August 18, 2007

Perception - is it Really Reality?

Each of us has our own idea of what particular outcome we want no matter what the scenario. We don’t usually go into a situation blindly…we know what we would LIKE to happen. Whether that happens, is not the point.

So, I would venture to say that in addition to the expression "perception is reality" one has to add the word "expectation". Since you go into something with a certain expectation, that expectation is actually going to frame your perception.

What the heck am I talking about…well, consider this.

When you walk into the doctor’s office, do you expect people to look at you intensely? Do you expect them to be friendly when they ask "what can I do for you?" What do you expect? Are you putting your nervousness and fear in the way of what you expect? Do you "think" they will be mean and unfriendly? Are you judging from what others have told you about their "horrible" experiences with "The Doctor"? How have you come to form these expectations?

If you walk into the office expecting dull, unhappy, mean and unfriendly people, that’s probably what you’re going to get. And then, the vicious cycle has begun. You will assume that your perception of that encounter is a mirror of what’s to come. And that’s not necessarily the case. Maybe the person at the front desk is ill or has some major family problems. You don’t know what’s going on in his/her life that’s affecting the way he’s/she’s greeting you.

Don’t expect anything but the best. And if your perception of one thing isn’t the best, move right on to the next, knowing that that will be better.

One quick example to end this post for today (and I will post more later about this issue) -
If you go into the office thinking that since your appointment is at 10:00 you should be seen at 10:00, you’ll most likely be disappointed, right? Isn’t that what everyone talks about..hurry up and wait? So, why go in with the expectation that you’ll be seen at 10:00? Why set yourself up to be disappointed? Go in knowing that the doctor really does try to be on time but that maybe one or more other patients needed a bit extra or a return phone call and you’d like for the doctor to do the same for you - not say "oh, I’m sorry, I can’t do anything more than this because I have to be exactly on time." Go in prepared to wait and then you may be pleasantly surprised and if you’re not pleasantly surprised at least you’re not disappointed.

Take a look at your expectations….Until later….

Terrie

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August 6, 2007

“I’m So Embarrassed”

You know what I mean - those questions that you "just can’t talk about".

But you have to talk about them in order to get some resolution and help and more importantly reassurance. In some cases, the problems you are hiding might be very significant.

I’ve had two very memorable patients in my career that practiced denial to the point where it had become a way of life - but, unfortunately, in a bad way. Both of these people had growths on their body - where they could see and feel them constantly - and they let them become very big and open. Both were cancerous. I won’t go into the graphic details but for them to have been firmly planted in my memory forever, believe me they were bad. And I don’t want any of you to end up in that boat.

I think the one thing I can tell you from my side of the gurney or desk is that there isn’t much you can tell me or talk about that I haven’t heard before. I’m not sitting there waiting for some "juicy story" to come across so all of us in the office (or in my case, the Emergency Department) can have a good laugh. That is NOT the case at all. What’s the expression - "been there, done that, got the T-shirt" - and in my case you could probably tag on to the end of that "waiting for the DVD".

That knowledge may or may not help you but it ought to help. Knowing that the doctor isn’t going to laugh at you or demean you is very important. You should also know that you’re most likely not the only person in the world with this problem. The internet has helped in that manner but still, most people feel alone in their problem and do not really know that there are others out there with the same misery. That’s one reason (and probably the only one) I can accept the TV ads for Viagra and Cialis and Levitra and whatever. They at least are showing people that it’s ok to talk about it, that others have it and that there is help. It’s a very common problem and now more people are realizing they are NOT freaks because of it. The same applies to most anything you may be having a problem wtih.

It’s very helpful to practice saying what it is that’s bothering you. I recommend that you first write down your symptoms (I recommend this for everything, not just the embarrassing ones) and then practice saying it to someone - a spouse or a close friend. If you have neither, then use the mirror - just talk it out. That is the dry run, so to speak. Once the words are out of your head and spewing forth from your tongue, you will feel a sense of relief that you’ve never known. It’s really amazing how that happens. Even if you’re not saying the words to anyone who can do anything about it. You’ll feel a freedom and have a sense that you can tell it to a "stranger".

If the embarrassing (for me that’s almost as hard as Mississippi - is that right? -smile) problem is the real reason you’re going to the doctor, make it the first thing you talk about. Don’t couch it in a bunch of other things and "hope" the doctor will stumble upon it. This is not an archeological dig even though it appears to be sometimes. Spit it out. Tell your doctor why you’re REALLY there.

I try to preface a discussion of that sort with "I’m really embarrassed to tell you this, doctor. And, I’m not sure I can get it all out. Do you mind if I take some time? Maybe once I get started you can help me?" If you let the doctor know up front that this is an issue for you, the process will be alot easier.

