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Osteoporosis

Information needs for people with osteoporosis

Most of the people we talked with had been given information about osteoporosis by their own GP, consultant and nurses, or given leaflets to read. Others had looked for further information from the internet, national support organisations and newspapers (see also Sources of information).
The people we talked to had different attitudes to information. Some wanted to find out as much as possible about the condition, while others said that they didn’t have a need for it. Sydney said that he doesn’t want to worry about osteoporosis and rather than seeking information, he is more inclined to use a ‘common sense’ approach in his daily life. Valerie said that she is not spending her life thinking about what she might have wrong with her and she is trying to get on with earning a living.
 

Sydney hasn’t looked for any further information in case it causes him to worry.

Sydney hasn’t looked for any further information in case it causes him to worry.

Age at interview: 86
Sex: Male
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Did you know much about Osteoporosis?
 
Nothing at all, I don’t know much now really.
 
No?
 
No.
 
What do you know?
 
Well it no it’s a, I wondered if it was anything to do with me doing the brittle bones or what went by the way I fell on that you see? With this hip, afterwards you begin to think about how that went and I mean I wasn’t even, carrying anything on me bike. I stopped me bike and put me leg out like you would just to, then it just crumbled.
 
Would you like to know about that sort of things or?

 

Not really no because I can hear, [clears throat] it brings more worry on doesn’t it if you’re that way inclined and I, commonsense comes into it, I mean I packed up me bike straightaway because I knew if I went down again I could’ve, well end in a wheelchair, and I was over eighty you see then, well eighty-three I was riding my bike then, three years ago right?
Some people didn’t know much about osteoporosis at the time of their diagnosis and wanted to find out more. Some like Carol were shocked to be diagnosed because like many she was mistaken in believing that osteoporosis is ‘an old people’s disease’ and she saw herself as fit and healthy. Having access to information and advice soon after diagnosis was very important to many people, but Beryl didn’t know where to go or who to ask for information.
 

Having information which was easily accessible stopped Carol from thinking negative thoughts when...

Having information which was easily accessible stopped Carol from thinking negative thoughts when...

Age at interview: 71
Sex: Female
Age at diagnosis: 70
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How much did you know about osteoporosis when you were diagnosed with it?
 
Nothing. Nothing at all. Well when I say nothing, in my mind I thought it only happened to old people. Where as obviously it doesn’t. And I knew that obviously it was a problem within the harder casing of the bones. That this sort of mesh gets very sort of thin.
 
But I didn’t really know anything about it. I always associated it with old people. And I suppose people would look at me and say I’m old. But I didn’t consider myself old because I’m so fit. Hm. And I think you’re as young as you feel. So I didn’t know anything.
 
Hence I was very lucky to have a contact who deals with osteoporosis patients. And I immediately got all the information I needed from her in leaflets, books.  
 
But also she was able to talk to me about it. And she gave me tremendous support, which I think is so important when you are diagnosed because the fear that sets in. I just visualised myself in a wheelchair, not in ten years time, perhaps in six months time. And I honestly thought my life had come to end. I really did. And I was very depressed about it.  
 
So having the information easily accessible, it was so important to me, because I was just at a very low ebb. And the person that gave me the information, they were very positive, encouraging. And I was made to realise that it wasn’t the end of the world.
 
So having got the information obviously then I read up about it. I think it’s like any condition you always know more about it if you have the condition. Not always, but generally because you make it your business to find out, more about that condition. Yeah.
 

Neville might have persevered more with his medication if he had more information about...

Neville might have persevered more with his medication if he had more information about...

Age at interview: 74
Sex: Male
Age at diagnosis: 69
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I never knew anything about osteoporosis. My GP gave me a leaflet, which does, didn’t say very much about it. And to this present day I still don’t know nothing about osteoporosis. So I know it, you know, I have to be careful about, breaking your bones. I’m aware of that fact. But other than that I just carry on.

