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Autoimmune Diseases Working Party Educational Meeting [Virtual]

Nurses Group
Autoimmune Diseases Working Party (ADWP)

24-25 September 2020

Physicians sessions
Summary by Dr Majid Kazmi, Chief of Cancer Services, Deputy Medical Director, Guy’s & St Thomas’ NHS Foundation Trust (London, UK)

This was a unique event being the first virtual educational meeting of the ADWP. With 230 attendees from 36 countries, including participants from Brazil, North America, Russia and Africa, this was the most successful meeting of the working party. In addition to hematologists, it again attracted autoimmune disease experts (neurologists, rheumatologists and gastroenterologists) as well as basic and clinical scientists. Thanks to support of the EBMT nurses group, 23 nurses from 11 countries also attended.

R. Greco (Milan, Italy) as the new ADWP Chair and T. Alexander (Berlin, Germany) as the secretary with Claudia Boglione (Milan, Italy) as the Nurses group lead opened the 2-day session with a welcome and an overview of the activity of the working party. Despite the coronavirus pandemic the working party has remained active both in terms of increasing numbers of patients transplanted but also in the scientific activity with several publications in the last 12 months.

COVID-19 – Impact on HSCT practice and AD management, chaired by R. Greco (IT) and T. Alexander (DE)

Given the immense disruption caused by the SARS-Cov-2 virus the first session was devoted to understanding the nature of the virus, what we have learned so far and its impact on patients with AD or undergoing HSCT.

M. Mikulska gave an overview of the novel coronavirus and the COVID19 (CV19) disease it causes. She also updated us on current diagnostic testing as well as discussed the evidence behind some of the treatments for CV19. The implications of prolonged detection of SARS-Cov-2 in immunocompromised hosts presents unique challenges.

We then looked at the impact of the pandemic on patients with AD. T. Alexander presented data on the impact of coronavirus on patients with rheumatological conditions and B. Sharrack on patients with neurological conditions. The need to balance effective treatment versus risks of covid19 requires a case by case discussion between the physician and patient. It does appear however that CV19 may not have as much risk for patients on disease modifying therapy (DMT) as previously feared.

The impact of the pandemic on healthcare services including HSCT services in the UK and Italy have been unprecedented. Dr’s Kazmi and Greco showcased what changes had been implemented in UK and Italy respectively to meet the challenge. The session generated lots of interest and questions reflecting how we have all been impacted by CV19.

‘Cross-fertilisations’ session from different working parties, chaired by J. Snowden (UK) and N. Cooper (UK)

The purpose of this session was to build on the existing collaborations that the EBMT ADWP has had with other groups within EBMT but also outside EBMT.

The first talk was given by Dr Moore who has pioneered HSCT for AD in Australia, and who gave an excellent overview of the challenges in development of the HSCT programme for AD as well as the scientific learning around immune reconstitution post HSCT. C. Chabannon gave an update on the working of the cellular therapy and immunobiology working party as we enter an exciting era of cellular therapies that are now being developed as medicinal products. Finally, Z. Peric reminded us of the long-term effects of HSCT and the need for structured follow-up for these patients as they transition from early effects to delayed and then late effects. Linkage with other medical specialities to support the HSCT programme is vital.

This rounded off day 1 of a very busy but stimulating meeting and was followed by the business meeting where ongoing and future studies were discussed.

State of the Art and future perspectives, chaired by R. Saccardi (IT) and M. Rovira (ES)

The second day started with 3 state of the Art presentations. First to go was N. del Papa, who gave an introduction into severe systemic sclerosis, presented the findings of the 3 large randomized trials that demonstrated efficacy of HSCT in systemic sclerosis, before discussing some of the unique challenges presented by patients with SSc undergoing HSCT and requirement for detailed cardio-respiratory work-up. P. Muraro then discussed the immunobiology of MS and the evidence for HSCT in immune reset before reviewing the data around efficacy of HSCT compared with DMT. The current and planned 5 randomised trials will hopefully establish the role of HSCT in relapsing MS. Finally, M. Rovira gave an overview of the use of HSCT for inflammatory bowel disease, which has had mixed results. Deep remissions have been obtained but not maintained after HSCT. However, the disease has been easier to control post HSCT with previously ineffective therapies suggesting that protocols with some maintenance component may be useful.

