Chronic, elusive symptoms are the bane of patients, physicians and employers alike. They spread frustration all around: to patients, because the symptoms appear unrelievable; to physicians, because they defy diagnosis and therefore, effective treatment; to employers, because they sap productivity; and to benefits managers, because they drive up costs with repeated diagnostic tests, office visits and specialty consultations.
Most companies have more than a few employees with these mysterious conditions, and their numbers are growing. The symptoms– fatigue, body aches, difficulty concentrating, digestive disturbances, insomnia and poor memory–are often debilitating but too generalized to attach to a specific diagnosis.
“When I started practice 16 years ago, fibromyalgia was considered a fictional diagnosis,” recalls internist Cliff Hale, MD, of Lansing, Mich., in a reference to one of the most common of these elusive conditions. “It was a euphemism for psychosomatics. But over time, the evidence has mounted, and it’s become an identifiable, treatable, bona fide diagnosis. Yet some physicians still believe it’s not real.
“Now, that’s the professional community,” emphasizes Hale. “If you look at the employer community, the human resources people, you can expect the curve of ignorance to decline even more slowly.”
The Americans with Disabilities Act of 1990 raised the stakes, however, and may be contributing to a change in attitude.’ The law bars discrimination against disabled individuals, and increases employers’ responsibility for keeping them on the job. Further, when disputes arise, the ADA allows plaintiffs to seek punitive damages for emotional distress, where previously they could only win back pay or reinstatement.
Chronic, difficult-to-diagnose disorders include depression, chronic fatigue syndrome (CFS), fibromyalgia, post-traumatic stress syndrome, Lyme disease and environmental sensitivities. Depression, CFS and fibromyalgia are among the most common, yet they still go undiagnosed all too often. Far from being a hopeless conundrum, however, they’re proving to be an ideal match for the discipline of managed care.
About 10 percent of Americans suffer from major depression. In the course of their lifetime, 7 to 12 percent of men and 20 to 25 percent of women will have the disorder. The national tab for depression is an estimated $44 billion a year in direct and indirect costs; it costs businesses an estimated $24 billion in absenteeism and lost productivity alone. Each year, depression accounts for roughly 7 million hospital days, 13 million physician visits, and more than half of all corporate mental health claims.
Still, only a third to a half of those with major depression are identified by medical practitioners, according to the federal Agency for Health Care Policy and Research.
The prevalence of CFS in the U.S. is at least four to 10 cases per 100,000 adults, according to the Centers for Disease Control and Prevention. CNA Insurance has called CFS the fastest-growing disability claim of the past decade, soaring 273 percent between 1987 and 1993.
CFS is marked by unexplained weakness and debilitating fatigue that substantially lower the individual’s activity level and are unrelieved by rest, plus at least four of the following symptoms: impaired short-term memory or concentration, sore throat, tender lymph nodes, muscle pain, multijoint pain without swelling or redness, headaches, unrefreshing sleep and post-exertion malaise lasting more than 24 hours. The symptoms must persist or recur for at least six consecutive months before the disease can be diagnosed.
Fibromyalgia sufferers often have a similar tendency toward exhaustion, but their primary symptom is soft-tissue pain, sometimes to a crippling extent, also with no discernible organic cause. Researchers estimate its incidence at 2 to 4 percent of the population.
To add to the complication, depression often accompanies fibromyalgia and CFS, both of which are frequently misdiagnosed as Lyme disease. Because depression can cause or exacerbate fatigue, body aches and other somatic symptoms; the vagueness of patients’ complaints further blur the lines distinguishing all three disorders.
To minimize the medical costs associated with elusive illnesses, savvy companies and health plans have begun using case management and specific programs designed to help sufferers get the appropriate care right from the start. Inroads in the diagnosis and treatment of depression, the focus of educational programs nationwide, have made an enormous difference as well.
Kimberly Veitch, marketing director for Compass Information Services, a mental health assessment organization, describes a two-pronged approach: “In addition to the costs of depressed patients not being recognized and treated, the cost of ineffective treatment is huge,” she declares. Compass has created a computerized system that uses a formula to predict an individual’s likelihood of benefiting from specific treatments, such as a combination of medication and psychotherapy administered by a particular provider. Marketed by Bristol-Myers Squibb, the program is in use at more than a dozen major corporations, including Merck and Sterling Winthrop.
