Get the latest on MDS Treatment from the MDS Foundation Symposium

Janet Hayden, Myeloid Clinical Nurse Specialist, from Kings College NHS Foundation Trust, London (Adapted by MDS UK Patient Support Group) brings the latest in MDS Treatment from the Annual MDS Symposium in Valencia.

MDS Foundation Symposium May 2017

Some patients are suitable for home treatment after stem-cell transplant

Many interesting projects were presented during the nursing sessions, of which three were 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 - covered a project by a nurses' group in Barcelona who were already working in an established ambulatory care unit that had undertaken many autologous transplants. Three MDS patients were chosen as a pilot to receive home care after their chemotherapy and stem cell infusion. After they were all successfully discharged to home care, they were visited twice a day at home and brought to the out-patient department twice weekly. All of these patients had achieved remission with Azacitidine prior to transplant 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 had a good or very good performance status prior to transplant and were already very familiar with the routine of self-management and receiving out-patient care. It was concluded that careful selection of patients may be appropriate to out-patient care delivery.

Azacitidine Treatment at Home

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

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

See comparison below and full presentation here.

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

Photovoice: Patients' photos representing 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 thematic analysis was made and themes such as hope, treatment, family and places were identified. Further work is proposed ....

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

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 of 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 around 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 patients in understanding this information and identifying the risks and benefits for them in having this information in understandable and translatable form.

As well as many excellent sessions in the scientific program, this meeting also offered a comprehensive nursing program which is described in this report.

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

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


Our support opportunities are open to nurses nationwide, but unfortunately it is extremely difficult for these nurses to be granted time off or study leave – due to immense work pressure as well as to hospitals being short-staffed.

We urge hospitals and managers to allow nurses to attend such conferences – as it benefits everyone in the long term. Thank you.

If you are a nurse and are interested in our offers of support, please email us on

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