Doctors need your help in caring for fibromyalgia patients
Doctors need your help in caring for fibromyalgia patients
The challenge is to get payers to pick up the tab
Rheumatologists and the medical community in general are becoming increasingly willing to accept the diagnosis of fibromyalgia. However, many physicians find it frustrating to treat those patients, who typically present with pain in several parts of the body, fatigue, and difficulty carrying out activities of daily living. Because their condition is chronic and prone to frequent flare-ups, there is the constant problem of making an appropriate referral. That problem leaves an opening for rehabilitation hospitals that would like to provide a needed community service while establishing a new niche market.
"Doctors are very happy to find someone who can help them with fibromyalgia patients because they become frustrated in dealing with the long-term symptoms and ups and downs of the patients’ complaints," says John Kraus, MD, MMM, chief medical officer at Bryn Mawr Rehab in Malvern, PA.
Rehab Continuum Report offers the following case studies of two new, formal fibromyalgia programs at St. Francis Hospital in Greenville, SC, and Bryn Mawr Rehab:
St. Francis Hospital had been treating fibromyalgia patients as part of the hospital’s rehab program, but hospital officials found that most physicians in the community were not aware the hospital had a program geared toward people with that disorder, says Amy Malcomb, MHR, business development coordinator for St. Francis Health System.
"We didn’t market it, although it was on a list of services we provided," Malcomb says.
The hospital decided to expand the fibromyalgia program and promote it among physicians, starting in August 1999. As a result, the program had about 12 patients during its first few months.
Bryn Mawr Rehab has had a chronic pain management program for nine years. Last August, the rehab facility launched a special program for fibromyalgia patients.
Fibromyalgia patients need to be treated differently than other chronic pain patients because they often have physical setbacks after strong exertion, Kraus says. "The difficulty in treating fibromyalgia is with setting limited goals because those individuals already know they are dealing with something that is lifelong or very long term, and they know that exercise or activity sometimes will increase their symptoms," he explains.
"There’s no question that many people with fibromyalgia who try to get on with their normal pace of work are burdened by pain all over," Kraus says.
Therapists have to lower their goals and expectations with fibromyalgia patients, and they should emphasize having patients pace themselves, says William Burkett, OTR, clinical supervisor of Bryn Mawr Rehab Works of Bryn Mawr Rehab. The freestanding rehab facility is part of the Jefferson Health System in Malvern, PA.
"The fibromyalgia group tends to fatigue very quickly," Burkett says. "Our more aggressive pain management program was too difficult for fibromyalgia patients."
That was one of the main reasons Bryn Mawr decided to start a separate program with specific goals geared toward fibromyalgia patients. The program focuses on goals that can be achieved without depleting the patients’ energy.
Such a program is relatively easy and inexpensive to start, Burkett says. Here’s a quick look at how Bryn Mawr Rehab and St. Francis Hospital implemented their programs, with some guidelines on how other rehab facilities can follow their example:
• Assess need. Many rehab providers already have treated patients with fibromyalgia, myofascial pain syndrome, or chronic fatigue syndrome. Because fibromyalgia is a subjective diagnosis, patients may have similar symptoms and treatment protocols with any of those three diagnoses.
St. Francis Hospital and Bryn Mawr Rehab already had been treating those patients, so it was easy for their administrators to see the need for a special fibromyalgia program. However, rehab facilities that have not been receiving referrals for those types of patients first might survey referring physicians to see how great the need is for a fibromyalgia program.
• Write protocols. St. Francis Hospital uses treatment protocols that can be individualized according to patients’ needs, says Teresa Woodard, PT, director of rehabilitation for the 218-bed hospital, which has 19 rehab beds.
Internet has many sources on the condition
Woodard researched the Internet and other sources to learn as much as she could about fibromyalgia. The American Occupational Therapy Association Inc. in Bethesda, MD, and the Arthritis Foundation in Atlanta also have information on the condition. Woodard also attended a fibromyalgia conference in South Carolina and followed up on references provided by speakers at the conference. (See fibromyalgia resource information, inserted in this issue.)
"Then I pulled together a team of people, and we reviewed the literature and put together a good protocol," she says.
The team included staff from the disciplines of physical therapy, occupational therapy, psychology, nutrition, and recreational therapy. They created a protocol that has two main features: an acute flare-up program and a lifestyle management program.
"The flare-up management part is traditional with physical therapy, and it’s modality-based and geared toward getting the patient’s pain under control," Woodard explains. "The lifestyle management part is about teaching patients what fibromyalgia is and how it’s affected by sleep, stress, and diet."
Patients’ progress depends on how quickly they meet treatment goals. For example, before a patient is given aerobic exercises to practice, a therapist will make sure the patient has performed all the active exercises without suffering from a flare-up, she explains.
The lifestyle management protocols also call for a multidisciplinary approach that helps patients manage their stress, nutrition, and exercise routines. Typically, patients with acute flare-ups are seen several times a week for two to four weeks. The lifestyle maintenance program may last 10 weeks, with patients seeing therapists twice a week.
