Survey on perceptions of e-health and prostate cancer — please participate

Researchers at George Mason University (GMU) — in Fairfax, Virginia, USA — are conducting a study to learn more about how information and resources available on the Internet affect men’s experiences of living with prostate cancer. This study has been approved by the Institutional Review Board of GMU. Your responses may help others understand how Internet sites related to prostate cancer can be improved.

This study is open exclusively to male prostate cancer patients.

The study involves completing an online survey, which should take you about 10 minutes or less. The survey will be accessible through Thursday, April 25, 2013. Your answers will be confidential. Your participation is completely voluntary and the survey may be stopped at any time without any penalty to you.

Note: For any question within the survey that does not offer/allow you to select a satisfactory answer or answers, please feel free to type your answer(s) in the box labeled “Other”.

If you have additional questions of any type, please feel able to contact the study coordinator by e-mail.

14 Responses

  1. And to bait everyone who reads this blog, it frosts me that HIFU is not included in this survey. But no surprise, is it? “”Proton Therapy?” Wow, that’s a fiscally great idea, right? Who is footing the bill for that one?

  2. I don’t see this survey as providing anything useful. The questions did not address the reasons I use the Internet.

  3. Dear Joe:

    It may not be useful for you. You were diagnosed years ago and have a sophisticated appreciation of your situation and options. A newly diagnosed man tomorrow is not exactly in your situation.


  4. Dear Elucidated1:

    That’s why there’s a box where you can add other answers! And since HIFU is not approved yet here in the USA, why would the researchers include this option?


  5. Site, I find your comment compelling for its abject arrogance that “only” FDA approved treatments should be included in any discussion on prostate cancer. If I learned one thing in my prostate cancer journey to a successful HIFU is that the US medical world seems to be obsessed with some type of American exceptionalism when it comes to procedures. That other countries could not possibly offer reasonable safe treatments. They must be all be inferior to the US, right?

    But for newly diagnosed prostate cancer patients, what is wrong with understanding all of the choices available? It doesn’t take too much research to find successful, experienced HIFU urologists all over the world including Japan, Belgiium, Mexico and Europe.

    I have now exchanged multiple emails with the PhD candidate from George Mason who is doing the survey. She only learned about HIFU last week or would have included it.

    Lastly, I find it unconscionable that so many US physicians have strong opinions on HIFU yet have never witnessed or performed one. I also find it compelling that YANANow, Gerald Chodak and at times this website seem to go out of there way to discount HIFU as a reasonable, less invasive choice for prostate cancer patients. I know dozens of Americans who have chosen HIFU, came out with no side effects and never looked back.

    Prostate cancer patients are not just “patients,” but “consumers” who deserve to know all of the choices and not just the ones shared by physicians whose personal biases are often driven by profits and bottom lines.

  6. Dear Elucidated1:

    Like many patients who decide to have a new form of therapy (and not just for prostate cancer) with apparent success, you have strong opinions about HIFU. That’s fine; we get it … but there’s no need to be impolite.

    All we have ever said about HIFU on this site is: (a) here are published data — some good and some less good; (b) it is not approved for the treatment of prostate cancer in the USA (which is not my decision — whether you like it or not, but I do understand why the FDA decided some time ago that new technologies like this would have to prove their efficacy and safety); (c) the published data (which are few) clearly demonstrate a significant recurrence rate post-HIFU treatment and a significant number of patients having side effects (notably erectile dysfunction).

    If you joined the social network associated with this site, you would realize that I regularly suggest (to selected patients) that they consider HIFU as an option if they are unwilling to consider active surveillance … with a clear warning that they will have to pay for its themselves (along with their travel costs to wherever they get treated), that there are few long-term data, and that ED is a real and well documented side effect for a significant subset of patients. (Many people don’t actually have the option of traveling outside US and paying out of their pockets. It would be at least considerate of you to remember that. In the immortal words of William of Wykeham, “Manners maketh Man.”)

    Others will have — and are 100% entitled to — their opinions too … even when you think they are nuts and disagree with them.

    Incidentally, I deleted from your post above two pieces of personal information that you did not (in my opinion) have the right to make public. If the lady in question wishes to make that information public, that is her right, not yours.

  7. I do appreciate the response. Re: being impolite … there might be more than a few post-radiation/RALP patients who have reason to have strong opinions or be impolite about their results. I spoke with a bunch of them and I think it rubbed off.

    I would like to see the current results of the “published HIFU data” you referred to. Then it would be easy to compare it with the current research data results for RALP and radiation too, right? =-) It’s those pesky side effects from RALP/radiation that no one seems to like either.