 

I think if I’d had more information, probably knowing what it involved, I may have persevered more. But I really haven’t had any form of information about osteoporosis. One piece of paper, that’s all I’ve ever had. Nobody’s ever spoken to me about it, what it involves or, and they just said to me, “Well, you’ve got to be a bit more careful in case you break your bones.” And that’s as far as it’s gone.  
Those diagnosed many years ago like Joan, made the point that now there is much more information available. But a few, like Gloria and Iris, believe that the content of the information needs to ‘lighten up’ a little bit.
Many of the people we talked with said that they still have information needs regarding medication, self-help and how osteoporosis will affect them in the future. People wanted to find out information on a diverse range of issues including the rates of success (and failure) of the current medication available in the UK, why the dosage of alendronic acid is the same for everyone regardless of size and height, what type and how much weight bearing exercises to do, if there are alternatives to pharmacological treatments and specific information to halt bone deterioration.
 

Clare wants to know how she can help herself now so that she can maintain her independence as she...

Clare wants to know how she can help herself now so that she can maintain her independence as she...

Age at interview: 65
Sex: Female
Age at diagnosis: 64
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Any information that the doctor gave you about this medication or about how to take care of yourself?
 
No. There was no information. I think this is part of the, the trouble of being vaguely medical, they expect you to know it [laughs] And so I didn’t have any information and I then came home and looked up on the website and found the osteoporosis, porotic society, osteoporosis society and I didn’t find that terribly helpful in that the things that I wanted to know were, I may be larger than some people, is the dosage the same for me as it is for a small person of 4’ 10. How much activity should I do? What type of activity should I do? And can you overdo it? And just ordinary questions like that I found, I couldn’t really find the answer to.
 
Any other question that you had at that time?
 
I did wonder whether I, what was related to osteoporosis, what was related to the calcium being seeped out of the bones other than lack of exercise. Whether it was anything to do with my thyroid or any other glands. Or the endocrine system in general. Or hormones in general. But nowhere can I find the answer [laughs].
 
So, the number one concern is really, what are the alternatives, alternative treatments? Medications. How can I self-help? How, what’s the best routine that I should have in every day, daily living? And then what does the future hold? And, can I prevent this type of thing? The, the crushed fractures, can I prevent them happening?
 
So those are the broad outlines. And then, within that, with the first one, I was only told about alendronic acid. I was also advised about vitamin D but I didn’t, I wasn’t prescribed it. And why not? And what can one take, and what are the alternatives? I really would love to know.
 
And with lifestyle, I would like to know whether walking is better than swimming. Because walking is weight bearing, swimming is not. How much to do? And whether it depends on the severity of the osteoporosis how much you do? And as an individual why do I take exactly the same as everybody else takes, because I’m probably bigger or smaller than they might be?
 
And then for the future, if I’ve done the things that I’ve meant to do in daily living to prevent it getting worse, does this negate crushed fractures later on? Does it negate fractured head, neck of femur and so on? And have I got to live downstairs and not be upstairs and [laughs] in a wheelchair. The last scenario.
 
I think as we grow older we don’t want to be a bother to anybody so, or I don’t’ anyway, so if these factors that I am told now would prevent that type of thing, being dependent on other people, then that is a big concern for me really. Hmm.
 
Losing, losing your independence?
 
Yes, that’s right. Losing my independence [laughs].
 
Have you looked at any other website or found information?
 
No, I haven't, no. I decided to take the medication I was given and just get on with life and forget about it. And I'm so busy that I really haven't had time to think much about it anyway.  
 

Iris would like information and advice that is relevant for an active person and she tries to...

Iris would like information and advice that is relevant for an active person and she tries to...

Age at interview: 60
Sex: Female
Age at diagnosis: 59
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I would. I would like information that is relevant, yes, for an active person. Not oh good look at her bent double and, you know, oh she can’t manage with a, you know, she has got to have a stick and, I found it, when I went on the web site I found it very frightening. When I started, you know, I started looking at side effects and I thought, I don’t even want to go there either.
 
The side effects of your medication?
 
