Tuesday, July 24, 2012
After MaryAnn and Drew Szilagyi, a Houston couple in their early 30s, saw their physician for routine physicals a few years ago, they didn't have to wait for his call about the blood work. Just two days later, Mr. Szilagyi, a banker, logged onto a Web site, perused his lab results and sighed with relief. All normal.
But when Mrs. Szilagyi, who sells luxury kitchen equipment, followed suit, no results were displayed. Instead, a message flashed: Contact Doctor's Office.
Her internal alarms began clanging.
That day she left four messages for her doctor. No response. The next day, Mrs. Szilagyi, who has a family history of breast cancer, pleaded with the receptionist for help. She pulled Mrs. Szilagyi's chart and said, "I can't tell you what it says, but I don't think you should worry."
Now angry as well as frightened, Mrs. Szilagyi continued to worry. On the third day, the doctor's nurse reached her. What result had caused so much mystery and misery?
Mrs. Szilagyi, it turned out, had a vitamin D deficiency.
"All that stress over getting some more sun and eating better," said Mrs. Szilagyi, now 35.
The excruciating limbo that follows significant medical tests is a nearly universal experience for patients. Doctors do not always ease patients' anxiety, delivering bad news matter-of-factly, failing to call swiftly, even losing results altogether.
As medical records move online and state regulations loosen, many patients can bypass the doctor's call and get the results of these tests faster, directly from labs via Web sites and apps. But new federal regulations may permit all patients that right by year's end. Many experts are concerned that pervasive direct access to test results may have serious drawbacks, leaving patients even more confused and overwhelmed by information they do not know how to interpret.
According to the Centers for Disease Control and Prevention, about 6.8 billion laboratory tests were performed in the United States in 2007. At that time, more than 4,000 diagnostic tests were available and 1,420 diseases could be detected with genetic testing.
The impact of waiting for test results on patient anxiety is significant. It has been studied in breast cancer biopsy patients, infertility patients and patients undergoing genetic testing, among others. Stress alone, these studies show, can affect recovery time and exacerbate side effects from medications. The psychological toll in households can also be harsh, especially among family members with clashing coping styles - if, say, one person has an optimistic bent, while the other tends to presume the worst.
In an exploratory study at the Wake Forest Baptist Medical Center in Winston-Salem, N.C., published this spring in The Journal of the American College of Radiology, more than 80 percent of patients said they would rather have online access to such results within three days, no matter how dense the jargon, than wait a week or longer for a doctor's interpretation. By the end of September, the medical center's patients will be able to directly access their test results three days after physicians sign off and, in some cases, even sooner.
"Once you know what you have, you can make plans," said Dr. Elvira V. Lang, a radiologist who taught at Harvard Medical School and has studied the effect of stress on cortisol levels in patients waiting for biopsy results. Until then, she said, you may imagine the worst, "but you can't map the next step."
While some results are now available within hours, many high-stakes tests, involving growing cultures or tissue dissection, still require days, even weeks. And according to Dr. Hardeep Singh, who wrote about direct access to test results last December in The Journal of the American Medical Association, physicians themselves do not always give patients results in a timely manner.
Dr. Singh, who leads the health quality program at the Houston Veterans Affairs Research Center of Excellence, said in an interview that several studies have shown that doctors delay or fail to notify patients of as many as 36 percent of abnormal test results, including possible malignancies.
There are many reasons, he said, chief among them the lack of reliable tracking systems to follow up the hundreds of results that a busy physician typically receives in a week.
Since 2003, patients have been entitled to receive medical records from doctors, hospitals and health plans within 30 days of their request. Clinical labs, which perform most tests and are required to report to the physicians, were the exception.
Seven states permit labs to release reports directly to patients, seven states allow such reporting with physician approval, and 23 states are silent on the issue. Thirteen states mandate that labs report only to physicians. But potential changes under review to federal health privacy regulations would allow all patients to request results directly from labs, which would have 30 days to comply.
Would quicker, direct access reduce anxiety? Or, without a medical professional offering context and explanation, could it provoke greater anxiety or even false assurance?
