April 1997
Volume 61 |
Number 4
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| MHAUS: Educating
Providers, Patients and Public About an Uncommon Disorder |
Henry Rosenberg, M.D.
The Malignant Hyperthermia Association of the United States
(MHAUS) was formed in 1981 with the goal of reducing death and
disability from this pharmacogenetic disorder of skeletal muscle
through education and provision of information to physicians,
patients and all others who care for those at risk for an MH reaction.
The association was, and continues to be, guided by a board of
predominantly laypersons and a medical advisory council consisting
of anesthesiologists and other experts in the clinical and basic
science of MH.
In the early 1980s, educational programs were limited in form
and scope to published material such as pamphlets, newsletters,
monographs, posters and special mailings. One of the first such
efforts was the production of a quarterly newsletter, The Communicator,
containing information of relevance to providers and patients
regarding MH. The Communicator has gone through many changes
in form and style, but basically continues to provide information
regarding MH as gleaned from the 2,000 or more calls on the MH
hotline, reports from the literature and the North American MH
Registry, meetings and conferences, and questions and problems
posed by patients.
In order to ensure that the appropriate protocols for the management
of MH were in place in operating rooms, pamphlets and posters
advising how to diagnose and treat MH were created by the professional
advisory council. These posters were distributed freely at professional
meetings and conferences throughout the United States and abroad
as well as by mail.
MHAUS and the Registry rent exhibit space at national meetings
as another means to disseminate the latest information. This affords
the MHAUS staff the opportunity to learn firsthand how the needs
of the anesthesiologists are being met in regard to the management
of MH. However, since MH does not affect large numbers of people
in any one area and because of conflicting schedules, conferences
were of limited value in reaching the patient community and not
always cost-effective.
The patient conference program began to take a different approach
in the 1990s. Patient conferences are now organized in conjunction
with meetings of anesthesiologists, and MH experts are asked to
donate a few hours of their time after the regular meeting to
hold a patient-oriented and sometimes a physician-oriented conference
as well. Even though the audience might be small, the expenses
are drastically reduced. For example, a successful patient conference
was held in September 1996 following the International MH Workshop
and Symposium in Minneapolis, Minnesota.
In the 1980s, the need for standardization of diagnostic tests
for MH became evident. A series of conferences attended by biopsy
center representatives from the United States and Europe led to
standardization of testing procedures as well as the development
of information concerning sensitivity, specificity and predictive
value of the test. Another outgrowth of these meetings was the
creation of a clinical grading scale for diagnosing MH.
As the 1980s progressed into the 1990s, the cost of education
via alternative approaches became less prohibitive. In particular,
videotaping of experts discussing MH or MH-related issues were
produced, including a round-table discussion by international
experts, a grand rounds videotape and an in-service videotape
for treatment of MH that provides continuing medical education
credits. With support from the voluntary donations to MHAUS as
well as support from pharmaceutical firms, these high-quality
videotapes were distributed via the mail and at scientific exhibits.
Audiotapes are particularly useful and cost-effective for longer
length educational programs. Following a death from MH and inquiries
from risk managers about MH (e.g., what precautions can be taken
to avoid MH entirely or to treat episodes as efficaciously as
possible), an educational audio program was created for risk managers.
Prominent members of the risk management community as well as
MH experts drawn from the anesthesia community contributed their
time and expertise to this effort.
With the advancements of the computer age, it has become possible
for MHAUS to provide information on an even larger scale, reaching
larger audiences with less expense. With the help of Keith Ruskin,
M.D., founder and administrator of GASNet™,
there are regular postings on the Internet about MH, including
pamphlets, posters and The Communicator, making them accessible
to all parts of the world linked to the Internet. In the future,
it will be feasible to have videotapes and other multimedia programs
available to all via the World Wide Web. MHAUS is finalizing a
Web page which, by the time of this printing, will be accessible
to Web browsers. The address is: <www.mhaus.org>.
The Web page will contain the publications and newsletters produced
by MHAUS, important telephone numbers of other MH organizations,
frequently asked questions related to MH and other materials as
they become available.
