Here's a great article written by Oncology Times about the NLN Conference and the Lymphedema Treatment Act Bill.
Tuesday, September 09, 2014
ONLINE FIRST: Lymphedema Conference
Stresses Need for Better Education, Medicare Coverage of Compression Supplies
BY
PEGGY EASTMAN
WASHINGTON—After
years of languishing on the back burner, lymphedema is now being recognized as
an increasingly important health care issue, according to speakers here at the
11th National Lymphedema Network (NLN) International Conference.
Speakers
and conference participants emphasized the need for better professional and
patient education; high-quality medical treatment for all patients at risk for
or affected by lymphedema; insurance coverage of compression supplies; and
expansion of the number of lymphedema treatment centers and certified
lymphedema therapists (CLTs).
Health
professionals are now increasingly aware of the importance of early detection
of lymphedema, risk reduction, and possibly prevention, said Kathleen Francis,
MD, Medical Director of Lymphedema Physician Services at St. Barnabas
Ambulatory Care Center in Livingston, NJ, who moderated a session on breast
cancer-related lymphedema detection and risk reduction.
Marga
F. Massey, MD, CLT, a surgeon, who is founder and Chief Participating
Investigator of the National Institute of Lymphology in Chicago, told OT that
she had taken time to complete a two-week course to become a certified
lymphedema therapist because she believes so strongly in the need for
high-quality lymphedema care: “Anybody involved with this patient population
should study lymphedema,” she said. “My vision is that every single nurse
should undergo CLT training.”
Lymphedema
Treatment Act (H.R.3877)
Conference
participants urged Congress to pass the Lymphedema Treatment Act (H.R. 3877),
which is supported by the NLN, the American Cancer Society, the Oncology Nursing
Society, Susan G. Komen for the Cure, and LIVESTRONG, among others. This act
would change Medicare law to allow coverage of the physician-prescribed
lymphedema compression supplies many cancer patients use daily, including
gradient compression garments, bandages, and devices such as reduction kits.
Currently,
Medicare does not cover these mainstay treatment supplies; the lymphedema
community hopes that if Medicare approves coverage of compression supplies,
other insurers will follow suit. The Act was introduced in January by Rep.
David G. Reichert (R-WA).
The
aim is to support patients’ adherence to their maintenance phase of treatment
by covering compression supplies and to reduce total lymphedema health care
costs by decreasing the incidence of complications, co-morbidities, and
disabilities resulting from lymphedema.
NLN
notes that many lymphedema patients cannot afford compression supplies, and
thus suffer from recurrent infections, worsening of their condition and
eventual disability. The Lymphedema Advocacy Group is leading the effort to
pass the Lymphedema Treatment Act, and conference participants visited Capitol
Hill to lobby for the Act’s passage.
‘Protect
the Limb’ Protocol
At
the conference, Massey presented results of a study on her proactive Protect
the Limb protocol, which seeks to lower patients’ risk of developing breast
cancer-related lymphedema (BCRL). In this study at St. Charles Surgical
Hospital in New Orleans of 2,966 consecutive patients, the patients underwent a
protocol of education and participative decision-making about breast
cancer-related lymphedema overall as well as on the sites for future at-risk
interventions such as venipuncture, IV catheter placement, and blood pressure
monitoring prior to the day of surgery.
The
patient education was given by a CLT and took two hours. “We hypothesized that
giving tools for patients to proactively participate in making decisions that
may alter their risk of developing BCRL would be a major contributor to patient
satisfaction with their hospital care,” she said. “In our practice we’ve used
lots of tools for patient education.”
Patients
were given copies of NLN position papers for home study. At a second meeting,
an 89-item questionnaire was administered by the peri-operative nursing staff
to determine a numerical BCRL risk score for each limb. That score was
translated into a risk-associated color code for each limb; the patients and
anesthesiologist then selected which limb(s) were appropriate for at-risk
interventions before any additional testing or procedures were done.
For
example, she said, red means “stop;” yellow means “caution” related to an
at-risk extremity; and green means “go” – that is, the limb is cleared for
procedures.
“All
patients who went through the Protect the Limb protocol said that that the
ability to participate in proactively determining how to reduce their potential
risk of BCRL prior to surgery was a major contributor to their overall
satisfaction in their hospital care,” Massey said. She and her team concluded
that “system-wide educational programs can be developed to educate patients as
to risk-reduction practices for BCRL.”
Asked
who on the breast cancer patient’s care team is responsible for patient
education on lymphedema, Massey said that job falls to everyone, but it should
be led by a certified lymphedema therapist: “I had to go and become a CLT so I
could educate myself,” she said. “Then I had to go and educate others in the
hospital. It was a relatively large task to get everybody on board.”
For
example, she said, anesthesiologists knew little about lymphedema. She added
that getting a buy-in from surgeons for a patient education protocol such as
Protect the Limb is “very hard, and takes effort.” Is it practical, though for
surgeons to take CLT training, as she did? “Why not?,” she answered. “It only
takes two weeks. No one has a fuller surgical schedule than I do.”
Prospective
Surveillance Model for Rehabilitation for Women with Breast Cancer
A
second noteworthy study at the conference presented the first report of
implementation of the Prospective Surveillance Model (PSM) for Rehabilitation
for Women with Breast Cancer, which is aimed at early detection of, and
intervention for, lymphedema.
In
this feasibility study at Grady Memorial Hospital, a large inner-city facility
in Atlanta, 100 subjects with Stages 0-III breast cancer received education
related to lymphedema risk reduction, treatment side effects, and the
importance of both early therapeutic range-of-motion exercise and ongoing
exercise habits. Each patient had a patient navigator.
The
lead author Jill Binkley, PT, MSc, CLT, Executive Director of TurningPoint
Breast Cancer Rehabilitation in Atlanta reported that about 35 percent of women
admitted to the two-year PSM study required further physical therapy
intervention, including lymphedema management. Early, mild lymphedema was
detected and treated in 18 percent of patients.
PSM
education helped to maintain a low level of lymphedema in the majority of
patients, she said, adding that the protocol “serves to empower women to
self-manage and to know when to return to us for further treatment.”
Differences
in Lymphedema Based on One or Two Mastectomies?
Another
study of 916 surveys from 229 women – conducted at Massachusetts General
Hospital – who had either a unilateral or bilateral mastectomy found no
difference in breast cancer-related lymphedema, based on an analysis of 355
mastectomies, between those who had one breast removed and those who had two
breasts removed.
There
were also no significant differences in mean arm function score and quality of
life, said lead author Meyha N. Swaroop, an investigator in Massachusetts
General Hospital’s Department of Radiation Oncology. Kathleen Francis, MD,
commented as moderator, “Since all of us are seeing more and more bilateral
mastectomies, this kind of information is very important to have.”
With/Without
Axillary Surgery
Finally,
another study from Massachusetts General Hospital of 348 breast cancer patients
over age 65 explored BCRL in those who underwent breast surgery with or without
axillary surgery. This study showed that in elderly patients, staging the
axilla with sentinel lymph node (SLN) biopsy compared with no axillary surgery
is associated with a similar risk of breast cancer-related lymphedema, as well
as similar postoperative complications and locoregional recurrence.
Therefore, said lead author Chantal M. Ferguson, the
decision to proceed with SLN should be based not on age but “on how the
pathologic nodal information will influence decisions regarding adjuvant
treatment.”
