Patient Journey – The most difficult days
Sunday, March 26th
Under the blue skies in the South of France the 33rd Meeting of the Nurses Group commenced with the Education Day for Nurses & Allied Health Professionals. This stimulating and inspiring session focussed on the patient journey and covered many aspects of that our patients face from diagnosis, initial treatment, through BMT and beyond. There presentations were excellent with each individual session being followed by an overview of the psychological impact.
The Scientific meeting was attended by 478 Nurses and to celebrate 60 years of transplant, we were fortunate to have Chiaria Bonini as our Keynote Speaker open our meeting with her lecture on ‘New frontiers – 60 years of Transplant’.
The Scientific program delivered focused sessions on understanding blood tests, disease updates, apheresis and pre-transplant issues and complications. The disease update and blood tests sessions have been well evaluated previously and have been in our programme for the last couple of meetings. This year we also included a session on the role of the transplant co-ordinator nurse,
Our 'How do I?' Session included a very interesting ‘How do I: Quality management?’, which also explained the new JACIE standards and the affect this might have on ward nurses. We heard a number of thought provoking presentations from the patients prespective and had a couple of stand out sessions on the challenging subject of fertility in BMT patients, including an excellent workshop run by Dr Alex King (UK) and Alice Sidney - 'Having useful conversations with patients about fertility'
It was great to have a whole session dedicated to the Global Education projects with presentations including the developments and collaborations in China, India and Syria.
Alongside the traditional Nurse Scientific Program, this year we also had a number of satellite symposia covering VOD and gene therapy.
The newly updated active management of VOD Learning Programme is available on www.ebmt.org. Click HERE to view the programme.
The nurse’s essential role
In order to be able to recognise signs of VOD and appropriately care for and manage patients with VOD we launched the educational tool in 2014. This updated version has been developed with consideration of the relevant national and international guidelines regarding the diagnosis and treatment of VOD, including the recently revised EBMT diagnosis and severity grading criteria for VOD in adults and new information on risk factors for VOD.
We know that as nurses we can make a difference in the outcome for patients with acute complications from haematopoietic stem cell transplantation (HSCT). VOD is one potentially life-threatening complication where treatment is available but where identification and diagnosis can be difficult.
The tool is designed for self-learning as well as for you to help educate colleagues on active management of VOD. It will give you the knowledge about VOD that will enable you to raise concern and alert the other HSCT team members ultimately improving patient outcomes.
Interactive PowerPoint format with further details in information popups, easy navigation between modules, and links to external resources.
Self-assessment questions at the end of each module.
Interactive case studies applying the new EBMT diagnosis and severity grading criteria for VOD in adults.
Information on risk factors for VOD.
The updated version is currently available in English but translations will follow soon!
This year the 9th Distinguished Merit Award for the EBMT Nurses Group has been presented to Eugenia Arjona Trigoso (Spain) for her dedication to promoting the EBMT NG mission, networking with the EBMT Paediatric working party and NNF (Nurses No Frontiers) in Europe and beyond and also for acting as an ambassador for the EBMT NG with other societies (e.g. EONS, NNF, CCI).
Eugenia Ayona Trigoso has been a member and chair of the NG Paediatric Committee from 2008 to 2017. She has been supporting paediatric meetings and training courses in Europe and beyond and was the EBMT NG link to the Paediatric Diseases Working Party from the beginning of the paediatric committee. She was the former chair and active member of the Spanish nurses group, member of EONS and following our congress in Marseille 2017, she became an EBMT NG Global Educational Committee member to focus on participating in outreach projects which she has been actively doing since 2012 (China, India).
The prize for best oral presentation was awarded to: Nursing care in gastrointestinal GvHD - Fabienne Colledani, Paris, France
This award was given by an unanimous vote. The subject matter was difficuit and the author presented it in a clearly structured and senstive manner.
The prize for best poster presentation was awarded to: NP42 Implementing and improving the holistic needs assessments for autologous stem cell patients.
