"WE CAN Work IT out": The Development of a Consensus Approach to Decision Making in Allogeneic STEM CELL Transplantation in the UK

Introduction: Blood and marrow transplantation is a low volume, high risk specialty. Institutional practices vary considerably. Consensus practice is important for physician and family confidence and to optimise patient outcomes during stem cell transplantation with best practice and as a platform for research. The 12 paediatric / adolescent transplant centres of the UK and Ireland are increasingly collaborative and this report summarises the efforts of that groups and commends them to other national paediatric BMT groups.

Materials (or patients) and methods: The Group's activities over the last 7 years are reviewed in the following areas: a) National Audit Meeting in which all transplants performed from the previous year are in a single national meeting attended by physicians, nurses and data managers from each centre. Instructive cases and all transplant related deaths are specifically highlighted. There have been now 9 such annual meetings. An external auditor attends. b) Twice yearly meetings attended by transplant centres in which protocols are drawn up and consensus indications discussed. c) Since 2012 there has been a national, monthly video conference attended by transplant teams. Difficult cases referred for transplant and difficult cases during transplant are discussed. An agenda is circulated in advance of the meeting and there is a summary of the discussion (as meeting minutes) circulated afterwards. A separate video MDT has been held with metabolic disease paediatricians for particular metabolic related SCT cases. d) The group has agreed consensus guidelines for transplant for group members.

Results: All transplants performed in the UK have been discussed at national audit meetings. There is a median of 300 transplants per annum. There is a national, annually updated, indication list for stem cell transplantation in children for National Health Service purchasers. National protocols for stem cell transplant in AML, ALL, haemoglobinopathy, metabolic Diseases and constitutional and acquired aplastic anaemia. National video MDT are held monthly and pre-HCT (75%) and post-HCT patients are discussed. Parallel to these increasing face-to-face contacts there is increasing email contact between the group between meetings.

Discussion: We have found these national, increasingly frequent joint meetings to be extremely useful and we commend them to other national groups. We also believe that the opportunity to discuss individual cases with such a national group is not only helpful to patient management but is easily seen - for families and professionals - to be important to patient management and generates confidence in the complicated transplant process.