#BSR21

Juvenile Arthritis Research at #BSR21

We were honoured to have two of our abstracts accepted for the BSR conference, both based on the COVID-19 European Patient Registry that we managed throughout 2020. You can read about them here.

COVID-19

Unsurprisingly there were a number of sessions about COVID-19 and the impact the pandemic has had on people with rheumatic conditions. In a number of studies, patients have reported significant negative impacts - anxiety, loss of income, and loss of social contact. However, alongside this many have also found that changes in pace and lifestyle have benefitted them.

Supporting remote consultations

There was a lot of discussion about the rise in remote consultations, and the tools being developed to help with this. With adult patients they have done trials in some areas where patients assess their own joints at home remotely rather than having to travel in to clinics. That works well when people are trained properly first to know what to look for, and works well for routine checks (it is easier to identify a change if you check a joint regularly than if you only check once every 6 months). It hasn't yet been checked in children, but may be soon.

Together with ENCA, we are currently running our own study on telemedicine which can be found here. Please do share your views with us on this topic by completing our survey.

Supporting patients between consultations

Tools are being developed to help patients monitor and manage their condition at home. Digital tools asking for updates each day or week that feed directly back to the hospital help identify any problems much earlier, and enable doctors to see what has been happening throughout the time between appointments (rather than having to wait the full six-months and rely on people remembering how they were for the full period). At the moment, this is based on adult care but which would likely be extended gradually to younger people with arthritis.

The value of exercise

One of the themes of the conference was the need to support patients holistically, not just in managing joint pain. Nordic Walking and other exercise has a huge range of benefits, and one hospital has done some trials to see the benefits - which have been really valuable for patients with arthritis. Again, just adults in the trials, but the evidence shows the benefits of exercise for all ages. It can be hard if you are in pain, so it is important not to overdo it, but also really important to get some movement in where possible.

In our own resources that we have available to children and families affected by JIA, we always emphasise the importance of physiotherapy and a healthy lifestyle as a key part of treatment.

Self-management

On a similar theme was a talk about supporting self-management. The emphasis was that it is the responsibility of clinicians and the whole medical team to support patients in self-managing their condition - it is not up to patients and their families to do it alone.

Self-management involves how day-to-day pain is managed, reducing the likelihood of flares and knowing how to manage during a flare with the aim of living a full life in spite of your condition.

Managing pain

There were talks about practical tips to address pain. These included therapy (such as CBT), exercise and sleep. Taking small steps towards a bigger goal. They recognised that whilst all health professionals ask about pain, none of them seem to have responsibility for taking the pain away.

We know from our own experiences that for children it can be even harder to describe pain making it harder to manage and reduce pain. Getting a child used to using a pain scale from a young age could help them in being able to communicate the variation in pain they feel over time.

Genetics

We also attended some really interesting detailed talks about genetics and how they have used genetic markers to try to identify the best treatment option for patients. They have done some of this in Lupus already, and I'm a representative on the CLUSTER study which is doing the same in JIA. The good news is that they are making progress. Unfortunately what they have discovered so far in the study is that genetics is far far more complex than anyone considered and there isn't an easy answer of 'use this medication because you have those genes'... yet.

Adolescent and Young Adult care

There was also an excellent session by a specialist in Manchester whose role is to support adolescents and young adults (AYA) as they move from children's hospital-based care to adult services. The speaker gave a lot of really good clear messages, which will hopefully help other hospitals improve this hugely as we know it is an area that is lacking at the moment.

Here at Juvenile Arthritis Research, we are hoping to launch our teen support pack soon which is another tool to support young people during the transition process from childhood to adult care.