If you are a person with OI and affected by hearing loss — mild, moderate or severe—, you might wonder how hearing loss is being diagnosed and followed up to check on the outcomes of treatments and other types of services available for managing this.
In a project called “Key4OI Plus” initiated by the Care4BrittleBones Foundation, a group of experts in audiology and otology and a patient-expert is working to define how hearing loss and treatment outcomes can be measured consistently. We will also make recommendations on the follow-up of hearing loss. This way we can screen for development or progression of hearing loss. Standardizing measurements for hearing loss should make it easier for patients with OI get appropriate testing. It also makes different research studies more comparable which helps in optimizing care for OI patients with hearing loss.
In the process of selecting relevant measurement tools we would like to have input from the OI community, as people with OI can tell best the problems they meet in daily life due to hearing issues. The KEY4OI+ patient input "HEARING FOCUS GROUP" will take place in January or February in one or several groups. It is going to look at what 'outcomes' we are hoping for. Those 'outcomes' may pertain to different categories of experience, depending on what type of hearing loss or related impairment we each have, at what age it occurred, and in what part of the world we live.
The 11 questions below are designed to help us gather basic information about the people with OI who wish to participate in this patient focus group. We'll be most thankful if you may spend 8-10 minutes to fill it out, by February 15th, 2021. After that date, we will constitute the group and schedule its meetings using accessible participatory tools. If you have any questions, please don’t hesitate to contact us !
THANK YOU FOR YOUR PARTICIPATION !
Dagmar Mekking — Key4OI+ coordinator :
dagmar.mekking@care4brittlebones.org, +31 - 652096361
Diane Maroger — Key4OI+ patient expert for hearing :
Dmaroger@gmail.com (text or whatsapp +33 6 14679879)