Remember that a few paragraphs above I recommended you write things out. Do it! AND, take that piece of paper with you. Give it to whomever will take it. Make copies. If you know you just can’t get it out of your mouth, hand it to the doctor and say "this is really embarrassing. I wasn’t sure I could tell you about it so I wrote it down" and hand him the paper. You’ll be amazed at how that will open the door.

Not only will you be amazed, but you’ll probably get some help and feel immensely relieved as well. Always know that things are easier to handle when you have an ally - and telling your doctor about your embarrassing problem will then provide you with a very big ally.

Go ahead, practice with someone…..it works…practice even if you don’t currently have a problem.

Terrie

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October 25, 2006

USA Today Story - Audioblog - “When a heart attack goes undiagnosed”

This is a very disheartening situation and unfortunately happens more than it probably should. It was on the front page of  USA Today and I felt I had to talk about it.  Interestingly it was one of three most emailed articles from the Web page today.

Misdiagnoses do occur. But if the doctor works very hard at getting an accurate history (and the patient works very hard to help the doctor), the index of suspicion should be raised high enough to help avoid some of these events.

Do NOT minimize your symptoms just because you may feel better lying in the bed or because you’re scared or humiliated lying there in the bed with everyone staring down at you.

Listen here and comment if you wish. Blessings to this family in their time of sorrow.

 

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June 30, 2007

The Index Card Solution

Another one of my articles - on SeniorNet.org

The Index Card Solution

by Dr. Terrie Wurzbacher
June 2007

Sometimes the simplest things can impact your life in ways you never could imagine. Using index cards to help communication with your doctor is one of those simple things. You can use the index cards in various ways.

You should always have an index card where you record your list of medications and the dosages and how many times a day it’s taken. Write this in pencil so you can adjust it when the dosages are changed. All medical personnel will be so appreciative of this one thing because the last thing they want to hear when they ask “what medicines do you take” is “well, there’s a little blue pill but I don’t know what it’s for. And the orange tablet and a green capsule.” Not knowing your medications or having this card can actually be detrimental to your health because often your symptoms might be caused by or exacerbated by your medicines.

Another use for an index card is to record your medical problems (e.g. high blood pressure, GERD, etc). Use the back (or another one) for your procedure history. Put the procedure, the reason you had it and the results (e.g. colonoscopy 2004 – routine – polyps or mammogram 2006 – routine – normal, etc).

If you’re having a procedure done and have concerns about some of your medical problems, but are worried that the surgeon or anesthesiologist won’t have time to listen to your issues, write them down on an index card. Give the card to the specialist you need to discuss things with. For example, if you’re having surgery and are going to have general anesthesia and are worried about your bad neck being bent back to put the tube in your throat, write it on the index card. If you’re scared how the anesthesia drugs will affect you, write that down too. Be concise – for example: “Neck arthritis – positioning head” on one line and then on the next write “Interaction of anesthesia drugs with mine” or something similar. Be sure to use separate lines.

Use an index card to remind yourself of questions for your doctor. Use keywords or phrases. Make sure you have it out when you start to ask questions. Tell the doctor up front that you have questions.

Another use is to briefly write all your symptoms. That way you won’t forget something while the doctor is talking to you. You can even give him the list. You can take notes on an index card too. This might help you remember things the doctor tells you.

There’s a myriad of uses for an index card (and you can use 4 x 6 cards if you have a lot to write or have trouble seeing). The point is that it’s convenient and a great memory cue to help you at a time where it’s easy to become flustered. The more information you have at your hand, the more powerful and knowledgeable you become with your doctor.

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August 27, 2007

Three Signs of a Stroke

This is important information on strokes from Harvard Health Beat

3 Warning Signs of Stroke

You know the signs of a stroke. Or do you? You’d probably recognize the classic symptoms, such as sudden weakness on one side of the body or blurred vision, but often the signs are much less obvious. A crushing headache may come on without warning. Your face may feel numb. You may have inexplicable trouble speaking or following what people say.

How to tell when someone’s having a stroke

  1. Crooked smile. Have the person smile or show his or her teeth. If one side doesn’t move as well as the other or seems to droop, that could be sign of a stroke.
  2. Arm drift. Have the person close his or her eyes and hold his or her arms straight out in front for about 10 seconds. If one arm does not move, or one arm winds up drifting down more than the other, they may be having a stroke.
  3. Slurred speech. Have the person say, “You can’t teach an old dog new tricks,” or some other simple, familiar saying. If the person slurs the words, gets some words wrong, or is unable to speak, that could be sign of a stroke.

Knowing all the warning signs of a stroke may one day save your life and well-being. That’s because the faster you recognize the symptoms, the sooner you can get medical help. And prompt treatment is the key to shielding your brain from a stroke’s damage and sparing you serious disabilities such as paralysis, speech impairment, and dementia.