Other MH organizations have already created Web pages, including
the MH Association of Canada, the MH Association of Japan and
the European MH Group. Some anesthesiology departments have information
concerning MH as part of their Web sites as well.
Of course, e-mail has become a must for all organizations in
order to keep in contact with their constituencies. MHAUS' e-mail
address is <mhaus@norwich.net>.
Another method of communication that is now taken for granted
as a way of life is the fax machine. Letters, manuscripts and
documents are faxed regularly across the world. However, the fax
provides other opportunities for transmittal of information. In
1995, MHAUS initiated a fax-on-request program. By accessing the
toll-free fax number (800) 440-9990, a caller can request fax
copies of written material related to MH. This technique provides
immediate access to a broad range of publications and material
in the MH database.
One of the most valuable services provided through MHAUS has
been the MH Hotline. Telephonic communication via a hotline is
not new; however, the MH Hotline is one of the longest standing
free services of its type. The hotline was established in 1983
and provides valuable information to the caller as well as MHAUS.
The hotline consultants, who volunteer their time and expertise,
record the content of calls on special data sheets. Later, the
calls are sorted in a database and analyzed for trends and new
presentations. It was through the hotline calls that the issue
of MH-like reactions in patients with occult myopathies was first
detected and appreciated as a problem. Very soon, hotline consultants
will be able to record the contents of their consultations on
an electronic record, which will then enter the data directly
into a database, thereby eliminating the tedious steps of handwriting
interpretation and sorting.
The Internet also provides a means for experts to communicate
and discuss subtle MH-related issues. Again with the help of Dr.
Ruskin, a limited, members-only, MHAUS-hotline consultant discussion
group was created. The hotline consultants can thereby share questions
and comments regarding challenging cases and questions and seek
advice from others. With about eight MH hotlines throughout the
world, the discussion group now includes hotline consultants from
other countries. Of course, for reasons of confidentiality, information
about the caller, the patient and the city or state of origin
of any hotline call is never revealed in these discussions.
Eventually, it is our intent that hotline data from all sources
will be downloaded into a common database, giving investigators
even greater amounts of information regarding the epidemiology,
inheritance and presentation of MH.
Future plans for enhancing the educational programs of MHAUS
and the MH Registry include conferences for patients and physicians
via the Web, telephone conferences, presentation of videotaped
programs related to MH and an updated MH bibliography.
In 1994, The North American MH Registry merged with MHAUS. The
Registry accumulates data specific to MH patients and their relatives.
Currently, data are entered into the Registry's computer from
paper-based data sheets completed by the referring provider or
patient. Plans are being developed to gather Registry data via
secured e-mail or disk in order to facilitate the chore of data
entry.
Access to the Registry data is carefully secured, but when approval
for release of data is granted, the information will be downloaded
in the future to the physician in need of the information. One
scenario where such information may be valuable is when a patient
who requires emergency surgery recalls that a family member sustained
an MH episode. The information on that episode may be provided
from the Registry directly to the provider's computer.
Finally, electronic databases consisting of accurate descriptions
of MH episodes, biopsy findings in families and construction of
family pedigrees are needed to unravel the molecular genetics
of MH. Oftentimes, family members are widely scattered, may experience
MH episodes at different times and in different places and may
have biopsies performed in different centers. Electronic communication
and searching of databases will make it possible to produce MH
family pedigrees. Invasive (e.g., muscle biopsy) or less invasive
(white blood cells) means of harvesting DNA from well-characterized
family members will be useful in characterizing the genetics of
MH.
In the information age in which we now live, the challenge increasingly
is not so much to find the information, but to know how to evaluate
the information for accuracy and applicability as well as to merge
information from multiple sources in such a way as to learn from
these sources and to gain insight into the biology of diseases,
common and uncommon. It is an extraordinary time and requires
new ways of thinking and learning. Our aim is that MHAUS and the
North American Registry continue to meet the needs of patients
and the anesthesia community for timely, accurate and useful information.
Henry Rosenberg, M.D., is Professor of
Anesthesiology at Allegheny University of the Health Sciences,
Philadelphia, Pennsylvania. He is Vice-President of Medical Affairs
for the Malignant Hyperthermia Association of the United States.
E-mail the author.
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