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

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.

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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.

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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

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Correspondence to Fiona L. Dignan.

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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.

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

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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 (2020). https://doi.org/10.1038/s41409-020-01067-y

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