Of medication and things. Do you know, I just don’t think it’s helpful. I know you have to know things, but you could get bogged down with all the negatives when it should be promoted. I try and look at it as how lucky were you, that you fell over, that they found that you had it at 60, so that you could be taking medication to prevent it being worse. Now rightly or wrongly that is the way I look at things, because your mind is so persuasive, you know, if you get into this, oh God. They say that this, you know, you could have problems with your gums with this and you could have and so and so with that and is that helpful and lose all your teeth next year or, it is just not helpful is it. So that was my thing really. So I don’t look on the internet about it any more. I have noticed whether that’s because I have been diagnosed that there is much more information around these days. In women’s magazines. Absolutely everywhere, even on the television now for getting your calcium servings a day, getting out in that sunshine for 20 minutes a day and everything else. But it is like anything else, if you are suddenly brought up aware of something, you do notice it everywhere. It is like if you are going to go to Scotland for a holiday all of a sudden, the literature and everything around you relates to Scotland isn’t it. Because you just notice it.
 
So yes, that is what I would like, people my age, coming up to, you know, who have looked forward to their, their retirement, you know, to be doing things, not to be, you know, sort of trodden down by this and …
 
Would you like to talk to other women like yourself with osteoporosis, who are sort of, sixty, active?
 
Yes, probably. You know, I have been reading case histories in here. This came through with the Actonel I think. There were four lots, and they have got a case history there. She’s pretty much like me, you know, got grandchildren, getting out there, doing it, and everything else. So, yes, I found that, sort of quite positive, you know.
Another issue raised by Michelle is that new information is appearing in medical journals all the time and health professionals need to update their health advice to patients accordingly. Similarly, as more medication becomes available some people would like to know about the advantages of new treatments. Several people have questions regarding zoledronic acid; Aclasta  and would like to know who gets recommended for these drugs and why and whether the yearly infusion is a better treatment than alendronic acid as a weekly or daily tablet.
 

Chris believes she needs to find the information she wants herself and not rely on medical...

Chris believes she needs to find the information she wants herself and not rely on medical...

Age at interview: 52
Sex: Female
Age at diagnosis: 45
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I have been thinking recently that I need to be more, a bit more proactive about it and find out whether there have been any developments and whether there’s any medication that is probably better for me actually. I know there have been some developments, but I’m not, I’ve not really researched it. And it really I feel is down to me. I don’t feel as though I can rely on the medical profession and my doctor to inform me of anything. It’s me that needs to sort it out.
 
I think I need to do more research regarding the long-term effects. As I said before, I didn’t realise osteoarthritis was something that would be affecting me as a result of the osteoporosis. I’m wondering what other things I should be expecting in the long term so I won’t be surprised in the future. I think that should be something that should be in-, you should be informed as a patient with osteoporosis by the medical profession.
 
Have you found any Internet sites helpful?
 
When I initially did my research on the Internet, I found that there were some Canadian sites and American sites from the US that had more information than in England about osteoporosis. And that’s what I did. I looked it up and read the information that was on those sites.
A few people felt that that there needed to be greater awareness of osteoporosis amongst the general public, with more information easily available in GP surgeries.
In particular, the men we talked to felt strongly that there is still insufficient information and awareness about the fact that osteoporosis affects men. Dennis said that he doesn’t see any leaflets or other printed material in GP surgeries or hospital clinics about this important piece of information.
 

Keith thinks there needs to be more awareness and information about the fact that men can develop...

Keith thinks there needs to be more awareness and information about the fact that men can develop...

Age at interview: 55
Sex: Male
Age at diagnosis: 54
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Were aware that Osteoporosis was something that affected men as well as women?
 
Well frankly, actually I wasn’t until you know when I had the blood tests, I mean I actually didn’t know that men got it. And it was only when I did know that men got breast cancer, which is why I went straight with the lump you know, but that’s entirely went for my girlfriend because she had an old friend who died of it, and but it wasn’t until my, you know, my GP sent the blood test results to the endocrinologist and a report came back and he just said, a possible risk of Osteoporosis in later life. You know because the testosterone is rather low, it’s low, you know it’s low-normal. And that’s the first I knew of it. I thought, ‘Men, men can’t get Osteoporosis?’ You know?
 
