A blueprint for high-volume, high-quality lung cancer screening that is detecting cancer earlier—and helping to save lives
Would you believe that one in three physicians has no set policy for informing patients of abnormalities that show up in their diagnostic test results?
"I'd believe it," says a 52-year-old patient with experience in several Southwest HMO and preferred-provider organization plans. "I've had a terrible time getting my test results. One doctor told me to make an appointment just to get the results, implying that I might not receive them otherwise. In another case, I was told that since the results weren't in my file, they must have been mailed, meaning they were normal. Nothing came in the mail.
"Finally," she adds, "I requested another primary care physician, because I could not get my test results, no matter how many times I called or even faxed. I felt like a total pest."
As reported in a recent study titled "Patient Notification and Follow-up of Abnormal Test Results" (Arch Intern Med, Vol. 156, Feb. 12, 1996), "One-third of physicians do not always notify patients of abnormal test results."
Investigator Bruce D. McCarthy, M.D., M.P.H., medical director of Henry Ford Health System in Detroit, emphasizes that "Most of these were trivial results, slight variations from the norm. The physicians knew the patient was coming back soon and could be informed at that time." Other excuses given included patient unavailability, forgetfulness, and lack of time.
But the study pointed up the fallacy of waiting for the patient to return to impart results. Fewer than one-fourth of the physicians surveyed reported having a reliable method of identifying patients who did not make or keep follow-up appointments. So the sequence could turn out to be: test, abnormal result, wait for patient to come back, patient does not come back, test result not conveyed.
The investigators, who based their findings on a 79-percent response from 161 attending physicians and 101 residents in family practice and internal medicine at a large urban teaching hospital and 21 suburban primary care practices in Michigan, outlined four steps physicians or managed care organizations should take:
1. Make sure all tests ordered are tracked until the report is received or until the physician is notified that the test was not done. As many as one-third of the physicians responding said they had no reliable way to determine if results of all tests ordered had been received.
2. Notify patients of the results. "For abnormal results," the investigators commented dryly, "notification is essential for good patient care."
3. After notification, document the notification in the medical record.
4. Make sure that patients requiring repeat testing or follow-up are tracked until such testing is done or until the physician is notified that follow-up testing was not done.
These steps may sound fundamental, but their reliable execution can be surprisingly problematic. Just talking to a few patients, physicians and plan administrators reveals that there are plenty of potential cracks in the system.
Besides physicians waiting to impart the results during a follow-up visit that may not occur, problem areas include:
* Test not performed at all due to patient action. The patient tears up the lab sheet, does not get the test, and the physician never learns that the test was not done, much less what the result might have been. In such cases, the physician may be liable even though it was the patient who did not follow through, although this has not been firmly established in law.
* Tests ordered but not performed due to lab or testing facility slip-ups. The doctor looks at results that did come back and does not notice that other results are missing. Documentation of tests not performed or those that take longer than expected to complete is not adequate.
* Normal results automatically mailed out, but not included in the patient's file, so the patient cannot call in and retrieve a complete profile of test results. In the Michigan study, however, only a little more than half of the physicians surveyed thought it was moderately or extremely important to notify patients of normal results, with only 28 percent saying they always did so. "And that's a problem because patients are demanding to know their results, both normal and abnormal," McCarthy says.
Over the years, because of the difficulty of getting an answer over the phone, patients have become conditioned to believe that their test results are normal if they don't hear otherwise — to believe, that is, that "no news is good news."
"This is not good for doctors or patients," says McCarthy. "If a doctor is going to involve the patient in the test result cycle, it would be better to say, 'If you don't hear from me or get your results in the mail in, say, two weeks, call me.' "
Of course, the physician should have some system in place to check test results against charts to make sure all results have come back. In McCarthy's study, depending on the test ordered, from 5 to 11 percent of those surveyed had no tracking method of this sort, with an additional 12 to 22 percent saying their method was poor or only fair.
The researchers also stressed documentation, meaning including in the patient's chart whether or not the patient was notified of results. Only 55 percent of the doctors queried in the survey said they always document patient notification, with 30 percent saying they did it "most of the time," 12 percent "sometimes" and 3 percent saying they "never" noted communication of even abnormal results. Residents were more hasty here, with 8 percent saying they never documented telling patients about abnormal results.
In the continuum of care, experts say, merely telling someone he or she has an abnormal finding is not enough. Follow-up is a hallmark of responsible care and, as such, needs to be tracked and documented. Yet the study showed that, depending on the test ordered, 64 to 67 percent of the respondents had no way of identifying patients who do not make or keep timely follow-up appointments, and an additional 10 to 12 percent said their follow-up system was poor or only fair. Fewer than one in four doctors boasted an excellent system.
Louis Fehrenbacher, an oncologist in the Northern California region of Kaiser Permanente, admits that test follow-up can be labor-intensive. "If the patient crumples up the lab slip on the way out the door, I have no way of knowing that the patient never got the test," he says. "Critical tests, when the patient is at high risk, will probably be followed up more closely. I probably will not get a call from the lab on a high cholesterol, but I will in the case of an abnormal lesion on chest X-ray."
Fehrenbacher informs patients in various ways. "I call. I also have the option to ask the lab to generate a letter with the results, along with a sheet explaining the results, and then I put it into a window envelope myself. Sometimes people call and get their results. And when it comes to mammograms, of course, the report is automatically sent out."
