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Survery: Clinical Implementation of QOL Instruments and Prediction Tools for Localized PCa

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Posted 5/15/2013 9:09 PM (GMT 0)
I came across the results of a survey from the Journal of Urology, that was sent out to 1,422 prostate cancer specialists in the United States.  They were queried about self-reported clinical implementation of quality of life instruments, prostate cancer nomograms and life expectancy prediction tools.  Here's the link:

http://www.jurology.com/article/S0022-5347(12)05806-5/abstract?elsca1=etoc&elsca2=email&elsca3=0022-5347_201306_189_6&elsca4=elsevier

I thought the "Conclusion" was most telling:

"Although prostate cancer nomograms have been implemented into clinical practice to some degree, the use of quality of life and life expectancy tools has been more limited. Increased attention to implementing validated instruments into clinical practice may facilitate shared decision making for patients with prostate cancer."

From my perch it gets back into having to be your own health care advocate - although unfortunately that won't help the denizens out there that don't know enough to be able to do so, and instead rely entirely upon their medical practitioner.

Posted 5/15/2013 9:52 PM (GMT 0)
I keep feeling like they write all these studies and recommendations for 60+ year old men.

As a young man in his early 40s I really feel cheated by this. We are no doubt ignored and it's not like there are only three of us.
Posted 5/15/2013 10:12 PM (GMT 0)
David, I think men of all ages are being cheated by the lack of use of these tools!
Posted 5/15/2013 10:29 PM (GMT 0)
Sorry, I know we are all cheated, I just feel that my age group is not even part of the equation.
Posted 5/15/2013 10:35 PM (GMT 0)
I agree, it feels as if I have to be "on" all the time and feel guilty when I miss something or felt the Dr. would watch it and didn't. I'm not a normally assertive person, except for others,; but it is difficult to be responsible and have to be someone I'm not.
Posted 5/16/2013 1:24 AM (GMT 0)
A Yooper,

One of the questions I asked doctors I interview, and I encourage others to do the same, is how do they track quality of life after treatment. I was amazed that they all didn't use the validated standard tools for doing that -- EPIC or IEFF/SHIM. My doctors are at a university hospital where they all use EPIC and compare results. I fill it in every time I take a PSA test.

One urologist told me he had two-thirds retain full sexual function after surgery. When I asked him how he knew that, he told me he felt certain his patients would go out of their way to complain to him if their erectile function had diminished at all. Only one-third complained, so that must be all that have a problem. shakehead

- Allen
Posted 5/16/2013 1:39 AM (GMT 0)
you interview doctors? You run a magazine or something? How many doctors have you interviewed?
Posted 5/16/2013 2:33 AM (GMT 0)
I don't anymore for myself, but sometimes I go along on visits to doctors with my friends. I interviewed several doctors to find the right ones for me, and now I help my friends do the same. We always bring in a list of questions, and the instruments they use to gauge outcomes is an important one.
Posted 5/16/2013 3:20 AM (GMT 0)
I bet they love it :)

You should bring your friends to Samadi, he'll break down his outcomes scientifically for you and I can personally tell you the outcome is good.

Seriously though, I understand that asking a lot of questions is a very good idea, and I understand asking questions of different specialists is an even better idea, but do you think that perhaps trying to gain control of the experts and dismissing them gives one a sense of control that is deeply neede din a time when all sense of control seems lost? I'm asking that honestly.
Posted 5/16/2013 12:47 PM (GMT 0)
Tall Allen, your point about asking doctors what tool(s) they use to track post treatment specifics is spot-on. Whenever I post to newbies I include a blurb about that - reminding them to ask each practitioner for their own specific outcomes. Can't believe the comment of the urologist about using guesstimating as a tool! (But, unfortunately that is not an isolated case)

David, to your post about trying to gain control of the experts - I know it is a fine line but I believe with the correct approach one can be more successful in having these experts allow you to be on equal ground with them, in terms of making health care decisions. I found the very best way to do that is to educate yourself to the point of being an "expert" yourself. . .

When I was Dx'd with PCa I was absolutely obsessed with learning about it, and the treatment approaches. Obsessed to the point of spending several hours per day, every day, between surfing, reading, phone consultations, visiting medical professionals, using my insurance company's (Humana) support services, sitting in on forums, studying the results of medical studies and trials - well, you get the idea. Armed with a new level of knowledge and awareness made 'most' of my meetings with the treatment practitioners go very well, with many of them commenting how impressed they were with my level of understanding.

