For the last 2 years experts from many different countries have been working together in Project “Key4OI”. The aim of this project was to develop a core outcome set for OI, children and adults.
The focus is on:
Outcomes that are relevant for most people with OI, worldwide, througout a life time.
Input was provided through 16 OI focus groups. Their input has been carefully analysed and discussed by the international Key4OI Expert group in bi-weekly meetings and several so called Delphi surveys. And now it is here: The Core Outcome set for multidisciplinary care and research. Check out the animated video summarising Key4OI here:
In 2020 health care providers in six countries will pilot Key4OI. It will then become available for everyone in 2021. The aspiration of Care4BrittleBones is to use Key4OI as a platform for learning about OI together better and faster, eventually supported through big data. Watch that – very exciting – space!
If you are interested to be more closely involved with Key4OI and consider using it in 2021 and beyond, you can become part of the Key4OI – Affiliates group, who is invited for quarterly videoconferences.
As a currently-elected family representative by our regional OI-association comprising the states of Hessen, Saarland and Rheinland-Pfalz (Germany)-, I was honored to take part in the highly-anticipated conference ‘QUALITY OF LIFE 4 OI’ this year. The conference took place in Amsterdam from the 22nd-25th November 2019.
This conference was expected to gather the scientific, research, medical and many proactive individuals with OI themselves or others representing ‘the patient’ side, which in my view it certainly was successful at. The topics covered at the conference were diverse and encompassing the latest research from clinical trials involving young OIers, such as Stem-cell Injections as a treatment option, to the most efficient medical care structures for patients with OI at a global stage coming from Canada and Hong Kong.
There will be many reports coming from different attendees at the conference from our German side. Therefore, I would like to narrow my reporting to the themes of the conference that stood out to me personally. I would not be mistaken to say that it was probably the first time ever that a conference of this scale managed to shed light on one of the most untapped subjects of all, the psychosocial aspects of OI. As we all know, OI comes in all shapes and sizes, its diversity has posed tremendous challenges to medical teams all over the world for years. Increasingly though, as doctors and surgeons thought they got a grip on how to diagnose, how to manage fractures, how to straighten bones and maybe even how to manage pain. Once again, they found themselves challenged and faced with issues that could interfere with the results, they would expect from the medical and therapeutic treatments provided to their patients.
The psychosocial consequences of OI are indeed diverse and very common. These psychological barriers are also very independent of the type of OI and the age of the person with OI. They range from the sense of isolation as fractures and hospital-stays reoccur more often than wanted to depression, self-esteem and confidence issues and not to forget the extreme lingering fatigue that interferes with the daily activities and performance of children and adults alike.
There was one workshop titled ‘Psychosocial Aspects of OI’ led by wonderful speakers: Kara Ayers (USA), Claire Hill (UK) and Ute Wallentin (Germany). The workshop allowed for discussions to take place around the topics of Fatigue, mental health and pain management. Different Coping tools and mechanisms were also suggested. In addition, there was a wonderful exchange of knowledge and ideas between the speakers and the audience which allowed for the OIers to voice of what mattered to them and had a say as to what was important and what was not. Though it seemed that we are still right at the beginning, we definitely should not let that discourage the efforts and the meaningful work that has been done so far to tackle these issues individually. All with this in mind, it becomes evident that it is an urgent matter to include a well-structured psychological support as a vital and essential part of any OI- treatment starting, preferably, in early childhood. Subsequently, there is an urgent need to improve early screening methods and treatment options to overcome the psychosocial problems for sure.
To sum it all up, I was extremely impressed and glad to see the active involvement of empowered young and adult OIers who are taking the reins of their care and lives to personally direct OI-specific research with the aim to better the quality of their community in the context of the individuals’ varied perceptions. With that I would call on the conference organizers for a follow-up in few years to see what has become of all the studies presented.
Make sure you mark the date November 22nd – 25th 2019, when the international conference QualityofLife4OI will take place in Amsterdam. The conference is an initative from Care4Brittle Bones and is hosted by a coalition of OI-organizations (Care4BB, OIFE and OIF), Medical professionals (ERN – BOND) and the Industry. It is coordinated by Foundation Care4BrittleBones.
The Conference provides a platform to engage about clinical practice and research for people affected by OI. What is the expert opinion on good clinical practice in diagnostics, clinical assessment and treatment of OI today? What do people with OI need most to have good quality of life? What research needs are currently unmet? How can the efficacy of a trial of clinical treatment be evaluated with metrics that make sense for regulatory authorities as well as people with OI? Both qualitative and quantitative aspects will be discussed in an interactive and international setting.
The Conference aims to bring together professionals and people from the OI-community:
clinicians of all disciplines supporting OI,
researchers working on OI-related projects
anyone from the OI-community with an interest in research beyond the personal level
representatives from industry supporting OI
other stakeholders interested in OI
It will provide an opportunity to meet, learn, network and get inspired to improve quality of life for people with OI across borders, professions and boundaries.
Interested to hear more and potentially attend? Subscribe to the conference cewsletter via this link: https://bit.ly/2ON4A6i