Every 45 seconds, someone in the United States has a stroke. Stroke is the third leading cause of death in the United States and other industrial countries, trailing only heart disease and cancer. In the United States, about 700,000 people have a stroke each year. If you have a stroke, the risk of dying from it increases with age: 88% of deaths from stroke are in people 65 and older. About two-thirds of people who have a stroke have some resulting disability and require rehabilitation.

The odds of having a stroke more than double for each decade after age 55. Two-thirds of strokes involve people over 65. Men and women are about equally likely to have a stroke, but women have a greater risk of dying from one. Race is another risk factor. African-Americans, for example, are almost twice as likely to suffer a stroke as are whites.

Although you can’t change your age or race, you can take steps to reduce other risk factors for stroke, especially ischemic stroke. The most common risk factors for both ischemic stroke and TIAs (transient ischemic attacks, or "mini strokes") are high blood pressure (hypertension), diabetes, unhealthy cholesterol levels, and obesity. All of these factors affect the health of your blood vessels — increasing the risk not only of stroke, but also of heart disease. That’s why medications and other steps you take to reduce the risk of an ischemic stroke will also benefit your heart.

Some types of hemorrhagic strokes are more likely to occur in people with chronic high blood pressure. But other types of hemorrhagic strokes seemingly strike out of the blue. Although abnormal blood vessel conditions such as an aneurysm (a bubble in the blood vessel wall that could rupture) or an arteriovenous malformation (an abnormal tangle of blood vessels) increase the risk, these conditions may only be discovered inadvertently while you are undergoing testing for something else or may not be discovered until a stroke occurs.

Fortunately, medicine has made considerable strides in understanding how to treat and prevent strokes. Medical imaging devices now enable medical teams to begin to diagnose a stroke accurately within minutes. Large studies have clarified which medications and other treatments are best for which patients. For those who need rehabilitation, experimental techniques are showing promise in helping patients make better progress than was possible even just a few years ago.

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June 29, 2007

Getting What You Need From The Health Care System

 This is about heart disease from About.com but the info is still pertinent

Getting What You Need From the Health Care System

There’s nothing more frustrating, or more dangerous, than having to solve your own medical problems. No matter how many hours you spend searching the Internet, listening to the accumulated wisdom of your Great Aunt Hilda, or engaging in games of Twenty Questions with taciturn medical personnel, you can never be sure you’ve got the right answer. 

It’s not supposed to be like that. When you’re sick and need help, you’re supposed to be able to rely on a doctor - a doctor who is knowledgeable, who really cares what happens to you, and who will leave no stone unturned in seeing that you get exactly what you need.  Unfortunately, having such a "model" doctor is becoming rare. Patients are on their own much more often, and to a much greater extent, than they used to be - and it’s getting worse all the time.  

If you’ve read Part 1 of this series, you’re acquainted with our contention that patients are feeling abandoned by the health care system because they really have been abandoned; and that (because widespread covert rationing is systematically destroying the doctor-patient relationship,) the abandonment of patients is happening by design rather than by chance. But even if you don’t buy DrRich’s explanation of the problem, the problem still remains. When you’re sick and find yourself engaged in a hostile health care system, you need somebody in your corner who knows what she’s doing, and who cares about you.  And that somebody is supposed to be your doctor.

Choosing the right doctor for yourself, and nurturing a good relationship with him, is probably the most critical step you can take in becoming an effective patient. With the right doctor at your side, the path to good health care becomes clear and wide. Without that doctor, you’re lost and alone in the enchanted forest.  Accordingly, this article discusses two aspects of dealing with your doctor: Choosing the Right Doctor, and The Care and Feeding of your Doctor-Patient Relationship.

Rule # 1. We ought to begin with the first rule of choosing a doctor, to wit: You hired him; you can fire him.

Choosing a doctor is different than, say, choosing a car. When you buy a new car, you can shop around to your heart’s content, but once you plunk down your money and bring that baby home, you’re pretty much stuck with it. If it’s not everything you hoped it would be, you can’t just get rid of it - why, it lost 50% of its original value the minute you drove it off the lot. Besides, it’s not life and death, it’s just a car. So if your new car turns out to be a disappointment, you’ll usually shrug your shoulders and resolve to live with it for a few years, at least until you can justify buying another one. 

It’s different with doctors. For one thing, it’s harder to shop around before you make your move. For another, starting with a new doctor doesn’t require an up-front investment of tens of thousands of dollars. Early on, all you’ve invested is some time and inconvenience. And finally, choosing the right doctor potentially is a matter of life and death.

Many patients have the same attitude when they’re dissatisfied with their doctors that they would have if they were dissatisfied with a car - "Oh, well, guess I’ll just have to live with it." This is the wrong attitude, since, indeed, in this case you may not live with it. Doctors are serious business.  Choosing a doctor is an important decision, but it’s not an irreversible one. It’s not uncommon for discerning patients to run through two or three doctors before finding the right match. And there’s nothing wrong with doing it that way. So if you’ve tried a new doctor and you’re not satisfied with him, get another one. Remember: You hired him; you can fire him.

