Cover Story: A Needed Specialty

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October 2004

By Rich Smith

John Jordi, PTA, CMLDT, staff therapist for Siskin Hospital, assists a client with her lymphedema treatment.

Clinically speaking, lymphedema presents far fewer challenges to rehab providers than, say, stroke or spinal cord injury. However, from the perspective of the stage III lymphedema patient, the condition can be almost as disabling-and certainly every bit as dispiriting.

In the United States there are but two rehab hospitals equipped to deal with such cases on a comprehensive, inpatient basis. One of them, in Chattanooga, Tenn, is Siskin Hospital for Physical Rehabilitation.

With a total of 109 inpatient and subacute beds, Siskin Hospital offers specialized treatment programs in brain injury, amputation, stroke, spinal cord injury, orthopedics, and major multiple trauma. Opened in 1990, the hospital also provides treatment for neurological disorders, as well as for loss of muscle strength and control following illness or surgery.

Regarding lymphedema, only stage III patients are eligible for admission to the inpatient program. These are adults experiencing an alarming degree of swelling in one, some, or all limbs, plus extreme weight gain, which often robs them of mobility and renders them unable to care for themselves.

Once admitted, patients spend approximately 4 weeks receiving intensive services aimed at reducing swelling and restoring function.

PRIMARY CARE
The primary therapeutic intervention is manual lymphatic drainage. This highly specialized form of massage moves lymph fluid along prescribed channels and is performed once each morning and again at night by a physical or occupational therapist certified in the procedure. Each drainage session lasts about 90 minutes.

During treatment, patients undergo compression therapy and engage in therapeutic exercise. Wound care also is provided, as is ample education to help patients maintain progress following discharge from the hospital.

Now here is where the Siskin Hospital approach really shines. Throughout the inpatient stay, patients are seen by specialists in diverse fields whose expertise can address other conditions contributing to the severity of the problem. These specialists include dietitians, pain-management doctors, wound care nurses, psychologists, clergy, and others.

"We take a very holistic approach to lymphedema care," says Tod Cain, OT, therapy services director. "Each patient has an entire team of professionals involved."

Adds Linda Marshall, PT, CMLDT, lymphedema program director, "The team approach allows us to better meet patient needs, even if those needs are not related to their primary diagnosis. So, for example, if a patient informs us that she believes there's a spiritual component to her illness, we can easily arrange to include pastoral care. The same applies to patients who feel they could benefit from psychological counseling. Sometimes these and other services unrelated to the primary diagnosis are recommended by the team based on getting to know the patient and identifying needs she may have.

LOSS IS GAIN
Siskin Hospital's inpatient lymphedema program started 2 years ago, having evolved from a lymphedema outpatient clinic launched in 1999.

"We decided to accept inpatients after we realized that some of our outpatients with stage III lymphedema were having transportation issues," says staff therapist John Jordi, PTA, CMLDT. "Their limbs had become so enlarged that they could not easily make the trip here to the hospital. And some of these patients within our catchment area were faced with very long-distance travel to reach us."

It also became clear to Siskin Hospital that stage III patients' medical needs-which frequently were intensified by the presence of comorbidities-would be much better handled in an inpatient setting. Moreover, because of the chronic nature of the primary illness, these patients were seen as requiring more treatment time than could be managed at the outpatient clinic.

Then there was the reimbursement consideration. Insurance companies might not allow stage III outpatients access to adequate treatment. But inpatients would be another story entirely.

"We knew that payors would be more willing to reimburse for the variety of services we could bring to bear if there was an inpatient admission," says Cain.

When the inpatient program officially kicked off, it did so with just a single room assigned to it. As the program attracted patients, additional space was needed-and given.

"Fortunately, our hospital is large enough that it could accommodate our modest growth requirements," says Cain.

Likewise, the hospital had enough capital available to permit both start-up and subsequent expansion of the program.

"We have a budgeting process that takes into account opportunities for initiating programs during the fiscal year whenever a real need in the community is identified," says Cain. "So, when we were ready to start the ball rolling, the money we needed was there for us."

Some of those funds paid for acquisition of an infrared, noninvasive measuring device that records the circumference and length of lymphedema-affected limbs and then graphs the progression of fluid loss resulting from therapy.

"This device is much more precise than using a tape measure," says Jordi. "It measures in increments of as little as 5 mm."

Also, says Marshall, the graphic representation of the patient's limb and associated changes in fluid volume make for a powerful education tool.

"When we share the results with patients, this gives us a way to provide encouragement because they can see pictorially that they're losing fluids and making headway," she tells. "This is a lot more effective than showing them a log of numbers to convince them of progress. Basically, it's a great way to give them hope."

Giving hope turns out to be crucially important because, possessing it, patients are more inclined to buy in to their own care.

"Stage III lymphedema requires patients to be compliant with self-care once they return home, something they'll have to be diligent about for the rest of their lives," says Marshall.

HIGH COST OF COMPLIANCE
Postdischarge compliance amounts to possibly the biggest challenge confronting the Siskin Hospital inpatient lymphedema team.

"We want to make sure we're not seeing our patients back in through our doors with skin breakdown or a sudden increase in swelling as a result of noncompliance at home," says Marshall. "We want them to be independent."

