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What lies ahead for MHAUS

As we begin the New Year and the new decade, it is appropriate to review the accomplishments of the past year and look forward to what lies ahead for the next year(s). 

I am pleased to report that MHAUS did not share in the financial losses that many organizations experienced. This is due to the close oversight of our Board and Executive Director, as well as continued conservative investments managed by Leigh Baldwin and Company.  In addition, we were fortunate to have maintained our revenue goals thanks to all of our members and donors, as well as the significant contributions of a variety of pharmaceutical companies, especially JHP Pharmaceuticals, and the American Society of Anesthesiologists. Without strong financial support, we obviously cannot continue our current programs and develop others to meet the needs of the health care community and patients. 

Last year I listed as one of our goals, the development of guidelines for transfer of care of a patient who develops MH in a non-hospital setting, but needs to be transported to a hospital for further treatment. As you may recall, this effort was stimulated by several deaths from MH that developed in an outpatient setting. We are coming into the home stretch of this project. The project has involved collaboration among anesthesiologists, emergency medicine physicians, EMTs, specialists in ambulatory anesthesia and the Ambulatory Surgery Center Foundation and necessitated lengthy and complex discussions.  Once the guidelines met everyone’s satisfaction, they were posted for public comment on various web sites. The comments have been reviewed and the guideline adjusted as appropriate and sent to the group to determine the final look for the guideline. I expect this important patient safety guideline will be available within weeks. It will provide suggestions and advice on how to minimize and, hopefully, reverse a possible bad outcome from MH, when a patient has to be moved from an ambulatory center to a hospital. 

Another project that has recently concluded is a step-by-step guide for operating rooms on how to conduct a preparedness drill for MH. The final product will be called the “MH Mock Drill Kit” and includes a guide for creating a drill, reminder cards for each member of the OR team as to their personal role when an MH crisis occurs. With the help of the Anesthesia Department at Wake Forest University School of Medicine, Dr. Joe Tobin, Chairman, the drill includes a video presentation of an actual MH drill.  

One of the reasons that we embarked on this project was that we began an in depth analysis of our “customers”, i.e., who is contacting us for information and what are they asking for. It turns out that a large proportion of the MHAUS audience is comprised of operating room nurses, nurse educators, post anesthesia care nurses and nursing administrators. They want to make sure they are fully prepared to prevent a death from MH and realize that this requires a yearly drill to make sure that everyone knows what they need to do. In addition, several of the accrediting organizations are now requiring an annual MH drill. 

MHAUS was honored to receive an invitation from the largest health care accreditation organization in the US, the Joint Commission (formerly the Joint Commission for Accreditation of Healthcare Organizations). They invited us to submit a detailed section on MH preparedness in ASCs in their Handbook entitled, “A Patient Safety Handbook for Ambulatory Care Providers”.  The book can be found through a search of the Joint Commission website at www.jointcommission.org. 

MHAUS sponsored two successful patient/provider conferences, one in Oklahoma City, organized by Dr. Mo Shukry, one of our hotline consultants, the other in Latham NY, organized through the MHAUS office staff and Brenda Williams of the New York State Nurses Association. We videotaped interviews of some of the conference attendees and presenters for future posting on our website. Stay tuned. 

Speaking of video projects, I recently recounted on video the history of MH and the history of MHAUS from my vantage point.  I began the narrative by describing my attendance at the first international workshop on MH in Toronto, Canada in 1971, organized by Dr. Beverly Britt. (incidentally, my first airline trip.)  Over the past four decades I have witnessed tremendous progress in our understanding of the disorder at the scientific and clinical level, which I describe in the interview.   I will also be giving a presentation on the history of MH at the annual meeting of the Anesthesia History Association in Winston-Salem, NC in early April. (http://www.anesthesia.wisc.edu/AHA/). 

Another highlight of the year was an innovative interactive teaching session for anesthesiologists at the annual meeting of the American Society of Anesthesiologists. With the assistance of Dr. Meir Chernofsky of the Uniformed Services University of the Health Sciences, an anesthesiologist and guru on simulation, we held a simulation session whereby anesthesiologists played the role of a hotline consultant, fielding simulated MH calls. We hope that this exercise will lead to the development of simulation training program in MH in order to enhance knowledge and skills in dealing with the disorder and differentiating MH from other conditions that may resemble MH. 

We are also finalizing a new publication that incorporates information from our many brochures into one place in order to make it easier to find complete information on MH recognition and treatment plans, which had been previously found across multiple brochures. 

Another goal I enunciated last year was the development of a tissue repository for muscle specimens that were harvested during muscle biopsy for MH. This tissue bank will be a source of specimens for researchers interested in investigating the genetic and biochemical changes that occur in the muscle of MH susceptible patients. This has been a formidable undertaking since there are many regulations surrounding the handling and storage of human tissue. Our goal, however, is to develop such a repository in association with the North American MH Registry of MHAUS (NAMHR). 