The most important factor in choosing a doctor: Communication.  If you can’t communicate well with your doctor, you’re in trouble. This is the person, after all, who will need to understand your wishes and values regarding your health care. She is the one who will need to explain to you, so that you can understand it, the nature of your medical problems - the causes, the testing that may be needed, the potential treatments, the pros and cons of the various therapeutic options, and why she’s recommending one option over the others. She’s also the one who has to convince your insurance carrier that the course of action you and she have decided upon is the right one, that it’s medically necessary, and that they - the insurance carrier - ought to pay for it. Communication has always been important in medicine. Now it’s vital.

Is your doctor really listening to what you are saying? Does he show he understands your concerns by responding meaningfully to them? When he explains medical issues to you, does he make them understandable? Does he have more than one way of explaining a difficult concept? Is he patient with you, waiting for you to grasp what he’s saying, or does he try to embarrass you into saying you understand, with shakes of his head or rolling of his eyes? Do you like him, and more importantly, does he seem to like you? (This may become very important when it’s time for him to go to bat for you.) 

The inability to communicate effectively with your doctor is sufficient reason to move on to someone else. Without communication, you’ve got nothing.

The second most important factor: Does your doctor know what she’s doing?

Sometimes its hard to know for sure how knowledgeable your doctor is. But at a minimum you should check to see if your doctor is board-certified in her specialty.  At least two sources can help. The Directory of Physicians in the United States and the Official American Board of Medical Specialties Directory of Board Certified Medical Specialists list doctors who are board-certified. These books are available in most public libraries, and your doctor should appear in them.

Does your doctor seem smart to you? When you ask a question about one of you health problems, are the answers quick, logical, and cogent? Do the answers jibe with what you know to be true? Are her answers given confidently, or is she dissembling? Keep in mind that it’s often fine for a doctor to answer, "I don’t know," as long as she promises to find out the answer, and then follows through on that promise.

For specialists you will be seeing only once or twice, or who you are going to for some complex or esoteric medical procedure, their experience, knowledge and ability are often much more important than how well they communicate. If I’m having a heart valve surgery, I care much less about how warm and fuzzy the surgeon makes me feel during the pre-op interview, and much more about how many similar procedures she’s performed, and what have been her surgical results.

The third most important factor:  Is your doctor respected by his peers?

Doctors watch each other perform in the trenches, and in general, are pretty good at sizing each other up. If you can get a recommendation on a doctor from another doctor you know you can trust, that’s likely to be a good starting point.  If you know some doctors, ask them what they think. Would they send their own patients to your doctor? Or, better yet, do they send their own family members to him? Do they use him as their own doctor?  And, if your doctor is invited to participate in the training of medical students or medical residents at the local university, that’s a reasonably good sign that he’s held in high regard by his peers.

Other factors to consider. 

  • Where is your prospective doctor located? Is her office convenient to you?
  • Which hospitals does she have admitting privileges to? Are these hospitals convenient to you, and do the specialists there (since the specialists in those hospitals are the ones she will be referring you to) have a good reputation?
  • What are her practice arrangements? Who covers for her when she is away?
  • Is her age, gender or race important to you?
  • What is her office staff like? Are they reasonably competent, friendly, and helpful, or is their main job to keep you out?
  • What are her office hours and office policies?
  • What insurance plans does she participate in? This may be especially important if you are likely to be changing jobs (and thus changing insurance carriers.)

Where to look.

Start with your family and friends - people whose opinions you trust. Find out who their doctors are, and whether they are happy with them. Find out why they like them.  Also, talk to medical specialists, and especially to nurses and (if you know any), physicians’ assistants.  See which doctors they respect and admire, and why.

Another place you might consider looking is www.bestdoctors.com.  This is a listing of American physicians chosen through a survey of other American physicians.  For a doctor to make the list, a large number of physicians have to assert that they would want that doctor to take care of them or their family members if they were sick. Best Doctors is a business, however, and currently requires a $35 subscription fee.  A problem with Best Doctors is that it is sometimes weighted toward academic physicians, and there are potential drawbacks to academics - doctors often sing the praises of academics not because they are especially good doctors, but because they have published a lot, or are in positions of power. Some of the most famous university doctors are not especially good clinicians. The bottom line is that while you may find Best Doctors useful, it should by no means become your chief searching tool.  The large majority of excellent doctors in the U.S. are not listed there at all. If you strictly limit your search in this way you may be cheating yourself.

Once you have made your list of doctors, check for them in the Directory of Physicians in the United States or the Official American Board of Medical Specialties Directory of Board Certified Medical Specialists in your public library to make sure they are board certified.  Finally, call the office of one or two of the doctors still remaining on your list. See what you have to do to get an appointment.  See whether the office personnel seem friendly and efficient, or whether they’re obstreperous and obstructive.  Remember that you may need to deal with these people fairly often, and that before you ever get in to see the doctor, you’ve got to get past them. And remember that the doctor’s front office is a reflection of his own personality.  If his receptionists and nurses are difficult to deal with, you’ve got to assume that the doctor likes it that way. 

