Report: British Society for Rheumatology (BSR) Conference 2016
On Tuesday 26th through to the 28th of April, The British Society for Rheumatology held their annual conference, with this year's venue being in Glasgow.
This year, there were three scleroderma sessions held during the event. Physiotherapist expert, Will Gregory, who is based at the Salford Royal in Manchester, along with Prof Herrick's team shares his notes on the sessions from the day.
12:30 Exploring the determinants of quality of life in systemic sclerosis.
Prof. Anne-Maree Keenan, University of Leeds. Presenting the work of Bigonya Alcacer-Pitarch
This interesting talk described the results of a series of questionnaires undertaken by people with scleroderma, attending the connective tissue clinic at Leeds Teaching Hospitals NHS Trust. 121 people completed the questionnaire, and this group reflected well the make up of the scleroderma cohort nationally (106 women, 15 men, average age of 57, an average disease duration of 9.5 years. 79% had limited, 20% had diffuse disease).
The researchers performed an analysis to come up with a model for the determinants of quality of life. The analysis produced scores out of 1 for impact on quality of life. They found 4 areas of direct impact:
- Physical function 0.45
- Depression 0.29
- Disease severity 0.16
- Anxiety 0.24
It was found that the area of indirect impact had an impact on these 4 direct areas, which then impacted quality of life. Indirect impacts included breathing difficulties, ulcers, foot problems and digestion problems.
14.30 Immunoglobulin therapy and B-cell depletion in therapy for scleroderma-spectrum disorders.
Dr. Voon Ong, Royal Free Hospital, London
Dr. Ong's talk was about the rationale for using immunoglobulin therapy in people with scleroderma. He reminded us that scleroderma has overlapping pathology elements, namely, immune, vascular and fibrotic. His talk looked at two medications for refractory scleroderma — when a patient that doesn't improve as expected with the standard drugs and treatment.
There are 4 research papers into the use of B-cell depleters. They were initially studied for their beneficial effects on the lung, and later, in papers for the skin and joint symptoms. The latest report was of the EUSTAR cohort and included an outcome of improved skin scores. There was mention of a new drug of this type being studied at the moment (the MEDI 551 study) that works earlier in the B-cell production pathway (not a scleroderma study).
Dr. Ong then went on to discuss intravenous immunoglobulins. These drugs have been assessed in 5 studies, where they showed improvement in skin scores. The effect on the lungs from this group of drugs has not been studied. Their effects on the gut have been very recently studied and benefits were reported
15.00: Risks and benefits of glucocorticoid use in diffuse systemic sclerosis
Prof. Ariane Herrick, Salford Royal NHS Foundation Trust, Manchester
There is a traditional perceived risk of renal crisis if using steroids in managing scleroderma. However, these drugs are used in other immune conditions to good effect. People with early diffuse scleroderma describe issues with painful and itchy skin, loss of function, fatigue and involvement of the musculoskeletal system
It is thought that low dose steroids tablets would help alleviate these issues and if prescribed cautiously should not affect the kidneys. In the ESOS study (an observational study of Europe wide practice involving more than 300 people with scleroderma) 44 of them were taking steroids, so this is not an uncommon practice.
The PReDSS study will look at 72 people for a 6 month trial of medication or placebo. It commences recruitment in early 2017.
15.30 Development and validation of scleroderma biomarker
Prof. Francesco Del Galdo, University of Leeds, Leeds
Prof. Del Galdo is looking at better ways of assessing measurement of disease activity. These were described using 2 methods, through the use of blood test identified biomarkers and secondly, through imaging.
It has been found that some biomarkers do give disease activity similar to the current gold standards of the modified Rodnan skin score. There are a number of different markers being looked at. Samples have been taken across Europe from 658 people with scleroderma. It is hoped that these markers, once fully tested, may be of use not only in monitoring scleroderma activity in people with the condition, but also to aid in the diagnosis of progression from secondary Raynaud's to scleroderma, allowing earlier treatment.
With regard to imaging, Prof. Del Galdo presented his teams work on laser produced images (optical coherence tomography) of the skin, and analysis of this, again, matched well to the skin score. Other centres are also studying this technology.'
All in all, the findings presented at the conference, are very encouraging for patients worldwide, with new therapeutics being tested, as well as, improved understanding of the day to day reality of scleroderma.
Jennifer Arthur attended the patient event and provided a write up from the day:
"I was lucky enough to be able to attend this event in the SSEC Glasgow recently! SRUK attended this event, and hosted a table, alongside many other charities related to Rheumatology, including those representing Lupus, Fibromyalgia, Polymyalgia Rheumatica and Ankylosing Spondilitis.
This was the first patient event, as part of the overall Rheumatology conference held for professionals working in the field. Personally, I think that it is so encouraging that there has been recognition of the importance of patient involvement and partnerships in care. I certainly had the opportunity to mix and meet some lovely people, and share stories and experiences.
It would perhaps have been even better though, if there had been more opportunities for us patients to mix and mingle more with the speakers and professional delegates. Hopefully this first patient event will pave the way for future events.
The day kicked off with a presentation from Professor Pater Taylor from Oxford University discussing the development of Biosimilar medication. This began with a humorous insight into the possible causative and contributory factors leading to the development of Rheumatoid arthritis and other rheumatic diseases. Although not specifically discussing either Scleroderma or Raynaud's, as well know, people with Scleroderma are often affected with many of the conditions associated with RA, or indeed may also have this as a concurrent diagnosis.
This was generally a very positive session to start the day, particularly as the development of Biosimilar 'copycat' medication may mean that there is increased availability of the benefits of biologic medication to more patients. Always good to hear that more people are going to benefit from enhanced treatments. One of the reasons to celebrate new research!
Further speakers included Sarah Ryan (Consultant Rheumatology Nurse) and Suzie Shepherd (Royal College of Physician), both giving presentations that focused around patient involvement and whole person centred care. The general flavour was recognising that patients and users of rheumatology services, need and deserve to be an active partner in their care. Delegates present on the day expressed wishes for both improved psychological support, increased involvement in consultation and improved services for pain management. (in particular experts in this field). I know that pain control can be a difficult factor in many of those with Scleroderma, and I'm sure that improvements to this would be universally welcomed.
All agreed, that it is frustrating as a patient, to be seen as a passive recipient of care, or simply a condition or disease process, rather than a person.
There were further sessions discussing self-management and the general expectations that people have of Rheumatology services. A common shared issue amongst the delegates present was concern regarding delays in diagnosis. I know that this is an issue that many of the scleroderma patients encounter. No easy answers or solutions were proposed on the day, but there is hope that increased awareness and training amongst general health practitioners may lead to prompt referrals to services at an earlier stage of disease activity.
Afternoon sessions focused on both fatigue/sleep (personal issue for me!) and foot care. Both sessions were very positively received in the room. It just demonstrates how the apparently smaller details can be the issues that most impact on people's lives.
The day was summed up by a keynote address from Professor Iain McInnes, ending on an amusing and positive note as he emphasised the hope and research to improve outcomes for all people affected by conditions relating to Rheumatology." - Jennifer Arthur
Write up from the main conference featured on Scleroderma News, Nicola Whitehill's Blog.