Michelle Taylor, Vicky John, Jasmin Hebden; Macmillan Heamatology Clinical nurse specialists, UK.
This poster was both interesting and unique with an eye catching and creative layout. It was great to see the innovative use of technology to help and support patients with psychological issues. The method involved the whole patient population. In the future it would be great to see this kind of tool used more to develop services and patient support.
The Best Original Research was presented to Annika Kisch (Sweden) for her abstract entitled: “The core of sibling stem cell donation – a prospective grounded theory approach”
"For those of you who were able to come to Marseille for our Annual Meeting on behalf of the EBMT Nurses Group, I really do hope that you had a great experience and learnt at least ONE new piece of information to take back to your centres. For those that took away more than this, we are delighted. We hope that you enjoy using the knowledge you gained in your practice and will have the opportunity to share new ideas with your colleagues who were unable to make it this time. However, if this time you did not feel there were any new learning opportunities on offer, I would really like to hear from you so that we, as the EBMT nursing committees, can make sure that our next program meets the extensive educational needs of everyone who attends the meeting and offers sufficient opportunities for networking with colleagues throughout Europe and beyond..
My aim as your new EBMT NG President is to continue the excellent work that our Past President Aleksandra Babic instigated. I would like to thank her again for her dedication to the group. Her drive, energy and enthusiasm have progressed our group significantly. I aim to build on this work, improving our impact, strengthening our voice and raising the standard of care that we can all provide.
At the heart of all of our ambitions are our patients. When we increase our knowledge and understanding of the transplant process, they can benefit; their lives are enriched and they are more likely to achieve survival with less complications.
For those of you who were unable to attend Annual Meeting this year I do hope that you will be energised by this newsletter and want to become a part of Lisbon 2018. I know that it will be a fantastic meeting as the seeds are already being sown for the Scientific Program. If there is something you want more or less of but didn’t get chance to complete the EBMT 2017 survey, do please let us know.
We have many projects that are continuing, some of which you can read about in the newsletter and on www.ebmt.org. Look out for bulletins for our International Study day in Manchester, 5th and 6th October. I look forward to seeing you soon."
"The field of Haematopoietic Stem Cell Transplantation has seen huge progress from the first bone marrow transplant to the first cellular and gene therapies over the last 60 years.
Increasing numbers of patients are undergoing transplantation and cell therapy and the nursing care that accompanies HSCT needs to be up to date and delivered in a safe and high quality manner.
As we celebrate the 60th Anniversary of Transplantation, we have seen our Nurses Group move to another era in terms of greater understanding of this a complex treatment. Nowadays our nurses are more involved in all aspects of cell therapies and therefore raising awareness and the recognition of early as well as late side effects is of paramount importance for our patients’ care.
I am proud to say that we have moved forward online through our now well established network of international collaboration and we have embraced a high level of nursing research together with a basic and advanced educational support in developed and low and middle income countries.
We have undertaken a large number of innovative projects, from different documentary movies for nurses and patients, learning programs and e-learning modules available on our website and will launch the first ever Textbook for HSCT nurses later this year!
Reflecting on our Annual Meeting program in Marseille, beside the traditional but stimulating educational program which represents the enthusiasm that our colleagues put into their research, ideas and care for patients; we have introduced satellite symposia which allow attendees to widen their knowledge from standard to advanced care.
We have continued to focus on VOD over the last years not just because of the importance of this condition and its severity, but this is a key area where the role of nurses is fundamental in the evaluation and identification of early signs and symptoms and provides a tangible opportunity to deliver multidisciplinary care.
Our nurses symposia on gene therapy overview and administration have provided an outline of the development of gene-therapy which today is able to provide a substantial benefit in order to fight complex diseases, like CAR-T cells is able to prevent complications of treatment, for example with suicide-gene strategies, and to fix a inherited disorder that damages the immune system.
