Covid 19 and Osteogenesis Imperfecta

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Patient-reported experience of clinical care of osteogenesis imperfecta (OI) during the COVID-19 pandemic

 

The Brittle Bone Society surveyed our members during August and September 2020 to find out about individuals experiences during lockdown. We carried out a follow up Survey again throughout March and April 2021.  The surveys included questions about cancelled/postponed appointments, experiences of digital consultations,  impact on mental health and wellbeing, and experience of shielding and receiving the vaccine.

We would like to thank all individuals who took time to respond to the survey’s. We received 107 responses to the first survey and 124 for the second.

We would also like to thank the Centre for Rare Conditions in Glasgow who worked with us to analyse the data, and all other contributors who made it possible to get the paper published.

 

The full Published Paper can be downloaded here.

An overview of the results can be seen in this Covid-Poster.

 

Initial analysis from the 2021 Survey

 

Covid 19 Survey results

 

 

Analysis from the 2020 Survey

 

Professor F Ahmed and Dr C McDonnell provided a talk with preliminary findings during our Virtual Conference which you can view on our youtube channel.

The results will help us to improve our charities resources, as well as feedback to Policy makers and Healthcare professionals on what has worked well, what could be done differently and what we should be looking at for the future.

 

Covid 19 Survey results

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