Pacemaker Survey Results

Pacemaker Owners Manual

by Herbie - 2018-03-21 12:16:01

Interesting survey results, thanks. Could you let us know where to find the 'Pacemaker Owner's Manual' when it is published? Or is it already available somewhere?

Pacemaker Owner's Manual

by pacemaker writer - 2018-03-21 12:34:27

Hi,

Sure! It's on Amazon but please do not buy the copy that is there now. It was written maybe 10 or 12 years ago and so much has changed!! I will let you know when it comes out. Thanks!

One thing that changed a lot, in my opinion, is that pacemaker patients seem more empowered. Ten or twelve years back, many people did not really ask a lot of questions or want to know too many details about pacemakers. Today, people are interested and knowledgeable about the devices work and they want to ask their doctors questions. That's great, I think.

Awesome Survey!

by Lana - 2018-03-22 01:01:02

Great information! I would also like to purchase a copy. Let us know when it will be available. 

Awesome ??????

by IAN MC - 2018-03-22 11:49:42

After Lana's comment I re-read the survey results to  see if i was missing something because at best the results were mildly interesting and contained no surprises.

Then it dawned on me .... here in Britain we only use the word " awesome" to describe something truly amazing or REALLY impressive , in other words something totally awe-inspiring like a huge tornado.

I Googled the American usage of the word out of curiosity and found a lovely quote that " you can only be mistaken as an American if you punctuate every sentence with the words "awesome" , " Oh my God " and " shit"

I have learned so much since getting a pacemaker !!

I'm glad the survey results were useful to you but I cannot for the life of me see how you can make fundamental changes to your manual based on these results   ?

Ian

Pacemaker Owner's Manual

by pacemaker writer - 2018-03-22 13:33:36

I did not post all of the comments to the survey, but I did find some things most interesting and useful for a revision.

First of all, with or without a survey, the book has to be revised in that it was written a while back. We now have leadless pacemakers and subcutaneous ICDs that were not in there. I did not put loop recorders into the original manual although they existed but they were not that common. Same thing with CRT--I did not mention it much in the original and it is much more common today. Another thing that got very short shrift in the original was remote monitoring--which is very common today and exists in different permutations. There is also the news item about pacer/ICD hacking that deserves a mention. So the book needed a revision just in the sense that technology marches on. Also, companies change. St. Jude Medical is gone now--it's Abbott.

But I did get lots of good information from the survey, even if it was not earth-shattering news and totally unexpected. I was interested what people knew about their pacemakers. For instance, only about 2% of respondents said they did not know the device manufacturer. Ten years ago, that number would have been much higher. I have worked at pacer companies or with pacemakers since 1989 and I can tell you that years ago, most patients--at least in the US--were oblivious about who manufactured the device. Today, everybody knows.

The other thing that has changed--and the survey proves it--is that patients today know more and talk more about their devices, its settings, and so on. People in the survey knew how many leads they had, what type of device they had, and so on. Back in the day--and even 10 years ago--many patients did not know much or care to know much about things like lead revisions, rate response, percentage paced, and so on. In fact, many people did not know for sure if they had a pacemaker or an ICD.  I know because we used to survey and write patient manuals for these companies and most patients were either too overwhelmed to care or just trusted the docs. I think the internet has totally changed medicine in that patients have access to lots of information and are more actively concerned with their therapies and treatments. One write-in comment--and I did not post it--asked what the difference between unipolar and bipolar pacing was. That was what this person most wanted to know. Back in the day, I don't think anyone with a pacemaker knew much about polarity at all, much less wondered about why they had one type of device versus another. These are huge shifts in terms of how I would structure the book. I am going to go into detail on many of the device settings in this next go-round.

The third thing I gleaned from the survey was that most people were generally happy with their pacemaker. I saw very little in the way of negative comments although certainly many respondents had had issues--infections, complications, surgical pain, recalls, lead dislodgement, etc. I saw pretty much the gamut of what can go wrong, but I saw overall that people adjusted to their pacemakers. That's valuable information too. Many people in the survey said they would tell people getting a pacemaker not to worry about it. That's important information, too. I think back in the 1990s, when people got the news they needed a pacemaker, they were much more upset and often had a more difficult time adjusting to the pacemaker than today.

Just Wondering

by Grateful Heart - 2018-03-22 22:10:52

Are the members on this site the only ones who took your survey? 

As you know, the new members here ask many questions and some want to learn a great deal about their devices.  Some just want reassurance that they will be ok and learn a lot in the process.  

So the results collected, while helpful to you regarding the book revision, leaves out many millions of pacemaker/ ICD recipients who may or may not be informed.  While I realize a survey for the entire pacemaker/ ICD community worldwide is not feasible, obviously the results are skewed, especially relating to this site. 

Just an observation.  Good luck with your book.

Grateful Heart    

Convenience sampling and the survey

by pacemaker writer - 2018-03-23 11:05:56

With surveys, you're always working with a subset of people. This survey I did is what statisticians call a "convenience sample." It was not intended as a scientific survey--I did not recruit thousands of people and then randomize them to get a scientifically sound statically valid sample. It was not necessary for what I was doing, not to mention that is a pretty arduous and expensive process! Furthermore, this survey will never be published in a scientific journal and no one should take the results as representative of the global population of pacemaker/ICD patients.

I did the survey because I thought it would be helpful to me and it was. I shared the results because I was asked to. 

A convenience sample was appropriate for me in this survey because the kind of people who would be interested in my book are the kind of people who would be members of an online site on pacemakers. I know pacemaker people who have very little interest in their devices or their health in general. I've never understood that, but they exist. I am really not interested in surveying them because they would never read a book on pacemakers.

BTW, only a very few people from this page participated in the survey. Over 90% of my respondents came from a Facebook page on pacemakers.

PMW

by Grateful Heart - 2018-03-23 17:50:19

Thanks for explaining.  We are an inquisitive bunch.  :)

Like I said, just wondering.

Grateful Heart