This year we have continued our awards for best oral and poster, and also added a new award category for best original basic research. These awards provide a great opportunity for us to acknowledge your excellent and original work.
There is a lot of ‘behind the scenes’ activity that goes on to organise our meetings, educational events and to structure research. Without the commitment of the NG committee and board members, this would not be possible and with this in mind I would like to thank each of them for their effort and to all our colleagues and members for dedication to our NG objectives.
I had the opportunity to be part of this wonderful group and to enjoy the challenges of hard work and also lots of fun. It was my privilege and honor to serve our EBMT Nurses Group and I am looking forward to seeing future achievements!"
Following the EBMT Annual Meeting in Marseille, there were a number of updates to our committees and committee members.
Global Educational Committee
The constitution of the Global Educational Committee in the EBMT NG was formally introduced. The chair of this committee is the past NG president Aleksandra Babic. Eugenia Arjona Trigoso and Sulman Siddique are the members.
The Global Educational Committee in collaboration with the EBMT NG other Committees and various Nurse Groups, aims to coordinate and organise outreach meetings in cooperation with other non-profit associations with the same mission. Together they coordinate and provide a range of educational activities for nurses and allied health professionals within the field of Haematology and HSCT.
Communication and Networking Committee
Órla Stewart (UK) joins as a new member covering maternity leave for Lisa-Marie Mcmonagle. Órla works as the Lead Lymphoid Clinical Nurse Specialist in Kings College NHS Foundation Trust. She has a specialist interest in acute lymphoblastic leukaemia. She is the first point of contact for new Lymphoid referrals for bone marrow transplantation for the South East of England.
Caroline Bompoint (France) has joined the Scientific Committee.
Caroline is a nurse practitioner in the Bone Marrow Transplantation (BMT) Ward at the Montpellier Hospital, France. Prior to assuming her current position, she worked in the BMT Ward at Saint-Antoine Hospital in Paris, France. Caroline’s scientific interests focus on BMT and she is heavily involved in international educational events for BMT nurses. The author or co-author of numerous articles in international peer-reviewed journals, she was elected Chair of the French EBMT Nurses Group and of the French Speaking Bone Marrow Transplant Nurses and Coordinating Group in 2011. In 2015, during the Annual Meeting in Istanbul, she was the 7th Merit Award winner for promoting the role of Transplant Coordinator Nurses and for successfully setting up the French EBMT Nurses Group. She is a member of the Scientific Committee since May 2016.
Kathy Goris (Belgium) has joined the Scientific Committee.
Kathy works as a Clinical Nurse Specialist and Research nurse in Allogenic bone marrow transplantation in University Hospitals Leuven, Gasthuisberg. She is a heavily involved in national and international groups including LBARG (Leuven Basel Adherence Research Group), BHS (Belgian Hematological Society) and the co-founder of Lotuz- patient advocacy group for allogenic stem cell transplant, Belgium.
During the Annual Meeting in Marseille, there were outgoing members from a number of committees.
We would like to offer our thanks and gratitude for the contribution they have made during their time in the Nurses Group:
Aleksandra Babic - EBMT NG President
Eugenia Arjona Trigoso - EBMT NG Pediatric Committee Chair
Ilona Siljander- EBMT NG Scientific Committee member
Outreach Nurse Annual Meeting Grant: Yin Lu, China
“It was my great fortune, that with the support of the EBMT Nurses Group, I had the opportunity to join the EBMT Annual Meeting again. I found this meeting very helpful for me, not only in relation to improving the care of hematological patients, but also for the layout of the meeting, including the multiple themes and the professional attitude of all participants.
The most impressive was the Nurses Education Day. Nearly 10 questions which included all the difficulties that patients or caregivers could meet. All the cases which the speakers shared were interesting. While listening I was able to reflect on my own interactions with similar patients in my own clinical practice. I found the comments and questions following each session most enlightening as I often had the same thoughts. The focus of the groups was to improve the nursing care of bone marrow transplant patients.