Dr. Jason Poston, an associate fellow at the Bucksbaum Institute for Clinical Excellence at the University of Chicago Medical Center, has mixed feelings about direct access.
"It's empowering for patients," Dr. Poston said. "But anything abnormal shows up red and bold. Some of those results may be due to chance. Some of them are not suggestive that you have a disease. So you run the risk of anxiety either with too little or delayed information, or with free access to all the information, because it can overwhelm you."
The variety and complexity of tests continue to grow. Many do lead to critical interventions. But others merely point to statistical possibilities, opening doors to further testing or to the gray universe of "watchful waiting." These results often require a subtle, sophisticated interpretation that may be far beyond the average patient's first reading.
Many experts argue that if patients are to have direct access to test results, doctors and labs should ensure that patients are also provided with information to help them understand the shorthand numbers - and that doctors themselves follow up promptly.
Dr. Poston, an intensive care specialist, teaches medical students to begin educating patients about results even before the test is done. Patients should have realistic expectations about what results may or may not reveal, he tells students, and why some tests still take time to be analyzed. Not only will patient anxiety be somewhat alleviated, Dr. Poston said, but the role of the doctor as critical guide and partner in the patient's care will be reinforced - even as a patient's need to participate in decision-making will be supported.
Informed, calmer patients, Dr. Poston added, are more likely to comply with tests, surgery and medication, increasing the likelihood of better outcomes. But a doctor needs time to assess the patient's psychological needs - and doctors can't bill for hand-holding. "How do we come to a system where we can do right by the patient and also make the practice financially viable?" Dr. Poston said.
Mrs. Szilagyi, the Houston woman who had the stress-strafed episode with online results, also went through two difficult pregnancies. Those times, she did not have direct access to results, which were given to her, and carefully translated, by a genetics counselor.
Her divergent experiences offer a window onto the new and the traditional means of learning vital medical information.
During her first pregnancy, at 31, she had a routine first-trimester ultrasound and blood work. The screen revealed that the pregnancy was in the abnormal range: Her baby's chances of havingDown syndrome were 1 in 191. Jennifer M. Hoskovec, director of prenatal genetic counseling services at the University of Texas Medical School at Houston, met with Mrs. Szilagyi, who chose to have an amniocentesis, knowing that the procedure could pose a small risk to the fetus.
Mrs. Szilagyi had to wait two weeks for the procedure and two more for results. She was a wreck, enduring migraines and eating little. Mrs. Hoskovec would check in. Although she tried to contain Mrs. Szilagyi's worries by offering evenhanded information, she did not dismiss her anxiety as overblown. "Pregnancy is stressful," she told Mrs. Szilagyi. Worry and fear are normal.
Finally Mrs. Hoskovec called with good news: Their baby boy was fine. That first screen was a false positive.
But during her second pregnancy, Mrs. Szilagyi's first-trimester tests also came back with abnormal results. Mrs. Szilagyi again had an amniocentesis.
Mrs. Hoskovec called with results. In some fetal cells, a small piece on chromosome 10 was missing. The variation could be normal, she said, but it could also suggest a risk.
In her 18th week, Mrs. Szilagyi had a second amniocentesis. "I had so much worry and guilt," she recalled. "My husband was O.K. with the odds. I wasn't, and who did I think I was to play God, to need to know what was going to occur? And what could I have just done to this baby?"
At last Mrs. Hoskovec phoned. The Szilagyis were on schedule to deliver a healthy girl.
In Texas, where the Szilagyis live, patients can get access to lab results if the physician concurs. But that restriction will disappear if the revised federal regulations take effect, most likely later this year.
Across the country, patients and providers will have to decide how to manage the new rights. Will the responsibility for learning results begin to shift from doctor to patient? How will doctors ensure that patients understand what they have read online? How will doctors manage the heavy traffic of panicky phone calls?
Few argue, in theory, with the notion that patients should have faster access to test results. But after waiting for more test results than she cares to remember, Mrs. Szilagyi believes sometimes an expert's interpretation is more important than instant answers.