 The remaining step is to pick one of the "finalists" on your list, and make yourself an appointment.  If after meeting with the doctor you decide this isn’t going to work out, remember Rule # 1.

If you’ve read Part 1 of this series, you know that the traditional doctor-patient relationship is in deep trouble.  The problem, of course, is that the health care system simply can’t afford the traditional doctor-patient relationship anymore. There’s no way that HMOs, hospitals, insurance carriers, or federal regulators can allow doctors to continue directing the spending of health care dollars as if the only important consideration is the welfare their patients. In thousands of ways doctors are being coerced into giving the needs of each of these other parties a higher priority than the needs of their patients. So in becoming an effective patient, you’ve got to take the weakened state of the doctor-patient relationship into account.

The effective patient’s strategy 

Simply assuming that your doctor is always going to be acting in your best interests - no matter how good a doctor he is, or how ethical - is a big mistake.  The effective patient understands this, but she understands something else, too. She understands that her doctor (if she’s chosen her doctor wisely) deeply wants to honor the traditional doctor-patient relationship, since honoring that relationship is his first duty as a professional. She understands that, despite all the coercive pressure to the contrary, her doctor will occasionally go up against an HMO for the benefit of a patient. He needs to do this as a matter of professional pride - just to be able to live with himself. (The HMOs understand this, too. Letting the doctors win one now and then - only, of course, after putting up a stiff resistance - costs them some money, but in the long run keeps the doctors mollified. It keeps the doctors working, and it keeps them quiet. It’s just one of the costs of doing business.) The effective patient also understands that, as much as he may want to, her doctor cannot go to the wall for every patient, or for every issue that comes up for a given patient. The process would be too grindingly difficult, and fatal to his career. She knows that her doctor must choose his battles carefully.

The effective patient understands all this, and nurtures her relationship with her doctor accordingly. She tailors the relationship in such a way that, when the chips are down, she is likely to be one of those her doctor will go to the wall for.  To be such an effective patient, consider following these three general strategies:

Strategy 1 - Be empathetic.  Show that you understand the constraints under which your doctor is laboring, and adjust your expectations accordingly. Don’t be too demanding, especially regarding the small stuff. Show that you respect your doctor’s skills, and that having his skills working for you is worth a few minor inconveniences. After all, you make clear, you know how hard it is to be a good doctor these days, and you’re thankful he’s there for you despite everything. 

Strategy 2 - Align your interests with those of your doctor. Remember: you and your doctor are in this together. He feels your pain, and you feel his. You both want the same things. You both want the patient (you) to get good health care; and you both want the doctor’s practice - and professional integrity - to thrive. So while you fully expect to get the care you need from your doctor, you will help him to deliver that care as efficiently and as cheaply as posible.

You will not bother him needlessly, or thoughtlessly. You will make the most efficient use of your time with him. You will learn how his office operates, and cooperate with his office staff in minimizing interruptions and special requests. (For instance, inquire as to the best time to call the office with questions, or to speak with the doctor.) The main idea is: you are interested in making the doctor’s job as easy for him as possible, while still having your own vital needs served. 

Strategy 3 - Become engaged in your own good health. Nothing makes doctors crazier than patients who completely neglect their own health, then expect their doctors to pull out all the stops for them when they get into medical difficulties. The fact is, your doctor simply cannot afford to vigorously advocate for every problem for every patient. This being the case, which patient is your doctor more likely to fight for when they get sick - the obese smoker who has made no visible effort to take care of himself, or the diabetic who has carefully tried to follow her difficult diet and drug regimens?  

Maybe it isn’t fair, but it’s nonetheless true. If a doctor is considering stepping out of line and jeopardizing his own security to fight for his patient’s best outcome, you can be sure he’s more likely to reserve that action for a patient who’s fighting right at his side for the very same thing. 

You greatly increase the likelihood that your doctor will go to the wall for you if you are fully engaged in maintaining your own good health. You need to stop smoking, lose weight, exercise, take an interest in disease prevention, and during your visits to your doctor, demonstrate how involved you are with your own health care. Make yourself into the kind of patient that doctors find it rewarding and fulfilling to fight for.

Summary

By understanding how and why the doctor-patient relationship is under fierce attack, you can "manage" your own doctor-patient relationship to make yourself a more effective patient. 
Any doctor worth her salt will respond favorably to patients who seem to understand the duress she faces each day in the practice of medicine, who try to help her keep her head above water while she provides health care, and who take an active role in maintaining their own health. Patients like that are worth their weight in gold, and doctors try hard to provide them with the best health care they can possibly manage.

