Quality of Life 4 OI International Conference
- Posted on Nov 27, 2019
BBS staff and Trustees attended QoL conference in Amsterdam
This was a 4 day International conference hosted by a coalition of OI organisation and medical professional coordinated by the Research Foundation Care4BrittleBones.
The BBS were invited to speak about our journey into Research, we also had the opportunity to find out all the latest updates on treatments and care for OI. Patricia attended an update on the BoostB4 programme held by Dr Cecilia Gotherstrom and Dr Eva Astrom of the Karolinska Institute and we learned the trial is underway in both Sweden and in the UK.
We learned of a study called the “MOI study” being run by Prof Nick Bishop for children (aged 8-17) with OI who have not yet received any drug treatment; the study will look at what the response to an existing medicine, losartan, is like in terms of increasing bone density, improving muscle strength, and any effect on quality of life. Losartan has been used for many years in children for the treatment of high blood pressure; the laboratory studies suggest it could be an effective treatment for OI as well. They hope to recruit 6 children from the UK to the study, and possibly another 3 from Ireland.
Coreen attend the Workshop on Diagnosis of OI, led by Dr Meena Balasubramanian from Sheffield and Dr Cormier from France. There were updates given on the ERN Whitepaper, a talk given on the patient perspective of issues in relation to Diagnosis, as well as covering topics such as non-accidental injury and other conditions which can mimic OI.
Dr Kassim Javaid Chair of our MAB delivered an excellent talk about how the people who are ‘expert’ in their own condition should be more involved in informing and educating the healthcare professionals as opposed to the current trend where people with the ‘condition’ are being encouraged to learn more about systems and processes. The talk was well received.
President of OIFE Ingunn Westerheim delivered a summary update on the session about ‘empowerment’ which Tracy Hart of the OIF and Patricia Osborne of BBS took part in. We also heard a passionate account from Dr Laura Tosi about her amazing work in the USA, and Epag Member of the Bond ERN group, Rebecca Tvedt-Skarsberg gave a joint talk and update about ERN’s.
Member Penny Clapcott and patient representative of the Brittle Bone Society Scientific Committee attended the workshop on psychosocial aspects of living with OI.
Penny wrote: “Something that we all agreed on is that this topic is often over looked and only recently started being researched. For me this topic is really important, we’re always told we have unbreakable spirit, our quality of life (QoL) is determined originally by other people’s perception of what they think, how they’d cope in same situation or more commonly fracture rate with the opinion that less fractures equals better quality of life. Whilst elements of this does impact on our QoL it was refreshing to discuss this on a more holistic approach.
Mental health, anxiety, dealing with repeated trauma all have an impact of QoL. Some intertwined with OI, some relating to just having a disability and not forgetting some of it could be from being a human and that anyone can face these issues. Put into the mix other factors such as bone pain, fatigue, internal and external ableism can have the biggest effect on our QoL. It’s clear it’s a very emotive and complex topic. We were in agreement the need to be able to statistically research QoL however with the acknowledgement it is very subjective and a fluid feeling. What one person may feel to them being high QoL will be very different to someone else. It’s a very broad topic and Saturday’s session was a whistle stop tour of some of the key challenges there are into researching into QoL but it’s refreshing to discuss and acknowledge these factors when talking about QoL.”
There were also talks given around Multi Disciplinary Care, Patient Data, Registries and outcome measures and there were workshops held on Medical Treatment Options and Roadmap to Surgery.
Copies of talks will be available in due course on the Quality of Life 4 OI website.