Okay, so it was,
 
My GP said it’s extremely unlikely, because you’re actually in the normal range. And it is unusual for men to get it. So it, she said the bone scan will almost certainly be negative but you know he’s obviously playing safe. But it wasn’t you know?
 
Do you think there is enough awareness about the fact that Osteoporosis can be, can affect men also?
 
Well perhaps there isn’t enough awareness. You know I mean if I didn’t know, you know. You see I knew my mother had it, but she never ever mentioned oh men get it too. I thought it was just something which women got, so I’d never heard it, I don’t know any man who’d ever you know had a fracture as a result of Osteoporosis. You know so as far as I say I wasn’t aware of it.
 
Okay. What do you think needs to be done?
 
Well, I tempted to say, there’s no point in making men aware of it, unless they’re going to give them more bone scans, because otherwise what’s, they’re going to say, well I might have Osteoporosis, but how do I find out? The only way is to, you can find out is a bone scan. You know maybe in the past, I mean there were not so many units around and it could’ve been, and you know of course in those circumstances only people who you know were at risk were going to get scans. I don’t know whether things have changed enough in fact for… I do know that there’s a unit in [city], and I know there’s one at [city], and I think there might be one at [city] as well, I don’t know. but if there are now, you know you know, if there are now sufficient units for everyone in the country for people to get them as a matter of routine, then you know maybe there should be some sort of screening.
 
You know I couldn’t say that, I don’t know what the statistics are, I don’t know how many men get say you know get hip fractures, or fractures as a result of it you know so how serious a problem it is, you know. Now you know if maybe beforehand there may be so few I don’t know, in which case, it’s its not a big issues, because if it’s a substantial number then obviously it would be I think a good idea to get it diagnosed earlier, so you can start taking treatment.
Information needs of younger adults
All the younger adults we talked to thought that the current information available is unsuitable for younger people who may be working full time or busy raising a young family. They thought that the bulk of the information is directed towards older people and younger ones have being overlooked. When David was diagnosed at the age of twenty-five, he got the same leaflet as his granny who was seventy, even though they had different circumstances and information needs. Moreover, David doesn’t think that leaflets are a good idea for younger adults and a website and/or resource centre would suit their need for advice and information better. He suggested that the balance needs to be right between factual information and a positive encouraging message. Jane and David thought that information for younger adults should aim to provide practical ways of how to cope with a chronic condition but still lead an active life.
 

After her fractures, Jane wanted to get fit and get on with her life but she couldn’t find any...

After her fractures, Jane wanted to get fit and get on with her life but she couldn’t find any...

Age at interview: 42
Sex: Female
Age at diagnosis: 36
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I think at that point I was first introduced to like the societies who look after my two illnesses. And it wasn’t, one was all right and I wasn’t particularly too impressed with the other one. Because it gave me my worst fears of life really, visually.
 
You can mention them.
 
Can I?
 
Yes.
 
Well the Osteoporosis Society just seemed to be this quite positive, older aged web page and society. But really I’m 36 and completely ruled by design and I didn’t really want to be associated with it and it scared me. And, and the whole of the back was to do with stair lifts and quick access panel out of baths. And really all I wanted to do was get fit and do as many things as I could that improved the quality of my life quickly and for a long time. And I couldn’t seem to find those really. And I couldn’t seem to find people who didn’t just say, “Oh, you know, you’ve just got to get on with it.” But actually understood what a fractured vertebrae feels like and how it stops you doing a lot of things. And also the fear of, you know, being told by a consultant you know, “Don’t have a trauma, don’t fall down.” Suddenly you start to make you walk really funny because you think, “God, I can’t fall down. I can’t ride a bike because what if I get knocked off it.”
 