    Prostate cancer, albeit a business, is very personal to the patient. While one prostate cancer patient chooses active surveillance, there are others who are unable to make that choice due to their situation or family emotion.

    Do the people on your social thread read these articles or do they just stay there? Are their urologists who participate?

  8. Dear Elucidated1:

    (1) Many of the people on the social network read some of these articles just as many people who read these articles sometimes participate on the social network (which has over 4,500 members), and yes some physicians do participate sometimes too. There is a special group on HIFU. Frankly, I don’t have time to sit around cross-correlating that sort of information.

    (2) To find the many articles on HIFU on this site, just enter HIFU into the search engine. (And don’t be silly, it’s no easier to compare these data to the surgery and radiation data than it is to compare them to each other! For a start there is selection bias!)

    (3) All significant healthcare “is very personal to the patient.” Try having breast cancer … or diabetes … or chronic emphysema … let alone HIV or ALS or Huntingdon’s disease or pancreatic cancer! You think those patients don’t have to deal with similar issues (and worse)? Trust me. They do. The idea that prostate cancer is in some way different or special is delusional. All serious illnesses require patients to try to manage their health with the best doctors they can find. It’s hard … and often it sucks! And while your doctors are trying to help you, in the USA they are also trying to make a living in a completely shambolic fiscal/reimbursement system that absolutely no one likes at all but no one wants to change because they might be the loser! (At least if you are doctor in a nationalized health care system you know how much you are going to get paid for your services each year!)

  9. I still do not know why you keep bringing up issues for patients with other medical problems. I understand the comparison. But this site is about prostate cancer. And that is the topic. I understand the financial challenges physicians face. Too bad “green’ sometimes colors a physician’s ability to recite the hypocratic oath as well as clarity on a physician’s competence.

  10. Dear Elucidated1:

    Prostate cancer doesn’t exist in a vacuum. Most men diagnosed with this condition are 65+ years of age and have other clinical problems in addition to their cancer. If you aren’t interested in some of the things we see fit to comment on, then just don’t comment yourself … please! Alternatively, you could just start your own blog and talk only about what interests you! I raised the comparison solely because of your prior comment!

  11. Site, Huh? I do comment on “the things we see fit to comment on.” I just find it interesting that you to continue to bring up other treatments and issues to justify current medical issues when I make points that are clearly, pointed. Go back and look at our past thread discussions for verification.

    “Start my own blog?” Really? I’ve seen what people say on your blog here. I’ve told you that I think it is the best blog in the US and I have actively shared this blog with other prostate cancer groups and patients. I shared this site on a national conference call last night.

    If it is your desire to “control” all of the discussions to your own satisfaction, just say so. The risk of running a blog is dealing with comments contrary to ones own biases and comfort zone. It is like a classroom, dealing with all students, parents, topics and not just the gifted students who do everything right and say the right things.

    The articles you provide are great. . .but the comments on said articles are slim and none. Why is that? Do PC not know what to say? Do doctors use their own forums to discuss the articles?

    Isn’t it interesting that the patients that post on blogs are usually the ones that have continuing issues and those that come out of RALP/radiation/HIFU healthy just move on with their lives and dont’ post?

  12. Dear Elucidated1:

    Again … It’s a matter of opinion. I don’t happen to think that a lot of your “points” are nearly as “pointed” as you happen to think. I also find it of interest that most of the other regular commentators don’t seem to respond to the comments you make very often.

    And trust me … If I wanted to “control” the discussions “to my own satisfaction” that would be easy. … I just wouldn’t post the comments I disagreed with!

    I suppose that the reason that “the comments on said articles are slim and none” is because many people are just less interested than you are in expressing their opinion so frequently.

  13. This really has nothing to do with people responding to what I write. My comments were directed to the fact that people don’t post much on the articles you write. This is your site. Who cares if they respond to me. I’m amazed that the articles presented here are not more widely discussed. If “regular posters” are your source of credibilty, so be it. My question stands: why aren’t there more posters responding to the articles here?

  14. Dear Elucidated1:

    I dunno. Maybe most readers don’t find what I write as stimulating as you say you do!

    The only fact I can offer you is that on a regular weekday between about 1,600 and 1,800 people visit the blog each day and read (on average) about 2 posts each.

    Unlike most blogs, one of our goals is actually not to stimulate heated debate. We simply try to provide information that people find helpful in their discussions with their doctors (and each other). I suppose that if we were to be 100% successful at that, the only comments we would get would be the occasional ones that said, “Thanks for the helpful information” or similar.

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