Help with a guideline on Screening to Prevent Fragility Fractures among Adults! Join by Sep 7, 2018 - Compensation offered

[A Former User]

I did the survey but did not qualify. I wonder if you need to have a 'bone disease' to participate?

[A Former User]

When I clicked on the link again out of curiousity it took me back to the questionnaire - more Q's so I finished it up and got the invitation

Annette

[A Former User]

Glad to hear you did the survey Annette. I am working with a working group with Osteoporosis Canada around fracture risk assessment and fragility fractures are a concern and can be an indicator for osteoporosis. I was aware the Canadian Task force is working on this too. This is important work.

Virginia

[A Former User]

Thanks Virginia

So far the online focus groups are not at a good time for me, but I have hopes that I will not the the only one in that position, so may still be included. I have gotten a lot more interested since my fracture risk has increased and I unknowingly had a fracture in a bone in my foot.

Annette

[A Former User]

I had the same experience as you did, Annette. Completed more of survey after going back to retake survey but did not change any of my answers from first time.

[A Former User]

I let them know what happened to me during the survey but they obviously did not change it. I did not change any answers either, just carried on from where it picked up.

Annette

[A Former User]

I did the survey on Sept 10 (ie 3 days after the day they'd hoped to have enough volunteers, although recall they said that they were working on really tight timelines and didn't know if their deadline was possible). I got to the end successfully (since it gave me a screen saying "thank you for completing our survey"), but no one has contacted me about it.

Interestingly, my broken shoulder last year was deemed to be a fragility fracture, so I anticipated that they WOULD be interested in talking to me. Believe it or not, your humerus (upper arm) is not supposed to break .... so even though I somersaulted over a rocking chair when I broke it, it was still deemed to be a fragility fracture.

Annette - what did your "invitation" look like? Was it an email? Or do they phone you? Or was it something on the screen when you finished the survey?

....N

[A Former User]

Hello Ladies,

If you would like I can see if deadlines have been extended, I have not given it much more thought because of the deadline date passed.

I am with the Canadian Osteoporsis Patient Network( COPN), patients arm of Osteoporosis Canada and sit on one of their guidelines committe doing the same as Canadian Task force and we are sharing information.

Annette and Nancy you may want to think of signing up for COPN and becoming a member. Look at osteoporosis.ca/copn to learn more on who we are and how we support people living osteoporosis .

Virginia

[A Former User]

Nancy, I had a similar experience. I tripped on an uneven piece of sidewalk and broken my elbow. They also told me it was a fragility fracture -- weird. If I had been male or younger, would they have said the same thing?

I have been screened for years and deemed osteopena but my last doctor told me some people are born with frail bones and I must be one since the screening results have not changed over many years. They think since my mother was suffering severe malnutrition when she conceived and carried me, that was the cause of my frail bones and very poor eyesight. All that makes sense to me. I didn't realize some people can be born with osteopena or osteoporosis.

I wonder if ageism/sexism and convenience plays into the assumption of frailty fractures. Just thinking. Alies

[A Former User]

Hello Annette,

To followup on your previous resonse regarding fracture risk and a foot fracture. A foot fracture should not impact your fracture risk, a foot fracture is not considered a fragility fracture.

Virginia

[A Former User]

The response I got from the tech who did the DEXA scan matches what you said, that the foot fracture does not qualify as a fragility fracture. However my feet have been affected by rheumatoid arthritis, and I was told that the bones of my feet are diffusely osteoporotic. So when one of the long bones of my foot broke, I automatically concluded it was a fragility fracture.

I seem to disagree with the standard guidelines.

Annette

[A Former User]

FYI - if anyone did the prelim study questionnaire and hadn't heard back .... I emailed the contact userid on the 1st page of the study last night, and got an email this morning inviting me to join in. They requested that I send them back the forms by Thursday of this week.

Here is the contact person: Rossella Scoleri, at scolerir@smh.ca

....N