Polling for audience experience of HSCT

The interactive polling session surveyed the audience around several topics related to management of AD and in particular access to HSCT services. The technology worked well giving real time feedback.

Nurses, physician and patient session, chaired by H. Jessop (UK), C. Boglione (IT), B.Sharrack (UK), M. Kazmi (UK)
Summary by Helen Jessop, BMT Coordinator, Royal Hallamshire Hospital, Sheffield Teaching Hospitals (UK)

Following two years of successful parallel Nurse sessions at the ADWP Educational Meeting this was the first joint session bringing together Nurses, Physicians and Patients in the specialised area of stem cell transplantation, originally planned as a physical meeting, but held in the virtual format due to the on-going Covid-19 pandemic.

Caring for patients with Systemic Sclerosis undergoing HSCT, chaired by M. Oudshoorn (NL)

Mirjam Oodshoorn, a Nurse Practitioner at the Leiden University Medical Centre, very successfully utilized a patient’s journey through HSCT for systemic scleroderma to illustrate this process. She highlighted the additional screening required pre mobilisation and conditioning, and the need for close liaison between the rheumatology and haematology departments. She also emphasised the need for careful monitoring during the process particularly for fluid overload, for viral reactivations post transplant and the management of fatigue, which can be worse in this patient group.

Management of febrile neutropenia after HSCT, a Nurse perspective, chaired by A. Carmagnola (IT)

Anna Carmagnola, a Nurse from the haematology and BMT Unit at the San Raffaele Hospital in Milan, gave an excellent description of febrile neutropenia, including the risk period during HSCT and the crucial role of early identification to reduce morbidity and mortality. She discussed the additional risk in patients with Autoimmune disease and described the qSOFA and SOFA scoring systems used in her institution to identify patients at risk of a poor outcome. She presented the data from a prospective analysis undertaken at her centre comparing the two scoring systems and demonstrated that the quicker qSOFA score was able to identify such patients and enable prompt introduction of treatment.  

The role of rehabilitation before and after AHSCT with patients with Multiple Sclerosis (MS)– A Clinical Practice Guideline, chaired by F. Roberts (UK)

Fiona Roberts, a Specialist Neurological Physiotherapist from Hobbs Rehabilitation in the UK, explained to us the great work she and her colleague have been doing with the Working Party to address this unmet need. Liaison with haematologists, neurologists, physiotherapists and nurse specialists across Europe has led to a consensus paper with treatment guidance for practitioners in the pre transplant, acute, subacute and community phases of the procedure, utilizing standardised outcome measures to monitor change. This paper has been submitted and the review process is on going.

The Dutch experience of Multiple Sclerosis patients travelling abroad for HSCT, chaired by E. Kramer (UK)

Ellen Kramer, with a background of clinical pathology in haemato oncology and as a collection facility manager in Zwolle ND, presented fascinating data from her survey of Dutch MS patients who have travelled abroad for HSCT, as this treatment for MS is not available or funded in the Netherlands. 30 patients with MS completed her survey. None of these patients were referred by their treating physician and of concern 6 had received no medical follow up care when they returned home. They had paid on average €40-60k for the procedure, funded either by crowd funding or at their own expense. No patients received reimbursement from their health insurance company for the transplant but 21/24 were covered for their follow up appointments. Her study is on going.

Experience of going to Mexico for Transplant, chaired by C. Wyatt (UK)

Caroline Wyatt, a journalist for the BBC, very eloquently shared with us her experience of travelling to Mexico for HSCT treatment for MS, including the effects on her life and career. Her decision to go was made after she was found to be ineligible for a clinical trial in the UK. She outlined her reason for choosing the clinic and the treatment she received. She spoke very highly about the standard of care at the clinic and the follow up care in the UK. Although some of her MS symptoms are now returning, she explained that overall she has benefited from treatment and does not regret having it.

All of the presentations in this well attended session generated many questions and had the meeting been face to face, discussion would have continued long after the allowed time for this virtual event.

ADWP Educational Meeting
Virtual platform of the ADWP Educational Meeting

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