unpublished data).

  11. Public Health England with NHS England and NHS Improvement Public Health Commissioning. NHS Public Health Functions Agreement 2019–20. NHS Public Health Functions 2019–20 Service Specification No. 24 NHS Breast Screening Programme Jul 2019. https://www.england.nhs.uk/wp-content/uploads/2017/04/Service-Specification-No.24-Breast_Screening_Programme.pdf. Accessed 14 Oct 2020.

  12. Public Health Scotland 2020. https://www.isdscotland.org/Health-Topics/Cancer/Breast-Screening/. Accessed 14 Oct 2020.

  13. Public Health Wales 2020. http://www.breasttestwales.wales.nhs.uk/home. Accessed 14 Oct 2020.

  14. Health and Social Care Public Health Agency Overview of Northern Ireland Breast Screening Programme 2020. http://www.cancerscreening.hscni.net/Overview_of_Breast_Screening_Programme.htm. Accessed 14 Oct 2020.

  15. Public Health England with NHS England and NHS Improvement Public Health Commissioning. NHS Public Health Functions Agreement 2019-20. Service Specification No. 25 NHS Cervical Screening Programme. July 2019. https://www.england.nhs.uk/wp-content/uploads/2017/04/Service-Specification-No.25-Cervical_Screening.pdf. Accessed 14 Oct 2020.

  16. Public Health Scotand 2020. https://www.isdscotland.org/Health-Topics/Cancer/Cervical-Screening/. Accessed 14 Oct 2020.

  17. Public Health Wales 2020. http://www.cervicalscreeningwales.wales.nhs.uk/. Accessed 14 Oct 2020.

  18. Health and Social Care Public Health Agency Overview of Northern Ireland Cervical Screening Programme 2020. https://www.publichealth.hscni.net/directorate-public-health/service-development-and-screening/cervical-cancer-screening. Accessed 14 Oct 2020.

  19. Public Health England. Protocols for Surveillance of Women at Very High Risk of Developing Breast Cancer Oct 2020. https://www.gov.uk/government/publications/breast-screening-higher-risk-women-surveillance-protocols/protocols-for-surveillance-of-women-at-higher-risk-of-developing-breast-cancer. Accessed 14 Oct 2020.

Download references

Acknowledgements

The authors acknowledge the contribution of the data registry team of the British Society of Blood and Marrow Transplantation & Cellular Therapy for their support in providing registry data. We would also like to thank the staff of all the centres who contributed data to this survey.

British Society of Blood and Marrow Transplantation and Cellular Therapy

Fiona L. Dignan1, Julia Lee4, Maria Gilleece6, John A. Snowden8, Kim Orchard9, Deborah Richardson9, Dominic Culligan10, Kavita Raj11, Eduardo Olavarria12, Marie Waller1, Bim Laguda13, Rachael Hough14, Ram Malladi15, Jennifer L. Byrne16, Stephen Robinson17

Author information

Authors and Affiliations

  1. Department of Clinical Haematology, Manchester University NHS Foundation Trust, Manchester, UK

    Fiona L. Dignan & Marie Waller

  2. Oxford BRC Haematology Theme, Department of Clinical Haematology, Oxford University Hospitals NHS Foundation Trust, Oxford, UK

    Angela Hamblin

  3. Anthony Nolan, London, UK

    Amelia Chong & Paul Miller

  4. British Society of Blood and Marrow Transplantation & Cellular Therapy, London, UK

    Julia Lee

  5. Department of Haematological Medicine, King’s College Hospital, London, UK

    Michelle Kenyon

  6. Department of Clinical Haematology, Leeds Teaching Hospitals NHS Trust, Leeds, UK

    Maria Gilleece

  7. Department of Haematology, University Hospitals Plymouth NHS Trust, Plymouth, UK

    Hannah Hunter

  8. Department of Haematology, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK

    John A. Snowden

  9. Department of Haematology, University Hospital Southampton NHS Foundation Trust, Tremona Road, Southampton, Hampshire, SO16 6YD, UK

    Kim Orchard & Deborah Richardson

  10. Department of Haematology, Aberdeen Royal Infirmary, Aberdeen, UK

    Dominic Culligan

  11. Department of Haematology, Guys and St Thomas’ NHS Foundation Trust, London, UK

    Kavita Raj

  12. Division of Clinical and Laboratory Haematology, Imperial College Healthcare NHS Trust, London, UK

    Eduardo Olavarria

  13. Department of Haematology, Bart’s Health NHS Trust, London, UK

    Bim Laguda

  14. Department of Haematology, University College London Hospitals NHS Foundation Trust, London, UK

    Rachael Hough

  15. Department of Haematology, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK

    Ram Malladi

  16. Faculty of Medicine and Health Sciences, University of Nottingham, Nottingham, UK

    Jennifer L Byrne

  17. University Hospitals Bristol NHS Foundation Trust, Bristol, UK

    Stephen Byrne

Authors
  1. Fiona L. Dignan
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Angela Hamblin
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Amelia Chong
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Julia Lee
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Michelle Kenyon
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Paul Miller
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Maria Gilleece
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Hannah Hunter
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. John A. Snowden
    View author publications

    You can also search for this author in PubMed Google Scholar

Consortia

on behalf of the British Society of Blood and Marrow Transplantation and Cellular Therapy

  • Fiona L. Dignan
  • , Julia Lee
  • , Maria Gilleece
  • , John A. Snowden
  • , Kim Orchard
  • , Deborah Richardson
  • , Dominic Culligan
  • , Kavita Raj
  • , Eduardo Olavarria
  • , Marie Waller
  • , Bim Laguda
  • , Rachael Hough
  • , Ram Malladi
  • , Jennifer L Byrne
  •  & Stephen Byrne

Corresponding author

Correspondence to Fiona L. Dignan.

Ethics declarations

Conflict of interest

JAS was Chair of NHSE Clinical Reference Group for Blood and Marrow Transplantation from June 2016-June 2020 and declares speaker fees for Sanofi, Jazz, Mallinckrodt, Janssen, Gilead and trial IDMC membership for Kiadis Pharma. FLD is Chair of the NHSE Clinical Reference Group for Blood and Marrow Transplantation from June 2020 and declares speaker fees for Jazz, Mallinckrodt, Pfizer and Janssen. FLD and JAS co-chaired the NHSE Clinical Reference Group for Blood and Marrow Transplantation from April to June 2020. No conflicts of interest were declared by other authors.

Additional information

Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Members of the “British Society of Blood and Marrow Transplantation and Cellular Therapy” are listed below in Acknowledgements.

Supplementary information

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Dignan, F.L., Hamblin, A., Chong, A. et al. Survivorship care for allogeneic transplant patients in the UK NHS: changes centre practice, impact of health service policy and JACIE accreditation over 5 years. Bone Marrow Transplant 56, 673–678 (2021). https://doi.org/10.1038/s41409-020-01067-y

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/s41409-020-01067-y

This article is cited by

Search

Advanced search

Quick links