They have symptoms, but that doesn't mean primary care physicians can pinpoint a physical problem. Yet they do suffer, and are a cost center for insurers and employers.
Don't look now, but someone's cloned your Aunt Penny. You know Aunt Penny, or Uncle Albert, or Cousin Rita. Pick a name. Every family has one. It's the patient who ran to her health care provider at the slightest twitch, or tingle or — God forbid — ache. She planted herself in the corner of the living room couch after holiday meals, complaining loudly that those doctors couldn't seem to find out what was wrong with her. What everyone else suspected, but probably never spelled out in so many words to Aunt Penny, was that the physicians couldn't find anything because there wasn't anything physical to find. She was one of the worried well.
About 16 percent of U.S. residents had 11 physician visits and medical tests done in 1997. That figure then climbed to 22 percent in 2002, according to an ABC News survey.
An analysis by the Center for Studying Health System Change cites e-health — the promise and problem presented by the Internet — as a possible reason for rising consumer demand. "Some consumers, including the so-called worried well, may seek too much health information and spur demand inappropriately." (For more on this, see the chart "Too Many Patients, Too Little Time," below.)
Aunt Penny, says David S. Sobel, MD, MPH, the director of patient education and health promotion at Kaiser Permanente Northern California, may have been somaticizing — something we all do to one degree or another. "When you're feeling really good about yourself, you can tolerate all types of bodily symptoms and problems and you just kind of go on with your life," says Sobel. "If you're in a situation where you feel really kind of stressed, out of sorts, off-balanced, then suddenly, many of these symptoms become worrisome. They go through an amplifier, if you will. They get cranked up."
Sobel is one of a growing group of clinicians, public policy experts, and HMO officials taking the worried well much more seriously — and with much more sympathy — than we probably took Aunt Penny when we were growing up.
Sobel's chapter in the textbook The Biological Basis for Mind Body Interactions, Progress in Brain Research, is titled "The Cost-Effectiveness of Mind/Body Medicine Interventions." In it, Sobel cites a study in which a woman visits her doctor nine times in the course of a year with various ailments. "Mrs. G. was not imagining or faking her troubling symptoms. She was truly suffering, her life was significantly disrupted."
He also cites a 1993 study in Behavioral Healthcare Tomorrow that looked at Kaiser Permanente over a 20-year period and found that "more than 60 percent of all medical visits were by the 'worried well' with no diagnosable disorder."
Paul Ginsburg, president of the Center for Studying Health System Change, says, "I think the burden is substantial both in money and in physician time. Certainly a lot of the tests that may be done for people that come in are expensive, and we all pay for them through our health insurance premiums."
These patients leave what Jaan Sidorov, MD, medical director of care coordination at Geisinger Health Plan, calls a "big footprint" on primary care. They will go to the physician frequently and the PCP, because he can't pinpoint the problem, will often refer to specialists, who add more X-rays and tests.
"Sometimes tests and X-rays are falsely positive and that generates additional testing," says Sidorov. "It's just this never-ending cyclone of ongoing health care. A small percentage of patients have this, but I think from the health insurance perspective, these patients generate a disproportionate share of claims."
Again, from Sobel's chapter: "People with bodily complaints for which no physical cause can be found are an estimated 20 percent to 84 percent of all patients seeking care in a general medical setting."
Too far removed
William J. Scanlon, PhD, director of health care issues at the U.S. General Accounting Office, says that it's truly difficult for payers to deal with this problem. He points out that the vast majority of claims in Medicare, for instance, are processed automatically and electronically.
"If you've got a diagnostic code for symptoms, then it's very hard without digging further to challenge the appropriateness of the service," says Scanlon. "And to go further you would need to have providers submit documentation, and that's done extremely rarely. It's probably less than a couple of percent of the time. There's an issue that there may be worried well, but the wellness determination is made after the service is provided in terms of examining them, dealing with symptoms."
Migraines one week, back pains the next, diarrhea six months down the road. "It's a saga of continuing multiple diagnoses," says Sidorov.
Scanlon says: "It takes what you might call intimate knowledge of the individuals to be able to identify this as happening. Payers are not that engaged. We probably wouldn't want them to be that engaged. It's a real dilemma. How do you effectively manage the huge volume of claims from afar without being intrusive? No one's had an answer to that yet."
Sobel believes that Kaiser has, in fact, found an answer. But first, back to the question: Exactly who are the worried well?
"Depression, somatization disorder, anxiety disorder, or panic disorder — those are formal psychiatric diagnoses," says Sobel. "There are certain criteria that people need to meet in order to qualify for those psychiatric diagnoses." However, many primary care patients will have significant levels of psychosocial distress that will not qualify for a psychiatric diagnosis, says Sobel.
"Now, many of the people who have psychiatric diagnosis, like anxiety and panic disorder and depression, will have bodily symptoms that go along with them. But also, a significant portion of the people who have just psychosocial distress without a psychiatric diagnosis also have somatic or bodily complaints."
The worried well are those with subsyndromal symptoms.
"It turns out that a lot of people have depressive symptoms even though they don't have depression," says Sobel. "Those depressive symptoms have a huge impact on the quality of their life, their functional status, their medical utilization, and so on."
Sobel is realistic about what medicine can do, understanding that not all the problems of life can be fixed. "However, we can't stick our heads in the sand about them either," he adds. "What we need to do is to develop good, targeted, nonstigmatizing approaches to helping people learn psychosocial skills so that they can better cope with the stresses of everyday life without as many somatic symptoms and without the pressing need to visit doctors for what often turn out to be fairly nonproductive, nonsatisfying clinical encounters. We've developed a range of services. We used to call them psycho-education services, but as soon as people heard the term 'psycho,' that was out. So then we relabeled them behavioral health education."