Sorry if I'm coming across too strongly on this, but to me, again, being your own advocate is so very key in all of this......
Posted 5/16/2013 12:57 PM (GMT 0)
Yooper, I feel that one can be a very effective advocate without putting himself/herself on the same level as the actual professionals. We need to understand details and ramifications of what we are doing or what is suggested and bounce them off different experts, but at the end of the day, they're the experts/professionals and we are the patients.

Truth is no amount of forum browsing, paper reading is going to make any of us experts or professionals to the point where we can direct something as critical and important as this.

The same goes for all of our professions. I have thousands of clients and they come to me daily with questions, complaints, requests for facts. They don't tell me how to run my business. They often have great questions and even fantastic suggestions on potential service enhancements, but none of them ever kn ow the intricate details of every aspect of our operation that I have gained through 20 years of actual experience and development. I bet the same is true of all of us.
Posted 5/16/2013 1:35 PM (GMT 0)
David, agreed and well put. I don't feel for a second that I am at the same level of medical knowledge and experience of a qualified physician - not any more than as you said they could be at my level of running a business. The point I tried to make (and missed the mark a bit wide left!) was that I do believe I can get to a level of understanding and knowledge to the point of being fully conversant and 'respected' back by the practitioner.
Posted 5/16/2013 1:41 PM (GMT 0)
absolutely, I agree with that.

Btw, this is hitting close to home with me because the Italians are making some mistakes with my mother. They have to repeat the biopsy of her lung because they only took 3 samples and according to them, "missed the mark". This with a bloody "shadow" present. So this morning they tell us via phone "we know it's there, we just missed it". As you can imagine, I now have potentially false hope that the primary source isn't lungs after all. Good thing I'm flying over so that I can be there and do exactly what you suggest we should all do in such situations, have respectful and informed conversations with the practitioners.
Posted 5/16/2013 1:49 PM (GMT 0)
Every visit to my rad-onc I fill out a 4 page form regarding my condition, very detailed.   I am now on yearly visits and he will follow me for at least 10 years.

With my uro, the nurse asks several questions at each visit regarding current situation and looking for changes.   He also has several questions he asks at each meeting.   I see my uro every three months and will for the first five years, then my condition will dictate frequency.

I don't know whether thse questionaire are based on the ones TallAllen referenced.   My rad-onc from the start showed me their tracking system and results of their practice.   Another rad-onc I interviewed regarding seeds used a very similar system and has been tracking patients long term since the early 1970's.

Seeing their scientific approach to monitoring results was one of the reasons I chose these doctors.

Posted 5/16/2013 2:36 PM (GMT 0)
JNF - textbook approach, awesome. . . and, it also sounds like you've got them sufficiently trained!  smilewinkgrin

David, sorry to hear about the news on your Mom, got to be incredibly frustrating.  Agreed that it's great that you'll be there soon, and with your tenacity and passion I'm sure things will get better quickly!  Best wishes to you on this, safe travels as well.....

Posted 5/16/2013 5:43 PM (GMT 0)
I also find it aids open, frank and full discussions with my doctors and aids them in making more accurate diagnoses. It is nice to have quantitative tracking on all these urinary, rectal, sexual and other quality-of-life dimensions. It's also nice to be able to compare yourself to group norms, to see if your experience is within normal range. It's really no different from tracking PSA, Testosterone, Glucose, or anything else via lab tests. If your doctor doesn't track your status on these dimensions, there's no reason you can't periodically use these to assess and track your own progress.

For anyone who's interested, here are links to some of the commonly used questionnaires:

EPIC:Expanded Prostate Cancer Index Composite
IPSS:International Prostate Symptom Score
IIEF (full):International Index of Erectile Function
SHIM: Sexual Health Inventory for Men (aka IIEF5)
EORTC-QLQ C30 - for cancer quality of life
Posted 5/16/2013 6:45 PM (GMT 0)
Awesome post Tall Allen! Great resources for all to be aware of and hopefully use.

In my personal case Dr. Moran's staff at the CPC uses EPIC; I've filled one out every time I've been down there, including initial consultation, pre-implants, and every PSA / follow-up.

Thanks for putting those out here!
Posted 5/16/2013 11:05 PM (GMT 0)
The nomograms ignore under 50 year old guys....there must be enough of us now for them to have done some studies. Also ignored: gay men. Those urology questionnaires on ED just assume that all of us are trying to get hard for vaginal intercourse.
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