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Details on new RA Biologics Registry explained
The ISR’s new national Biologics Registry will be called RABRI (Rheumatoid Arthritis Biologics Registry of Ireland) and will use electronic data capture, delegates attending the ISR Spring Meeting heard.
Prof Gerry Wilson, Consultant Rheumatologist, St Vincent’s University Hospital, outlined the development of the various rheumatoid registries in Ireland. He explained that biologics usage in Ireland is very different to that in the UK, where doctors are more constrained by the NICE guidelines. The ISR has examined a number of biologics registers in other European countries and made a visit to the UK last December.
“The other big change is the biosimilars. We are one of the first European countries to have infliximab available in biosimilar form and etanercept came off patent last month and there are at least 10-to-15 studies on the way so we will soon have lots more biosimilars,” he told the meeting.
Prof David Kane, ISR President, facilitating a discussion further to the presentation by Prof Gerry Wilson, Chair of Rheumatology, UCD, with Dr Bryan Whelan, Manorhamilton/Sligo, and Dr Michele Doran, St James’s Hospital, about the initiation and establishment of a Biologics Registry
ISR members have recently set up the Ankylosing Spondylitis Registry of Ireland (ASRI), while a registry for psoriatic arthritis is also just about to be set up. It was suggested during the meeting that the ISR provide more support and structures for these registries too.
The RA registry, which is the biggest registry, is in the advanced planning stages and is being led by the ISR as a whole. It will record patients going on biologics at baseline and then at six-monthly intervals for three years, and then at yearly follow-ups for two years. Current disease activity, functional impairment, existing comorbidities and employment status will be among the data collected at baseline. Follow-up data will record changes in medication usage, disease activity, if they stop using the biologic, why they did so, and so on.
The meeting heard that data management would be a big challenge.
Funding for the Registry will come from industry contributions directly to the ISR, which will then fund the individual units involved in the Registry.
It has been proposed to create a steering committee of five rheumatologists from the ISR to oversee the Registry, with at least one rheumatologist coming from Northern Ireland, with the rest being geographically representative, ideally with one or a maximum of two, from any one hospital group.
Prof David Kane, ISR President, hailed the setting-up of RABRI as a major and necessary achievement.
A targeted approach to back pain ‘more effective’
A targeted, stratified approach to treating low-back pain delivers better results than a generic approach, the ISR Spring Meeting heard.
Addressing the meeting, Dr Susan Murphy, a Physiotherapist at University Hospital Waterford, noted low-back pain is extremely common, with a lifetime incidence of 80 per cent. While the majority of patients recover, relapses are common, with low-back pain particularly common between the ages of 40-to-60 years, but improving as patients get older, she explained. Continuing, Dr Murphy said back pain is more common in women than men, at 3:2, but only 10-to-15 per cent become disabled by low-back pain.
She discussed the findings of her PhD, which looked at the management of low-back pain in primary care and the impact of group-based stratified care.
Dr Murphy detailed the findings of her study, which developed a new treatment programme, on determining if the implementation of ‘stratified care’ when delivered in a group setting would lead to significantly better physical and psychological outcomes in a group of patients with non-specific low-back pain, compared to a matched best care historical control.
It has been found that standard exercise programmes prescribed to low-back pain patients lead to little real improvement.
Under her project, patients were stratified according to their level of risk of persisting symptoms — low, medium or high risk, and were assigned to a specific treatment programme. Patients in the high-risk group displayed high levels of psychosocial distress around their low-back pain including elements of anxiety, low mood or fear. Physiotherapists administering this component of the intervention received extra training in CBT. This approach aimed to give the patients a better understanding of how they could help themselves and focused particularly on behavioural changes. Dr Murphy said that many patients with low-back pain experience psychological distress and this has not been managed, but should be done so early on in their care.
Her study found that stratified group care demonstrated greater clinical effectiveness, particularly in relation to disability and somewhat in pain, at 12 weeks’ follow-up. This was compared with the traditional non-stratified care programme used on patients in Waterford.
“So the findings on the intervention we have developed in Waterford show that stratified group interventions are effective. Basically, managing patients in groups and under this new model of care is effective, and more effective than the generic intervention we were delivering.
“The other novel thing we did was develop an early, short, low-grade psychological intervention for patients with low-back pain. We all know low-back pain is very persistent for some people, who return to our clinics all the time and often it is perhaps because we are not targeting what we should be from the early stage,” Dr Murphy concluded.
Further research is needed on hypermobility among patients
Far more research is needed on hypermobility, as despite being quite common it is still poorly understood, the ISR Spring Meeting heard.
Dr Nicola Ambrose, Consultant Rheumatologist, University College London Hospitals, gave a comprehensive presentation on diagnosing and treating hypermobility, highlighting that this is a complex cohort of patients. The main thing hypermobility patients have in common is their super flexibility and pain, with the various names for their condition “confusing and unhelpful”.
She explained that vascular Ehlers Danlos Syndrome (EDS) is rare, affecting one in 200,000, but is very serious, as 80 per cent of these patients will have had a life-threatening event by the age of 40. “So these patients do badly and it is important to identify them,” Dr Ambrose stressed.
Vascular EDS patients have certain defining physical characteristics, including an elfin appearance and fragile, translucent skin, which bruises easily and ages badly. Club foot is also common.
Dr Nicola Ambrose, UCLH
Classic EDS, which is by far the most common type, affecting about one in 20,000, typically causes very stretchy skin, with lumps over the knees and elbows and no stretch-marks but strange scars. “There is also a genetic test available to identify them,” Dr Ambrose added.
While patients generally like using splints for pain relief, she advised against using them, as they lead to muscle loss. Twenty per cent of Dr Ambrose’s patients are wheelchair-bound, though she noted she works in a tertiary referral centre so will see the more seriously-affected patients.
Dr Ambrose also cautioned against “tightening” surgical procedures. “When you have loose ligaments, you don’t tend to be a very easy person to operate on, you tend to heal slowly and poorly and I’ve very, very rarely had patients who have had these procedures historically who feel they really benefited from them. Rather than going down surgical routes, we just redouble efforts to build-up muscle strength around these joints,” Dr Ambrose told the meeting.
Hypermobility patients also commonly complain of resistance to local anaesthetic, she reported.
Other speakers at the ISR Spring Meeting included Dr Siobhan MacHale, Consultant Psychiatrist, Beaumont Hospital, who gave a presentation on psychorheumatology. During her presentation, she stressed that all illnesses affect both the mind and body. She also maintained that the detrimental impact of alcohol on health is vastly under-recognised and under-treated, and that opioids are “vastly over-prescribed”. Dr MacHale suggested that if some patients seemed to be unable to tolerate any medications, there could be psychological reasons.
She also said depression and anxiety in arthritis patients are under-diagnosed and under-treated, despite the impact on medication compliance, long-term disease outcome and quality of life.
Meanwhile, Dr Connail McCrory, Medical Director of Pain Medicine, St James’s Hospital, Dublin, gave a detailed clinical presentation on the latest updates in pain treatment and diagnosis. He cautioned against the prescribing of hypnotics and promoted the benefits of exercise to maintain function and relieve pain.
The meeting also featured a presentation on neuroplasticity and pain from Dr David Hevey, PhD, Psychology Department, TCD, as well as a session on mindfulness and pain control from Ms Fidelma Falvey of the Oscailt Centre, Ranelagh.