It focuses on stress, and on the belief that you do not need to have a diagnosed disorder to benefit from learning the skills that would help you relax, manage your moods, manage your life. These programs work, insists Sobel, and health plans should be lining up to learn from Kaiser Permanente.
"If there was a drug that could produce the effects that I outline in that article, and it had a relatively good safety profile, and it had few side-effects except that people said it made them feel more confident and more in control and they liked it and it was a very versatile drug that could be administered through self-help readings, interactive videos, audio tapes, group sessions, and group appointments — if there were a drug like that, you could bet that it would be on the formulary and you could bet that we'd be prescribing it left and right."
Purchasers would demand as much, since the worried well are a real drain on productivity.
"Talk to employers and ask them about their top concerns," says Sobel. "Those concerns will be in the area of stress and mental health and mind/body medicine. If you look at worker productivity and worker absenteeism, much of that productivity is compromised more by subsyndromal symptoms than by many of the clinical or medical conditions that we spend so much time diagnosing and treating. Again, I'm not even talking about things like alcoholism and frank depression."
Managing the worried well begins, but certainly doesn't end, in the doctor's office, he insists.
"I think you have to start with provider education," says Sobel. "If physicians undermine and badmouth this, then it's real hard to see how it can be supported in an organization or a system.
"Having said that," he continues, "relying on provider referrals as the only major source of getting people into these kinds of interventions and programs is fraught with many difficulties. I think that these kinds of services should be directly marketed and offered to patients and members.
"I would begin as we at Kaiser Permanente have begun — with a core mind/body medicine program. We have extensive behavioral health education programs that complement primary care medicine and psychiatric services. There are materials and classes and groups and programs that are designed to help patients without psychiatric diagnoses."
It doesn't necessarily mean spending more money. "Some of our programs are fee-for-service," says Sobel. "They're not covered benefits. It's not necessary to spend more. Just offer services that are more appropriate for patients. It's not enough just to have coverage of mental illness."
Addressing these issues will, he believes, increase patient satisfaction.
"You get more satisfied patients because truthfully, the mismatch between patients' needs and the typical medical response usually leads to frustration for patients because they don't actually get their needs met very well. It's frustrating for clinicians because we're really not usually able to intervene in a way that relieves suffering or really helps the patient significantly and it wastes a lot of resources."
Offered for free
Kaiser so believes in the long-term benefits of the mind/body program that, beginning on Jan. 1, it made the benefit available to its California members for free. "If people are willing to invest their time and energy to learn those skills, the last thing on earth we want to do is to put a fee barrier between them and those skills," says Sobel. But it turns out, he says, that the program is highly cost-effective.
"The patients become less dependent on the medical care system, especially for things that are counterproductive, risky, and don't contribute to their overall health," says Sobel.
Sidorov agrees with Scanlon, of the GAO's office, that health plans may have a difficult time finding the worried well. However, evidence mounts that the effort may well be worth it.
"You can get a hint about who out there is like this, because if you do a claims analysis, which is linked to ICD-9 codes, you'll see typically a young or middle-aged person who's had five or more disparate diagnoses," he says. "You know, diarrhea, migraine, low back pain, indigestion, and chest pain. When a 30-some-year-old person has multiple visits to a primary care physician and multiple visits to different specialists for that kind of spectrum of health care complaints, that may be a clue that you're dealing with someone who has undiagnosed depression or somatization disorder."
Compared to blockbuster diagnoses such as solid organ transplants, coronary artery disease, and disease related to the growing problems of obesity and diabetes, the problem of the worried well is not high on the scale of what costs the health care system money, says Sidorov. "But it's significant enough that health plans have attempted to address it and what they've done is a claims analysis," says Sidorov. "You scour your claims for them. Then you intervene by notifying the doctor."
But what about the argument that, in this litigious age, physicians may find it difficult to tell the patient that he falls into the worried well group and so, therefore, that expensive test might not be appropriate at this point?
"When doctors say that to me, my response is 'First of all, the reason you are in our network is because there are a few patients like this and it is your job to spot these folks.' We have had conversations like this in the context of undiagnosed depression. The other thing is that under the usual terms of a capitation agreement, where physicians provide primary care services, this does fall within the definition of primary care." PCPs should spot this and render appropriate treatment.
"Now, rendering appropriate treatment," says Sidorov, "doesn't mean saying to the patient, 'I don't think anything's wrong with you, you're crazy, take this psychological medicine and call me in the morning.' That's not what doctors are supposed to do. Personally, when I'm confronted with a patient like this, I say to him, 'Look, I haven't been able to find anything wrong yet. Let me continue to monitor your symptoms. But I also notice that the symptoms are causing a lot of wear and tear on you emotionally. Tell me about the emotional dimensions of what you're going through.'"
There are cost-effective ways physicians can guide the worried well through the system, he says. "Part of the dance between a physician and a patient is to help the patient cope better," says Sidorov. "That's what doctors are being paid to do. From a health plan perspective, as the gatekeeper model has eroded, it's easier for patients to go see different specialists. One of the downsides of that model is that worried well patients can inappropriately access specialist care. I think specialists are not as equipped as primary care physicians to spot these patients."
We end with a caveat by Kaiser's Sobel, who does not particularly like the term "worried well" because it sounds pejorative to him. "It's more like the worried sick," he says, "because these people are not well. Worried well has the taint that these people are actually faking it. That is true for only just a small proportion. But for most, the truth is that as a result of their worrying, they're actually sick, meaning they're experiencing symptoms and they're suffering."