These accomplishments took place against a background of our usual activity. Such as several thousand hotline calls, the quarterly newsletter, The Communicator, our bimonthly e-newsletter, and thousands of calls that are handled by the staff at the MHAUS office. Maintenance of our web site, www.mhaus.org and our Facebook page is also essential to our mission. There are over 1,300 fans on our Facebook page from all over the world. Our web site receives over 2 million “visits” each year from many different countries.  

The NAMHR has also been active this year. Earlier in the year, the Registry moved into new and expanded space at Mercy Hospital in Pittsburgh. The space was generously provided by the hospital and would not have happened without the active support of hotline consultant, and Chairman of Anesthesiology, Dr. Andy Herlich. The Registry has been a source of information for several publications and numerous abstracts including information on the molecular genetics of MH, the epidemiology of MH, and the clinical presentations of MH. Another significant event occurred in October 2009 when the prestigious journal, Anesthesia and Analgesia, published the proceedings of the Society of Pediatric Anesthesiologists meeting in May 2008 where several of our hotline experts discussed the relation between muscle disorders and MH. The collection of articles will be the definitive collection of advice and understanding of the association between MH and other muscle disorders. We have compiled the articles into a small monograph and will be available for purchase from MHAUS.            

We are also beginning work on projects for the coming year and beyond.  We will be focusing our efforts on recruiting Canadian patients and providers to membership in MHAUS in order to keep them abreast of the latest MH related information.  To this end we have exhibited at the Canadian Anesthesiologists meeting in Vancouver in 2009 and plan to do the same at the 2010 meeting in Montreal. We made contact with an anesthesiologist who deals regularly with MH-susceptibles at his facility and are working on details of a patient conference in Canada (see also my blog of July 2009).  We are working with the distributor of Dantrium® in Canada, Methapharm, who is graciously translating much of our material into French. We hope to fill the void related to MH information left when the MH Association (of Canada) folded a few years ago.                                                        

In keeping with the rapid advances in information technology we will be posting more and more interactive videos and presentations regarding MH on our web site. 

On April 23-24, 2010 we will be offering a comprehensive symposium on all aspects of MH. Dr. Barbara Brandom, the Director of the North American MH Registry of MHAUS, along with Dr. Jerry Parness, Dr. Victor Scott, Sharon Dirksen and I are arranging what will be an in-depth review of all aspects of MH.  The meeting will take place in Pittsburgh and will include a close up look at the NAMH Registry offices. For more information consult the MHAUS office or go to the MHAUS website to register and please share the availability of this scientific conference with your peers, they may wish to join us.  The meeting will be open to all who wish to attend, but will be focused primarily on the science and clinical care of patients with MH. CME credits will be offered. 

Meanwhile, we continue to keep a close eye on the advances in genetic testing for MH.  By sequencing the coding region of the ryanodine receptor gene it seems to be possible to identify up to 70% of all those who are MH susceptible.  However, there are other genes that are involved in MH that have to be identified and worked into the diagnostic testing. This is an international effort involving centers in Europe, Australia, New Zealand, Brazil, Canada and the U.S.  

One of the long-term goals that I have for MHAUS is the development of a training program for health care providers in the recognition and treatment of MH. This program will be a “hands on” activity using manikin simulation.  These simulators have become part and parcel of training health care professionals and are available at most teaching hospitals and universities. MHAUS would develop a detailed curriculum consisting of cases of MH and other cases resembling MH. After completing the course, the attendees would be certified in the management of MH. In order to meet rigid educational standards this course would require careful thought and planning with pilot demonstrations at various simulation centers.  

Finally, although I would like to end this blog on a positive and upbeat note, the year ended with yet another MH tragedy. A 40-year-old healthy patient undergoing a three-hour minor surgical procedure in a hospital setting developed MH at the conclusion of the operation. The syndrome progressed rapidly and the patient expired despite receiving dantrolene. After the event, the patient’s family told the providers that the patient’s brother had died in another country following anesthesia, probably from MH. Why the patient did not relay the information to his providers is unclear, perhaps it was because he was fearful that he would be denied anesthesia if he related the history. The hotline consultant and all of us are sometimes humbled by how rapidly and dramatically MH can progress with fatal results. It reminds us that anesthesia providers must always be on the lookout for MH and assure the team will work efficiently together to manage the syndrome. In this case, the patient’s body temperature was not being monitored during anesthesia. Perhaps it would have helped in early detection (see my blog of December 2009). 

We have worked hard at MHAUS to make sure as is humanly possible that all anesthesia providers as well as all who care for surgical patients know how to recognize and treat this potentially fatal syndrome, but clearly there is more work to be done. 

We also continue to provide guidance and support for patients and their families who are either at risk for MH or have been diagnosed with MH.   

We hope that the coming year will mark further progress in defining the entire spectrum of presentations of MH, both in the operating room and outside the operating room.  We also hope that no patient will experience harm as a result of MH.

The mission of MHAUS is to promote optimum care and scientific understanding of MH and related disorders."

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The mission of MHAUS is to promote optimum care and
scientific understanding of MH and related disorders.