"If you had normal labs from a basic screen, going online is great because it cuts down waiting time," she said.
If she had read the results of the second pregnancy's amnio online? "I would have been devastated," she said, adding that Mrs. Hoskovec had been invaluable.
"I needed Jen, with her knowledge and expertise, to get me through."
A Little Preparation, a Lot of Coping
As patients wait for test results, anxiety rises as time slips into slow motion. But experts say patients can regain a sense of control.
- Start before the test itself.
- Because fear can cloud memory during talks with doctors, take notes. If you can, bring a friend to catch details you may miss.
Some pretest questions:
- What precisely can this test reveal? What are its limitations?
- How long should results take, and why? Will the doctor call with results, or should I contact the office?
- If it's my responsibility to call, what is the best time, and whom should I ask for?
- What is the doctor's advice about getting results online?
During that period of patient limbo, "many people try to inoculate themselves by imagining the worst," said Guy H. Montgomery, a psychologist who teaches at the Mount Sinai School of Medicine. "So when they get the results they can say, 'I knew that.' Or they feel extremely relieved."
The four-alarm worriers may also hold tight to magical thinking: If they can stare, unblinking, into the abyss of worst-case scenarios, maybe the abyss will blink first - and the news will be good.
"Is that worry working for you?" Dr. Montgomery said he tells patients. "If you need a day to cry, fine, but if it's incapacitating you, we need to find another way."
Experts also say patients should recall strategies they've found useful in other stressful situations. Suggestions include self-hypnosis and yoga. Many patients find comfort in prayer.
Others keep busy to avoid ruminating. Many stave off feeling helpless by doing something helpful for someone else. Or they combat anxiety by doing activities they enjoy. (Power-shopping, anyone?)
For patients who find anxiety crippling, some recommend medication. Dr. Elvira V. Lang, a radiologist who teaches medical professionals how to alleviate patients' stress, prefers that patients not go that route.
"Once you take the medication, you can't drive, operate machinery, prepare documents carefully," she said. "I urge patients to take deep breaths: taking in strength and letting go of whatever thoughts are not helpful."
Dr. Montgomery says mental toughness may be overrated. "People say, 'Suck it up!' " he said. But waiting for the results of an important medical test, he added, "is an out-of-ordinary experience, a significant life event. It's O.K. to ask for help."
Posted by Gary at 7:19 AM
When Nancy Mulhearn learned she had Parkinson's disease seven years ago, she kept the diagnosis mostly to herself, hiding it from friends, colleagues - even, at first, her mother, sister and teenage children.
After seven months, she decided she had to tell her family, and they settled into an unspoken agreement not to talk about the disease. She also realized her colleagues already suspected the truth: One asked why she had trouble applying her lipstick. She sometimes could not control her shaking hands.
Still, it was years before Ms. Mulhearn, now 51, of Bethlehem Township, N.J., felt she could talk freely about her condition. Ms. Mulhearn, a school secretary, regrets having waited so long.
"I didn't want anybody to feel sorry for me," she said. "To have people look at you and start crying - that's not what anyone wants."
In that, Ms. Mulhearn is hardly alone. Doctors and researchers say it's not uncommon for people with Parkinson's to conceal their diagnoses, often for years. But the secrecy is not just stressful to maintain; experts fear that it also may be slowing down the research needed to find new treatments.
Parkinson's disease progresses over many years as brain cells that produce dopamine, a neurotransmitter, slowly waste away. Without dopamine, nerves have trouble sending messages; muscle movement becomes erratic and difficult to control. Some patients, though not all, experience memory problems, altered speech, cognitive difficulty, insomnia and depression.
Treatments only alleviate symptoms and don't slow the progression of the disease. Partly because there are no therapeutic options for those with new diagnoses, many ignore the disease until symptoms become obvious.
The CBS News correspondent Bill Geist, 67, revealed on a Sunday morning news program this month that he had been living with the diagnosis for a decade.
His wife finally told their children four years ago, but until then he had shared the news only with her. He took dozens of pills daily in secret, even saying at book signings that his poor handwriting resulted from a broken wrist.