Companies using the Compass system, according to Veitch, saw their mental health and substance abuse costs drop from an average of $584 per employee in 1993 to $295 in 1995, even though use of services more than doubled. At Merck, total spending for mental health/substance abuse treatment went from an annual tab of $7.2 million in 1992 to $3.4 after just one year of using the Compass system. At the same time, the pharmaceutical company reduced employee co-payments, encouraging wider use of the managed mental health program.
The system allows case managers to “identify unsuccessful treatment early on and adjust the regimen to provide more effective help for a patient,” Veitch explains. “If the patient does not make significant progress after 12 to 15 sessions, the type of treatment, the therapist or both may need to be changed.”
While depression can almost always be treated successfully with medication, psychotherapy or both, coverage restrictions often interfere with effective treatment. Although the new federal mental health parity law will require plans to have annual and lifetime monetary limits that equal those for medical care, higher copayments or deductibles or tight caps on the number of visits to a mental health provider per year are expected to remain.
The fact that many people still don’t realize that depression is a bona fide illness also interferes with appropriate treatment. What’s more, some doctors fail to routinely look for symptoms, according to Isabel Davidoff, who directs the Depression Awareness, Recognition, and Treatment (D/ART) campaign at the National Institute of Mental Health (NIMH). The campaign aims to reduce the personal and economic costs of depression by alerting the public, health care professionals and the business community to the importance of early detection and treatment.
“A depressed person goes to the doctor but doesn’t say, ‘I’m in a down mood.'” Davidoff points out. “She says, ‘I’ve had terrible problems sleeping and I’m really tired a lot,’ instead, so the doctor prescribes a sleeping pill, and the person doesn’t get treated properly. Because the doctor has maybe 15 minutes with the patient, there’s not necessarily any probing of what could be wrong.”
Davidoff identifies still another barrier: the feeling that if you identify more cases in need of mental health treatment you’re going to up your health costs. “Since costs are already skyrocketing, many employers figure, ‘Let’s just forget about it,'” she says. “But in my estimation, that’s the ostrich approach.”
EARLY INTERVENTION THROUGH EAPs
D/ART’s National Worksite Program, a cooperative effort of NIMH and the Washington Business Group on Health, has proven the reverse to be true for major corporations. “An integrated human resources model for the management of depression is both cost-effective and people-effective,” says Davidoff. Employee education, manager training, use of employee assistance professionals for crisis intervention, recognition and referral; case management and return-to-work support; easy access to affordable, appropriate care; and data collection on prevalence, cost, treatment outcomes and attitudes about depression are the key elements of such an approach.
First National Bank of Chicago, which recently merged with NBD Bank, added an integrated program about a decade ago. Over five years, inpatient mental health spending dropped 59 percent while total spending for mental health rose by just 3 percent. “Mental health care costs for the indemnity plan for First National Bank of Chicago continue to be less than 7 percent of total costs,” says Wayne N. Burton, MD, corporate medical director. “Before we began the program, mental health comprised 15 percent of the total.”
The progressive drop in mental health spending has occurred, Burton adds, “despite the fact that we offer one of the most generous mental health benefits in the country.” There’s a $2 million lifetime limit, “just like for surgery, plus employees who go through our EAP and receive care in our preferred provider organization get 85 percent coverage for the first 12 visits with no deductible.”
NIMH’s Davidoff is an advocate of EAPs. EAP professionals can teach supervisors how to talk to people whose performance and personal behavior are not what they should be, she-says, and help people get the assistance they need. They’re also in a position to influence policy, by pointing out that a high deductible for behavioral health treatment is counterproductive, for example.
UNDERSTANDING OF CFS INCREASES
Some firms are finding an added dividend in programs that target depression: They’re stemming the fallout from CFS, fibromyalgia and other elusive maladies.
Sara Lee Corp., headquartered in Chicago, developed an integrated behavioral health program after learning that 44 percent of the employees at one division accounted for 77 percent of the antidepressant prescriptions. The program involves EAPs and primary care physicians, and teaches workers and management about depressive symptoms. “We’re working with PCPs in our main HMO to establish a depression screening protocol,” says Diana L. Murray, senior manager of group insurance. “So no matter if the patient complains of a headache, back ache or stomach ache, there will be an effort to find out if depression is a component.”
