14th International Symposium on MDS: A Summary

Nurses report by Janet Hayden, Myeloid Clinical Nurse Specialist, Kings College NHS Foundation Trust, London (Adapted by MDS UK Patient Support Group)

MDS Foundation

Careful selection of patients may be appropriate to out-patient care delivery after stem-cell transplant

There were many interesting projects presented during the nursing sessions. Three projects presented where of particular interest and relevance to myself and my professional practice.

The first presentation, ‚Home Care for MDS Patients Undergoing Allogeneic Bone Marrow Transplantation‘ by nurse Nuria Borras was a project by a nurses group in Barcelona who were already working in an established ambulatory care unit that had undertaken many autologous transplants. The three MDS patients were chosen as a pilot to receive home care after the chemotherapy and stem cell infusion. They were all successfully discharged to home care. They were visited twice a day at home and were brought to the out-patient department twice weekly. All of the patients had achieved remission prior to transplant with Azacytidine and none of the patients received Campath or ATG as part of their conditioning. It was reported that none of the patients were readmitted. It was discussed that these patients had a good or very good performance status prior to transplant and were already very familiar to the routine of receiving out-patient care and self-management. It was concluded that careful selection of patients may be appropriate to out-patient care delivery.

Azacytidine Administration at Home

A further very interesting project was presented again by nurses in Spain: Azacytidine administration at home by Laura Muñoz Tirado.

A project that has how been rolled out to include most of the hospitals in Spain administering Azacytidine. This project was undertaken by nurses across the country by nurses from the home-care units. These nurses were not necessary haematology nurses. They would visit patients at home usually by taxi from the hospital. The economic savings were shown to be vast, saving around a third compared to hospital administration. This equated to around 100.000 euros per year per patient.

See comparison below and full presentation here.

Aza at home - Savings


The patient videos and reports demonstrated clearly the increased level of patient satisfaction and quality of life for this patient group. Discussions around this included the other units adopting the practice of caregivers trained to give azacytidine at home once they had collected from the hospital on daily basis. Again, showing significant positive impact on patients who already had fatigue for example.


Photovoice: Patient’s photos which represented their MDS journey

Petra Lindroos-Kölqvist from Sweden presented Photovoice for MDS patients. This project allowed patients to take photos of things which represented their MDS journey. They were then interviewed and allowed to discuss their photos. A thematically analysis was made and themes such as hope, treatment, family, places were identified. Further work is purposed…..

See here the full presentation sent by our Swedish friend Petra and her nursing team

Photovoice - Patients Stories

Managing your MDS with your Phone

As an international MDS nursing community we rarely get the opportunity to get together and discuss our professional practice and patient care. The Nursing Leadership Board of which I am a member, facilitated some networking meetings during our stay in Valencia. In the past these meetings have produced collaborative projects and publications.

Of note and particular interest this year is that Sandy Kurtin has produced, as part or her ongoing PhD, an app for smartphones and tablets called MDS manager. The purposes of this app are to complement the already comprehensive publications of Building Blocks of Hope produced by the MDS Foundation. The app will have the capability to store MDS profile (IPSS-R scores, BM results), track bloods counts, transfusions and treatments, record symptoms, contacts of key professionals, medications, download reports, calendars for appointments and much more. Also, notifications can be sent to complete quality of life information and new clinical trials. Sandy is asking for interest to trial in centres internationally and we are looking forward to being involved in this initiative.

Other discussions and opinions revolved looking at patient education in the light of the rapidly advancing science of MDS in identifying somatic mutations and the implications for the patients. Predominantly we discussed how we might best support the patients in understanding this information and identify the risks of benefits to them to have this information in understandable and translatable form.

As well as having many excellent sessions in the scientific program this meeting also offers a comprehensive nursing program which are described in this report.


CNS Janet Hayden was able to attend the MDS Symposium, thanks to a generous grant from the experts group in MDS – the UK MDS Forum – to whom she is very grateful for the opportunity.

This MDS Symposium takes place every two years. In 2015, our patient group MDS UK Patient Support Group sponsored travel for 2 nurses to attend the Symposium in Washington (Janet Hayden and Geke Ong) www.mdspatientsupport.org.uk.


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