The single biggest thing stage III patients can do postdischarge to control their lymphedema is use compression garments and bandages. Alas, these must be worn 23 hours a day. Getting patients to do that is tough enough. But then, add to it the cost of those garments, and compliance tends to evaporate. According to Jordi, compression garments for home use carry a price tag of about $60 apiece ($325 for the custom-made type used in the hospital) while packages of the accompanying bandages run in excess of $70. Garments typically must be replaced every 6 months; worn longer than that, they tend to fail.

"Medicare covers lymphedema therapy, but not the bandages or compression garments, and there are patients-seniors on fixed incomes in particular-who can't afford them otherwise," Jordi says.

Siskin Hospital-a provider that last year offered more than $1.5 million in charity care to financially struggling patients-tries to help with the expense of the compression garments. It operates a grant program for that purpose, which is funded in part by contributions from the staff (each year, Siskin Hospital employees raise thousands of dollars in donations through internal events and fund-raisers). But, as Jordi points out, grant dollars are limited and "don't stretch very far."

Thus, for some time now, Jordi and his colleagues in the program have been attempting to persuade Congress to change Medicare law to begin covering the cost of compression garments and bandaging.

"We've organized grassroots letter-writing campaigns to our representatives in Washington," he says. "We conduct a bi-monthly support group meeting for lymphedema patients, and at those gatherings we update the participants about what's transpired legislatively with regard to the Medicare situation since our previous get-together. If necessary, we issue additional calls to action.

"Legislative progress is always slow, and in our case nothing has yet come to fruition. Still, we have confidence that we'll get the changes we're looking for."

COMMUNITY WILL DECIDE
While garments and bandages may cost a pretty penny, evaluation for early signs of lymphedema does not.

"We provide free screenings here at the hospital," says Marshall. "Anyone who thinks they may have lymphedema can come in and be checked. This is publicized through our local newspapers and other media."

That is one way the program grows. Another is via a marketing outreach.

"We have a dedicated position in the marketing department-an outreach coordinator," says Siskin Hospital spokesman Katie Bowman. "Basically, her job is to develop relationships with referral sources."

Many of the stage III patients who find their way to Siskin Hospital-whether through publicity, referral, or pure happenstance-show up unaware of the true nature of their problem.

"They've been elsewhere for treatment and have been either misdiagnosed or undiagnosed," says Jordi. "Not surprising, since lymphedema isn't your typical diagnosis to begin with."

Admission to the Siskin Hospital inpatient lymphedema program requires a physician order. Usually, candidates for treatment are first screened as outpatients by Marshall or one of the other certified lymphedema therapists. If the case parameters seem within the hospital's scope of expertise and available services, the triaged individual is then sent to be examined by a staff physiatrist who looks for indications of medical appropriateness of admission. Once the patient is admitted, the lymphedema therapists review the case with that physician and begin pulling together a team of providers from the various disciplines.

Enough Americans suffer from stage III lymphedema or are at risk of developing it that a casual observer might wonder why more rehab hospitals have not yet initiated inpatient programs of their own.

"They may not have the same mix of elements that we have here," suggests Marshall. "For one, we're a multidisciplinary facility. That right off the bat gives us a strong network of support-and an open exchange of communication at all levels-for our patients. Others may not have this capacity."

Marshall suggests the reason for the dearth of similar programs elsewhere may be a lack of awareness among rehab providers as to just how big a role they can play in helping such patients. "As other hospitals gain understanding of the problem that lymphedema is in this country, I think we'll start to see at least a few open their doors to the stage III patient," she says.

\ In fiscal 2003, the Siskin Hospital lymphedema program reported two inpatient admissions and 57 outpatients. It has capacity to accommodate more of each, but just how big the program ultimately becomes may be difficult to predict.

"It'll be up to the community," says Cain. "The community will dictate how big it can get. If the need isn't there, we're not going to push for growth. If the need is there, we will. As an enterprise, we always go where the needs are. This is no exception."

About Lymphedema

Lymphedema¹ results from an accumulation of lymphatic fluid in interstitial tissue.

The accumulated lymphatic fluid produces swelling that can affect one or both arms, one or both legs, or any combination of the four. Occasionally, it affects other parts of the body.

The condition occurs in either a primary or secondary form. Primary lymphedema can develop when lymphatic vessels are missing or impaired. It is a condition to which victims are genetically predisposed.

Secondary lymphedema usually arises when lymph vessels are damaged or lymph nodes removed. Unlike the primary form, there is no genetic component to secondary lymphedema. It is acquired as a result of surgery complications, radiation exposure, infection, or trauma-even a trip aboard a pressurized jetliner might trigger onset in rare instances.

Stages I and II lymphedema are mild to moderate forms, respectively.

Stage III is severe lymphedema (also known as lymphostatic elephantiasis). Swelling is chronic, and usually limb size is quite large. Tissue is fibrotic and unresponsive. Sometimes, the accumulation of lymphatic fluid exceeds the body's lymphatic transport capacity. When that happens, an abnormal amount of the protein-rich liquid collects and stagnates in the tissues of the affected area. Left untreated, this not only causes tissue channels to increase in size and number, but also reduces oxygen availability in the transport system, interferes with wound healing, and provides a culture medium for bacteria that can result in an infection known as lymphangitis.

Untreated lymphedema in general also can lead to irreversible complications and even a rare form of lymphatic cancer known as lymphangiosarcoma.

Rich Smith is a contributing writer for Rehab Management.

REFERENCE

National Lymphedema Network. Lymphedema: a brief overview. Available at: www.lymphnet.org. Accessed August 11, 2004.

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October 2004