Of course, this is a long way from beloved pre-capitation TV doc Marcus Welby, who used to drive to patients' homes and scold them if they missed a test or appointment. One might conclude that today's physicians feel follow-ups are the patient's responsibility. But surprisingly, when asked who bore the responsibility of making sure a patient follows up on an abnormal mammogram, 73 percent thought the physician was moderately or very responsible if the lesion was "probably benign." Forty-six percent believed the onus was on the clinic to ensure follow-up. When the abnormality was "suspicious," physicians assigned increased responsibility to all three — the doctor, patient and the clinic. The problem is, when everyone's in charge, who's in charge?
Mammograms are one area of patient testing that has specifically interested the government. Along with depression, chronic pain and other areas, mammography has been the subject of specific guidelines from the Agency for Health Care Policy and Research, and the mammography guidelines address patient notification.
For the most part, however, regulatory bodies such as the usually minutiae-minded Health Care Financing Administration and the HMO-accrediting National Committee for Quality Assurance regard patient test results as part of medical records handling and do not address the subject separately. According to their spokespersons, HCFA and NCQA assume that a system is in place and is being followed, without emphasis on the specifics. "I guess this could be part of bringing the patient into partnership with the physician," ventured the spokeswoman for HCFA, who added that she has encountered problems herself in obtaining test results.
Several managed care organizations, HMO and PPO alike, report that handling of test results is left to the physician's discretion. Apparently, mandatory systems usually are not handed down from on high. "We would only step in if a patient complained," explained a spokesman for Intergroup of Arizona Inc. in Phoenix. "In that case, we might help physicians set up a test-results system. You know, educate them."
If mishandling test results or confronting anxious patients with administrative doubletalk results in patient dissatisfaction, potential loss of market share or malpractice (alluded to as a possibility by the researchers, but not documented), how can test results be used to enhance the cachet of a managed care plan or provider?
For one thing, managed care organizations should remember that test results are of intense importance to patients. Based on the handling of her test results, a California screenwriter has nothing but praise for her health plan, Kaiser Permanente in Northern California. A visit to her Ob/Gyn resulted in the discovery of a large abdominal mass. "That's when all the tests began," she exclaims. A complete blood workup, ultrasound, a test for endometrial cancer. "The doctor told me the results on the spot," she says. "She was really great about talking me through what she was doing."
In this case, the physician also responded "outside the box" by scheduling an operating room immediately to avoid delays, making follow-up appointments directly (sparing her patient the hassle of appointment-making by telephone), and even calling her anxious patient long distance from a weekend trip to report some late-breaking results. The verdict: benign fibroid. "When something like this happens, you don't want to wait for a letter," sums up this happy Kaiser customer.
"We are a group-model HMO," explains Richard Rabens, M.D., director of the Department of Quality and Utilization in the Northern California regional office of the Kaiser Permanente Medical Group. "We don't have physician contracts or provider manuals. Communicating test results is considered part of normal practice and left to the physician. We have no overall policy. But every physician has a chief responsible for the quality of care. The patient-physician interface over test results is certainly one area we look at, including the matter of how clearly the doctor explains the test results. We do a lot of patient-satisfaction testing."
According to Rabens, physicians can mail test results, maybe jotting a comment at the bottom. Sometimes the results are given by phone by the nurse or medical assistant. Most of the time, a note will be made in the chart — "Lab OK, pt informed." "We are also working on an electronic system, in which the lab tests will be in a patient's computer record," Rabens says. "The doctor can push the 'L' key for 'lab' and get the results. He or she will also see when the next mammogram should be scheduled, and so on."
A Kaiser pediatrician, Rabens says he will get the patient's chart back marked "Failed to keep" if a patient is not brought back for a follow-up appointment or to appear for tests. "We try to set up all follow-ups before the patient leaves," he explains. "Well-baby visits are planned for the entire first year."
Through the Northern California region of Kaiser, lists of women who should get a mammogram are generated periodically. Address labels are sent to the lab so reminders can be mailed. Sometimes calls are made. When a mammogram is performed, the results go to the physician, with double-checks by the lab to make sure abnormal results were received and appropriate follow-up actions taken.
"Our physicians are expected to call people if there is an abnormal result," says Paul J. Brat, M.D., medical director of HealthPartners, a staff- model HMO with 525 doctors (and thousands of contracted physicians) in Minneapolis. "In the case of a preventive test, such as cholesterol or a normal Pap smear, a letter will be sent out. Some clinics have a lab line patients can call. All of these findings and transactions, ideally, are entered in the patient's chart."
In a sense, the doctor and patient have different points of view at the time a test is performed. On some level, physicians may feel that a transaction has been completed: The patient has been examined and tests ordered. The ball is in someone else's court for a while. However, the patient may feel the test is really a beginning — of finding out what is wrong and embarking on a treatment. The latter can raise expectations and create a craving for attention. It makes the communication of test results an emotionally pivotal event for the patient — even though the physician may view the interaction as a procedural headache.
"I always enjoyed my physical at Cigna," recalls the 49-year-old president of a nonprofit company, almost wistfully. "I would come in, they had all my test results, and they'd go through each one telling me what it meant. They could even generate my life expectancy based on my risk factors. It was interesting. For some reason, though, I think they stopped doing that."
With some studies showing that employees will switch health care plans if it means as little as $12 more a month in their pockets, it seems reasonable that patient satisfaction and loyalty could turn on equally small nonfinancial niceties, such as a doctor's caring enough to call and discuss a questionable test result, or having someone in the office dial a patient's answering machine with a message of good news.
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