What does it take to educate people about Malignant Hyperthermia (MH)?

It is hard to believe that a year has passed since I stopped working for MHAUS and started to teach writing at the college level. So, when I was invited to write a blog about my experience working for MHAUS as Scientific Officer (from 2007-2012), I thought, that might be fun. I would actually get a chance to write. Funny thing is, although I am now an instructor of writing, I haven’t written nearly as much as I used to! Well, that’s not exactly true. But what I write and develop is different – lesson plans, exercises to reinforce writing skills – you get the picture. But a casual blog, written to reinforce a message that I want to share with the MHAUS community – now that would be different!  So, I willingly accepted, and got right to it. 

Well, I did get right to it, but then I did what my students do….I procrastinated. I just couldn’t figure out what I wanted to say. What sort of meaningful information could I contribute about MH? I’m no expert on MH, that’s for sure. I have not dedicated my career to solving the mysteries around MH and related disorders, nor do I care for MH patients (in a clinical sense!) for a living. My job responsibilities as Scientific Officer for MHAUS boiled down to sharing current information about MH with the MHAUS constituency (and to do this, sometimes it was necessary to procure additional funding).  Sounds pretty straightforward, right? Well, there were definitely some hurdles.

Off the bat, I was surprised to find out that some people actually believe MH is a problem already solved. In fact, when I first started working for MHAUS, I was approached at a meeting by a health care professional who wondered why MHAUS even existed! MH is a rare disorder, he noted, and if, by some small chance, symptoms are triggered in a susceptible individual, he/she can effectively be treated with dantrolene. Surely all operating rooms across the U.S. have this antidote on hand, so what more needed to be done for such an uncommon disorder? Well, to start, what needed to be done was to change this mindset! It is just this type of thinking that limits progress and puts people’s lives at risk.

• If we don’t work to fully understand the basic molecular mechanisms behind MH, including why certain patients may be at risk for MH or MH-like symptoms, we may never reach a goal of 0% mortality due to MH.
• If we don’t’ continue to learn about and increase awareness of the non-typical presentations of MH, we risk the unnecessary loss of lives.
• Finally, if we do not continue a dedicated effort to ensure the availability of updated medical information, expert medical guidance, and dantrolene to manage emergency situations, we may lose even more patients.

As I thought this through, the message that I wanted to reinforce through this blog became obvious to me. After nearly 5 years working to communicate the ‘latest and greatest’ about MH, I learned a little bit about what it takes to educate people and advance our knowledge about MH. I would therefore like to share a few things I have learned:

• Outreach efforts must continue – Yes, there are many hospital operating rooms across the country where staff are fully prepared with expert medical personnel, MH treatment guidelines, and dantrolene supplies. But there are also health care facilities – small community hospitals, ambulatory and office-based surgery centers, dentist offices, urgent care clinics – where information about MH or the required amount of dantrolene supplies are lacking.  In addition, increasing numbers of surgical procedures are being performed in free-standing surgical centers located at some distance from an affiliated fully-equipped hospital setting. Minutes count when it comes to MH emergencies. Treatment delays cannot be tolerated. Every facility must be prepared.

Further, we are learning that MH may not always present in an operating room setting, triggered by inhalation anesthetics. Children and adults alike have experienced MH episodes due to exercise or heat stress. Quick identification and diagnosis, by emergency room and urgent care personnel, of the symptoms of a possible MH episode in such patients will send them down a treatment pathway with a greater chance for a successful outcome.  Thus, MHAUS must continue its efforts to reach out to health care facilities and professionals to educate them and raise awareness about MH.

• Communication is key­ – Of course, education of health care personnel with regard to MH can be accomplished through various forms of communication, whether it is scholarly journal articles, an educational piece designed to ensure first responders develop MH preparedness plans, or seminars at clinical conferences. But communication and education efforts must not be limited to the health care profession. These days, patients must take charge of their health care and help their doctors to identify risk factors for MH (and for many other disorders). MH-susceptible patients must communicate their risk to all who care for them clinically, and they must pass on this information to their relatives so that they may be appropriately assessed as well.  A conversation about a grandfather’s unexpected high fever during surgery could one day save the life of one of your family members!  MHAUS must therefore continue its efforts to educate not only health care professionals, but also patients and families about MH, and to engage them in this true team effort in the name of patient safety.
• We must strive to identify connections, and collaborate, collaborate, collaborate! – We must take the time to ensure we are not working in a vacuum.  For instance, scientists suspect there are forms of MH triggered by exercise or heat stress.  Recent studies in animals serve to support this contention. Though we cannot ethically conduct a study in humans to trigger such episodes and test effective treatment methods, we may be able to utilize methods employed in the animal studies to detect certain signals preceding an MH emergent event in humans. But we will never get there unless research and clinical scientists communicate and share information, ideas, and data.

Another example – as we know, MH occurs due to an abnormality in muscle function, and this abnormality is linked to certain gene mutations which affect the normal contraction/relaxation response of muscle in susceptible individuals. Identifying which mutations put people at risk may shed light on the molecular mechanism behind MH as well as behind other muscle disorders. In addition, development of databases containing such gene mutation information can speed progress toward the utilization of genetic testing to identify individuals in the general population who are at risk for MH. This would be a giant leap from the current use of genetic testing to confirm MH susceptibility in individuals previously suspected to be at risk. But these potential connections can only be identified, and real progress made, if each stakeholder group - geneticists, clinicians, research scientists, patient advocate groups, and family members - communicate and share information.  It is therefore critical for MHAUS to work to provide opportunities for these collaborations to continue (such as sponsoring conferences and developing/maintaining databases), and to take an active role in sharing the results of these collaborations with others.

 So what does it take to spread the word about MH?

In summary, and I apologize ahead for the cliché, it really does takes a ‘village’ to educate others and advance our knowledge about MH.  Individuals with varying backgrounds and expertise must be willing to communicate, share information, challenge accepted practices, and ‘try on’ new ideas.  Only then will progress be made and will mindsets be changed about the disorder that is MH.