Pain is reported to be the main challenge for people with OI besides fractures. More than 60 percent of people with OI have chronic pain, and the percentage and complexity increases with age. 83% of adults with OI have chronic pain.

In spite of this, there is very little information about how you can manage pain as a child or adult with OI. There is also little knowledge and awareness about different kinds of pain in OI among people with OI and professionals.

An international resource group

On January 25th 2022 we organized the kick-off of the Pain & OI project, which is a collaboration between the OIFE and the OIF (USA). It includes a group of dedicated professionals who have experience in pain management, pain research and/or pain & OI. Originally it was thought to be more of a fixed expert group, but people change jobs, projects and priorities. So we have renamed it to an international resource group on pain & OI. We have also included some experts on other rare bone conditions than OI.

At the moment, the resource group includes ca 30 participants from 12 different countries, covering both pediatric and adult professionals. It’s a very multidisciplinary group which include PTs, orthopedic surgeons, endocrinologists, rheumatologists, anaesthesiologists, pain specialists, psychologists, pediatricians, researchers, nurses and a social worker. The group also includes two professionals who have OI themselves. In addition we have representatives from OIFE and the OIF, who contribute with administrative support and input from the perspectives of adults with OI and parents of children with OI

We have agreed on the common goals:

  1. Recommendations on how to assess pain in OI incl. different kinds of pain
  2. Recommendations on how to measure pain in OI in the clinic and in clinical trials
  3. Educational activities about OI & pain to various target groups
  4. A toolbox on management of chronic pain for children and adults with OI

We have had five constructive workshops in 2022 and 2023.

Our goal is to present some results at the Topical Meeting “Balancing life with OI” in Stockholm from June 9-11th 2023, where pain will be one of the main topics.

In the video below you can see a talk which explains the background for the projects, which was given by Ingunn Westerheim at the OIF Townhall meeting in autumn 2022.

In addition, OIFE and the OIF are involved in another industry sponsored project related to OI & pain, which includes literature search and qualitative interviews. 

Some important questions to discuss

How does pain in OI differ from pain in other conditions?
What is the connection between OI pain & hypermobility, sleep, fatigue, soft tissue, inflammation, obesity and arthritis?
How can we prevent chronic pain by providing better acute pain management?
Do pain diaries make sense? Are people motivated to use them?
Will ICD-11 provide a better classification system for chronic pain?
What is the connection between pain and physical function?
What coping strategies are most beneficial when it comes to pain & OI? Do people with OI ignore (cope with) their pain for too long?
Are there any factors that help buffer mental health problems because of pain? Ex: peer support, parental support, coping, resilience etc.?
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