A good idea or already available

More settings

by Penguin - 2023-02-27 07:30:43

Not quite sure I follow what you're suggesting re: ECG / PM data.

I think you're suggesting that manufacturers could provide ECG's or worded examples of common settings explaining and illustrating how they work to patients as well as hospitals.  Is that right? I agree that it would be helpful to have a table of common settings e.g. rate response, rate drop, mode switching etc which compares available settings for each (by model / manufacturer) and which includes their limitations in terms of programming and heart rates / conditions.

That kind of 'sales info' will already be available via manufacturer reps I suspect but not necessarily in patient friendly formats.  I agree it would be helpful, when say choosing a new device or discussing setting adjustments with the pacing clinic.  

Re: lowering the amount of settings available.  I think that most manufacturers increase and improve the amount of settings available year on year, rather than reduce them.  I imagine there's a wide variety of symptoms / experiences out there and that the variety and flexibility of settings is key to helping the widest range of people possible (and selling pacemakers!!) 

If you're suggesting that this adds to the complexity of settings / devices and that this makes it trickier for patients to understand their PM - I agree with you on that one!   The ever changing technology no doubt brings benefits, but it does make it very difficult to keep up with what each device can do even if the basics remain the same. 

Great idea and question

by Gemita - 2023-02-27 09:20:22

John, I think I understand what you are suggesting. 

Yes it would be a wonderful idea to predict how we are going to respond across the board to all our individual PM Settings from information taken from any internal ECGs or other data, but I cannot see how it would work in practise?   It would surely depend on our individual circumstances at the time (like what meds we were on, any arrhythmias or electrical disturbances present, other health conditions too) and all these factors can change in an instant as we well know and prevent those Settings, that have so carefully been activated and adjusted, from functioning optimally.   

Perhaps you would like to volunteer your services to design something that would work for the benefit of us all?  I would love to be able to predict the outcome of some of my settings.

case studies

by Tracey_E - 2023-02-27 10:33:04

I know that my St Judes rep had some sort of database he could access. Once when I had a couple of problems that were tricky to program (settings for one made the other worse), he wasn't able to find anything in his network and he'd exhausted everything he could think of,  they made me a case study. He sent a huge stack of my records (this was in the days of fax!) and the engineers had a powwow and sent back recommended settings. So I do believe they have some sort of records like this. 

Brilliant Idea

by SeenBetterDays - 2023-02-27 11:29:49

I really wish this type of system was available for all pacemaker recipients. My feeling is that the devices are great at keeping us alive but maybe not so great when we are trying to iron out individual issues related to programmed settings. I find it frustrating that we all have to navigate our way through a labyrinth of technical jargon from the outset and then rely on finding someone who knows what settings might work best for us. There must be a better way of doing this so that technical knowledge is shared and all people with a device receive a consistent level of care and are able to optimize their settings. It seems like in the US you have a better system than in the UK where there is no manufacturer rep involved at the follow up appointments. Seems far more sensible and might overcome some of knowledge gaps. Anyway John, I just wanted to say it seems like a great idea and wish it was already in place! 

Prediction

by AgentX86 - 2023-02-27 13:19:57

I really don't think such a thing is possible.  There are too many differences between people and many of these are difficult to quantify. Sensitivity to different events is a biggie.  Some have no idea that they have AF, while others can barely function.  No one knows why. Pain thresholds are in this class.  Activity levels and types are difficult but not iimpossible. Self reporting probably wouldn't be accurate so wouldn't be a reliable metric.

The better solution would be to train device techs on the workings of RR better (RR is about all we're really talking about here).

UK Pacemaker "techs."

by IAN MC - 2023-02-27 15:09:53

SeenBetterDays  ........ you give the impression that, here in the UK, we don't use manufacturer's reps in follow-up appointments. We do ...when necessary !

I have had a Medtronics rep present on a couple of  occasions, one most recently at a Rate Response adjustment session,  done while I ran on a treadmill

We don't use them routinely because our " Techs"  (  Cardiac Physiologists ) are trained to program all makes of pacemaker, as well as many other aspects of cardiac care .They are all university graduates and there is no equivalent cardiac specialist technician  grade in the U.S. as far as I know.

One potential problem with relying on manufacturer's reps is that they are a biased source of information and are highly unlikely to ever recommend a rival product even if it's better for the patient,

Ian

Good Idea

by Gotrhythm - 2023-02-27 15:17:05

You're talking about something I've wished for many times. I've ceratinly experienced the night and day quality difference between adequate settings and settings that were really right for me. 

With all the easily accessible ECG devices these days, I don't see why it couldn't be done. At least to have something better than the one-size-fits-all until the patient complains approach that's common today.