This congress also gave us the platform to share what we did in our centre in China. Abstract “Investigate and explore the cause of infusion-related adverse events of the third-part cord blood stem cell” was the research which we have done from January 2013 to December 2015. We felt we got some interesting results. This time we were very lucky to present a poster. During the poster sessions, I got the opportunity to communicate with some specialists who expressed an interest in our work. I enjoyed sharing our work with the wider bone marrow community and felt I gathered information to relate back to my own clinical practice.
Although the Annual Meeting is over it has left me with many ideas. I would like to thank EBMT Nurses Group for giving me this precious opportunity. In China, there are many bone marrow transplantation nurses, they are all willing to learn and communicate with each other. I would like to continue to work collaboratively and I hope that with the help of the EBMT NG, we could continue to improve our caring work and support BMT patients to improve their quality of life."
Yin Lu - firstname.lastname@example.org
EBMT Nurses Group Travel Grant: Christina Lim, UK
“Firstly, I would like to convey my thanks to the EBMT NG Group for their support to enable me to attend the 43rd Annual Meeting of the EBMT. It has been a valuable experience for my professional development. This year, the meeting was held in Marseille, France and we were very fortunate to be greeted by a warm and sunny weather.
This is the third EBMT that I had attended, and this year, I was glad that I decided to download the EBMT 2017 App onto my smart phone. The App was extremely helpful as it enabled me to have a sneak preview of the session that I was interested in by downloading and reading the abstracts beforehand. By that, I was able to plan a tailored program for myself the day before the conference. I strongly recommend other attendees to give it a try next year. Another advantage of the App was that most of the presentation slides were uploaded online by the presenting speakers.
It has always been my expectation to meet and network with my colleagues, ex-colleagues and other acquaintances at the EBMT meeting. This year, with no exception, I was able to do that and I was surprised to walk into an ex-colleague of mine at the EBMT exhibition booth who is now a staff member of the EBMT.
My interest lies in the Autologous Haematopoietic Stem Cell Transplant (AHSCT) in Multiple Sclerosis (MS). I was fortunate to be able to share my centre’s experience in the peripheral blood stem cell harvest in MS patients, by a poster presentation, with other professionals of similar interest in AHSCT in auto-immune disease.
The oral and poster presentations that I attended and viewed had reinforced to me the benefit of AHSCT to help improve the MS patients’ quality-of-life by being able to return to work, stop further physical disability, enhance their relationship with others, and increase their independence e.g. been able to drive a car again. It also emphasised the importance of follow-up care of MS patients post-transplant by early detection of increasing viral load e.g. EBV reactivation is common in the first 3 months following transplant, by pre-emptive treatment. There is also an encouraging data, from a single centre in London, where they changed their practice from the conventional use of Hickman line for AHSCT to the insertion of 6Fr Double Lumen PICC, with a low incidence of thrombus event.
My other interest is in the area of Graft versus Host Disease (GVHD). I was excited to learn that there is an eGVHD App developed by the Belgian team, to support the GVHD assessment, using the NIH 2014 staging and grading criteria. It scores the severity of the GVHD at the end of the e-assessment. The App is currently waiting for validation and a CE marking. This particular session somehow reassured me that many clinicians and nurses, and I alike, are not very confident when scoring GVHD, and this App will hopefully make a difference to our practice.
I was pleased to learn that ECP is now the considered second line of treatment in acute GVHD. The meeting also prompted me to give more attention to the importance of assessing the sexual concern of post-transplant patients. Sexual heath such as vagina dryness, erectile dysfunction, loss of libido and strength can affect the quality-of-life of the patient and their partner.
Overall, the EBMT NG Group had worked hard to put together an interesting, high quality program for the nurses, from expertise in various fields. I found it inspiring after the event, from receiving the positive energy from experts around the globe, and it had encouraged me to consider new ways to improve my practice and patients’ experience."