More is Needed for Women With HCM

A recent study published in the European Heart Journal by doctors from the Mayo Clinic showed that women with hypertrophic cardiomyopathy (HCM) have a statistically reduced rate of survival as compared to men with HCM.

To respond to this inequity, the doctors suggest that the medical system must improve at identifying HCM in the female patient population. Additionally, they propose a lower threshold for the referral of female patients for more advanced therapies.

The study compared by gender the data of 3673 patients (1661 women and 2012 men) who had an initial HCM evaluation at Mayo Clinic between 1975 and 2012.

The data showed that compared to men, women with HCM:

  • present with the disease at an older age;
  • are more likely to have the obstructive form of the disease;
  • have increased diastolic dysfunction;
  • are more likely to have worse cardiopulmonary exercise test results; and
  • are more likely to have pulmonary hypertension.

Strikingly, a female HCM patient’s risk of dying (from any reason – not specifically HCM) was about 6% higher than that for a man over a 5 years period and approximately 11% higher over a 10 year period.

The authors suggest several possible explanations for this discrepancy:

  1. Genetic and endocrine differences between males and females;
  2. Women with HCM do not undergo cardiac screening tests with the same frequency as men and therefore go undiagnosed and untreated longer than men;
  3. Women are less likely to be diagnosed with HCM during routine medical exams and are more likely to be misdiagnosed with hypertension instead of being accurately diagnosed with HCM;
  4. Women are more likely to be on medications for other conditions which could be blamed for vague symptoms; and
  5. Beta-blockers, which were associated with increased survival in this study, were less likely to have been prescribed to women by their referring doctors.

 

Editor’s Note:  As a female HCM patient who is included in this study, I can pretty confidently speak on behalf the other 1660 of us by voicing the hope that researchers identify and remedy any factors which contribute to worse outcomes in female patients.  In fact, we hope for equally good outcomes for all!

 

Guest Blogger – The View from a HCM Center – by Dr. Steve Ommen of Mayo Clinic’s HCM Center

Good stories usually have a protagonist who is confronted with a challenge or conflict.  The story then follows the protagonist’s journey to overcome that challenge.  Often, there are one or more attempts at conflict resolution which prove unsuccessful, or that even make things worse before the path to success is revealed. In the end, the best stories are those where that successful path was right in front of the protagonist the entire time.

The Challenge for HCM Patients: Local Cardiologist vs. Center of Excellence

For a good story related to the world of hypertrophic cardiomyopathy, you need look no further than Jill Celeste’s HCMBeat blog post entitled “Myectomy:  A Twice in a Lifetime Experience.” The protagonist in this story is obviously Jill.  The conflict is the impact of her HCM symptoms on her quality of life.  Her journey included unsuccessful forays into different therapies before finally, Jill arrived at the resolution of her conflict by seeking care at a medical center with dedicated expertise in the treatment of HCM.

In the sake of full disclosure, that center happens to be Mayo Clinic where I work.  Jill’s great storytelling reminded me how some really clever books and movies tell the same story from a different point of view. In this blog post, I would like to give you my point of view as a physician who directs a HCM specialty center of the best way that you can navigate your own HCM.  I will share how care by a “center of excellence” can fit into the bigger picture of your HCM care and give you some suggestions for ways to balance so you can work well with both your local care team as well as a specialty center that may be a long way from your home. Continue reading “Guest Blogger – The View from a HCM Center – by Dr. Steve Ommen of Mayo Clinic’s HCM Center”