Table 1.

Survey questions in August 2020 and April 2021.

August 2020 survey questions	April 2021 survey questions
Demographics
Are you completing the survey as an individual with OI/A parent of someone with OI?	Are you completing the survey as an individual with OI/A parent of someone with OI?
Do you live in England/Northern Ireland/Wales/Scotland?	What type of OI do you/they have?
	Age of individual with OI
	Gender of individual with OI
	Country of residence
	Who do you /the individual regularly see for your OI (tick all that apply)
Theme 1: Effects on therapy
Have you had any OI appointments postponed due to COVID-19?	Have you/the individual with OI ever had a surgical procedure postponed or canceled due to COVID-19 pandemic by the Hospital?
If yes, what was it for?	If you have had a surgical procedures postponed on average how long have these been postponed by in months?
How has this impacted you?	I/the individual with OI have had a scan, such as an x-ray, DXA, MRI delayed or canceled due to the COVID-19 pandemic by the hospital
Has COVID-19 impacted your transition to adult services?	I/the individual with OI have had a day unit treatment, such as IV infusion delayed or canceled due to the COVID-19 pandemic by the hospital
Has COVID-19 impacted your ability to get a wheelchair assessment?	I/the individual with OI have had an appointment with an allied healthcare professional (e.g., physio, OT, nurse, dental, hearing test) delayed or canceled due to the COVID-19 pandemic by the hospital
Has COVID-19 impacted your rehab? i.e., post-surgery/fracture.?	I/the individual with OI have had an appointment with a Consultant/Specialist delayed or canceled due to the COVID-19 pandemic by the hospital
Has COVID-19 impacted how you liaise with schools/further education?	If you have had any appointment postponed on average how long have these postponed by in months?
	If you receive support/care or personal assistance at home on a regular basis to what extent has this been impacted by the pandemic?
Theme 2: Alternatives to consultation
Have you received remote consultations during lockdown?	Have you/the individual with OI received remote consultations/appointments during the COVID-19 pandemic?
Was the remote consultation via: Telephone/ Video/ Telephone and video:	Was the remote consultation/appointment via:
If Yes, was this your first remote consultation?	Going forward is this something you would like to see more of?
If Yes, how did you find this?	I/the individual with OI prefer a hospital appointment via telephone/video call to a face-to-face visit
Going forward, is this something you would like to see more of?
Would you like to suggest any ways this experience could have been improved or do you have further comments?
Theme 3: Effect on mental health
How has COVID-19 affected you?	Please indicate on a scale of 1 to 5 how much you have struggled/or not struggled with the following
	> Weight and diet
	> Mobility
	> Pain
	> Anxiety/mental health
	> Keeping physically active
	> Not seeing friends and family
Please explain the impact COVID-19 has had on your mental health
Theme 4: Perceived risk of COVID-19 (only addressed in April 2021 survey)
In general would you say you/the person with OI's health is: Poor/Fair/Good/Very good/Excellent
Have you/ the individual with OI received a letter from the NHS saying you have been identified as someone at risk of severe illness if you catch COVID 19 because of underlying health condition?
If you answered no to this is it because: You have not been identified as at risk i.e. you have mild OI You are unsure if you should be in the at risk group but you did not feel the need to register You are unsure if you should be in the at risk group but you did not have access to healthcare Other
Do you have any underlying health condition that would also identify you as being clinically extremely vulnerable if you caught COVID-19?
Have you/ the individual been admitted to hospital due to having COVID-19?
In the event that you have either have had COVID-19 or may catch COVID-19, in your opinion do you think you would be clinically more difficult to treat than someone that does not have any underlying health condition?
In the event that you have either had COVID-19 or may catch COVID-19 - in your opinion do you think it did/would take you: Longer than someone without an underlying health condition Same length of time to recover as someone without an underlying health condition Unsure
Have you/the individual with OI ever canceled or postponed an appointment or treatment due to COVID-19?
Have you/the individual with OI ever had to switch or change any aspect of your current therapies to avoid hospital attendance due to COVID-19?
Have you/the individual with OI ever decided not to go to Accident and Emergency with a suspected fracture to confirm diagnosis during the COVID-19 pandemic?
To what extent has the pandemic affected you/the family's ability to leave the house?
Have you/ the individual with OI had a COVID-19 vaccine?
If you/the individual with OI has not had the vaccine why is this?