It was only a year ago, Mr. Geist said, that he told his producer about his condition. The producer suspected it; viewers had been writing to the network with their own concerns. "I just somehow thought I could get away with it," Mr. Geist said in an interview. "I probably wouldn't have told anybody ever, if it was strictly up to me."
Many patients feel the same. Some are in denial - Ms. Mulhearn said that only after letting go of her disbelief and fear of burdening others did she come to embrace talking about her disease, raising money for research and actively looking for clinical trials to join.
Many also fear the consequences to their careers.
Twelve years ago, Rick Seaman was a 53-year-old consultant in Palo Alto, Calif., when his Parkinson's was diagnosed. He began to tell prospective clients after one inquired about his health. Afterward, he said, he began to see a drop in new business. "They don't need extra reasons to say no," he said.
Dr. Karen Jaffe, an obstetrician and gynecologist in Cleveland, received a diagnosis five years ago at age 48. At first, she refused to believe it. She got a second diagnosis a year later, but did her best to conceal it. "There's something about this diagnosis that makes us certain that we will be judged," she said.
She slipped into the neurologist's office next door to her own for appointments, hoping her colleagues and patients wouldn't see her in the hallway. She told her husband, but kept the news from her children. Her 13-year-old learned about it while reading her mother's journal.
Dr. Jaffe told her children to say nothing, snaring them in what she called an "awful, terrible web" of secrecy.
Concealment became as stressful as the disease itself, Dr. Jaffe said. As she lost weight, worried friends asked if she had cancer. Finally, she decided to begin sharing the truth.
To her surprise, Dr. Jaffe found her patients supportive, and she seized the opportunity to plunge into fund-raising. Dr. Jaffe and her husband, Marc Jaffe, started a comedy group called Shaking With Laughter to raise money for Parkinson's disease research.
Trials aimed at finding a cure or delaying progression of the disease must enroll patients whose disease is newly diagnosed. But with so many patients choosing to keep a low profile, many trials struggle to enroll enough subjects.
Some highly motivated people do discreetly take part in trials even while hiding their Parkinson's - but many who would prefer to ignore their disease avoid medical settings.
Dr. Kenneth Marek, president of the Institute for Neurodegenerative Disorders and lead investigator for the Parkinson's Progression Markers Initiative, sees the difficulty firsthand.
His research, paid for by the Michael J. Fox Foundation, tracks the progression of the disease in patients who do not yet take medicine for it. The less damage that has been done to the brain, the easier it is to distinguish the primary mechanisms of the disease from the many cascading effects to come.
A large research center is doing well if it manages to recruit one Parkinson's disease patient a month for study, Dr. Marek said. Since 2010, the biomarker study has recruited just 239 new patients out of the 400 needed.
"The irony is that the group that is in some ways the most informative, which is people who are just diagnosed and untreated, are also the most difficult to identify and convince to be in a clinical trial," he said. The most effective way to speed the development of treatments would be to recruit patients with new diagnoses more quickly, Dr. Marek said.
With public figures like Michael J. Fox talking about the disease, there is reason to think that Parkinson's patients are becoming more open.
Mark Kodner, 52, a managing partner at a St. Louis law firm, calls Mr. Fox an "inspiration." Mr. Kodner, who learned he had Parkinson's 10 years ago, kept his condition relatively private, telling only his wife and, a few months later, other relatives and a few close friends.
Like Dr. Jaffe, however, Mr. Kodner eventually found the stress of concealment overwhelming. Mr. Kodner, who golfs and attends public functions in connection with his work, found himself avoiding social events and battling anxiety that his muscles would freeze at an inopportune moment.
Six years after his diagnosis, he began widely sharing it with clients and friends. News quickly spread around the St. Louis legal community.
The result? "I think people are nicer," he said. "But that turns out to be O.K."
Mr. Seaman, the California consultant, eventually closed his business. He and wife now help care for their two grandchildren, ages 3 and 7. They do not know about his condition. "Someday, I'll have a sit-down with them," he said.
Posted by Gary at 7:17 AM