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July 5, 2007

Armed by the Internet….

SAN FRANCISCO (MarketWatch) — Judy Feder is grateful for having what she calls a rare rapport with her oncologist: the ability to discuss material she finds on the Internet that could alter her treatment course and quality of life.

Feder, 50, a public-relations professional in White Plains, N.Y., was diagnosed with breast cancer in 2001. She began approaching her doctor with articles, studies and ideas shortly thereafter.

Recently, she found a small body of evidence saying that one of her chemotherapy drugs, Xeloda, would be as effective if used for seven days followed by seven days off, as opposed to a 14-day stretch that precedes a break. The difference would spare her some noxious side effects, she said.

Her doctor was receptive. "She was going to go that route anyway but she said ‘I’m really glad you brought this in because I don’t have time to read everything,’" Feder said. Though her oncologist doesn’t agree with all her inquiries, Feder’s input — bolstered by online patient support groups — helps her take charge of her own care.  

"A couple of years of ago there was this default that doctors would say, ‘Oh, there’s so much bad information out there on the big nasty Internet.’ But I think people have gotten a lot more sophisticated" about finding reliable, credible resources, she said. "I don’t think doctors can use that excuse anymore, that if you got it on the Internet it’s not valid."

Feder’s experience underscores how the doctor-patient relationship is changing from one that pits a passive patient against a paternalistic doctor to more of an active collaboration. Some of the shift is driven by financial need. With more cost-sharing and high-deductible health plans emerging in employers’ benefits mix, patients are under pressure to take more responsibility for their care and its costs. 

"Consumers are forced to be more empowered, whether it’s higher copays for physicians or having to make decisions about things," said Mark Bard, president of Manhattan Research, a health-care market research firm in New York. "They need access to information on the front line, and increasingly physicians are being shown that information." 

Nearly two-thirds of physicians say the trend of patients coming in armed with online information is positive, up from 62% in 2004, according to a recent study from Manhattan Research. The referrals increasingly work both ways. Slightly more than half, or 52%, of 1,300 U.S. doctors said they recommend health-related Web sites to their patients.

Watching for pitfalls
Still, not all doctors welcome patients’ initiative and may see it as threatening to their expertise. Specialists such as neurologists, surgeons and cardiologists tend to be less enthusiastic than primary-care doctors and oncologists, Bard said.
What’s more, some doctors worry that consumers will try to self-diagnose and may be led astray by a false sense of security or unwarranted anxiety.
"There are cases where it can be detrimental and confusing to both patients and physicians," said Dr. Rick Kellerman, a family doctor in Wichita, Kan., and president of the American Academy of Family Physicians, whose members often point patients to its Web site, www.familydoctor.org.
Online research tends to benefit patients with certain conditions such as earaches, sore throats or even high blood pressure, he said. "We want patients in those situations to be well-educated."
But where the Web falls short is when a patient has a vague symptom or undifferentiated problem that could be caused by any number of ailments, Kellerman said, citing fatigue as an example. "Tiredness could be from thyroid problems, anemia, viruses like mononucleosis, diabetes. It could be a sleep disorder; it could be from depression."
Once patients jump to a conclusion, doctors can have a hard time steering the conversation back to a productive inquiry, he said. "It sometimes takes a long time to get people back on track."
While some patients will arrive with stacks of print-outs they want to discuss, most make judicious use of credible Internet material, which typically makes office visits run smoother, not longer, Bard said. "For more physicians than not, it’s adding some level of efficiency to their practice and generally improving physician-patient communication."
Doctors need to help patients determine what information is relevant to their individual situation and point out material that may be tainted by conflicts of interest, said Dr. Vicki Rackner, a surgeon and president of Medical Bridges, a Seattle outfit that consults with employers on employee health-care matters.
"There’s an awful lot of information that’s there to sell a product and sometimes it’s really hard to tell whose purposes are being served by having that information on the Internet," she said.
The first step is for patients to understand how much information they feel comfortable having and whether their style is compatible with their doctor’s, Rackner said. "If they are the kind of person who feels more empowered if they’ve done more research and they bring in a file case and the doctor says, ‘Oh, when did you go to medical school?’ 

That’s not a good match."