 
I phoned them up because I got given the, a booklet on osteoporosis through pregnancy. So there was a nurse you could phone up. But I suppose it wasn’t what I was looking for really. Because at the time I was probably, I was wanting someone to say, “If you do this, this and this and this then you should, you know, it will be all right.” And I got given a few numbers of women who had gone through similar thing but they, they’d gone through it like ten years’ previous, so they were well on the other side of it and then they were very up and at the time I was very down about it. And so, and I did, I offered all my consultants my name and number if anyone else comes in but no-one’s ever, you know, got in touch to talk about… And the only time I ever heard about it ever’s some article in one of the newspapers. About a woman who’d gone through a similar thing and it was, it was quite nice to read about it. And she wasn’t having a fantastic time, you know. She’d had a really rough time, so it was quite nice to be able to relate to it.
 
But, no, I didn’t, and then I was a member of the osteoporosis people for about a year and then I stopped.
 
Why?
 
Because it was too depressing to read their magazine. 
 

Positive information for younger people is needed, which explains that if people are careful they...

Positive information for younger people is needed, which explains that if people are careful they...

Age at interview: 25
Sex: Male
Age at diagnosis: 23
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What type of information do you think young people with osteoporosis would need?
 
I think you know, you know well from my point of view you know it’s not about leaflets and booklets, but you know a website or something. You know or you know some kind of information resource. I mean I don’t mind the leaflets but you know I don’t want it to be aimed at anybody else you know, you know it’s got to cater for my needs. You know and tell me about you know, you know what I can expect, and what you know I have to do and be careful with, what are the options available to me you know?
 
But I mean obviously it’s difficult because everyone is different and not I mean like me, I’ve got a replacement hip, but broke that hip, so it’s just you know it’s kind of different for everyone. But I mean I would like a website or you know just someone who can help me really, guide me, you know to talk, you know you know just to tell me more about it, ‘cos I am still very, I mean I don’t know loads about it, I mean I’m much more familiar with Rheumatoid Arthritis because I’ve had that for so long, you know but Osteoporosis I’ve never really got to grips with, all I know is that it’s an increased risk of fractures, you’ve got thinning of the bones, you know so, I mean I don’t know a huge amount so someone to either tell me, sit down and talk me, or a website, information page perhaps you know. May be on…
 
Okay, but what themes do you think would be relevant for young people with osteoporosis, or younger people?
 

I think you know it’s still managing you know to cope with your life, despite having osteoporosis. You know obviously you have to be careful and you not take risks but you can still lead an active life. So I think it’s that sort of theme, that sort of way rather than you know saying this is what you’ve got, be very careful, don’t enjoy anything. You know you’ve got you know, it, it, you know you have to portray it you know in a positive light to, if you see what I mean? You know you can still drive, you can still go to work, it doesn’t have to limit you, if you see what I mean? You just have to be careful and then the medications available, you know, the one that I’m on, you know and alendronic acid, I mean I didn’t know about that until I was given it, you know calcium, you know there are different types of scans, a DXA scan, the BMA is it? BA and, B&A. So they’re a bit, so things like that you know, just a general. I mean I’ve got my, I get my stuff off Wikipedia. You know soit’s not exactly, I mean and I know everyone else hasn’t got access to the internet so, you know, so you could condense that, I mean there’s some big words on it, you could condense that down you know and…

 

 
Yeah, but it’s not to overload it either I mean, you mustn’t scare people off you know what I mean, it’s not to frighten people, but just to make people aware you know, especially if they’ve got like a replacement hip, ‘cos my you know, ‘cos my circumstances are increased because the hip can dislocate whereas if you have a normal hip they can crack but mine can actually dislocate and break, so that for me is different, from that point of view. So maybe you know concentrating a bit if you’ve had replacement surgery, and if you’ve got, you know, weak bones or osteoporosis, that could be good. And it’s really it’s really difficult to like pinpoint you know, but, you know ‘cos I don’t know what’s, you know I mean I don’t know the full picture so it’s difficult to say what I’d want, but definitely the basics you know but a definitely a positive kind of theme do you know what I mean? Just because you’ve got this doesn’t mean to say you can’t do that, do you, if you see what I mean.


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Last reviewed June 2017.
Last updated June 2017.

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