The approach takes advantage of the overlapping character of conditions like CFS and fibromyalgia. “This way, neither is seen in isolation,” Murray says. “It also ensures that employees aren’t getting a lot of treatment for head, stomach, or back aches while their depression goes undiagnosed.” Once depression is treated, she has found, other symptoms often become less severe or disappear completely.
According to the CDC, “any licensed physician should be able to diagnose CFS,” a condition that has never been reported to cause death. However, the CDC favors diagnosis by the process of elimination.
Pressure put on the federal government, medical profession and health plans by consumer advocates has led to more reliable diagnostic and treatment indicators for CFS. A peer-reviewed article in the Annals of Internal Medicine details the six-month criteria and the accompanying symptoms and notes: About half of chronic fatigue sufferers have been found to have a defective immune system, characterized by a low number of a specific type of white blood cells. Lab work to look for the defect can be ordered as a single test, typically identified as a chronic fatigue panel, that costs about $300.
The CDC takes a different approach. While it recommends a thyroid test, it advises against tests for viruses such as Epstein-Barr or immune deficiencies, which it considers expensive and non-definitive. MRI and other radiologic scans should not be used routinely either, only when needed to rule out specific brain disease.
But exclusion of a host of other diseases is the most important part of a chronic fatigue evaluation, according to CDC guidelines. These include major depression and anxiety, lupus, cancer, endocarditis, hepatitis, syphilis, AIDS, anemia, diabetes, and diseases of the thyroid, heart, lungs, liver, kidneys, gastrointestinal tract and endocrine system. Since many of these disorders can be treated appropriately following diagnosis–and progressive or even fatal if left untreated– the CDC says it’s “absolutely imperative” that a thorough medical evaluation precede a CFS diagnosis.
A recent clinical trial at Johns Hopkins revealed another possible marker: a fairly common and treatable blood pressure abnormality known as neurally mediated hypotension. Tilt-table testing, available at most hospitals, is the only means of positive diagnosis. Many CFS patients test positive for the condition and respond to treatment, and further studies are under way.
Fibromyalgia can be even more elusive. “Although there have been many abnormal laboratory and other tests reported, none is sufficiently sensitive or specific to be useful diagnostically,” says David A. Nye, MD, an Eau Claire, Wis., authority on the disease. “Therefore, routine studies are not recommended.”
There is a way to determine who has fibromyalgia, however: Specific areas of soft tissue pain, known as tender points, tend to show up in characteristic locations. Finding pain in at least 11 of the 18 points supports a firm diagnosis. “It is not possible to accurately diagnose fibromyalgia without knowing how to do a tender point examination,” says Nye.
A careful medical evaluation of an employee with this type of chronic symptom— one that specifically considers depression, CFS and fibromyalgia–often leads to effective treatment. And it needn’t be excessively costly. For CFS, the standard of treatment is to relieve symptoms, according to the CDC. It typically begins with the universal prescription for good health: adequate rest, balanced diet and moderate exercise. The CDC notes that nonsteroidal anti-inflammatory meds can be useful for treating headaches and muscle and joint pain, and antidepressants may help those with depression. The CDC cautions against the use of potentially life-threatening and unproven treatments like methotrexate and hydrogen peroxide injection.
Nye’s recommendations for treatment of fibromyalgia are much the same; indeed, some researchers believe that the two syndromes are closely related. But he also suggests medication to improve deep sleep, since there is evidence of a likely link to a sleep abnormality. “At least 75 percent of fibromyalgia patients become at least 75 percent better with treatment,” he asserts.
Patients with symptoms of chronic pain and insomnia may also benefit from relaxation techniques, meditation, hypnosis, biofeedback and cognitive-behavioral therapy. The National Institutes of Health has found scientific evidence supporting the effectiveness of all these techniques in relieving chronic pain.
OUT OF WORK OR ON THE JOB
While colleagues and disability reviewers often find it hard to accept that seemingly vague aches and pains actually leave some employees unable to work, experts say the questionable diagnoses of these elusive syndromes are an unlikely choice for malingers. One reason is that an illness like fibromyalgia or CFS must reach handicapping proportions before a worker qualifies for federal disability payments.