Where it gets less clear-cut is when patients can’t find answers from the medical establishment, she said. "There are people who go round and round and round and truly elude diagnosis or come to a conclusion that some doctors don’t believe in, like chronic fatigue syndrome."
Conditions that tend to strike women in particular can cause mysterious symptoms that leave patients in limbo for years before they get a solid diagnosis.
"The classic is lupus," Rackner said. "So what do you do? Do you suffer in silence, go to see another doctor? Most people go on the Internet, and the Internet is not set up as a diagnostic tool so they get frustrated. I have a lot of empathy for them, but what they need is a good doctor."
Spurring behavior change
Health information has been one of the Web’s most popular attractions for some time, and the offerings keep growing. Many existing sites are enhancing their tools and forming partnerships to better serve users and fend off competition from high-profile entrants such as Steve Case’s recently launched Revolution.com. See previous Vital Signs.
In the first three months of 2007, 55.3 million U.S. Internet users visited health-related sites, a 12% increase from the same period last year, according to comScore. WebMD Health led the category, followed by the National Institutes of Health site, NIH.gov, MSN Health and Yahoo Health.
Patients increasingly are going online not only to research information about their symptoms and conditions but to check a doctor’s ratings on sites such as HealthGrades.com, Best Doctors and Checkbook.org.
Physicians are starting to take ratings more seriously to improve their own practices, said Dr. Atul Gawande, a Harvard cancer surgeon and author of "Better: A Surgeon’s Notes on Performance."

"If we’re more transparent about our results, that gives people better opportunities to go to places where they know they get better results, but it also puts pressure on us to think harder about how we get those better results," Gawande said.

Doctors’ groups such as the American Academy of Family Physicians, the American Heart Association and the American Society of Clinical Oncology provide patient-friendly Web sites that answer common questions, connect patients to other resources and remind them what to ask their doctors.
With the help of the Internet, patients are more aware of the portfolio of treatments for heart disease, said Dr. Clyde Yancy, medical director of the Baylor Heart and Vascular Institute in Dallas.
Patients often resist making lifestyle changes and lowering their risks, he said, but those who use Web sites such as the American Heart Association’s Heart Profiler increase the chances they will comply with treatments.
"The next time you interface with that patient, they may have an understanding and may even have a sense of urgency," Yancy said. "That’s a wonderful day in the office because you can really make some headway."
Diane Blum, editor in chief of the American Society of Clinical Oncology’s Web site called People Living with Cancer, said reputable sites that suggest questions to ask the doctor or help patients locate clinical trials perform a vital service.
PLWC.org now details 100 cancer diagnoses, up from 25 when it launched five years ago. It has expanded offerings on coping with cancer and survivorship as more people are able to treat it as a chronic condition.
As more people go online for health information, the shift in expectations between doctors and patients is likely to be permanent, Blum said.

"Doctors are getting used to and valuing the more participatory and educated patient," she said. "With the baby boomer generation aging and moving into the prime years of cancer diagnosis, you’re going to see more of this interaction." 

Kristen Gerencher is a reporter for MarketWatch in San Francisco.

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July 20, 2007

Is Ulcerative Colitis in Your Life?

If you have Ulcerative Colitis or know someone who has it, read this…. 

 

This shows that it is a good thing to have those ads on TV that talk about Ulcerative Colitis - just as it is good to have the ads about erectile dysfunction - we need to raise awareness about these conditions for those who know nothing about them - and it helps people know they are not alone and there are treatments out there for them.

Ulcerative Colitis (UC) Sufferers Find UC Quite Disruptive to Many Aspects of Daily Life

UC’s Overall Psychological Toll Is Greater Than for Asthma, Rheumatoid Arthritis and Migraines

WAYNE, Pa., May 17 /PRNewswire/ — Nearly three out of four ulcerative colitis (UC) sufferers (73 percent) responding to a new nationwide survey say not feeling well has become a normal part of life. Furthermore, they describe UC as disruptive when it comes to their relationship with a spouse (64 percent), their sexual relations (75 percent) and their emotional state (82 percent).

UC patients "normalize" aspects of their experience to the point that they resign themselves to these burdens. The majority say that there is not much they can do beyond what they are already doing to feel better (70 percent) and they have learned to live with the disruptions that UC causes (83 percent).

"The findings sound an alarm because a diagnosis of UC shouldn’t mean patients are settling for the level of burden reported in this survey for the next 50 or 60 years. UC is a manageable disease with the appropriate therapy," says David Rubin, M.D., a gastroenterologist and assistant professor of medicine at the University of Chicago Medical Center who helped design the surveys.

UC is a chronic autoimmune disease that causes inflammation in the intestine and can lead to symptoms such as severe abdominal pain and cramping, uncontrollable bloody diarrhea several times a day, fatigue and weight loss. It is typically first diagnosed in people between the ages of 15 to 30 and is estimated to affect nearly 700,000 Americans.

The objective of the surveys was to understand how UC affects patients’ lives, including definitions of what’s normal, the threshold for letting the disease disrupt life, and how patients manage their condition. The surveys, titled "UC: NORMAL (New Observations on Remission Management and Lifestyle)" were sponsored by Shire Pharmaceuticals, a specialty biopharmaceutical company which markets UC medications LIALDA(TM) and PENTASA(R) (mesalamines). Please see Important Safety Information included below.