Bryn Mawr Rehab’s program consists of treatment two to three times a week for up to six weeks. Unlike the pain management program, the six-hour fibromyalgia evaluation is broken up over several days, Burkett says.
First, patients receive a 60-minute physiatric evaluation. "The doctor goes through inches of medical records to make sure all tests have been done and to confirm diagnoses," Burkett says.
Because fibromyalgia is a very subjective diagnosis, the physiatrist will make sure the referring clinician has not overlooked a symptom that could signify a different disease or disorder. Then patients have a two-hour physical/occupational therapy screening in which therapists check musculoskeletal and functional status, looking at how long patients can sit, stand, and walk, as well as determining which positions exacerbate pain and discomfort.
Psychology a major role in treatment
Next, patients meet with a clinical psychologist. The psychologist looks at family dynamics and changes in roles in employment or in the family, and then assesses how patients are adjusting to those changes. Also, the psychologist asks patients about sleep patterns and pain levels and administers patient personality and psychosocial adjustment tests.
"After the evaluation process takes place, treatment modalities are developed," Burkett says. Those may include strengthening and stretching exercises, body mechanics, pacing, aquatics, psychotherapy, biofeedback, stress management, and other treatments.
One important part of the fibromyalgia program is a focus on energy conservation. An occupational therapist works with patients to teach them about pacing and how to avoid flare-ups.
"Fibromyalgia patients have good days and bad days, and on a good day they may go out and do as much as they can that day because they don’t know how much they’ll be able to do the next day," Burkett explains. "Then they will overdo it and have to spend the next few days in bed."
OTs teach patients how to pace themselves and how to move in a way that conserves energy. They also show patients how to rearrange their daily tasks to make their lives much simpler.
Fibromyalgia patients also are given psychological treatment to help them develop coping skills and the ability to manage their condition.
The program next focuses on how patients can continue the exercise, diet, and stress management routines after they are discharged. "We put them on the right track and get them to think about joining a fitness program," Burkett says. Therapists encourage patients to stick with a lifelong maintenance program.
• Market to referral sources. St. Francis Hospital markets its fibromyalgia program directly to physicians. The hospital’s marketing representative, who is a physical therapy assistant, handles all parts of the rehab/ortho/neuro product line, focusing particularly on marketing the hospital’s outpatient rehab programs.
The representative visits doctors’ offices and meets with physicians or their office staff to discuss the disorder and to give them new brochures that detail the program’s features. The brochures are geared toward patient education and provide physicians with a list of fibromyalgia services.
Bryn Mawr Rehab markets its program to a variety of referral sources, including physicians, consumers, and a fibromyalgia support group. The facility has a nurse who markets the program to physicians. It also has a Web site that can be accessed when people type "fibromyalgia" into a search engine.
"We’re marketing our fibromyalgia program to consumers more than just about any other condition," Burkett says. "We also do consumer mailings that are sent to thousands of people within the health system."
• Convince payers to reimburse services. Reimbursement is the largest obstacle to providing a fibromyalgia program, although Bryn Mawr Rehab and St. Francis Hospital have developed some strategies that address the problem.
At St. Francis, all of the billing so far has been therapy-based and coded that way, so reimbursement hasn’t been a major problem, Woodard says. "We haven’t billed anybody based on the entire program. It’s all individual sessions — we don’t have a package program cost." However, the program doesn’t provide specialized psychology, nutritional, or recreational therapy services that might run into reimbursement snags.
Bryn Mawr Rehab’s fibromyalgia program has encountered some reimbursement problems, Kraus says. "The biggest stumbling block is insurance carriers because it’s a chronic problem, and they’re much more cautious about approving treatment. So we have to focus on very specific goals and what we want to accomplish with a patient within a specified time frame."
For example, the program won’t propose ultrasound treatment three times a week for six months. Instead, it focuses on teaching patients about their condition and how to control their pain. "Hopefully, the insurer will recognize the goals the patient’s achieving and will see how it helps the patient reduce the need to return to doctors frequently and rely on medication, which will ultimately reduce the cost," Kraus says.
The other problem is that insurers frequently balk at paying for the psychological treatment. "They say if it’s emotionally related they won’t pay for that," he explains. "They say they’ll pay for the physical treatment."
Bryn Mawr deals with those funding issues by seeking other sources to pay for the psychological and stress management services. For instance, a local office of vocational rehabilitation might kick in some funding if a patient is looking for work and might be able to return to work, Burkett says.
Workers’ comp not yet convinced
A fibromyalgia program also is a tough sell to workers’ compensation plans, which are not comfortable with paying for a condition that might not have been triggered by a patient’s work-related injury. Bryn Mawr has received some workers’ compensation cases after a person’s low-back or other injury isn’t resolved and escalates into a sleeping disorder and chronic pain, and the worker still can’t return to the job.
"The workers’ compensation arena feels like they’re responsible for your low-back injury and only what relates to the injury site," Burkett says. "They won’t pay for the psychology stuff or medications to help you sleep."
Rehabilitation facilities will have to work with payers and modify their fibromyalgia programs to increase insurance coverage, Kraus suggests. Providers have to give patients their best treatment within the parameters of what they can provide and what’s reimbursed, he adds.
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