Peter Carroll, chief underwriting officer of group disability insurance for CNA Insurance, suggests that companies with a high volume of such “subjective” disability claims organize a special multidisciplinary team. Typically, they’d include rehabilitation nurses, disability specialists, independent medical consultants and psychologists who review claims, press for diagnoses and make the proper disability determinations.
“An effective disability management program,” he notes, “incorporates prevention, early intervention, case management and disability insurance.” Ongoing communication with the employee’s physician is the key to developing appropriate treatment and a return-to-work protocol.
Despite employer fears of the high price of accommodation, workplace adjustments normally needed to keep a CFS or fibromyalgia patient on the job are relatively simple and inexpensive: ergonomic chairs with arm rests, frequent breaks, flexible schedules and parking spaces close to the building. Deeply rooted attitudes, contend affected workers and many disability specialists, are often the biggest obstacles to be overcome.
In their own words
People with these elusive conditions responded to an Internet invitation to tell employers how to support affected workers and discourage malingers. Heres what they have to say:
“Employers willing to work with people with fibromyalgia will find that, in most cases, they are very hard workers. But because regular sleep patterns are very important to them, they cannot deal with rotating shifts. FMS people also need adjustable chairs, wrist pads for computer keyboards, phone headsets if they do a lot of phone work–and an attitude that allows them to make a contribution in a way that works for both the company and the person.”
“Almost anyone who fights this battle very long is bound to be labeled a malingerer. It’s really hard because you don’t a/ways want to be bringing your illness up at work, but in today’s competitive environment any significant lack of productivity shows.”
“If I were an employer who knew that some employees were chronically ill, I would try to accommodate them with such things as flex time and a possible shift to project-oriented, rather than schedule-oriented, work. Home work is also an option that might allow many of us to be productive again.”
“I have inflammatory arthritis, osteoarthritis and fibromyalgia. Although my supervisors act supportive, I have had to assert myself to get the help I need. I generally need to take off at least one day a month due to my illnesses. Other times, with extended flare-ups, I have had to use vacation time or take days off without pay.”
“I had to fight long and hard to get an ergonomically designed chair, which has reduced some of my back problems. Another secretary and I had to fight even longer to get ergonomic keyboards and adjustable keyboard drawers.”
“With fibromyalgia, my body thinks it’s 90 years old and frequently leaves me bedridden when I’m really only 40. I have three children and a mortgage, and losing my job would be devastating.”
“I have severe fibromyalgia and arthritis and have been in a wheelchair for eight years, though I’m only 25. It’s important that colleagues understand that while you might not complain all the time, you do have symptoms all the time. It is also very important to stress that just because there is no clear physiological test for fibromyalgia doesn’t mean nothing is wrong. It took me three years to convince my family and doctors that I wasn’t making it all up.”
Elusive illnesses at a glance
Clinical depression is a mood disorder. It is not a normal reaction to life’s difficulties, not a personal weakness, and more than a simple case of the blues. It is characterized by feelings of sadness, emptiness or anxiety almost every day and a diminished interest or pleasure in almost all activities. Other signs include:
Significant weight gain or loss
Feelings of hopelessness, pessimism
Feelings of guilt, worthlessness, helplessness
Thoughts of death or suicide
Chronic aches and pains that don’t respond to treatment
Source: Agency for Health Care Policy and Research
CHRONIC FATIGUE SYNDROME
CFS is a clinical condition characterized by chronic weariness and fatigue unrelated to physical stress and unrelieved by proper rest. Patients are easily exhausted by even mild activity, and in severe cases, are wheelchair-or bed-bound. Diagnosis requires elimination of other causes of fatigue, such as anemia, malignancy and a variety of infectious diseases. Other symptoms include:
Impaired short-term memory or concentration
Tender lymph nodes
Muscle or multi-joint pain
Headaches, especially changes in severity or type
Malaise lasting more than 24 hours after exercise
Source: Centers for Disease Control and Prevention
Fibromyalgia syndrome (FMS) is an underdiagnosed disorder characterized by aching all over with no causal relationship to activity, strain or an identifiable illness such as rheumatism or arthritis. Its most distinctive indicator is a number of tender points, or painful sites. Others include:
Paresthesia (abnormal prickling or burning sensation)
Source: David A. Nye, MD
Full Text COPYRIGHT 1996 Medical Economics Publishing Company