UC patients generally report more stress/depression compared to other diseases

The findings illustrate that UC takes a heavy psychological toll, which is further brought to light when comparing UC patient responses to the survey responses of people with three other chronic health conditions — migraines, rheumatoid arthritis (RA) and asthma, who were also surveyed as part of UC: NORMAL. Eighty-two percent of UC patients said their condition made life more stressful versus 75 percent of migraine patients, 69 percent of RA patients and 46 percent of asthma patients. Furthermore, 62 percent of UC patients reported feeling sometimes or always depressed about having their condition, versus 49 percent of migraine patients, 52 percent of RA patients and 25 percent of asthma patients.

More than four out of five people (84 percent) with UC say they worry about the long-term health effects of having UC, compared to 45 percent of migraine patients, 72 percent of RA patients and 58 percent of asthma patients. Specific worries most commonly mentioned by UC patients were developing colon cancer, having their colon removed, requiring surgery and public fecal incontinence.

Compliance is a challenge

The survey found that 32 percent of UC patients are not currently taking medication to treat their UC. For patients who are taking medications, compliance is an issue. Of those UC patients taking aminosalicylates (5-ASAs), the first-line therapy and most commonly prescribed class of medication for UC, only about half (54 percent) reported that they have taken all of their 5-ASA medications in the past seven days.

Past studies confirm compliance challenges and report that patients who are noncompliant with their prescribed UC medications have a five-fold greater risk of flare-ups than compliant patients. Traditionally, 5-ASA therapies required two to four times daily dosing and up to 6 to 16 pills a day.

"It’s troubling that almost one-third of UC patients are not taking medication because the standard of care is that all patients with a diagnosis of UC should be on medication to maintain control of the condition and reduce the likelihood of relapse," says Dr. Rubin. "The other challenge we need to address is compliance. More convenient dosing regimens such as once-daily dosage formulations may be part of the solution."

Bridging the physician/patient gap

Patients are also normalizing their experiences with flare-ups, a serious worsening of UC symptoms. UC patients reported an average of eight flare-ups per year. Four out of five (81 percent) of those surveyed say they consider the number of flare-ups they experience to be "normal" for their condition. On the other hand, in a survey of gastroenterologists also done as part of UC: NORMAL, physicians reported that a "typical" number of flare-ups per year on average is three among all patients (2 flare-ups if condition is mild; 4 if condition is moderate; 5 if condition is severe).

UC patients admit that they do not report all of their flare-ups to their physicians, making it difficult for physicians to understand the impact of UC on their patients’ lives. One-third (34 percent) said they are sometimes reluctant to tell their doctor about flare-ups.

"If patients are experiencing multiple flare-ups a year, they should feel empowered to talk to their physicians openly about their disease and ask if their current therapy is appropriate for them," says Dr. Rubin. "As physicians, we need to ask questions to encourage patients to be forthcoming and open with us about the challenges they face and the concerns they have."

As a company committed to educating patients and working with physicians, Shire is developing a program that will launch this fall and is designed to help foster increased discussion between physicians and patients about UC and its management.

Low public awareness

Further confounding the challenges for UC patients, their disease is relatively unknown among the general public. According to UC: NORMAL’s survey of a cross section of the general public, 74 percent of Americans have either never heard of UC or have heard of it but know little about it, even though UC’s prevalence approaches the numbers for HIV/AIDS and Parkinson’s in the United States.

More than two-thirds of UC patients report that having UC is embarrassing to them (70 percent) and that they are reluctant to tell people about their condition (66 percent). With low public awareness and this hesitation to talk openly about their UC, feeling isolated is a risk for UC patients.

"This survey highlights the need to raise awareness and engage the public in a discussion about UC," says Richard Geswell, president, Crohn’s and Colitis Foundation of America (CCFA). "There’s a scarcity of data relating to patient experience and opinions of UC and its treatment, so I hope these findings will help bring this disease to the forefront and assist the ulcerative colitis community in identifying areas to focus our efforts."

"Like many other chronic diseases, there’s no medical cure for ulcerative colitis, but with better management of quality of life issues, improved patient communication and by getting patients on effective therapies, we can help patients live more normal, fulfilling and productive lives," concludes Dr. Rubin. "I hope the survey will spark a national dialogue about UC. I know I’ll use it as a conversation starter in my practice."

The surveys were conducted by Richard Day Research and included a total of 1,975 people: 451 UC patients, 300 gastroenterologists, 309 RA patients, 305 asthma patients, 305 migraine patients and 305 adults from the general U.S. population who may have chronic health conditions. All patient surveys and the general public survey were fielded through an online panel that closely reflects the U.S. adult population overall. Physicians were recruited from a list of all board certified gastroenterologists in the U.S. Assuming no sample bias, the margin of error for the sample of 451 UC patients is +/- 5 percent; assuming no sample bias, the margin of error for a sample of 300 (the other surveys) is +/- 6 percent.

For more information about the survey, visit http://www.ucnormal.com/. For more information on ulcerative colitis, visit http://www.managinguc.com/.

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